The Autism Experience

Hope and Happiness

2011-11-08T14:14:00.000-08:00

When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy.’ They told me I didn’t understand the assignment, and I told them they didn’t understand life. - John Lennon

This will be my last post at The Autism Experience. That is probably not too surprising, considering that I haven't posted anything here in almost two years. As I look back on the posts in this blog, I can see anger and frustration in my words. But I also see something else - hope. And that is how I want this blog to end - with a message of hope...and happiness.

A lot has happened since I last posted:

My daughter Helena made it through her first year of middle school, and the transition was not nearly as bad as I had feared. It's not to say that everything was rosy, but I think it could have been much worse. 7th grade is going well so far...

My last few posts prior to this one talked about bullying at the school that had become front page news. Well, this year the school initiated an anti-bullying program to great fanfare. I guess time will tell how effective it is. I still feel that bullying is taken too lightly, meaning that I think some people don't realize that the smallest things can hurt people.

And puberty has arrived! Something else to add to the mix...

In one of the first posts on this blog, I talked about baby steps, and how I can look back and see the progress Helena has made, even if that progress is at a slower rate than one would like to see. I can see that now, just in the three years since I started this blog. Issues? Yes, there are plenty of issues of course. She is still routine-oriented - do not ask her to get dressed for school before she has breakfast! Socialization is still a problem, and probably always will be. As will dogs, and riding a bicycle (she fell off a bike when she was five and has never gotten over that fear of falling). But all of these issues are not nearly as big as they were before. So things are getting better - baby steps.

But autism still remains... and that is something that Helena will have to live with the rest of her life. But it is not going to stop her from living her life, from fulfilling her dreams, from being happy.

One of my favorite TV shows is Extreme Makeover - Home Edition. Every night it is on (now on Friday nights), my kids and I snuggle together in front of the TV to watch not just a new house being built in a week, but a spotlight on an amazing and deserving family getting the house. And not just the family, but the local community too, which bands together to help this family in need. My kids also watch because they know I tear up during every episode, beginning right as they let the family know they are there to build them a new home.

On October 28, they featured the McPhail family from Oregon. Lindsay and C.J. McPhail started a chapter of the Sparrow Program - a program where schools "adopt" a child with medical or other special needs, and do community service - fund raisers and such, to help that child and their family. The program was a huge hit, and the McPhails devote much of their time to it.

Then their first child was diagnosed with autism.

And then their second.

And now the family who helped so many others needed help of their own.

They did their research. They adopted the GFCF (and soy free) lifestyle (which was wonderfully played up on the show). They took over an old 1950s house in the country to give their children the sensory experiences of nature. Lindsay began working with other moms in her community, offering their homestead as a place for exercise for the moms (and a playcenter for the kids). T

he house, of course, was ill-suited to raise their family. Which is where Ty and the gang come in. The new house is beautiful, and does its best to the needs of Lindsay and C.J. and their three children. I think I'd cry every night if I saw the words of encouragement and love they see in their bedroom.

But, as much as this show was about the McPhail family, as well as the Sparrow program, it was a show that focused on autism. A visit to sensory rooms at a local hospital led to design elements in the house that would help with sensory stimulation for the kids, as well as quiet spaces for when they were overstimulated. As I mentioned, they played up the GFCF lifestyle nicely, including presenting a GFCF cookbook to Lindsay with recipes created by local chefs in Oregon. They featured the need for storyboards to help the children stay on routine, and the labeling, with pictures and words, of different storage places in the kitchen.

I've read some reviews of the show on Extreme Makeover's Facebook page; most people were pleased with the show. But of course, there were some that thought the amount of money used to build the house would have been better used to provide better therapies for more children (which of course is not the point of the show). And then there was the curious comment about the McPhail's two children on the spectum - "I don't see the disability."

That the McPhail children are on the spectrum was obvious to me. They are a lot like my daughter Helena.

That this person cannot see a disability is maybe due to the fact that there isn't one.

My daughter Helena is not disabled. Yes, she is a high functioning child on the autism spectrum. Yes, she has issues in social situations and mannerisms that can at times be inappropriate. Yes, she has special needs. But by no means is she disabled. She can do anything that anyone else can do - but sometimes, she does those things a little differently, and it takes her a little longer to get there.

On Extreme Makeover - Home Edition, they usually bring in a celebrity guest or two to help with the build. This week, with the focus on autism, they brought in the most well known autism advocate in the world, and my (and others) biggest inspiration for hope - Temple Grandin.

When Temple Grandin was featured on 60 minutes on October 23, Lesley Stahl had this to say: "I always wanted to interview Temple Grandin. She's one of those rare people with autism who can explain autism. She's a sort of interpreter of autism for the rest of us."

Temple's autobiography, "Thinking in Pictures," is a must read for anyone who has to deal with autism in their lives.

Temple Grandin does not want to be cured of her autism. In her mind, the world has always needed people like her in it.

I know there are a lot of people who disagree with Temple on that last point - they want their child to be cured. And I respect and understand that.

But when it comes to my child, I agree with Temple. I don't want her to be cured.

For all the trials and frustrations that autism has caused, it has also molded her. It is a part of her playful and wonderful personality. It has helped shape her imagination (hard to believe we were ever told she didn't have one). And I can see her making her mark on the world someday, just like Temple Grandin.

Or Albert Einstein.

Or John Denver.

Or Daryl Hannah.

Or jazz prodigy Matt Savage.

Or any other person who has not let an autism spectrum disorder get in the way of living a full and productive life.

I began this blog with my all-time favorite quote from Robert F. Kennedy:

Some men see things as they are and ask "Why?" I dream things that never were and say "Why not?

And I end this blog with the quote that began this post, by John Lennon:

When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy.’ They told me I didn’t understand the assignment, and I told them they didn’t understand life.

My Helena has dreams just like any other child. Three years later, she still wants to be a teacher when she grows up. She dreams of a family, and children of her own. I dream with her, and will whatever I can to help her achieve her dreams.

But more than anything, when Helena grows up, I want her to be happy. Because that is what life is all about.

And autism will not stand in the way of fulfilling that dream.

Close to Home - Fourth Update on bullying at Hellgate Middle School

2010-02-17T09:59:00.000-08:00

I live on a one-way street that's also a dead end. I'm not sure how I got there.

- Steven Wright

It's been a while since I wrote about the bullying that went on at our middle school. If you will recall, en eighth grade boy with autism was bullied to the point where his parents felt the need to pull him out of school, with the school officials seemingly unwilling to intervene. The story made the front page of the local paper and sparked a firestorm that prompted the Superintendent and the School Board to adopt measures to address the situation.

You can read my previous posts on this situation:

Part 1
Part 2
Part 3

This is what has happened since last November:

The local chapter of the National Coalition Building Institute came in and did workshops for each middle school grade. They also worked with the district staff. On February 18, they will hold a workshop for parents called "Raising Children Who Care About Themselves and the People around Them" As listed on the Hellgate web page, This interactive workshop will help parents learn effective skills when confronted with prejudicial questions, comments, and actions.

It is my understanding that this will be the last involvement of NCBI at Hellgate. The district staff will be dealing with anti-bullying programs in the primary and intermediate buildings.

Also, each building at Hellgate established parent-advisory committees. I cannot speak for how the middle school decided who would serve on their committee. I do know that in the primary school, the principal solicited volunteers to serve.

In the intermediate school, where my two older children attend, the committee was hand picked by the principal, unless you called and expressed interest. No general call was issued. I find this to be really disturbing, and a way to "pack" the committee with "yes" people.

I was unable to attend the last two school board meetings, so I am not really sure how much was discussed with regards to bullying. I have checked the minutes of the January meeting (the February minutes are not posted as of this writing), and all that was mentioned for the January meeting was that the PTA was working with NCBI to do the parent training occurring February 18. Was this all that was said? Who knows. These notes tend to be generic, and tend to leave out some things that occur.

My suspicion is that the School Board will hear the results of the NCBI parent training at the March 8 meeting.

And that will be the end of it. The school will have addressed the bullying issue, in their opinion.

But will that opinion be shared by the parents of the Hellgate School System? Personally, I think the parents need to know what future measures, if any, the school district will do - one set of lectures and programs will not make the issue go away.

There are also two instances of kids with autism being pulled out of Hellgate because of bullying that have been made public. Will anything be done to address this? Remember, Hellgate has focused on bullying as a whole, but not necessarily how it affects the unique special education culture. Perhaps they talked about this at the February Board meeting...

One can only hope.

IEP Day

2010-01-20T04:17:00.000-08:00

When you have come to the edge of all the light you have
And step into the darkness of the unknown
Believe that one of the two will happen to you
Either you'll find something solid to stand on
Or you'll be taught how to fly!

- Richard Bach

Today is IEP day.

It's not like we've haven't been through this before. I mean, Helena has had IEPs since she was 3 years old.

But this one is different. This is for 6th grade.

Middle school.

A new building. A new principal. New teachers.

Not only that, but a middle school that has a reputation, thanks to the bullying of a boy with autism that was front page headlines of The Missoulian.

The school addressed, from their perspective, the bullying situation from the bullying standpoint. But, from my perspective, I don't know if they've addressed it from the autism and special needs standpoint. I guess I'll find that out today.

There are some positive things going forward. Helena seems to work well with the SLP and OT, and those relationships will continue into the middle school. Over the last couple of months, she's been evaluated for PT as well, so we will see if that will be part of the plan.

But how will they work with her socially? How will we, as her IEP team, ensure her safety in this new environment?

Fortunately, this is January, and middle school doesn't start for 9 months. And, as with all IEP meetings, NOTHING will be signed today. This is really only the beginning, in so many ways. Maybe that's why I feel strangely calm about this meeting today.

I also have to believe that The Missoulian articles perhaps opened the door a little more, and there will be more vigilance when it comes to watching out for the special needs children in the middle school. At the very least, it has raised the awareness of me as the parent of a soon-to-be middle school child.

The great unknown of middle school doesn't seem so unknown anymore.

Time to make a plan to let Helena fly!

Why We Fight

2009-11-20T19:26:00.000-08:00

Don't give up. Don't ever give up.

- Jim Valvano

We had an IEP meeting at the school this past Tuesday. Those of us who have been through this process know that IEP should really be a four-letter word.

This wasn't a typical IEP meeting. A typical IEP meeting, by my definition, is one where the parents get together with the school officials each year and develop a plan to ensure that the child with special needs gets the assistance needed to receive a free and appropriate public education in the least restrictive environment. We had this meeting for Helena back in the Spring.

No, this was the IEP meeting you have when things are not going right and need to be changed. A parent, or the school for that matter, can call an IEP meeting at any time to discuss their concerns about the child, with the hope of rectifying the situation. It's the kind of IEP meeting you should never have to call, because it's an indication that the special education program at the school is failing your child.

It failed the parents of Pat Fuglei. They called an IEP meeting to address their concerns about his bullying, yet they still felt compelled to pull Pat out of school because the Hellgate school district did nothing to alleviate their concerns. And they got thrown under the bus in a public meeting for doing so.

The Individuals with Disabilities and Education Act (IDEA), the Federal Law that is the basis for the IEP process, has been in existence for well over 30 years. Yet even to this day, the majority of parents with special needs children can all recount at least one instance where they have had a major IEP disagreement with a school. I'd like to think that things have improved since IDEA was promulgated in the 1970s, but given some of the things I have heard or read lately, I am not so sure.

There's only one thing for us parents of special needs children to do. We have to fight.

Why do we fight? Let me count the ways...

We fight because situations like Pat Fugleis and the ASD child who was bullied out of Hellgate last year, where according to the parents the school never intervened until the police were called, are not isolated. A recent survey in Massachusetts found that 88 percent of the respondents, parents of children of autism, said their children were bullied, with over 50% saying their children were hit, kicked, or chased, and only 32% saying the schools adequately responded to their complaints about bullying. Here is link to the Boston Herald article about the survey.

We fight because students are not the only ones doing the bullying. Across the nation, special needs students are routinely physically restrained by teachers and school staff - some 18,000 cases at least in Texas during the 2007 - 2008 school year. Students are suffering physical and emotional injuries, even death. One school's response: they have "tougher special education populations than their peers." Here is a link to the Texas Tribune article about this horror.

We fight because students are not the only ones who are being bullied. On October 7, 2009, the California Dept. of Education held a conference where a well-known anti-parent advocate was paid thousands of dollars to instruct attendees from school districts across California on how to not provide special needs children the services they need under IDEA, yet make it appear like they are doing so. When an attendee asked how they should respond to a parent requesting a service they did not offer, the speakers response was "Just sue the parents." Here is a link to the Examiner.com article about this atrocity.

We fight because some bullies are allowed back in school. Wendy Portillo, the teacher in the Port St. Lucie (FL) school system who was suspended for having 5-year old special needs child Alex Barton voted out of the class by his classmates Survivor-style, was recently reinstated by the school district, and will now teach 6th grade science and reading. The school board vote on her reinstatement was unanimous. Just what we need, another middle-school bully. Here is a link to the Autism News article on this deplorable action.

We fight because situations like these occur every school day in this country. Some get media attention, the vast majority don't.

Most importantly, we fight because we love our children, and we want the best possible educational experience for them, to prepare them to have the best possible future.

And we won't give up until that goal is achieved.

We won't ever give up.

Close to Home- Third Update on the Bullying of an ASD Child at Hellgate Middle School

2009-11-13T16:44:00.000-08:00

...it does not require a majority to prevail, but rather an irate, tireless minority keen to set brush fires in people's minds...

- Samuel Adams

(note - for more information on this story, please read my first two posts on this issue - #1 and #2)

When I was a graduate student at Florida State University in Tallahassee, I lived in an apartment with a very dangerous intersection nearby. When it rained (which it does often in Tallahassee), most of the time an accident would take place at this intersection. One time, after I had witnessed a particularly gruesome accident where the right front wheel of a car was literally pushed all the way into the passenger seat (seriously injuring the passenger), I called the highway department to see if there was any possibility that a traffic light could be installed at the intersection. Their response: we usually install traffic lights at intersections where there has been a fatality.

That story keeps playing through my mind as I write. There is a lot in common between that situation and the bullying situation at Hellgate Middle School - both involve problems that were well known by officals who could have taken action to rectify the situation, but actions would only be taken after a tragedy occurs, or, in the case of Pat Fuglei, had occurred.

This past Monday, at the regularly scheduled meeting of the Hellgate District School Board, the superintendent summarized a plan of action that had been initiated just a week before in response to the bullying incidents involving Patrick Fuglei, an ASD 8th grader whose parents felt compelled to pull him out of school after being bullied for the better part of two years. This plan of action came about rather quickly, considering it was just two weeks ago that Patrick's story first appeared in The Missoulian, and just a week ago that the School Board (on November 2) held a special meeting in response to that article, essentially to get out their side of the story. Parents were notified of this plan just a day after that meeting.

Here is what the Hellgate School District is going to do:

They have contracted with the Missoula Chapter of the National Coalition Building Institute (NCBI), a non profit that works with organizations such as schools, law enforcement agencies, etc. to develop programs that stress inclusion and a reduction in violence, particularly in schools. NCBI will start by offering workshops for the middle school students and a professional development class for district staff which will also serve as a needs assessment to provide direction for future work. NCBI will also offer training and assessments for parents as well.
The school district policies will be posted on the web page in an easily searchable format so parents can find information easily.
Teachers, principals, and counselors will continue to research anti-bullying practices at other school districts nationwide.
The superintendent also advocated for school-based parent advisory councils in each building (K-2, 3-5, 6-8).

This last development was particularly interesting because, as someone told me, the idea of parent advisory councils has been proposed in front of the school board before, only to be discouraged by this very same superintendent. So now we apparently have a complete 180 on this issue. I requested at this meeting that an additional advisory council should be set up for special education. Based on the phone message the superintendent left on Tuesday summarizing Monday's actions, this request must still be "under consideration."

One parent praised the superintendent and the school for taking steps in the right direction, but then asked about disciplinary procedures. The superintendent outlined a typical hierarchical process where you talk to the teacher, and if the teacher gives you no satisfaction then you go to the principal, and if the principal gives you no satisfaction then you go the the superintendent, and if it makes it to the superintendent, than he assured us that he would launch an investigation into the matter. He even told an anecdotal story about an ASD child who was being bullied, and the bullying was brought to his attention. He immediately contracted (as he put it) with the Special Ed. coordinator, who investigated, and reported out her results, and the situation was resolved.

This is interesting too, considering that at the November 2 School Board meeting, this same superintendent stated that in his almost 10 years at Hellgate he had never had a call about bullying.

This also raised the ire of one parent whose ASD son was bullied out of Hellgate last year. She rose and asked the superintendent why, if he investigates all incidents that are brought to his attention, did he not investigate her son's incident until after they got the police involved. The superintendent was speechless, then stated that he could not recall her son's specific case, but assured the woman it was investigated. This woman and her husband, by the way, had followed all school policies and procedures with regards to bullying.

Another issue brought to the attention of the school board at this meeting was the case of N.B. vs. Hellgate Elementary, in which the 9th Circuit Court deemed that a child was denied procedural rights under IDEA by not evaluating the child to determine whether the child was autistic, thus denying the child a free and appropriate public education. A parent asked the school board to disclose the cost of defending that lawsuit, but the district's attorney reminded everyone that this was a public comment session, and not a question and answer session.

With the exception of this parent, all the other parents who spoke had their questions answered.

The Missoulian covered the School Board Meeting, and you can read their article here. The reporter covering this story also this week wrote a poignant guest column about standing up to bullies, which you can read here. While I won't share them as I have before, as always reading the reader comments in response to the article is always insightful.

Many people I talked to have praised NCBI and their work, and it is probably a good thing to have an outside entity come in and assess the situation. But is NCBI's involvement, as well as the other reactionary actions the school district adopted, enough? Probably not. It certainly is not enough to address the needs of the special needs children - the fact that Pat Fuglei is a child with autism continues to be ignored in this process.

There will not be another school board meeting probably for another month. That means another month for the incident that precipitated this discussion, as well as the other incidents that have been brought forward since, to fade from the collective conscience of the community. It's up to us, the parents of this school district, to make sure that does not happen, to keep setting brush fires in peoples minds.

Alone

2009-11-12T09:04:00.000-08:00

To be alone is to be different, to be different is to be alone.

- Suzanne Gordon

My heart broke at 8am this morning. Again.

There she stood, my oldest child, on the playground. I had dropped her off just a few minutes prior, and as I made my way out of the school grounds, I went by the playground again, and watched her.

Standing there. No other child within 50 feet of her. All alone.

And I cried all the way to work, wondering why it has to be this way.

I realize that there is no one on this earth that loves her and cares for her more than my wife and I. But does anyone else really care at all?

Sometimes I think people look at her as a number. First she was 1 in 500. Then 1 in 250. Then 1 in 166. Then 1 in 150. And now she's 1 in 91.

She's high functioning, so some groups that should be helping her ignore her - I guess she's just not autistic enough for them.

And sometimes I think certain people believe she is just a process they have to follow, a Federal Law with which they have to comply.

It's hard for her, and frustrating for her. Autism makes social interactions a challenge, but that doesn't mean she doesn't want to interact socially. And even when she says she wants to be alone, I really wonder if that's what she really means, or if that is how she thinks it has to be, because that is the way it's been.

I don't want her to be alone. I don't want children to tell her to just "go away."

I don't want her to think it has to be this way, just because she has autism.

I believe in my daughter. I know she has hopes and dreams, and I know she can achieve them, autism be damned.

But I also know that it will only be through the perseverance of my wife and I, and our love and belief in our daughter, that this will be possible. That's why we continue to fight, and continue to advocate. And the road is full of bumps like this that need to be and will be overcome. And every time we make it over a bump, we get stronger, and the road gets smoother.

But sometimes, those bumps really hurt, enough to break your heart.

Close to Home - Two Weeks Later

2009-11-06T20:52:00.000-08:00

God forgive me for having thought it possible that a schoolmaster could be out and out a rational being.

- Sir Walter Scott

It's been almost two weeks since the first story appeared in the Missoulian about the 8th Grade boy with autism who was bullied to the point that his parents removed him from the school. This story has really struck a nerve in Missoula, especially in the Hellgate School District where this incident took place, and where my ASD daughter will be attending middle school next year. I wanted to use this post as sort update on the series of events that has taken place since the initial article. A lot has happened in two weeks.

On October 25, this article appeared in the Missoulian about Patrick Fuglei,an 8th grader with autism whose parents removed him from school due to excessive bullying. It was the front page story in the Sunday paper, so you knew it would draw a lot of attention. And is has - it is still listed on the Missoulian website as one of the most read recent articles.

The reason this story was written was because the Fugleis, after removing their son from school, had asked the Hellgate administration to read a letter to the 8th grade students about the bullying of their son. The officials at Hellgate refused, so the Fugleis went to the paper, asking if their letter could be published as a guest column. The request was routed to the reporter, who was interested in doing a story on the situation. Thus, the October 25 story was born. It should be noted that the Fugleis did not seek out this story or desire to get their name on the front page. All they wanted to do was publish their letter in a forum where the 8th graders and their parents would have an opportunity to read it.

On October 27, the Missoulian published the Fugleis letter as a guest editorial. You can read it here.

On November 2, the Hellgate School Board held a special session to specifically discuss the bullying issue. But instead of acknowledging the problem and seeking to move forward to correct it, the district superintendent chose to lay the blame on the parents for not filling out the proper forms, following procedures, and directly contacting the superintendent. Then, one by one, all the principals of the school system stated that they never heard about Patrick Fuglei being bullied. When Patrick's father spoke, he asked the superintendent why he never heard from the school, and acknowledged that Patrick's case manager knew of some of the bullying incidents. This information apparently went nowhere, or at least it never went to the school administration, based on what they said. Many parents, including myself, rose to speak on the situation, most agreeing the Hellgate dropped the ball, and the efforts they presented at the School Board meeting to rectify the situation were not enough.

On November 3, the Missoulian published this article on the School Board meeting. Again, this was one of the lead stories on the front page of the paper, and is still listed as one of the most read articles online.

On November 4, The Missoulian published this editorial concerning the bullying situation at Hellgate.

As referenced in the November 4 article, the Hellgate Superintendent wrote this letter to the parents, which is posted on the Hellgate website and was left as a phone message to all Hellgate parents. There are actions being taken and committees being formed, but it seems to me that the only parental involvement is to be more aware of the school bullying policies and follow them. Sheesh...

When stories like this hit the media, it's always interesting to read the reader comments in response to the stories, and this case is no exception. The majority of the letters have been critical of how the Hellgate Administration and School Board have handled this situation, and rightly so. But, as always, there are always some very disturbing comments as well. Here is an unedited sampling of the reader comments to the stories reference above:

yet another chapter in the trials of being a kid in the public school system. i am glad that some action is being taken to rectify this situation, but what of the next time something happens like this? the issue of bullying, hazing, and manipulation is as old as any human interaction. there is no way to completely "fix" this behavior. there is also a school of thought that maybe this behavior should not be too quickly dispensed with, as it is part of the very human learning process that teaches us how to interact through out our lives. MOST of us are taught at an early age NOT to abuse others, and as the impulse to act against these teachings comes up, it is up to all of us, as parents and teachers, to redirect these energies to something constructive and show more understanding. this was as true from the beginning of human history as it is now. it seems to me that the problem isn't so much that there is intimidation and cruelty among school age children, as now there are more forms of recourse that might be used to make more of an issue of this than it really is.

It's sad to think that Pat has to leave his home and family to get an education. My grandson is autistic, is mainstreamed in school, and I worry very much about him as he grows older. He has the same problem of mirroring behavior to others to gain acceptance. Best wishes for success to Pat and his family. As for the bullies, it's times like this that I fervently hope for Karma, or at least, for a bigger bully to come along and give them what they deserve.

{in response to the first comment I posted} That would be true for most kids learning life's lessons,but this is a disabled child. It is just as big an issue for these kids to take advantage of an autistic child as it would be if they had pushed a kid in a wheelchair down the stairs. Different scars, but scars nonetheless.

Hellgate Middle School is responsible for the safety and well-being of its students. There is no excuse in allowing children and/or teachers for that matter to bully, taunt, torment, etc. another student. What actions were taken in regard to the students who tormented this student? Were they suspended? If not.........why not? The bullies are being allowed to get away with abuse. Why?
Every child deserves to feel safe and secure while attending school. That is the law. The school (if Pat is a special education classified student with an IEP) should pay ALL fees in regard to the private school that Pat will be attending. The parents should not have to pay a dime. That also is the law. The school drove Pat out by making his time there impossible. Pat is entitled to FAPE. A Free Appropriate Public Education (under Federal Special Education Law). Hellgate Middle School is NOT providing Pat with FAPE.

In the 70's, the laws were changed and all the kids, no matter their ability to learn, were thrown in the same classes. Doesn't matter if they can't speak English, if they are 8 years old and not potty-trained yet, if they spend their class time shrieking so loud the other kids get headaches. Doesn't matter if the teacher has NO training in helping special needs kids. Somehow, the teachers are supposed to teach all these kids at all these different ability levels, in the same classroom. Why? It used to be kids with college-potential were put into college prep classes. Kids with learning disabilities were placed in classes with teachers equipped to deal with these challenges, so they could progress at their own level, to whatever they were capable of progressing to. I think AMerica's gifted children have gotten short-shrift for years, and that's why we, as a nation, are falling far behind other countries academically. We can keep on attempting to give everyone an "equal" education, or we can recognize that the bulk of education money is not spent on educating future doctors and scientists anymore, and thats a total disgrace and dangerous to America's future.

All I have to say is that we all need to remember that every story has two sides. Seems to me that what we all have read is one-sided. Hellgate Elementary is one of the finest school districts in the state of Montana!

Amen. Its how it used to be. They {special needs kids} aren't "locked away, out of sight". Throwing special needs kids in a class room with everyone else is cruel. They can't learn at the same rate, and they can't learn by the same methods. They bring the whole level of academic instruction down to the lowest common denominator. Many autistic kids are brilliant, but communicate differently. Why would their parents not want the best for them? Why would their parents want them "ware-housed" in classrooms that are unable to help them achieve as normal a life as possible? We separate boy's football teams according to ability. Why wouldn't you want kids academically separated? Its no different than California's pathetic attempt to throw kids in the same classroom who babel away in a dozen different languages, then wonder why California schools have gone from the best on the plane to the worst in the nation.

This is a link to New Jersey's Anti-Bullying Policy. The Hellgate School should stop hiding their heads in the sand. http://www.state.nj.us/education/parents/bully.htm Parents, please band together and fight for your children's well-being and a safe school environment.

This is very disappointing for the city of Missoula. We should really be a state leader in all levels of education. We have the resources to bring in the best programs to ensure the children receive a high level of education. Special needs students deserve better than this. When you help the special needs, you help the entire school.

As a close friend of Patrick and his family I would like to applaud Bridget and Bruce Fuglei for the courageous act of opening up this very serious problem at Hellgate Middle school. I realize that their intention was to simply have a letter read to raise the awareness of the students at Hellgate Middle school and help them to realize how much pain bullying can cause, as well as the long reaching effects that bullying has had specifically for Patrick. Patrick is a very special child and not unlike other middle schoolers he simply longed to fit in. He has a big heart and he poseses his own unique intellect, for example he is capable of memorizing more information at one sitting than most of us can in a lifetime. He has grown up with my children and has always been kind and generous with his friendship. He is inquisitive and curious. Again Patrick is a very special boy, we miss him dearly. As the mother of a child who was not forced, as in this case, but who chose to move her 6th grader out of Hellgate Middle school due to unrelenting bullying, my heart goes out to the Fuglei family and especially to Patrick. I would also like to acknowledge the excellent educators who are a part of the Hellgate Elementary/Middle school system. Many played vital roles in my children's education and development. They truly care and give their all to the most significant of professions, that of teaching our children. My hope is that this will get resolved by taking the high road no matter how much work it takes. That there will be a long term plan to create a safe environment one in which all children can thrive and grow.

Ten years ago, I pulled my two sons from Hellgate Elementary. My boys are not autistic, but they did have health problems, which evidently is enough to make a child a target at Hellgate. At the time the Hellgate school administration was totally unhelpful to me as a parent. As others have commented, the school did not care to act to solve the problem. I am saddened to learn so many others have suffered similarly. But, I am very glad the Missoulian is covering this story. I hope the press will shine a very bright light on this ongoing travesty.

I am compelled to write because I, too, pulled my son out of Hellgate Elementary after ongoing bullying throughout his 6th and 7th grade years. After working with a couple of the teachers as well as the school counselor, I decided that it was time to take decisive action. I put him in a private school (which was no small undertaking, as tuition put an additional strain on my already strained budget). He thrived in the private school and is now a happy, healthy freshman at one of the public high schools in town. While my son does not have the challenges that Patrick has, he is a quiet, reserved, kind person and apparently those are signs of weakness to a certain type of individual who enjoys picking on someone who does not have it in him to fight back. We attempted to give our son the tools to fight back but I worried that, in doing so, we were teaching him that it's not okay to be who he is. After the decision was made to pull my son out of Hellgate Middle School, I sent an email to the superintendent of Hellgate Elementary as well as the principal, vice principal and counselor of the middle school advising them of the reasons that my son would not be coming back to school. I did not receive a response from one person. My son had enjoyed going to Hellgate Elementary from kindergarten through 5th grade but life changed when he began 6th grade. I can understand the pain that Pat’s parents felt in having to move their child but I applaud their very difficult decision to make the move rather then allow their son be the target of those bullies for one more day.

I was bullied at Hellgate Middle School over 20 years ago, it has affected my self-esteem. I send my kids to private school for this reason.

I too am saddened by the treatment that Patrick endured at the hands of these bullies and by the way this was handled by the school staff. There is no excuse for this type of behavior and yes someone, students and or staff should have stepped up and defended Patrick against this mistreatment. Although I have sympathy for Patrick and his parents and not knowing the entire story, It seems that Patricks' parents may be missing an opportunity to teach him a very important life lesson in all of this. By moving Patrick out of Hellgate and out of the state, what message are they sending him about standing up for himself? Sometimes it is better in the long run to stand and fight for what is right. As an old counselor once told me, during one of the darkest moments in my life, "No matter where you go, there you are." That is to say, that Patrick, as well as anyone else will always have to deal with their differences, regardless of what those are or where they are. I only suggest that he may have gained coping tools and perhaps a boost in self confidence had his parents found a way for them and him to stand up and fight for good. I do, however, understand if they felt unable to do that. My wish for Patrick and his parents is that they find true peace and acceptance in the future, best of luck.

As you can see, there is a little support for Hellgate, a lot of sympathy for Patrick and his family, and some people who just don't get it. It's also apparent that this is more than just Patrick Fuglei - many other parents have felt compelled to pull their children out of Hellgate due to bullying.

Bullying affects everyone, and should be addressed with the entire student body in mind. But let's not forget the special needs aspect of this situation. The Missoulian has done a good job of keeping that at the forefront, though I believe the Hellgate Administration and School Board view this as secondary to the situation. And that is unfortunate. Yes, any child can be bullied, but special needs kids, especially those with autism, are particularly susceptible because they lack the social skills necessary to cope with the situation, and most crave acceptance. Contrary to some of the above comments, we parents of special needs children have fought for years and years to have our children in the public school system, in the least restrictive environment, getting a free and appropriate public education. Abuse and bullying was not part of the bargain, nor should it ever be.

So what's next? The next school board meeting will be this coming Monday. The agenda can be found here, and aside from one small agenda item, there's not much on the agenda concerning bullying, or special needs for that matter. Could it be that Hellgate is sweeping this under the rug? We'll find out Monday.

As for me, I have written a letter to the school board, the superintendent, the principals, and the special ed coordinator voicing my concerns about how this situation is being handled, both in terms of bullying and special education. I received a polite reply from the superintendent and a personal call from Helena's principal. I also called an IEP meeting to discuss these issues in a formal setting. As a parent, I want to be part of the solution, if the school will allow that to happen. We shall see.

Please stay tuned.

Close to Home

2009-10-27T06:16:00.000-07:00

History will have to record that the greatest tragedy of this period of social transition was not the strident clamor of the bad people, but the appalling silence of the good people.

- Dr. Martin Luther King Jr.

There have been many tragic incidents involving children with autism over the past year. There was Adam Race, whose family was asked under court order to leave their church because people were complaining about his behavior. There was Casey Reilly, who was basically held back from obtaining his Eagle Scout badge by his Scoutmasters because of his autism. There was Alex Barton, who was voted out his Kindergarten classroom, Survivor-style, by his classmates through the encouragement of his teacher. There was the autistic boy who was slapped in the head by his teacher in Pittsburgh, and the teacher who gave autistic kids soda tainted with hot sauce...

This past week there was an article in the Great Falls Tribune about a teacher's aide in Great Falls MT who's charged with child abuse, allegedly running an autistic child's head under cold water to wake him up, making the boy eat his own vomit, and making him sit in his own feces.

It's all appalling, horrific actually, yet in some ways it's distant, because it's not your school, and it's not your child.

That all changed on Sunday, when the lead story in our local paper, The Missoulian, was about an eight-grade boy with autism who was bullied and taunted at school so much that his parents had to withdraw him from school. Like many kids with autism, this boy has difficulties in social situations, and kids who were his "friends" took advantage of him and convinced him to do things that were inappropriate, like act high, tell girls he'd love to see them naked, or, in the final straw, expose himself in class to prove he didn't have a vagina. The school, for their part, cannot say if the children who bullied the boy were disciplined, thanks to privacy laws. They also would not allow a letter, written by the boy's mom, to be read to the students, citing that the school cannot be a forum for the pronouncements of parents. They did, however, send a counselor in to talk to the students about bullying.

The school is where my daughter will be attending next year.

I should mention how our school district is set up. The district campus houses all classes from pre-K to 8 in three buildings - pre-K to 2, 3 to 5, and 6 to 8. The Director of Special Ed oversee special Ed in all three buildings, and the school psychologist also works in all three buildings. But each building has its own principal and its own set of special ed teachers, therapists, and paraprofessionals. So when Helena gets to Grade 6 next year, she will be faced with essentially a whole new set of people to serve her needs, people that right now don't know anything about her.

And the school has already talked about lessening the services for her, like eliminating her aide or restricting how much an aide works with her in the classroom.

I have on several occasions observed the kids playing on the playground under teacher "supervision." A lot of times, the teachers are all huddled in the center of the playground, shooting the bull, looking like they are pretty oblivious to what is going on. In other words, I can easily see how all this bullying happened to this boy, because the teachers really are not monitoring the playground as much as they could. I am not the only one to observe this as well - it was one of the first things our advocate noted after going to an IEP meeting with me.

So how can a Father make sure this doesn't happen to his ASD Daughter?

I would hope that my efforts to talk to Helena's classmates the past two years about autism would make a difference in how they act toward her. But that could be a double edge sword - the more the kids know she has autism, the more they may want to take advantage of her. Nonetheless, I think the positives outweigh the negatives, and next year, I would like to do the presentation not just to Helena's class, but to the entire sixth grade, if not the entire middle school. The school will probably resist, citing the need to not have parents use the school as a pulpit, but I am going to push for it.

At her next IEP meeting, I will not leave until they guarantee an aide for her, someone that can watch out for her.

With our youngest entering pre-school next year, it may be possible for one of us to get over to the school to have lunch with her, or, at a minimum, to observe.

Most importantly, we will make a more concerted effort to communicate with our child, to try an make her talk to us about her day and the things she did, and try to get her to understand why you do not do certain things or listen when someone asks you to do something inappropriate.

One thing is for sure - we will not be silent.

Dear Autism Speaks

2009-09-24T09:30:00.000-07:00

A bend in the road is not the end of the road... unless you fail to make the turn.
~Author Unknown

Dear Autism Speaks,

Let me first congratulate you for once again making the news. You did an outstanding job coordinating the event at the United Nations, and getting high profile people to work on your latest video release, “I Am Autism." If there is one thing that Autism Speaks does well, it is making sure that people know the name Autism Speaks. Many will probably send you money as well, thinking that they will be supporting the effort to unlock the mystery that is autism.

If only they knew the truth...

If only they knew that many people with autism do not embarrass themselves at parties, temples, or in parks, at least no more than other children do.

If only they knew that autism is vastly different from AIDS, cancer, or diabetes.

If only they knew that there are many families that live with autism every day, with marriages that are stronger than ever.

If only they knew that there are children with autism that can actually speak, and that have hopes and dreams just like everyone else.

If only they knew that there are actually adults with autism that live with it every day...

If only they knew that in spite of autism, there is hope if you just make the turn at the bend.

But they will know none of these things, if they only listen to you.

You see, in your eyes, people with autism don't speak, are disruptive, and cause so much pain and suffering that they tear apart families. In your eyes, people with autism and their families live in isolation and loneliness. In your eyes, people with autism have no hopes and dreams. In your eyes, autism is a ruthless monster that has caused all these things. But there is hope, because in your eyes, Autism Speaks is the white knight that rides to the rescue, the one that goes around the world preaching autism awareness. But that white knight comes with a price, which is why your awareness campaigns mainly focus on fundraising, and not action.

We, the parents of children with autism and the adults living with autism, know better. We are the ones in the trenches every day, fighting for our rights and the rights of our children. We are the ones battling insurance companies and school administrations seeking to deny our needs and the needs of our children. We are the ones raising true autism awareness where it is needed most, with our peers and the peers of our children. We are the ones helping others by doing the little things, like watching children so parents can have a much needed night out together, or providing a microloan to help a family obtain the services they need. We are the ones who truly understand what it means to live with autism.

Autism Speaks, I would like to tell you about a little girl I know. She is a bright, intelligent girl who is more than capable of carrying on a conversation. She loves to go shopping and loves to play in the park. Her dream, one she has had since Kindergarten, is to grow up and be a teacher.

This child is my daughter Helena, and she has autism. Because she is high functioning, because she is highly verbal, because she doesn't create a scene in a park or at a party, because she doesn't keep us awake at night - because of all these things, Autism Speaks, in your eyes, she doesn't exist.

And for that, I am eternally grateful.

Sincerely,

Thomas Dzomba, proud parent of a child with autism

Remembering...

2009-09-11T05:49:00.000-07:00

NOTE: This is a republication of a 2008 post, recounting the horror of 9-11, and the resolve of America in its aftermath.
We will never forget the brave men and women who lost their lives that day, nor the resolve that always brings America together in the darkest of times.

I see America, not in the setting sun of a black night of despair ahead of us, I see America in the crimson light of a rising sun fresh from the burning, creative hand of God. I see great days ahead, great days possible to men and women of will and vision.

- Carl Sandburg

We interrupt this Experience to remember another experience on this solemn day.

It was a little before 9 am, and life was good. I was 9 months into my new job with the EPA in Atlanta, my wife and I had just moved into our new home in a small town west of town, and we were expecting our third child. One of my coworkers was talking on the phone, and the person he was talking to told him the news - a plane had just crashed into the World Trade Center. We all scrambled to call up CNN on our computers just to see the spectacle of it all.

Then we heard that a second plane had hit the World Trade Center. And suddenly we knew what was happening. Our hearts sunk - we were under attack.

Then came the reports of the third plane the hit the Pentagon, and finally, reports of Flight 93 going down in Pennsylvania. We were in shock. I called my wife and told her the news. And then I prayed.

By 10:00 we were told we could go home if we wanted to - Atlanta has the third largest concentration of Federal employees in the nation working in a tall building with no buildings to impede a plane from crashing into it. Oh, and the world's busiest airport as well. I made my way to the train and began my hour+ commute home, lost in my thoughts. When I got home, my wife greeted me at the door and we just held each other close.

We listened to the news all day as the first tower fell, then the second. We heard the horror stories about those trapped in the rubble, and stories of the incredible bravery of the NYFD who risked their lives - and lost their lives, selflessly trying to rescue as many people as they could. Not to mention the brave people on Flight 93.

And then we fought back.

I don't mean we fought back by going after the Taliban and the other terrorists like we did. We fought back by showing our resolve. I remember Clark Howard, noted economic talk show host, talking about how as soon as the airports reopened he was going to buy a plane ticket just to show he would not be intimidated into not using air travel. I remember the Lowes commercial depicting a neighborhood now full of American Flags as a show of unity. And I remember people of different races, creeds, colors, and political perspectives, putting differences aside to show the world that we will not be intimidated.

It has been eight years since that day. I have not since that day watched the attacks again. I've never seen the movie Flight 93 and I probably never will. I really don't want to relive that day again.

But I will never forget that day, the darkest day I hope I will ever experience on this Earth. I will always remember those who bravely lost their lives, and their families. And I will always remember the American resolve to never, ever let this happen again.

How Much Longer?

2009-09-09T12:02:00.000-07:00

What kind of world do you want
Think anything
Let’s start at the start
Build a masterpiece
Be careful what you wish for
History starts now

- Five for Fighting, "World"

Yesterday, my daughter was alone, on the school playground. No one near her; no teacher, even her 4th grade teacher from last year, paying attention to her. She was by herself. Jumping up and down. Playing with her hair. Stimming. No one making a move to help her, or redirect her.

All alone.

Yes, her IEP says the school will focus on her social skills. Yes, the case manager apologized to me and promised to make sure this doesn't happen again. But why does this have to happen at all?

We are so fortunate that Helena is high functioning. She can talk. She has a great imagination. As she learns more about her place on the autism spectrum, and as she gets older, I am confident that she will be able to overcome it, and live with it, and be able to function independently in society as an adult.

Yet like other children on the autism spectrum, and maybe even more so because she is high functioning, there are times when she gets ignored and she does not get the attention she needs.

Still, Helena has it better than J.R., an boy on the autism spectrum who was slapped by his teacher in front of the children in his class and his aide, who recorded the incident using a cellphone. Or Alex Barton, who was infamously voted out of his Kindergarten class Survivor-style at the urging of his teacher. Those teachers, fortunately, were relieved of their duties. But what about those taught by Diana O'Neil, who admittedly bopped children on the head and called them derogatory names, yet is still allowed to keep her job?

Should there be more furor over Dr. Paul Offit, a man who some consider an "expert" on the link between vaccines and autism even though he has never treated a person with autism his entire career? Dr. Offit has repeatedly denounced any link between vaccines an autism, but how credible is he when he stands to make millions of dollars from the the pharmeceutical industry, specifically the very company that manufactures the MMR vaccine?

It is 09.09.09, and I, along with thousands of other parents and the National Autism Association, want to know the answer to a simple question: How much longer?

When Helena was 12 months old, she received her MMR shot, and within a month had regressed into significant developmental delays. She is not alone. Many parents have seen their children regress after receiving the MMR shot, or after receiving multiple vaccinations at once, be it as an infant or as a toddler. Yet there can't possibly be a link, right? It has to be solely genetics, right? The pharmaceutical companies would never give our children something that would harm them, right? Just like cigarette companies never knowingly manufactured products that caused cancer, right? How much longer, Centers for Disease Control? How much longer, American Academy of Pediatrics? How much longer, Advisory Committee on Immunization Practices? How much longer, National Institute of Health? How much longer, Food and Drug Administration?

The cases of J.R. and Alex Barton and those taught by Diana O'Neil made the news, but what about those that do not have such a high profile? What about kids bullied and locked in lockers and hit because they don't speak, yet they tremble in fear? What about schools that offer minimal services in order to comply with IDEA as opposed to offering the support needed to help and autistic child? How much longer, Department of Education?

President Obama, you are anxious to bring about health care reform in the US. But where does autism fit in? Will insurance companies cover treatments and therapies for autism, something most won't do now? Will you look into vaccine safety and a more appropriate schedule for immunizations, multiple vaccinations at once? When my daughter was diagnosed with autism seven years ago, the rate of autism among US children was 1 in 266. Then it was 1 in 250. Then 1 in 150. Now 1 out of every 100 children are on the autism spectrum. Do we need to wait until the rate is 1 in 20 before something is done? How much longer, President Obama?

Let's face reality - autism is a growing epidemic, yet no one seems to know why. Or maybe they do know why, but don't want to tell us. Or maybe they don't want to know. But we are raising awareness! It's great that Autism Speaks and the Boston Red Sox and other high profile entities are holding events promoting autism awareness, or maybe they are just raising the awareness of Autism Speaks? Meanwhile, that ratio keeps getting smaller. And smaller. And smaller.

1 in 266. 1 in 250. 1 in 150. 1 in 100. How low will the ratio have to go?

My daughter has needs, and her needs are just as valid as the needs of every other special needs child. But my daughter can and will overcome her autism and have a productive life. I know she will.

But what about the child who can't speak, the child who gets so frustrated he/she bangs their head against the wall. The child that has feelings, and can communicate nonverbally, but no one takes the time to understand? The child who is destined to spend their life, their future, in a special home cut off from society as a whole? How long must we wait before we help them? How much longer before action is taken?

How much longer, America?

Back to School 2009...and Beyond

2009-08-21T08:38:00.000-07:00

"A real friend is one who walks in when the rest of the world walks out."

- Walter Winchell

It's hard to believe that another school year is upon us. Yet here we are less than 2 weeks from the start of school, and 5th grade for Helena.

On paper, it should be a good year for her. This will be her second year working with the same case manager, and her third year in the same building, and with the same aide. And, with 5 years in this school with many of the same kids now in 5th grade, Helena knows most of her classmates. And familiarity and routine are good for a child with autism.

Yet there are so many differences as well. A new teacher. A new classroom. A new wing in the school building. Having to use a locker for the first time. More homework. A body that's beginning to change, and hormones that are starting to awaken.

And, the most important question: how well to Helena's classmates really know her?

I am not worried about whether or not Helena will succeed academically. She is a very bright girl. Will she struggle in some areas? Yes, but that is what her IEP is for. We have in writing extra help for her in her areas of struggle - reading comprehension, writing, taking timed tests, etc. And we have contingencies in the IEP if she gets frustrated and needs a break, or if her frustration becomes disruptive. These are things with which a "neurotypical" (I hate that word) child has little difficulty, but can be huge obstacles for a child with autism.

But as Helena gets older, the more I realize that the most important people in her school life are her classmates. These are the people that will interact with her the most. Even more importantly, after this year many of this years constants will change - the building will change, the teacher will change, the aide will change, the case manager will change - but her classmates will remain throughout her academic journey, through middle school next year, and on to high school far too soon after that.

Ultimately, aside from Helena herself, these classmates will be her biggest advocates, and the most important people to have understand who she is, and how autism affects her and others on the spectrum.

Back in April I gave a presentation to Helena's 4th grade class as part of Autism ~~Awareness~~ Epidemic Action Month. The presentation was well received, and Helena's teacher remarked that the kids did treat her differently afterwards - more welcoming and receptive. So the message did seem to get through.

But now she is in 5th grade, with a new set of classmates, most of whom were not in her class last year and did not hear my presentation. So it's time to present Helena and autism to a new set of advocates. Only this time, I'm not waiting until April - I'll be doing the presentation sometime in September. The school and I both agree that it's far more important to do this in the beginning of the school year.

The presentation will be pretty much the same one I gave in April - talk about famous people who either are or are suspected to be on the autism spectrum, talk about Helena and her autism, talk about how autism affects her (and how it affects others differently), talk about ways she is just like any other child, and talk about how Helena's classmates can help her and others on the spectrum.

I can only hope I get another child to respond like the one in 4th grade, who said he was inspired to find a cure for autism when he grows up. But I'll settle for classmates who are more accepting of Helena and sensitive to her needs, as well as ones who leave the room with a better understanding of autism. For all the IEP meetings and teacher conferences and letters and communications I will have with the school this year, I fell like this is the most important thing I will do to advocate for my daughter.

Ultimately, I would love to convince them that the presentation needs to go beyond Helena's class, perhaps to the entire 5th grade, or even the entire school. After all, Helena isn't the only child on the autism spectrum at her school!

It could be 1%. 1 out of every 100. Just like what the statistics are saying now.

Or maybe even more.

Counting My Blessings

2009-08-04T07:39:00.000-07:00

If our American way of life fails the child, it fails us all.

~Pearl S. Buck

We knew something was wrong with Helena shortly after she received her MMR shot at 12 months of age, when the laughter went away, and the vocabulary she was developing deteriorated into repeatedly saying "Meena, meena, meena." And the stimming began, as did the echolalia and repetitive behaviors. It would be another two years before a doctor had the courage to tell us the Helena was on the autism spectrum.

We knew something was wrong with Nicholas the very night after his four month checkup. Nicholas, during the first four months of his life, was the sweetest, calmest baby parents could ask for. At his four month checkup, Nicholas received four different vaccinations. He screamed. Beginning that night, our once calm baby now would sleep no more than 2 - 3 hours at a time before he would wake up screaming, and it would take close to two hours to calm him down.

We knew something was wrong with Olivia shortly after she received her DtP vaccination, when she began to show significant developmental delays, pretty much being lifeless aside from breathing and eating. This was about the time that Helena finally received a diagnosis of autism, and we decided that enough was enough, and we would no longer vaccinate our children.

Which led to our pediatric office saying that they no longer wanted our business.

Yet we are fortunate, really. After her diagnosis, we put Helena on the GFCF diet and tried a variety of therapies, like most parents do. Hippotherapy was the one that really benefited her the most. She is still on the autism spectrum, and likely will be for life, but she is very high functioning - her speech returned about a year after her diagnosis, and she communicates well. Her primary issues are her social skills and her behavior, but almost everyone will tell you that she is a delight to be around.

Nicholas continued to have his colic, or night terrors if you will, for almost 18 months after his 4-month checkup. They eventually subsided and he has grown into a bright little boy who loves baseball and is in the gifted program at school.

After her 6-month checkup Olivia was diagnosed with significant developmental delays. We were able to get her into an intense developmental program right away, and that is probably what saved her. She too benefited most from hippotherapy, and by the time she was 30 months old, she was ahead of the curve in terms of development. As she enters 2nd grade she too is coming into her own academically. She is an energetic child, and likely ADHD, though never officially diagnosed as such.

Others seemingly, are not as fortunate as we are.

Take Tim and Cheri Welsh. When their son, Tanner, was 4 1/2, they took him to the doctor's office and had the last of his childhood vaccinations administered to him (5 vaccines in total). Two day's later, Tanner was running around, shouting "My name is Tanner. My name is Tanner." Save for saying "Hi." to his dad once, Tanner, now 11, has not spoken again. Shortly after receiving his vaccinations Tanner regressed to the point where had had to wear diapers again and needed assistance with everyday tasks. Ultimately, Tanner was diagnosed with autism.

You can read about Tanner and the Welsh family here, and thanks to Age of Autism for posting the link to this story.

The issue of a linkage between vaccines and autism is a controversial one. Most of the studies revolve around the MMR vaccine and the use of thimerosol, a preservative containing mercury. Most look at MMR and thimerosol in a general sense, and not at specifics, such as the child's age when the vaccination is given, or the number of vaccinations given at any one time. Many of these studies make the claim that there is no link between vaccines and autism. Many people tout these studies as a way to attack Jenny McCarthy and Jim Carrey and their autism advocacy.

None of these studies involved my daughter. And I doubt that any of them involved Tanner, or a great number of the other children who have developed autism shortly after being given vaccinations. Parents like us know what vaccinations have done to our children.

Which leads to my fourth child, Julia, who is now 3 1/2. She was born a little over 3 years after Helena's autism diagnosis. Aside from a bout with jaundice right after she was born, she has been the healthiest of my four children.

She never had colic.
She never had restless nights where she would wake up with screaming fits.
She has always been active and full of life.
She has, at her age, an astonishing grasp of vocabulary and communication.
She has never been vaccinated, nor will she ever be.

Thank you God for the children I have, and for the honor of being their Father.

ES-Why?

2009-07-06T12:37:00.000-07:00

I am beginning to suspect all elaborate and special systems of education. They seem to me to be built up on the supposition that every child is a kind of idiot who must be taught to think.

- Anne Sullivan

Helena starts summer school tomorrow. Or, should I say, Helena starts her extended school year (ESY) tomorrow.

ESY is one of those three letter acronyms that is really a four letter word. Kind of like IEP.

The Individuals with Disabilities and Education Act, better known as IDEA, mentions that ESY services must be made available in order to ensure a free and appropriate public education (Section 300.106).

How states choose to implement ESY? Well, that's a whole other question. Because while IDEA, in defining ESY, states that ESY services extend beyond the normal school year, be free for the parents, and delivered in accordance with the child's IEP, it also states that it must be administered in accordance with the standards of the individual state education agencies. And those standards could vary greatly.

Most states use the regression-recoup methodology. Simply put, ESY is based on whether the child will regress in their skills during periods beyond the normal school year, and would take more time than normal to recoup those skills after returning to the normal school year. There are other factors that many states consider (and in fact there are many Federal Court decisions which lean toward the consideration of many other factors), but some school districts still lean heavily on the regression-recoup criteria.

When we first moved to Montana, we were involved in a dispute with the school district over ESY for Helena. At first they didn't want to offer it, citing the regression-recoup criteria. But then they relented - maybe it had something to do with the lawsuit they were fighting with another parent. And admittedly, what they offer us even this year seems like the bare minimum to at least say they offer something - about 12 hours total contact time the entire summer (4 hours on social skills and SLP skills, and 8 hours on reading comprehension). Still, it's better than nothing - though just barely.

Fortunately, we have a little girl who likes to take her own initiative.

In addition to her 12 hours of ESY Helena will, by her choice, be doing the 5th grade Math Camp at the University of Montana, spending a week by herself with her grandparents (she just got back from that), and learning how to ride her bike - she took a fall when she was 5 and has been tentative ever since, but when I let Olivia ride her bike that set her off and now she's determined to learn how to ride!

In retrospect, maybe 12 hours of ESY is just enough for her. I wouldn't want school to interfere with her busy summer schedule.

I Don't Want to Grow Up...

2009-06-26T06:52:00.000-07:00

Too many people grow up. That's the real trouble with the world, too many people grow up. They forget. They don't remember what it's like to be 12 years old.

- Walt Disney

Last night, Helena had a meltdown.

This in and of itself really isn't news. Helena, like many children on the autism spectrum, has frequent meltdowns. What's interesting is why she had the meltdown - she wanted a glass of water, and wanted us to get it for her because she was eating. We asked her to serve herself, and that started a good old fashioned, yelling, screaming, crying, foot stomping meltdown, which ended with Helena accusing us of never wanting to serve her anymore and uttering that she will never drink water ever again.

In fact, she ended up NOT drinking water - she had apple juice. But she served herself, which is what we wanted her to do.

Earlier this week Kristina Chew at Change.org talked about how her son Charlie, who is close in age to Helena, speaks few words, yet he does communicate in many different ways. Helena, by contrast, is highly verbal, with an excellent vocabulary. But her words often don't tell the real story, and we have to often search for what she is really trying to say.

Sometimes it's obvious. When Helena starts talking about what her favorite stuffed animal, Princess Johnson the Webkinz Persian cat, is thinking, it's easy to figure out that Helena is just using the stuffed animal to communicate her thoughts (for example, "Princess Johnson doesn't like being home alone" is Helena's way of saying that she is tired of the car trip and wants to go home.).

Other times, it's not as easy to figure out. Stimming is something done by many children on the autism spectrum, whether it's arm flapping or stretching one's fingers to the side or, as Helena does now, twirling your hair. One the surface, these look like annoying habits, but in reality the child may be saying that they are overstimulated, or not happy, or frustrated, and they either need to be redirected or otherwise removed from the situation. Same thing when Helena complains of a headache - we are never sure if she really has one or not, because she has often used this as an excuse to remove herself from an unpleasant situation.

The episode last night with the glass of water definitely falls into the latter category. It wasn't an isolated episode, but another display of one particular thought and fear in her mind -

Helena doesn't want to grow up.

At 10 years old, so many things are changing with Helena right now. Her schoolwork is more challenging and time consuming. Her baby teeth are almost all gone, being replaced by her "adult" permanent teeth. And her body is starting to change physically as well. In other words, she is starting to grow out of the childhood phase of her life, and Helena does not want to do that.

Her resistance to these changes is quite subtle. While her 8-year old brother and 7-year old sister have graduated to drinking from actual glass cups, Helena insists on using the plastic "children's" cups, like her 3-year old sister. While her middle two siblings have moved away from watching the "baby" shows on TV, Helena still watches them, and gets angry when you try to change the channel or turn the TV off. And last night was another example - having to pour your own drink at mealtime when your parents normally do that for you is a sign in her mind that you are outgrowing childhood, hence the meltdown.

If there is one thing that fatherhood has taught me, it's that even though we all grow up and have to assume the responsibilities of making a living, maintaining a home, and caring and providing for our families, we never can, as Walt Disney laments, forget the child we were, the child that still lives in all of us. My children have taught me to bring that child out again, whether we swing on swings, or play catch, or lay on the grass watching the clouds go by, and naming the shapes we see. Or watching our troubles float away in a blown bubble, to be popped out of existence somewhere downwind.

As Helena grows, that childhood she is so afraid of losing will always be there, ready to come out and play once more. The challenge is to communicate that to her in a way she will understand.

A challenge indeed.

Please Read My Guest Post Today at www.autismlearningfelt.com

2009-06-11T10:30:00.000-07:00

Tammy at http://www.autismlearningfelt.com/ was kind enough to ask me to guest post at her website today. Please come check out my post on the GFCF lifestyle here.

Thanks Tammy - I really appreciate the opportunity.

The Last Day

2009-06-10T09:17:00.000-07:00

The first step towards getting somewhere is to decide that you are not going to stay where you are.

-Author Unknown

Today is the day, the last day of school. After today, Helena will be in 5th grade.

In many ways, this has been a challenging year for Helena. The school day was an extra half hour longer than before. The workload seemed to increase dramatically, and, early on, homework sessions stretched long into the night. There were monthly oral book reports, and oral presentations on each of the continents.

There was also a new school case manager to deal with, one that came on board only a few days before school started. A new teacher and larger class sizes too. Oh, and not to mention the expansion of the school that took away the primary playground space and all the playground equipment.

Of course, myself and the IEP team knew all these things were happening (aside from the change in case manager) and we tried as best we could to plan appropriately. Yet concerns remained. How would Helena handle all these changes and responsibilities?

Helena took to her new case manager right away, and quickly developed a great rapport with her teacher as well. The homework was a challenge at first, but as I met with the IEP team throughout the year we managed to come up with a strategy that helped Helena, to the point where homework was taking her about the same amount of time to complete as the other students. The playground was a huge issue, and still is. Recess was held in an open field without playground equipment, and while Helena occasionally participated in games with other children, most of the time she asked to be by herself. Definite sensory overload there.

Helena loved doing her oral reports. She especially loved making Powerpoints to use in the classroom.

In the end, she was a respectable "B" student in 4th grade.

All in all, Helena adapted quite well, thank you very much.

What becomes so apparent in repeating this process year after year is how much Helena has changed. Maybe it's due to familiarity, or a greater awareness, or maturity, or something else, or all of the above - I don't know. What I do know is that change does not affect Helena as much as it once did. I can remember how on the last day of school in kindergarten, and again in 1st grade, Helena had awful days, full of tantrums and other unacceptable behaviors. We all agreed that this was due to the last day being such a departure from the normal school routine that Helena could not adapt to it. The episodes were so bad that for the past two years we kept her home from the last day of school.

This year, though, is different. Yes, the school routine will be totally different as it usually is, but Helena is different as well. There will be parties and plays and overall fun today. And Helena will be a apart of it. There is no doubt she can handle it now.

So now, as of 2:30 pm this afternoon, 4th grade will be at an end. And on August 31, at 8:30 am, 5th grade will begin. In between, Helena will be attending summer school to help her with reading comprehension and some social skills, as well as just plain enjoying summer vacation. She already knows her new teacher, and she knows many of her new classmates.

There will be changes to deal with as always. The school will be bigger. There may or may not be a new playground in place. The old superintendent's office will be the new music room. She needs to learn how to use a combination lock. The school workload is again likely to increase.

My little girl can handle it. She has really learned how to adapt.

Only Yesterday

2009-06-04T00:01:00.000-07:00

While we try to teach our children all about life, our children teach us what life is all about.

~Angela Schwindt

My precious angel Helena turns 10 today. I can hardly believe 10 years have gone by since she was born. It all seems like yesterday to me.

It was only yesterday that I held her for the first time.

It was only yesterday that she took her first steps - right into my waiting arms.

It was only yesterday that she called me "Daddy" for the first time.

It was only yesterday that she danced, and played, and sang, and I danced and played and sang right along with her.

It was only yesterday that the dancing and the playing and the singing stopped, and autism took over.

And we cried.
And we asked God "Why?"
And we were told she would be a quiet girl, and that she had no imagination.

And we got angry.
And we got determined.

It was only yesterday that we embraced the GFCF lifestyle for her, and discovered the power of hippotherapy.

And the shadow of autism started to lift, and hope began to shine through.
And the dancing and the playing and the singing started again.

And I began to dream once more.

It was only yesterday that the girl who had difficulties with coordination rode a horse while standing on its back.

It was only yesterday that the girl with no imagination won her grade's PTA photography contest with a photograph of her favorite place - a photo shoot she completely designed.

It was only yesterday that the girl who was supposed to be quiet performed in a play at the local community theater.

And I told God 'Why not!"

It was only yesterday that she was 9.

Helena is 10 today.

I marvel at how much she has grown through the years, and how much I have grown with her. While I have tried to raise her to be a proper little girl, she has raised me to be a better father.

Already she is transforming from a little girl into a young woman. Great challenges await her. Challenges that are complicated by autism. But these challenges are not insurmountable. Together, Helena, myself, and our family, we will learn from them, and grow because of them, and somehow find our way. It will be the road not normally travelled, but it will reach the same destination in the end.

And I will always dream, and always tell God "Why not!"

Happy Birthday, dear Helena, my precious little rose. Your Daddy loves you, and will always be here for you.

Einstein

2009-05-15T09:00:00.000-07:00

A table, a chair, a bowl of fruit and a violin; what else does a man need to be happy?

- Albert Einstein

Photo courtesy http://www.mlahanas.de/Physics/Bios/AlbertEinstein.html

During my recent travels to Asheville NC and Ogden UT I have been listening to the biography of Albert Einstein, written by Walter Isaacson in 2007. I am only halfway through - it is a long book- but I wanted to get my thoughts down now instead of waiting until I finish, which at my current pace may be in about six weeks or so.

Isaacson's book is the first biography written about Einstein since many of his personal correspondences were made available to the public. The book itself is a fascinating, in depth look at a fascinating and remarkable person. Einstein is one of the greatest scientists who ever lived, and without him, much of what modern physics and astronomy is today would not be possible.

But Einstein, as the book reveals, was more than just a great scientist. He was a decent family man, in spite of his divorce and two marriages, and also dabbled in politics and human rights, dangerous occupations for a Germanic Jew in the 1920s and 1930s.

The life of Albert Einstein is also relevant for readers of this blog, as he is often mentioned as one suspected of being in the autism spectrum (such diagnoses did not exist during his time). In fact, Mr. Isaacson goes to great lengths to discount Einstein's association with autism several times in this book. His main reason as to why Einstein could not be on the autism spectrum is because he was able to forge life long friendships with several people, including the two women whom he married and his children.

I, for one, have no doubt that if Einstein were alive today, he would be considered as being on the autism spectrum.

The fact is, Einstein exhibits many of the characteristics of someone on the autism spectrum. As a young child, his speech was often echolalaic. Despite his life long friendships, Einstein was very much a loner, only rarely reaching out to one of his friends to assist him. His friends were, in fact, limited to fellow scientists and colleagues, people whom he associated with professionally as well as personally. It was a common professional interest that blossomed into romance between Einstein and his first wife, and his second wife was a family cousin he had known since they were children, who pretty much served as his caretaker.

Most importantly, Einstein, like Temple Grandin, thought in pictures.

Anyone who's taken physics knows that many of the equations are a jumbled mass of numbers, letters, Greek letters, integrals etc. that somehow come together to help explain our universe. And for many of us, when we see these equations, that's all we see - a jumbled mass of numbers, letters, Greek letters, integrals, etc. But that's not what Einstein saw. When Einstein saw these equations, he saw himself riding on a light beam, or a light particle, or on a train traveling at the speed of light, and he could visualize what was happening in space and time. That's why many of his professional papers started out with a thought experiment - a way to get the reader to see what he sees, so they may get a better understanding of the physics that follows. And his thoughts were revolutionary and earth shattering, totally counterculture to modern physics at that time.

Which brings up another remarkable thing about Einstein - he was not afraid to question everything. He was defiant almost to a fault. Personally, he married his first wife against the wishes of most everyone - family, friends, colleagues. Professionally, if his thought experiments didn't not correlate with what were the accepted norms of physics, he didn't question his thoughts, he questioned the accepted norms of physics. Politically, he refused to join other colleagues of German-Jewish descent in trying to assimilate themselves into the German culture to gain acceptance.

In most cases, Einstein was proven correct.

It reminds me of another great Nobel Laureate Physicist, Richard Feynman, who titled his second autobiography "What Do You Care What Other People Think?"

Einstein often looked upon the world with bemusement. When a rival scientist held a public forum to disavow Einstein and his Jewish science, Einstein, to the shock of many, showed up as part of the crowd. He didn't shout his rival down, but just took it all in with more of a curiosity. He did the same as he was mobbed on his "world tour" sponsored by the Zionist movement. He didn't much care about how he dressed or looked in public; witness him being noted for his unkempt hairstyle.

When I was in grad school the first time (my failed attempt to get a grad degree in chemistry), I had a roommate who's really felt like he knew it all, and who's sole ambition in life was to go back to his college reunion driving a Porsche and proudly tell all his former classmates the he owned his. When he ultimately flunked out of the Ph.D. program and was offered a chance to get a Masters degree, he refused, saying that a Masters degree was beneath him. Sadly, I knew plenty of scientists and scientist wannabes that had that same ego-driven mentality.

Einstein didn't care about the money; he used most of it, including his winnings from the Nobel Prize, to ensure his sons would be raised properly after his divorce. Nor did he care about the fame he had earned thanks to the general theory of relativity. He cared about the science, and making sure that the science was right. He didn't set out to overturn existing thoughts on space, time, and the universe, but when his thoughts steered him in that direction, he didn't hesitate stepping through the door.

How wonderful would life be if all people needed to be happy was a table, a chair, a bowl of fruit, and a violin?

Einstein is, and will continue to be, an inspiration for me as I look ahead to Helena's future in this world.

If you have not already done so, I highly recommend you read this book about a remarkable man. Or do as I am doing, and grab the 18 CDs and listen to it.

You will not be disappointed.

Presenting...Autism!

2009-04-17T06:06:00.000-07:00

Your mind is like a parachute. It only works if it is open.

-Anthony J. D΄Angelo

Yesterday was a big day for me. I did something I had never done before - talked about autism to a classroom of children.

Only this was no ordinary classroom. This was Helena's classroom, and her 4th grade classmates.

What to say? How do I get the message across?

Maybe I should back up and tell you the message. It is what regular readers of this blog already know.

I am beyond trying to focus on the why Helena has autism. I am focused on the how. How will Helena live with autism and still achieve whatever she wants to achieve? How can these students help someone with autism, since they are more likely to encounter someone with autism than I ever was at their age?

That was my message yesterday. People with autism are different. They think differently, they travel a different road than most, and they all need help and support, but ultimately they can get to the same destination. And achieve great things.

I started by showing a quote from Albert Einstein, that would become important later:

Logic will get you from A to B. Imagination will take you everywhere.

So I talked about famous people that are or were suspected to be on the autism spectrum. Albert Einstein. Alexander Graham Bell. John Denver. Darryl Hannah. Matt Savage (For those who have never heard of Matt, he is a 16-year old with PDD-NOS who happens to be a jazz musical prodigy). Different people from different eras and different walks of life, each successful despite autism (or suspected autism).

I then tried to explain autism and living with autism in three different ways:

The Experiment: I gave a paragraph to a student to read in her normal reading voice, while everyone else in the classroom was making as much noise as possible. I also made sure to ask Helena in front of everyone to cover her ears. When the student read no one could hear her, and she couldn't even hear herself! I asked them to imagine that their brain had to sort through that noise every minute of every day of their life. That's what Helena has to do.

The Road Construction (Thanks for this idea Kristen). I showed the students a picture of a road construction zone and asked them what happens when a highway is under construction (road is closed, you need to detour and find another way). I told them that having autism is like having road construction in your brain - while most people can take a straight path to their destination, a person with autism has detours that force their brain to find another way to get there.

Clouds. I showed a cartoon of three animals looking at clouds in the sky, each seeing a different picture in the clouds. I told the class that autism is like that - people with autism see the world a little differently in their brain.

I talked to the class about some characteristics of autism:

The need for structure and routine, and how an abrupt disruption of that routine can literally ruin an entire day.

Sensory overload, reminding the class how I had Helena cover her ears while everyone was making noise. I also talked about the playground with all it's noise and distractions, and even the classroom.

**An aside here. I was talking to Helena's piano teacher (who works extensively with special needs children) and she opened my eyes to the challenges of the modern day classroom. When I was in grade school, we all sat facing the teacher, and had little on the walls save an alphabet and a couple of decorations. Classrooms today are often broken into centers with lots of decorations and maps and students sitting in pods. That's a really distracting environment for a child with autism.**

Stimming. I talked about what stimming looks like, and how stimming is a way a person with autism tries to relieve some of the sensory overload. I told the class that if they see Helena playing with her hair or doing other stimming, it may be good to tell the teacher or Helena's aide to check and see if Helena is okay.

And then, the two most important things I could tell this class:

The need for friendship. I talked about the social difficulties of someone with autism, and how difficult it is for them to make friends. I stressed the need for them to befriend someone with autism, play with them, and be patient with them.

The need for understanding. I talked about how fortunate we are that Helena is high functioning, and that a lot of people on the autism spectrum are not verbal, and face even greater challenges. But they are always trying to communicate and learn, and it's important to understand and recognize that.

I showed them that Helena is, in a lot of ways, just like everyone else:

She loves cats.

She plays piano.

She likes computer games, especially Toontown.

She has tried sports, like T-ball and soccer, and while she wasn't the best player, she always tried her hardest and did her best, and that's what matters (that was for the three girls in the class that were on her soccer team in 2nd grade, one of whom had said some not so kind things about Helena during practice).

She, on her own, tried out and won a part in the 2nd grade Christmas program.

She, earlier this year, expanded her acting efforts (again on her own) and performed at the Missoula Children's Theater in "Free to Be, You and Me."

I then had the class (and Helena) tell me what they wanted to be when they grew up. Helena has always wanted to be a teacher. I brought back the pictures of Albert Einstein, Alexander Graham Bell, John Denver, Darryl Hannah, and Matt Savage. We revisited the quote from Einstein, and I told the class that when Helena was diagnosed with autism, we were told she did not have an imagination, something other parents of children with autism may have heard.

I pointed to the great scientist, the great inventor, the great songwriter, the great actress, the great jazz musician, and talked about how to achieve greatness in all these fields, one must have an incredible imagination. And all these people are suspected of or were diagnosed with autism.

They did not let autism beat them, and neither will Helena.

I introduced the class to one final man, and the quote that this whole blog is based on:

Some men see things as they are and ask "Why." I dream things that never were and say, "Why not?"

- Robert F. Kennedy

Most of the students in the class, like Helena, have dreams about what they want to do with their life. And there is no reason that Helena, like the rest of her class, cannot achieve those dreams.

The class seemed really receptive to the presentation, and I even had a boy say that when he becomes a doctor, the first thing he will do is find a cure for autism.

This was the first time I had addressed Helena's class about autism, and a presentation similar to this will be done every year from now on. I did this presentation during Autism ~~Awareness~~ Epidemic Action Month, but in reality it needs to be done at the beginning of the school year.

The ultimate goal, as I told Helena yesterday, is for her to one day do this presentation herself. And one day, she will.

Just like one day, Helena will become a teacher and change the world.

Magic Marker Monday - The Birthday Artist.

2009-04-06T03:00:00.000-07:00

Happy Birthday, Happy Birthday, we love you...

The resident artist turned 7 yesterday!!!

One of Olivia's birthday presents was a new art easel, just what every budding artist needs. And that means she now has space to do large paintings on newsprint. Here are some of her weekend creations in watercolor:

A spring flower...appropriate since spring may have finally arrived here.

The Tornado. Notice the woman in the bathtub being whooshed out of her house.

Portrait of Daddy and Julia. Note that Julia is screaming "Daddy!" because Olivia won't let her paint!

Julia finally did get her turn, and this is her portrait of Daddy. Note the distinctive Miro influence...

For more Magic Marker Monday posts, please click here.

The True Meaning of World Autism Awareness Day

2009-04-02T06:40:00.000-07:00

Awareness without action is worthless.

-Phillip C. McGraw

Today is World Autism Awareness Day. It is a day where the major media outlets will likely feature stories about autism, and many autism bloggers will be posting about their experiences with autism. And this is good.

But is it enough? Hardly. And sadly, those stories of today will be long forgotten by tomorrow.

Kim Stagliano, the Managing Editor of Age of Autism and a fine writer, recently wrote a piece renaming this April as Autism Epidemic Action Month. Her point is simple - autism awareness is nothing unless we do something to back it up.

It's interesting to go to the World Autism Awareness Day website and check out the events going on in commemoration. There are some that are sponsoring conferences featuring speakers who work in the autism field or parents of children on the autism spectrum. But a lot of the events listed have one purpose - to raise money. The perfect example is the very organization sponsoring World Autism Awareness Day - Autism Speaks. Here is their list of events for today:

Ring the bell at the Stock Exchange.
Auction off on-line artwork by Yoko Ono featuring the hideous puzzle piece connotation (more on that in a future post) for - fundraising.
A self-promotional campaign with the Ad Council and 150 strollers directing people to the Autism Speaks website to "learn the signs." The strollers will then be donated to a local non-profit which distributes them to needy families.
A special performance of a contemporary dance piece by dre.dance with dance moves evolved from "typical autism behavior." The purpose of this performance - fundraising!

In addition, Autism Speaks and the Ad Council are working with Nick Jr. and their character, Wubbzy, to promote the Autism Speaks event Walk Now on the Web, who's purpose is - yes - fundraising!!!

So is that what this day is all about? Raising money? Raising the awareness of Autism Speaks?

How about we preach autism awareness by doing REAL things. Here are some that Kim Stagliano suggested, plus some of my own.

Help a parent with a child on the spectrum by offering to babysit for an hour or two so the parent has time to go shopping, take a nap, or otherwise just relax.
Considering a donation to Autism Speaks? Click over to Lend4Health instead and contribute to a microloan so a family can get the doctor's visits and treatments they need.
Become active in your local autism support group and give parents of children on the spectrum an outlet where they know they can get support.
Don't have a support group in your area? Then get together with some families and start one!
Check out my dear friend Katherine, the GFCF Mommy's post today on 10 things we can do this day, this month, or any month.

For my part, I am taking on one of my greatest challenges this month. On April 16, I will be doing a presentation on autism for Helena's 4th grade class. What better people to talk autism with than the peers of your child on the spectrum!

As I said yesterday, autism awareness goes beyond one month - it is a 24/7/365 job. And, as the GFCF Mommy points out, words are still needed. But unless we follow up those words with positive, tangible actions that actually help families experiencing life on the spectrum, or raise awareness with those closest to our ASD children, how effective are those words?

National Autism Awareness Month

2009-04-01T06:00:00.000-07:00

Let us not look back in anger or forward in fear, but around in awareness.

-James Thurber

April is National Autism Awareness Month.

I would say that you will see a lot of terrific blog pieces on autism awareness this month, and you will. But those of us who blog about and live with autism know that autism awareness isn't just one month, but a 24/7/365 job.

And a lot of times, that is not enough.

Autism awareness is the challenge that we who have children on the autism spectrum or who are on the autism spectrum face every single day. We have all been through IEP meetings from hell. We have endured the stares of other people when our children stim in public. We have heard people talk about how our children are "retarded", or stupid, all because they act differently or they need a little help to get through the school day.

Around this time last year, we were inundated with the cases of Adam Race, who's church filed a restraining order against him and his family because he was being disruptive, and Alex Barton, and kindergartner who literally voted out of his class Survivor-style by his classmates at the demand of his teacher. The restraining order against the Races still stands, as last I read, and Alex Barton's teacher was suspended for a year and had her tenure revoked. But neither of these are the real story.

The real story lies in the comments these stories received when they first broke last year. There were many comments that supported the Races and Alex Barton, but just as many, if not more negative comments, not just about Adam and Alex, but autism in general. Here are some comments about the Adam Race story, which I had previously mentioned in this story at the GFCF Experience:

It's not about autism. Anyone who hits or grabs people in church cannot be allowed to attend. The article, obviously slanted and with a strong agenda,didn't mention that this person physically attacks people in church until the end of the story. Sadly, people who cannot be controlled cannot be allowed in church. Think for a minute, would you want your children hit or groped by this person?

... If the child is disruptive (and yes, he is a child and will unfortunately remain one his entire life) ...

Their son is on the Autism spectrum and based on research, one or both of the parent is much more likely to be on the spectrum also; obviously this parent is higher functioning than her son.

I have two autistic nephews. These unfortunate people belong in institutions instead of inflicting their ill behavior on the rest of us in the name of political correctness. My oldest nephew has barely any idea that he has parents and is constantly in trouble with the law. This kid like my oldest nephew needs to be locked up where he can get a routine and be surrounded with similar people. He might could still do something productive maybe even learn a skill but he cannot do it on the outside. This nation wastes billions in resources to in a Don Quixote belief that autistic people can be magically cured, sorry, its not happening! They're brains are mush. Please, please,please, reopen the institutions so we can get on with our lives. If this statement hurts your feelings, sorry, but I am more concerned with the welfare of everyone else!

And what happened when God discovered Adam was naughty? HE KICKED HIM OUT OF EDEN!

The church did offer closed circuit tv in the basement. My best friend's son has autism, and I work in a group home with someone who has autism as well. Since this child is homeschooled he is not in public much, and sometimes sitting in a pew for an hour can be hard for anyone. Maybe he gets over stimulated or even bored. This is a person who has the physical body of a 13 year old, but what is his mental age? 3? If my 3 year old daughter was acting this way I would take her out of the service or sit in the back. (emphasis added)

The comments for the Alex Barton case were similar:

We have become a nation of guilty parents who raise overprotected children who grow up into neurotic teens. Kids rule the classroom. Teachers are the victims.

This teacher is doomed...and so is any other teacher who looks, says, or does anything to upset lil Johnny's feelings

I don't think the teacher was completely wrong. How fair is it that the other children have to have their learning expeirence disrupted b/c a student cannot behave. This so called "autusim" or ADD ADHD is an excuse for parents b/c they don't know how to raise a child or disipline them the right way. Stop suger coating them. Stop blaming the teacher. BLAME THE PARENTS. The teacher has a JOB: it is to give children an education. The teachers job should not be disiplining a child every 5 minutes b/c he or she doesn't know how to act in a classroom.

And you wonder why we need to talk about autism awareness???

As it stands, we now have a month where autism awareness will be more in focus than any other time of the year. It will especially be in focus tomorrow, on World Autism Awareness Day, when world wide media will hopefully devote some time to autism awareness.

But for those of who live with autism, April 2009 is only 30 days of a lifetime of autism awareness.

Magic Marker Monday - Stargazing

2009-03-30T03:00:00.000-07:00

The stars are the jewels of the night and perchance surpass anything which day has to show.
— Henry David Thoreau

It's been a while since I posted a picture from the resident artist, but here is Olivia's latest creation - me and her, holding hands and gazing at the stars.

In front of a rose bush.

It doesn't get any better than that.

For more Magic Marker Monday joy, please click here.

The Second Shining Light For Special Needs Award

2009-03-17T07:55:00.000-07:00

It is the quality of lending over the quantity of lending.

- Lewis Thompson Preston

In December 2008, I created the Shining Light for Special Needs award to honor those who make a positive difference in the lives of special needs people and their families. The recipient of the award this month does this, and so much more.

As a parent of a child with autism, I know firsthand the costs associated with an autism diagnosis. Whether you are going to see a DAN! doctor, or signing up for ABA or Floortime therapy, or other medical tests, procedures, and therapies, chances are you are going to incur a lot of out of pocket expenses. Most insurance companies view the various biomedical treatments and therapies for autism as not medically necessary, and it is difficult to get them covered under any state healthcare programs, if you can even get qualified. Appointments with these medical professionals are hard to come by, so when you get an appointment, you need to keep it.

But what if you need a little help paying the bills? That's where this month's recipient comes in.

I am honored to present the second Shining Light for Special Needs award to Tori Tuncan, the creator of Lend4Health.

Tori is the mom of a special needs child who also blogs about her experiences with the GFCFSF diet. In June 2008, Tori came up with the concept for Lend4Health - others helping families pay for the medical treatments they need by funding them using "microloans." As Tori gets a request, she contacts the family and their references to verify the family's needs and arrange the terms of repayment. She then posts the request on the Lend4Health blog. Others read the request and then contact Tori if they want to help "fund the loan" - from $1 up to the full amount. Once Tori has received enough money to fully fund the loan, the money is sent to the family, who then repay the loan interest-free according to the established terms of repayment. Once the loan is fully repaid, the money is returned to the "lenders," who can either repocket their money or use it to fund someone else.

In just under nine months, Tori and her contributors have fully funded 35 loans for a total of just under $17,000. Eight of these loans have already been repaid in full. Repayment is on the honor system, but no loans have defaulted, and 87% of the payments are made on time or early. There are currently four children who are awaiting loans (get the details at the Lend4Health blog).

These are really impressive numbers. But Tori hasn't stopped there. She is also establishing partnerships with commercial companies who are offering discounts to those who purchase using Lend4Health loans. Currently, Tori is asking people to sign a petition urging the for profit corporate members of the autism community to support the Lend4Health program.

From the petition site, here are some comments regarding Lend4Health:

It [Lend4Health] has helped me help my children with costly tests.

Lend4Health gave us the opportunity to finally get into see a DAN Dr. The idea is wonderful and this is a great way to help families get the urgent biomedical treatments needed for their children. Our family will continue to support Lend4Health and future families as well.

Lend4health is wonderful, it helped me when I needed a loan for my son. I am alone in my fight and the love you feel from strangers is the most wonderful lift.

It has personally helped my son and I believe in the concepts ability to change the live of these children and families.

I encourage all of you to visit the Lend4Health blog and consider assisting in the funding of a loan for a child in need. And if you have a need, please contact Tori and see if you are eligible for a loan.

Tori, for your work in organizing the autism community to support itself and help those in need, I am delighted to present you with this month's Shining Light for Special Needs award.

Congratulations!

What About the Boy?

2009-02-18T06:04:00.000-08:00

You don't raise heroes, you raise sons. And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes.

~Walter M. Schirra, Sr.

Through my writings here at The Autism Experience, and over at The GFCF Experience, you have gotten to know members of my family fairly well. You know Helena, of course, through our experiences with autism. You know Olivia through her imaginative artwork. And you know Julia through the antics of a (now) 3-year old.

But what about the boy? I seem to write very little about Nicholas, my 8-year old son. But I want to make up for lost time here, because he is very special, and he deserves a moment in the sun.

Plus, he illustrates a glaring need in our public school system.

All of my children are special, but Nicholas is truly gifted. At four years old he was already reading. By the end of Kindergarten he was working on multiplication and division. By the end of first grade he was into chapter books and had pretty much devoured all the Magic Tree House books he could find.

The problem was, the school could not, or would not, keep up with him. He loved going to school (he still does) but he wasn't really learning anything he didn't already know. The school acknowledged that he was gifted, and as he entered second grade, he was given a teacher whom we were told would be progressive and allow Nicholas to work to his ability.

What we got was a disaster. Nicholas would come home, and all we would hear is how he beat his teacher playing Hangman. He was still getting spelling lists with simple words instead of the more advanced words that we were promised. Same thing with math. We I talked to the teacher at conferences, he would throw up his hands and say that the Superintendent is mandating common a curriculum in all classrooms, and that there wasn't a lot of wiggle room in that!

The IDEA guarantees Helena and all children the right to a free and appropriate public education, although those of us who have been through the IEP process year after year know how difficult it can be to achieve that. Still, IDEA is a Federal Law designed to protect the education rights of special needs children.

The No Child Left Behind Act (sic!) focuses mainly on bringing disadvantaged students, and those is "low-scoring" schools, up to academic proficiency. This often means more focus is given to test score performance and bringing the "underachieving" students up to academic standards.

But what about the gifted students? What about the boy?

Fortunately, in third grade, as Nicholas transitioned from Elementary school (K-2) to Intermediate School (3-5) things seem to be improving. For the first time this year, they offered a gifted program to children in third grade, and Nicholas was one of five children selected to participate. They really do not have a structured program for the third graders (since this is the first year), but the gifted program director is enthusiastic and great to work with. Nicholas also has a wonderful regular teacher who has many of the higher functioning third graders in her classroom, and there is a lot more flexibility in the curriculum. I can only hope this is a sign of how things will be in the future.

What is really scary is that had we remained in Georgia instead of moving to Montana, Nicholas would only be in second grade right now, since he would have significantly missed the cutoff date for being in third grade, since they start school there at the end of July as opposed to September here (he missed the cutoff date here by 10 days, but they allowed him to test into Kindergarten when he was 4).

At home, Nicholas is a typical 8-year old in a lot of ways, notably in how he always gets into disagreements (to put it mildly) with Olivia. He loves sports, especially baseball and soccer. He is really into computers right now, and is actually designing his own virtual worlds! His love of computers has really had a great influence on Helena. Helena likes to go on to the computer and play, but usually it's the same old games. Nicholas has introduced her to a lot of new and fun things to do, and he willingly stays by and teaches her and encourages her (at least until Helena shoos him away so she can do it herself!). He is also great with Julia. He loves to play with her! He continues to be a voracious reader - we will check 10 juvenile books out of the library and he devours them in a day or two. His favorite author - Matt Christopher, whose books I enjoyed when I was a kid!

I know it is really hard on him to have 3 sisters and no brother, but he handles it well.

What about the boy? The boy, he is my son, and I am honored to be his Father.

What Kind of World Do I Want?

2009-02-12T06:09:00.000-08:00

What kind of world do you want? Think anything
Let's start at the start, build a masterpiece...

-Five for Fighting

Since I joined Facebook I have not only reconnected with friends and family, but I have made many wonderful new friends as well. I would like to introduce you to one of them right now. Her name is Dierdre.

Dierdre is the mother of Logan, a wonderful little boy who happens to be on the autism spectrum. Dierdre blogs at Life As An Autism Mom, and I would encourage you to check her blog out. It is a very honest look at the joys and trials and tribulations of raising a child with autism.

Dierdre also made a video about Logan, as part of Five for Fighting's What Kind of World Do You Want foundation, which provides charitable donations depending on how many times a video for a charity is watched. It is a beautiful tribute to her son, and Dierdre and her husband's dreams for his future world.

There is one line in her video that really inspired me:

I want a world where autism is not mistaken for developmental delay.

I know where Dierdre is coming from, as we went through the same thing with Helena. Doctor's kept putting us off, telling us she was just developing slower, until a brave doctor finally diagnosed autism when she was three.

But "developmental delay" goes beyond that as well. Children on the autism spectrum have also been labelled as "retarded" or "stupid," among other things, especially those that are more severe. This is just so incredibly untrue. As we parents of children with autism know, our children are quite intelligent and talented, they just look at the world in a different way.

I am reminded of a classic Gary Larson Far Side comic, where there are hundreds of penguins on the ice, all looking and behaving exactly the same, except for one, who is bellowing out at the top of his lungs I've Gotta Be Me....."

I have not mastered the art of producing my own video yet, but this is the world that I want:

I want a world where doctors are honest with parents, instead of delaying the inevitable diagnosis.

I want a world where families living with autism can affordably get the help they need.

I want a world where the word "neurotypical" is eradicated from the English language, and any other language in which it appears.

I want a world where Helena, to paraphrase the show she is performing in next weekend, is free to be who she is.

I want a world where, to borrow from an older blog post of mine, the Hippocratic Oath means something, and is not just a bunch of words said by some old Greek guy.

And finally, to borrow the profound words said by the teenage daughter (who is on the spectrum) of a friend of mine, I want a world where autism is not looked at as a disability, but as a difference.

What kind of world do you want? Think anything
Let's start at the start, Build a masterpiece

Thank you Dierdre and Logan for your inspiration.

Free to Be...You and Me

2009-01-21T06:37:00.000-08:00

Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.

- Mark Twain

Those of us who live in Missoula are blessed to have a cultural institution known as the Missoula Children's Theatre, or MCT. MCT is an internationally acclaimed organization which has as its mission "the development of life skills in children through participation in the performing arts." They are known for pulling into a town in their little red trucks with everything necessary to put on a full scale musical production...except the cast. For the cast, they take 50 - 60 local children, rehearse with them for a week, and then put on full performances on the weekends. It is an incredible thing, and you can get a glimpse of it through the award-winning documentary The Little Red Truck.

Here in Missoula, MCT is a community treasure. They offer children's theatre camps during school breaks and over the summer (at beautiful Seeley Lake, MT), as well as a variety of children and adult performances at their theatre. They also, once a year, go into the various schools in Missoula and put on full-scale shows using the students as the cast. And that is where our story begins...

At my children's school, MCT pulled up in their little red trucks and put on a production of Pinocchio. Nicholas and Olivia auditioned but unfortunately were unable to get parts in the show. But while Helena did not audition, she was inspired, and when the fiyer came home announcing that MCT was doing a production of Free to Be...You and Me at the theatre, Helena asked if she could participate.

Helena has taken these initiatives before. In second grade, she wanted to try out for the YMCA soccer team. It was an unmitigated disaster - she did her best but she is not much of an athlete (thanks to low muscle tone) and is was eye opening to see how she was mistreated by some of her teammates (mostly because they did not understand autism) and how I was mistreated by some other parents (mostly because they are ignorant and stupid). She also, as I wrote about last month, took the initiative to try out for a part in her class Christmas play that same year, won the part of Rudolph (with one speaking line) and did really well.

But this is different - this is MCT. This is not the familiar school and classmates, but the Missoula community. But this is also Helena taking the initiative, something we encourage her to do, and rejoice when she does it. How could we say no?

Not to mention that the flyer guaranteed that all kids would have a part...

We signed her up for the Tuesday-Thursday sessions (she constantly reminded us that she could not do Monday-Wednesday because of her Wednesday piano lessons). Basically she does a month's worth of rehearsals, and then two performances in front of about 3000 people on February 22.

Her first rehearsal was January 15. We arrived (thanks to her father's inability to read the time) a few minutes late. In the rehearsal room, there were about 40 other kids ranging from pre-schoolers to high-schoolers. How would Helena do in this unfamiliar setting?

Helena will do just fine, thank you very much.

She followed all instructions flawlessly. When they asked kids to introduce themselves, they asked them to do it as it you were angry. One thing we are working on in Helena's IEP is the ability to recognize emotions, and what they mean. So it was really great to see that, when it was Helena's turn, she put her hands on her hips, stomped her feet, and angrily said "I AM HELENA MARIE DZOMBA, AND I AM NINE YEARS OLD!"

They auditioned the children in groups, and had them say silly things like "Don't go on the roller coaster after you eat Jello!" using a variety of dramatic emotions. And, while Helena was not as dramatic as some of the seasoned veterans of the group, she pulled off all the emotions flawlessly - a huge step for her!

As impressive as Helena was (spoken like a proud Dad!) I was more impressed with the MCT staff. I am always concerned when I put Helena into a new situation with unfamiliar people - more often than not you have to explain autism, and some of her mannerisms, so that people understand. But I was really impressed at how the MCT staff handled the kids. One child in the group is a teenager with Downs Syndrome, another was a shy little girl that did not feel comfortable auditioning, and then preschoolers are always difficult to handle because their attention span is so short and they have not fully learned proper behavior. But the MCT staff showed patience and encouragement for everyone. When the little girl did not want to audition, they kindly had her sit down on the floor and watch everyone else, and then, to break the ice with her, they had the preschoolers pretend they were fish and swim around her!

I will write more about this experience for Helena, but as I close this post I want to talk a little bit about the show. The show is called Free to Be...You and Me, and is based on a best-selling book by Marlo Thomas which was turned into a TV production in the mid 1970s (funny...I don't remember a thing about it). The book was written at a time when diversity was just starting to be celebrated and the traditional stereotypes (man as the breadwinner, woman as homemaker, men never cry, etc.) were being challenged (they still are, though we have come a long way). And while I have never read the book, by understanding is that it is a celebration of who we are, and not who society dictates we should be.

I cannot think of a more perfect show for a child with autism.

Lyrics The New Seekers - Free To Be You And Me lyrics

Magic Marker Monday: Send in the Clouds

2009-01-05T02:51:00.000-08:00

Happiness... it lies in the joy of achievement, in the thrill of creative effort.

- Vincent van Gogh

Happy New Year! The resident artist, Olivia, insisted that I start the new year off with one of her drawings. I don't think she gave this one a name, but I just love the clouds. It reminds me of a summer day, lazing in a field, watching the clouds go by and seeing what amazing pictures they create.

For more Magic Marker Monday posts, please click here.

The Inaugural Shining Light for Special Needs Award!

2008-12-23T05:55:00.000-08:00

All I know to do is to light the candle that has been given to me.
-Fred Rogers

It has been a very difficult month for me, filled with issues in both my personal and professional lives that have consumed much of my time and energy.

And yet, along my journey the past month, there have been many instances where I have been inspired to look beyond the difficulties and see the positive - the silver lining behind the cloud, so to speak.

One such instance occurred yesterday, and it serves as an inspiration for this post, and future monthly posts to follow.

When I started this blog in July, I noted that this blog is not about the "why" my daughter Helena is on the autism spectrum, but the "why not." There is no reason why autism should hold her back from achieving all she wants to in life - she is just going to go about it differently than most. There will always be times when things will be difficult, or frustrating. These are not obstacles though, but building blocks. We learn a lot from the difficult times, so when we face them again, they are easier to overcome.

Like the quote above from Mr. Rogers, Helena, and indeed all my children, are my little candles. And it is up to me to light then and make them shine brightly on their journey to adulthood.

I visited a dear friend's blog yesterday that I had not visited in quite a while. And I read what I commented to her was one of the most beautiful blog posts I had seen. At first, I was inspired to simply write about it, but then the idea formed inside my head to go beyond that - and actually create an award.

And so, it is my pleasure to introduce the Shining Light for Special Needs Award!

It is my intention to use this award to honor those are making a positive difference in the lives of special needs people, whether as a parent, a sibling, a spouse, an advocate, a friend, or in whatever capacity. Each month, around the 20th or so, I want to recognize someone who is a positive force in the life of a special needs person.

I am honored to announced that the recipient of the inaugural award is Michelle, from In the Life of a Child.

For those of you who do not know her, Michelle is the mother of two adorable children, Jacqui and Kyle. Jacqui has endured much in her young life, from a rare birth defect called lymphatic malformation (LM) to random bouts with Cyclic Vomiting Syndrome (CVS) which can last a week or more. Michelle and her husband Ken have endured right along with her, and it is through their love and the miracle of God that Jacqui is the delightful little girl she is today. I encourage you to read Jacqui's story, which Michelle has posted here.

Michelle's posts are sometimes whimsical, sometimes exasperating (go to her blog and search "Reasons I Dye My Hair"), sometimes sad. But more often than not, they are inspirational. Like the post that inspired this award.

On December 5, Michelle's entry was titled "Choosing to See Beauty." It is an entry about parenting a special needs child, with paragraphs interspersed with hand-cut snowflakes that adorn Jacqui's room during Christmas. To transcribe what inspired me would mean rewriting the entire post. but perhaps I can sum it up like this:

As a parent of a special needs child, so often it is easy to focus on the needs part of the equation, and all the trials and tribulations that come along with it. But Michelle chooses to focus on the special part of the equation, and the needs are part of what makes the child so special.

Michelle, you and Ken have been an inspiration to me and countless others, and I am honored to present you with the inaugural Shining Light for Special Needs Award.

The Silent Boy

2008-12-16T06:53:00.000-08:00

“The miracle of friendship can be spoken without words... hearing unspoken needs, recognizing secret dreams, understanding the silent things that only true friends know.”

- Author Unknown

Lois Lowry is an accomplished children's and young adult author. Many may know her from her Anastasia series, or her many other books. But The Silent Boy is special, as it delves into life in the early 1910s, and a special friendship between a precocious girl, and a boy who, while this is unspoken in the book, clearly is on the autism spectrum.

My dear friend Katherine aka the GFCF Mommy inspired me to read this book, and I am glad she did. It is, in many ways, a tragic tale, a tale of how ASD children were viewed 100 years ago (and sadly, are still in many ways viewed the same way today). But it is also a tale of hope, because there is always someone who cares and, in many ways, understands. There is always someone who is willing to go out on a limb and become a friend. And even though nary a word is spoken, the understanding is there.

I do not want to tell too much about the story, as to give it away. Rather, I will let Lois Lowry tell it herself, in the liner notes from the back cover of the book:

Precocious Katy Thatcher always knew she wanted to be a doctor like her father. She joins him on his rounds and has a keen interest in the people around her. She is especially intrigued by Jacob, a gentle, silent boy who has a special sensitivity toward animals. While Jacob never speaks to or looks at Katy, they develop an unusual friendship and understanding. the townspeople dismiss Jacob as an imbecile. Katy just thinks of him as someone special who has a way of communicating with the animals through his sounds and movements.

And only Katy comes to realize what the gentle, silent boy did for his family. He meant to help, not harm. It didn't turn out that way.

While it is disturbing to hear the townspeople's views of Jacob, even more disturbing is the words of some of the reviewers of this book. Reviewers have called referred to Jacob as "retarded", or "mentally backwards". In the book, Ms. Lowry refers to him as "touched," which is probably the correct term given the lack of knowledge of autism spectrum disorders back then.

As the parent of an ASD child (about the same age as Katy in the book), I can relate to this story in many ways. I have seen the difficulties my daughter faces in forging friendships, even though she is quite verbal and high functioning. I have seen her mocked because of her peculiar behaviors, by children and adults who do not understand. And I have seen her retreat into her own silent world, when things get too much to bear.

I have also seen her heart of gold, and her attempts at doing the right thing that are often misunderstood.

This book is written for juveniles and young adults, but I think adults would find this book interesting to read as well.

I would highly recommend this book. It is well worth reading.

The Christmas Program

2008-12-09T14:42:00.000-08:00

I never thought it was such a bad little tree. It's not bad at all, really. Maybe it just needs a little love.

- Linus van Pelt, in A Charlie Brown Christmas

Last night was Helena's annual Christmas program. This was the fourth such program she has participated in - well, every child participates in some form or another. Those who are not reciting lines on stage in the gym are on the bleachers, singing and performing simple "in place" dance moves.

The Christmas program is a lot of fun. It is also a sobering indication of how autism affects our beautiful little child.

Helena's Christmas programs, over the years:

In first grade, the first and second graders did a combined show. There were so many people there, that it was too much for Helena to handle. She just sat there stimming most of the time. There was no support from the school to help her - the school's idea.
In second grade (a much better school year for Helena), she actually had the desire to try out for a part in the play! She won the role of Rudolph, and performed her line flawlessly! Unfortunately, when they were group singing on stage, she still did more standing and looking around as opposed to singing and dancing.
For third grade (last year) she was just in the choir, as in first grade. But the big difference is this: in first grade, there are many children that look around and don't really participate. By the time they are in third grade, there is much more active participation. Except for Helena. She still just kind of stood there a lot.

So that leads to this year's Christmas program.

The Christmas program was a topic of discussion at our recent IEP meeting. After the first grade debacle, Helena always had either the teacher or her aide sit with her in 2nd and 3rd grade, and they could correct any inappropriate behaviors (stimming, etc.) on the spot. This year, we agreed that Helena would be up there with her class, with no teacher or aide beside her. But they would be nearby and watching to make sure all was okay.

Once again, she was just in the choir, although this year, they did the program different - each homeroom worked on two different "scenes" which they performed on the stage. Helena dressed in her most beautiful Christmas dress and was anxious to go. As the program unfolded, I focused on Helena to see how she would do. Like previous years, there were many times where Helena looked lost or distracted. But, more so than ever, there were moments where she was actually singing the songs, and she did some of the dance moves - a little late, as she was keying off the students as opposed to the teacher, but she did them.

The distraction is easy to understand. Many people on the autism spectrum have difficult times or are uncomfortable in crowded places. I remember Temple Grandin, in an interview on 20/20, talking about how difficult is is for her to go into a bar or eating establishment - it is pure sensory overload. With Helena, I think it is the same. It is so easy to get distracted when there is so much going on - music, singing, dancing. And then you combine that with all of the different people in the room, all wearing different things. Helena is fascinated by what people wear!

But despite the distractions, she participated more than ever. And the most important and critical thing that happened at this year's Christmas program is this: Helena did this independently, without and aide or teacher to assist her.

My little Christmas tree, that I wrap with love every day, growing before my eyes.

Merry Christmas, Charlie Brown!

Wordless Wednesday - Mirror Images

2008-12-03T05:06:00.001-08:00

For more Wordless Wednesday posts, please click here.

Wordless Wednesday - The New Puppies

2008-11-26T04:00:00.000-08:00

Showing off our newest family members!

Our 8-week old female Alaskan Malamute puppy.

Our soon to be arriving 8-week old Siberian Husky puppy. We get her this weekend.

Just goes to show that no one dog could replace Phelan.

Happy WW everyone!

For more Wordless Wednesday posts please click here.

Change

2008-11-18T06:00:00.000-08:00

All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.

~Anatole France

Change.

It is a word we in the United States have heard a lot (too much, really) over the past several months. And there are many who are looking forward to the changes resulting from the outcome of our recent elections.

But for a person on the autism spectrum, change is a very scary word. Many people with autism crave routine - my daughter Helena is a perfect example. When she was in 1st grade, she had a teacher who led a very unstructured classroom. With the constant changes and lack of strict routine, Helena faltered. Her behavior in school that year was not too good, nor were her academics. Since then, we have had her placed with teachers who have more routine in their classrooms, and not only has Helena's behavior improved.

Even simple changes affect Helena, like asking her to get dressed before she eats breakfast (when normally she does the opposite). She will stammer, and cross her arms, and start worrying if she will have to do this all the time ("Does this mean I have to always get dressed before I eat breakfast?"). Or if, like last night, we cannot sit in the hot tub like we normally do. ("Does this mean we will never sit in the hot tub ever again?").

So you can imagine what last week was like for us - a week of change.

The New Ride

On Tuesday, we traded in our minivan (and a old pickup truck we had recently purchased) for a 2006 Ford F150 Supercab truck. The dealer allowed us to pick up the kids from school in the truck as part of our test drive. Suffice to say, Helena was not amused - "Wh-wh-where's the van? I cannot get into the truck! I can't open the door!" After we purchased the truck, it took her a couple of days before she got used to the idea of the truck.

The Piano Lesson

Wednesday night. We had to drop off the older pickup to complete our deal for the new truck. And, as with most dealings with auto dealerships, this one took far longer than it should have. And it meant that Helena would be about 15 minutes late for her 5:30 piano lesson. No problem, really. I called the piano teacher and she was fine with Helena being late. But it was a big problem for Helena. All the way there she fretted about being late. When we got there, she ran up the steps to the house faster than she ever had before. Julia and I did what we normally do while Helena is at piano - we went over to the public library and read stories until it was time to pick Helena up. We arrived back to get Helena just before 6:15, and as we walked in Helena was getting up and heading out to the car. The teacher told us that Helena was really focused for the first half her lesson, but when the clock read 6:00 (the time her lesson is normally over) Helena began to worry why we weren't there to pick her up, and it affected the last half of her lesson to the point were they stopped a few minutes early.

Our Family Tragedy

The worst change for us came Thursday, when Valerie called me in tears to let me know that one of our puppies passed away.

Phelan was a beautiful Alaskan Malamute - only 11 months old. When we got him, we knew he had a heart murmur, but the breeder said he had dogs with worse murmurs that have lived a long time. We thought we would get more time with him - we were wrong. Apparently he was barking excitedly at the dogs behind us when he had a seizure and his heart gave out.

Five days later, and it is still difficult to write about...

We took the body to the vet before the kids came home from school so they wouldn't have to see him. When they came home, Valerie told them what happened. Their reactions were interesting:

Olivia drew a picture of Phelan alive and Phelan dead, and then she cried.

Nicholas, tough boy that he is, cried. And then he said that since he feels so bad, he should get an extra large snack.

And then there was Helena. Helena asked questions about Phelan and how he died. Then she began to fret about her own heart:

"Is my heart okay?"

"What will happen if I get too excited?"

"What if this happens to me?"

"What will happen when I die?"

It took us a while to calm her down and assure her that she is okay, and that nothing like this is going to happen to her.

The Kittens

Last Thursday night, totally unrelated to the death of Phelan (except maybe in the eyes of God), we adopted two new kittens. They are beautiful white kittens, so similar in appearance that we can't tell them apart, nor have we given them names yet. (it's even heard to tell if they are boys or girls - we think one of each). Two new additions means more change - the first of which is that Helena has to give up her bathroom for awhile until they are adjusted to living with us (and with our two older cats). At first Helena was not amused:

"Why do they have to stay there?"

"Will I ever get my bathroom back?"

"Will I be able to sleep at night?" (the bathroom is across the hall from her bedroom, and she likes to keep the bathroom light on at night.)

But, 5 days in, and Helena has really taken to the kittens. She is always the first one to take them out of the bathroom, and she tries to play with them more than the other three. She is a little rough holding them, but she gets better at it every day. I think part of this is because they remind her of her Webkinz white cat, Princess, which is one of Helena's constant companions.

One thing we have learned on our journey with autism is that gradual changes can be handled quite easily. When Helena was transitioning from second grade to third grade, there were a lot of changes for her - not only new teachers, but a new school building, a new aide, and a new case manager. But Helena had time to prepare for these, and the transitions went quite smoothly. It's those sudden, out of the blue changes, like those we had last week, that are the most troublesome. These kinds of changes usually led to nasty tantrums in the past. The tantrums still happen, but not nearly as frequently. And I admire Helena for the introspective questions she keep asking.

My little girl, now 9 years old.

Growing.

Maturing.

Changing.

Magic Marker Monday: Mother Wind

2008-11-10T13:27:00.000-08:00

May the road rise to meet you.

May the wind always be at your back.

May the sun shine warm upon your face.

May the rains fall soft upon your fields.

And until we meet again may the Lord hold you in the palm of His hand.

-Irish Blessing

Our little artist, Olivia, was at it again, and asked that I share this picture of Mother Wind with all of you.

I pray she is always at your back, guiding you to the warmth of the sun.

Wordless Wednesday: Autumn's Last Stand

2008-11-05T02:21:00.000-08:00

As we head into November here in Montana, snow is becoming a more common word in the forecast in the Missoula valley. Yet Autumn still has some beauty to share...

For more Wordless Wednesday posts, please click here.

Adventures in Halloweening

2008-11-01T20:24:00.000-07:00

Hold on, man. We don't go anywhere with "scary," "spooky," "haunted," or "forbidden" in the title.

~From Scooby-Doo

The day began...well, it actually began about a month ago, when the Halloween decorations were pulled from storage to be proudly displayed. Among the decorations were costumes bought specifically for use this year - witches for Helena and Olivia, Hello Kitty for Julia, and a pirate costume for Nicholas. Except there was one problem: Nicholas refused to be a pirate. "I can just be a baseball player" he said. So the pirate outfit went back into storage.

As Halloween dawned the older three got their costumes ready for their school party. And all was well. But then they came home.

Helena kept her witch costume on. No problem.

Olivia decided to be a cat instead. After a little face paint, no problem.

And then there was Nicholas.

Problem.

He wanted to wear his glove holding a ball. But then we explained he couldn't hold his treat bag that way.

I suggested he wear his batting helmet instead. He complained he would get too sweaty.

I suggested that he could wear the glove, and hold a Halloween bucket instead of a treat bag. He complained he would spill all his candy.

He finally abandoned the idea of being a baseball player, and changed into olive green pants and a dark green shirt.

He said he was going as a Leprechaun.

"But Leprechauns dress in kelly green", we said.

"I am a Leprechaun in Fall.", he replied.

"But you don't have a hat.", we said.

"I am a Leprechaun who lost his hat.", he replied.

Valerie had a better idea. Keep the clothes on, wear some beaded necklaces and sunglasses, and go as a hippie.

"NO!"

"You can wear Helena's flowered leather vest..."

"NO!!"

"Okay, then you need to go get the pirate outfit."

"NO!!!"

Finally, exasperated, Valerie hit on the perfect idea. She took down one of her autumn swags, attached it to a necklace, and put it around his neck.

"You are going as an autumn tree."

"NOOOOOOOOOOOOOOOO!!!!!"

But Mommy had had enough. Her decision was final.

Nicholas screamed so loud his grandparents probably heard him in Delaware.

"I AM NOT GOING!!!"

But he was going. I picked him up and carried him outside. As his sisters got into the van he just stood there.

"I AM NOT MOVING!!!"

So I picked him up and put him in his seat. And we were off.

We always trick or treat in the neighborhood across from the school. There are over 500 houses and a lot of the residents really get into the "spirit" of things. All the way there Nicholas snarled that he was going to just stay in the van. "Fine by me," I told him, "but you will not get to have any of the Halloween candy."

(For the record, we do not let our children gorge themselves on candy after Halloween. We usually let them have maybe one or two pieces a day, and that's if they have been good. Our Halloween candy from last year just ran out a few weeks ago.)

The neighborhood was filled with cars and trick or treaters as we entered. We stopped at the first few houses, and, sure enough, only Helena and Olivia got out to trick or treat. They came back talking about the treats they had received. We moved the car, and the girls got out again. I could see that Nicholas' mood was softening. By the time the girls got out at the third stop, Nicholas quietly informed me that he had decided to trick or treat after all.

Of course, I had brought an extra treat bucket for just such a situation...

Other than an emergency run to Walgreens for a potty break, the rest of the night passed without incident.

We saw ghosts riding atop pumpkins...

A clown giving out popcorn (unfortunately, not GFCF)...

And other spooky delights...

Nicholas even let me take his picture...

We spent over two hours in the neighborhood, and the kids were totally exhausted when we were done. After they went to bed, Valerie and I separated their candy. Not a bad haul this year - about 40% of the candy was GFCF, and thus good for our kids to eat. We'll see how long this batch lasts...

Oh, and I would be remiss if I didn't mention Julia. Hello Kitty was ready to go, but unfortunately Julia wasn't. She was so tired that she slept through it all, do doubt dreaming of the tricks and treats she will enjoy next year.

Where Am I?

2008-10-28T11:44:00.000-07:00

I'm over at The Dad's Center today - please come take a look!

Be back with some new content here later in the week!

Wordless Wednesday - Fall's Blazing Glory

2008-10-22T05:49:00.000-07:00

Travelling East from Idaho Falls, ID on US 26, right before you hit Swan Valley, there is a rest stop overlooking the Snake River promising scenic views. When I stopped last week on my way to Pinedale, WY, I wasn't disappointed:

Looking Northeast into the Targhee National Forest

A more close up view of the Snake River in Fall

Looking West down the Snake River

A close up of the island in the middle of the Snake

Another view of the lonely island

My trip last week also offered a glimpse of winter! Come see at the GFCF Experience.

For more Wordless Wednesday posts, please click here.

Magic Marker Monday: An Autumnal Face

2008-10-06T06:00:00.000-07:00

Autumn, the year’s last, loveliest smile.

- William Cullen Bryant

Autumn, with it's vibrant colors and cool, crisp air, is the favorite season of our household. And as we got out our autumn decorations yesterday, our resident artist, Olivia, was inspired to create an autumn decoration of her own.

No spring nor summer beauty hath such grace. As I have seen in one autumnal face.

- John Donne

For more Magic Marker Monday posts, please click here.

FDR and Autism

2008-09-24T05:41:00.000-07:00

The only limit to our realization of tomorrow will be our doubts of today. Let us move forward with strong and active faith.

-Franklin Delano Roosevelt

At the end of July I was in Washington DC, mostly for business. But my last day there, I had the chance to play tourist. My niece, who lives in the DC area, said her favorite memorial was the memorial to Franklin Delano Roosevelt, one which did not exist when I last visited Washington DC. I took her advice and made a point of visiting the FDR memorial.

The FDR memorial is nestled amongst the cherry trees right along side the tidal basin. It is a series of four stone rooms, filled with waterfalls and statues, and quotes from different periods in FDR's presidency. It is a magnificent memorial to a magnificent man who guided our country through the most difficult of times - the Great Depression, and World War II.

The quote above may not be familiar to some, as it comes from an Address FDR was scheduled to give on Jefferson Day, April 13, 1945.

FDR died on April 12.

The memorial is laid out in chronological order, so if you walk through from the beginning, this quote would be the last thing you would see. But I came in from the end, so this was the first thing that caught my eye, and this quote stayed with me as I reflected on FDR's Presidential life. And it is easy to see that this quote represents exactly how FDR lived.

We see a statue of FDR in a wheelchair, paralyzed from the waist down as the result of a bout with polio in the 1920s. But we learn that FDR refused to used that wheelchair in public, using various props to stand with determination, and in defiance of the disease that had afflicted him.

We see statues of men waiting in the breadlines during the Great Depression, next to pillars depicting the promise of FDR's New Deal.

We come to a room with a loud crashing waterfall and chunks of granite scattered about, symbolic of a country ravaged by war. Yet there is FDR, depicted in a larger than life statue - boldly determined to end the tyranny of the Nazi and Japanese regimes.

And then the quote...at the end of the memorial, at the end of FDR's life. By the time he was to recite these words the Great Depression was history, and the war in Europe was less than a month a way from being over (with the ending of the war in the Pacific a couple of months after that). This was FDR's plea for all of civilization to come together, to work toward a common goal - peace.

I can see why my niece loves this memorial. I think it is my favorite too.

It is so easy to doubt when dealing with autism. I know there are many parents like us: you get the diagnosis of autism, and then you do your research. You try ABA and Floortime, blood tests and MSA, EEGs and MRIs and other medical acronyms too numerous to mention. You spend thousands upon thousands of dollars (since most medical insurance companies won't pay for any of these services). Maybe you have success with a particular treatment. In our case, we didn't. We switched to the GFCF diet - that worked. We did hippotherapy - that worked. But for us, that was it.

Talk about a Great Depression!! At least in some sense of the words...

And then there are the schools. Can we forget that experience? In most cases, it's a game of "How can we satisfy IDEA expending the least amount of effort possible?" In our case, it was asking for "the Cadillac of Services" for a daughter who was described as not having an imagination, and who would just be "the quiet one in the classroom." For some people, dealing with schools can be an all out war, in the sense of angry notes, due process, and, in some cases, restraining orders. World War II? No, but a war nonetheless.

Let's face it, the autism experience is full of doubt. Does anyone really care about my child's needs? Is she going to get better? Is she truly going to get a free and appropriate public education?

But the words of FDR ring true - we need to put that doubt aside and move forward. And how can I put my doubts aside? Maybe like FDR might have done, by looking back and seeing where we came from.

My grandmothers lived through the Great Depression and World War II, and when they were alive the told me about those times. And it was always phrased something like this: as bad as you think things may be now, it's nothing compared to that era. They lived through the worst life could throw at them, and they survived. And when a crisis occurred they had to deal with, they had no doubt that they would conquer it, because they had already lived through far worse. Perhaps this was the thought process of President Franklin Delano Roosevelt as he prepared his Jefferson Day 1945 speech as well.

The only limit to our realization of tomorrow will be our doubts of today. Let us move forward with strong and active faith.

It has been six years since Helena's autism diagnosis. And as I look back now on our battles with doctors and schools and meds and insurance companies that brought so much anxiety and frustration into our lives, one thing sticks out - how much progress Helena has made despite it all. She is not quiet in the classroom, but quite verbal, asking and answering questions, participating in school plays and other activities, and trying her best to fit in socially. And as for her not having an imagination? I think she's proven that to be far from the truth!

By no means is she "cured," and there will be more frustrating moments, but I feel like we have taken the worst autism has to give, and we have - she has - survived. And any doubts I have today about her future grow more distant with each passing day.

I say this with strong and active faith: Autism is not going to rule my child's tomorrow. In that, I have no doubt.

For more information about the FDR Memorial in Washington DC, please check out Jennifer Rosenberg's piece on the memorial here. All pictures courtesy of Jennifer Rosenberg at About.com.

What I Want

2008-09-19T12:57:00.000-07:00

If we got one-tenth of what was promised to us in these acceptance speeches there wouldn't be any inducement to go to heaven.

- Will Rogers

Amongst all the talk of the economy, the meaning of the words "community organizer", and which pig is wearing lipstick right now, special needs has become a major topic of this year's election. It actually has been all along - both candidates released statements concerning their views on autism which an be read here. Of course, special needs is more in the forefront now with the addition of a vice presidential candidate with a special needs child. And indeed, Governor Palin has said that if elected she will work on behalf of special needs children and adults.

Both Senator McCain and Senator Obama supported the Combating Autism Act of 2006 (or at least Senator Obama supports fully funding the Act, since he was not yet in Congress when it passed. Senator McCain supports full funding as well). But does that really translate into action after January 23 (remember "Read my lips...")? And does having a special needs child mean that you will make changes to assist those with special needs? I mean, our Governor here in Montana has a child on the autism spectrum, but I don't think he's done too much to address the needs of special needs during the past four years.

One can only hope so. But at this point, their words are just that - words. They have absolutely no meaning at all.

I am particularly concerned about education, and IDEA. Under IDEA, we, as special needs parents, as entitled to a free and appropriate public education for our children in the least restricted environment. Some people are fortunate that they actually receive this. Most of us, however do not. Both Senator McCain and Senator Obama support fully funding IDEA. Fine. Both Senator McCain and Senator Obama support better pay for teachers. Fine. In short, both Senator McCain and Senator Obama support throwing money at the problem.

But is money the answer?

Here is what I want:

I want teachers who want to teach, not teachers who teach just because they can make good money.
I want teachers who actually have training in how to teach special needs children, not a teacher who is qualified to teach a special needs child because he or she has had one in their class before.
I want SLPs and OTs and school psychologists who are not afraid to truly tell what a special needs child needs for services, for fear of being fired.
I want better qualifications for paraprofessionals.
I want IEP meetings that are productive, and that don't make you feel like you are at your public lynching.
I want teachers who mistreat others, like the teacher of Alex Barton, to be fired on the spot and have their teaching credentials revoked.
I want the same thing to happen to school officials who support such atrocities.
I want the horrid No Child Left Behind law revoked and replaced with one that actually lives up to its intent.

Senator McCain? Senator Obama? Are you listening?

Remembering...

2008-09-11T04:06:00.000-07:00

I see America, not in the setting sun of a black night of despair ahead of us, I see America in the crimson light of a rising sun fresh from the burning, creative hand of God. I see great days ahead, great days possible to men and women of will and vision.

- Carl Sandburg

We interrupt this Experience to remember another experience on this solemn day.

It was a little before 9 am, and life was good. I was 9 months into my new job with the EPA in Atlanta, my wife and I had just moved into our new home in a small town west of town, and we were expecting our third child. One of my coworkers was talking on the phone, and the person he was talking to told him the news - a plane had just crashed into the World Trade Center. We all scrambled to call up CNN on our computers just to see the spectacle of it all.

Then we heard that a second plane had hit the World Trade Center. And suddenly we knew what was happening. Our hearts sunk - we were under attack.

Then came the reports of the third plane the hit the Pentagon, and finally, reports of Flight 93 going down in Pennsylvania. We were in shock. I called my wife and told her the news. And then I prayed.

By 10:00 we were told we could go home if we wanted to - Atlanta has the third largest concentration of Federal employees in the nation working in a tall building with no buildings to impede a plane from crashing into it. Oh, and the world's busiest airport as well. I made my way to the train and began my hour+ commute home, lost in my thoughts. When I got home, my wife greeted me at the door and we just held each other close.

We listened to the news all day as the first tower fell, then the second. We heard the horror stories about those trapped in the rubble, and stories of the incredible bravery of the NYFD who risked their lives - and lost their lives, selflessly trying to rescue as many people as they could. Not to mention the brave people on Flight 93.

And then we fought back.

I don't mean we fought back by going after the Taliban and the other terrorists like we did. We fought back by showing our resolve. I remember Clark Howard, noted economic talk show host, talking about how as soon as the airports reopened he was going to buy a plane ticket just to show he would not be intimidated into not using air travel. I remember the Lowes commercial depicting a neighborhood now full of American Flags as a show of unity. And I remember people of different races, creeds, colors, and political perspectives, putting differences aside to show the world that we will not be intimidated.

It has been seven years since that day. I have not since that day watched the attacks again. I've never seen the movie Flight 93 and I probably never will. I really don't want to relive that day again.

But I will never forget that day, the darkest day I hope I will ever experience on this Earth. I will always remember those who bravely lost their lives, and their families. And I will always remember the American resolve to never, ever let this happen again.

Magic Marker Monday - A Perfect Day

2008-09-08T06:09:00.000-07:00

Every artist dips his brush in his own soul, and paints his own nature into his pictures.
~Henry Ward Beecher

Welcome to my first ever submission for Magic Marker Monday! This wonderful event was started over at 5 Minutes for Special Needs by my dear friend Michelle, one of that site's contributors who primarily writes at In the Life of a Child.

This submission comes from the resident artist in the family, Olivia. As we spent our day yesterday rearranging furniture and ultimately giving the kids a new art table (well..actually, the old kitchen table), Olivia took to drawing. She told me she drew this specifically to put up on my blog. So, at her request, here is Olivia's latest gem for all to see!

Yep...looks like a perfect day to me...

For more Magic Marker Monday posts, please click here.

Catching Up

2008-09-02T06:50:00.000-07:00

With lots to be done around the house this week I will be taking a break from the blog world. But I'll be back next week with new posts. Plus, I will be debuting on a new site next week. Please stay tuned...

See you next week!!!

And So It Begins...

2008-08-27T12:06:00.000-07:00

I'm not rushing into being in love. I'm finding 4th grade hard enough.
- Regina, age 10, as found at http://www.brownielocks.com/teachingquotes.html

Today is the day - the first day of school.

I've raised my concerns, and met all parties involved. For the record, I think Helena's teacher will be okay. The case manager too, though she is getting her feet wet in a new position (did I mention she does bring 5 years special ed experience to the table?).

The first day is always chaotic at our school. Most parents opt to bring their kids to school that first day, to make sure their children know where to go and to meet the teachers, usually for the first time. So traffic is always a nightmare, even when the entire school is not under construction. The first fall we were here, we timed it to arrive 20 minutes before school started, and ended up 20 minutes late.

You know what they say" "Fool me once..."

Since then we have timed it to arrive about 30 minutes before school, and have had a much easier time. This year, we increased it to 45.

Things actually ran smoothly, as is usually the case when you have to actually plan around something. The police were directing traffic, and plenty of school officials and construction workers were directing people and traffic on the school grounds. Kids were taken to their classrooms safely, letters about the children's diet were passed out, and the school psychologist, with whom Helena gets along with well, assured me that things will be okay.

Umm...okay, I guess.

There's still no swing on the temporary playground, but the swings at the K-2 playground are still there. Maybe, just maybe, Helena can have a little swing time???

I pick them up in two hours. We'll see how the first day really went...

Construction clipart courtesy of http://www.webweaver.nu/

The Least Wonderful Time of the Year

2008-08-25T08:20:00.000-07:00

In the first place, God made idiots. That was for practice. Then he made school boards.

- Mark Twain

This week is one that many have already experienced this year. It is a week that some parents embrace with joy, and some children embrace with dread. Same is true for some teachers.

It is the first week of school.

It's one of the worst weeks of the year for me.

Once again, I have to entrust my ASD daughter to people who may not necessarily understand how to deal with an ASD child.

Yes, they may have had a child with autism in their class before (and that's about the extent of their special needs training), but do they really understand how to handle them? Do they really understand Helena's specific needs, which of course are different from any other child?

In Helena's first full year of school (pre-k), we had to battle to get an aide for her. We were told that we were asking for "the Cadillac of services" and that "she would just be the quiet one in the classroom." This from the Director of Special Education for the school district!!! In other words, we'll pull her out of the class for some therapy, but we're not going to help her in the classroom. They relented after we threatened legal action. She also came home with some artwork made with pretzels, after we repeated explained she was on the GFCF diet. They didn't seem to get that even though she didn't directly eat a pretzel, she did handle them, and then she puts her fingers in her mouth, and then...sigh!

Things went a little better when we moved to Montana, when Helena was in the middle of Kindergarten. But then they assigned her to a first grade teacher they said would be wonderful for her. And maybe she is a wonderful teacher. But she runs her classroom with little structure. And what do ASD children need? STRUCTURE!!! Helena was miserable, and she lashed out at anything and everyone. We had to put a behavior plan into her IEP.

Second grade went better - more structured classroom, better aide. And third grade went ok too, despite transitioning to a new building, with yet another new aide. But when she had an incident in the classroom, we suddenly all discovered that her bahavior plan was no longer in her IEP!! The teacher and the aide panicked - they had no idea what to do!

So now Helena is in fourth grade, and school starts in two days. Here is where we stand:

We just found out today (that's right, two days before school starts) that Helena's case manager no longer works at the school. We have the name of the new case manager, and hopefully we can meet her before school begins.

Helena has met her new teacher, but we have not. Again, hopefully we can do this in the next two days.

But this is the worst of all:

This is the playground for grades 3 - 5 at Helena's school. Or should I say, was. Back in May, they started construction on all parts of the school. They are adding classrooms, changing traffic patterns, and building a new administration building. A newsletter sent home from the superintendent proudly talks about how work is on schedule for a better school. The contractor talks proudly about how much dirt they have moved and how many sewer lines they have laid. They see progress...

All I see is no parking, constant noise in my daughter's building from all the construction (oh yes, she is noise sensitive), and most importantly, no swings. They will let the children play in the grass field across from the building, but there is no playground equipment there.

Do you know how important swings are? Helena loves them! It is the one playground apparatus that really calms her down, and the only one she looks forward to using. Now that is gone...

The least wonderful time of the year? Definitely. And even more so this year.

Then again, we haven't signed the IEP yet.

I think I'll slip in a provision that Helena needs to swing every day...

lend4health: A Great Idea Worth Supporting

2008-08-14T06:08:00.000-07:00

Friends are angels who lift us to our feet when our wings have trouble remembering how to fly.

- Author Unknown

My friends, I would like you to meet Tori. She is a mother of two. Her son is diagnosed with Sensory Processing Disorder/Sensory Integration Dysfunction (SPD/SFD). They started the GFCF diet last year, and found that is not only helped her son, but their older daughter as well. In fact, the GFCF diet is how I met Tori, as she commented on my recent series at the GFCF Experience concerning the GFCF diet in school.

But this post is not about the GFCF diet, nor Tori's children. It is about what Tori wants to do for those in need.

Tori has started a program called Lendforhealth, which she blogs about here. Parents of special needs children know that biomedical treatments are often recommended by DAN! doctors as a way to improve their child's condition. But visits to DAN! doctors and these treatments are expensive, and are rarely, if ever, covered by insurance. Even for parents with moderate income, the costs may put this option out of reach.

Lendforhealth is looking to help families of special needs children by providing community-based interest-free microloans to cover the costs of doctors visits and biomedical treatments. Tori works with the applicants to verify their references and their need and set up loan repayment terms. She then posts this information at the lendforhealth blog, and asks for lenders to help fund the loan.

And who are the lenders? YOU!!!

Via Paypal links established by Tori, you can help fund a specific loan, in any dollar amount up to the loan amount. Once the community has completely funded a loan, Tori will draw up a contract with the lendees and fund their request. Once the loan is repaid in full (terms of repayment are posted with each request, and you can also track the repayment progress at lendforhealth), the money will be returned to you via Paypal.

All loans issued through lendforhealth are interest-free.

Having lived through DAN! doctor visits and biomedical treatments with Helena, I well understand the costs involved, and the importance and need for this service. Please visit lendforhealth and consider helping a family in need.

Tori, thank you for your inspiration and for providing this much needed service. And friends, thanks for being the angel that may help a child and their family remember how to fly.

43

2008-07-27T08:45:00.000-07:00

I could not, at any age, be content to take my place by the fireside and simply look on. Life was meant to be lived. Curiosity must be kept alive. One must never, for whatever reason, turn his back on life

- Eleanor Roosevelt

Today I am celebrating yet another anniversary of my birth - 43 years ago today, in a hospital in Trenton NJ. I think the quote above by Eleanor Roosevelt is so true - I can't live life backwards, I have to look forward, and live life to the fullest.

And with four kids and a beautiful wife, living life to the fullest is not a problem!

I am using the day to respond to a couple of memes that I've been tagged with:

My friend Carrie, famously known as the Ginger Lemon Girl, has started a special new blog call Heart of a Servant. She tagged me to write about five of my favorite things,and then tag five others to do the same. How wonderful! I will post those here.

Over at the GFCF Experience, I wrote about yet another tag, this one from Sea at Book of Yum. She tagged me to write seven weird things about myself. My things weren't so weird, but you can read them here.

So, before I get started, I want to share something I also shared over at the GFCF Experience, some people whom I share a birthday with you may or may not know:

Norman Lear (Creator of All in the Family, among others)
Bill Engvall (I know I've deserved a lot of signs over the years!)
Paul Levesque (better known to WWE fans as Triple H)
Maya Rudolph (SNL)
Alex Rodriguez (yes, THE A-Rod)

and, of course, Bugs Bunny.

On with the meme! I think I'll do favorite things from five different categories:

1. Favorite time of year: Autumn. I just love the crispness of the air, the golden colors of the leaves, and all the wonderful fruits and vegetables that come in season that time of year.

2. Favorite holiday: Christmas. It is just so festive. And there is nothing more magical than watching the eyes of a child light up as they open their presents. And yes, I do still believe in Santa Claus - I know him personally.

3. Favorite thing about Missoula, MT, where I live: Missoula is an amazing town to live in, and I love that you have literally endless recreational opportunities within a two hour drive: several ski areas, hundreds of trails, Rattlesnake National Recreation Area, the National Bison Range, Flathead Lake...the list goes on and on.

4. Favorite foods: The running joke in the house is that I like anything that begins with the letter P - peanuts, pistachios, popcorn, pretzels, peaches, pineapple...

5. Favorite thing about life: There is no greater joy than that which comes from being a parent. Yes, it's not easy, and it is sometimes quite maddening. But at the end of every day, I can look in on my children peacefully sleeping, and and recognize and thank God for the miracle they truly are. I wouldn't change it for the world.

Now, who to tag, who to tag...

I tag:

Katherine, the GFCF Mommy

Queen Bee, from Diary of an Autism Mom

J, from Austin's Autism Journal

T, from Send Chocolate

Trish, from Another Piece of the Puzzle

Thanks to those of you who read this blog. I really appreciate your support.

Looking ahead to a wonderful year!

I Would Like You to Meet Some Very Special People

2008-07-23T08:37:00.000-07:00

"Be the change you want to see in the world."
-- Mohandas Gandhi

Today I would like to introduce you to some very special children. Please click on their names to read 10 special things about them:

Please meet the Prince, courtesy of his Mom, Katherine. He is a very polite child who is into planes. trains, automobiles, and anything else that moves.

Next, please meet The Elder and The Younger, courtesy of their Mom, Jen. Like the Prince, The Elder and The Younger are quite polite and love things that move, especially trains.

Now please meet Matthew and Joshua, courtesy of their Mom, Lisa. Matthew loves animals and video games. Joshua loves pizza and swings. Both boys love to read books.

Please meet Matthew, courtesy of his Mom, Cyndi. Matthew loves to sing and dance, and has a wonderful sense of humor. Oh, and according to his Mom, he is quite the "ladies man!"

Next, please meet James, courtesy of his Mom, SoCo Mom. James, loves the moon, school buses, and schnuggles.

Please meet Jack, courtesy of his Mom, Judith. He loves the outdoors and has the greatest belly laugh.

Now meet Daniel, courtesy of his Mom, Julie. He loves chocolate and has a beautiful smile.

Please meet Brad, courtesy of his Mom, Laura. He likes rough housing with his brother, and even has his own "harem!"

Next, meet TC, courtesy of his Mom, Kristi. He is adventurous, artistic, and has a contagious smile.

Finally, and most DEFINITELY not least, I am honored to present my daughter Helena. Helena loves dolls and clothes shopping, and let's me know it when I go through a yellow light!

Have you read them all?
Good.
What do you think?

They are beautiful children, who like things typical of their age. The boys like trains and cars and lots of playing. The girls (or girl) likes clothes and dolls. These are the things that the typical boys and girls their age like.

They are special children with special parents who love them and are doing all they can to raise them to be solid contributing members of society someday. They are part of our future.

They are also children who are just plain special. And contrary to the belief of some, they are not spoiled brats who need someone to tell them they are acting like morons...

...just because they are on the autism spectrum.

Jen says it best:

"As a family we have come a long way and have [become] closer, more tolerant and patient, and just plain better people because of this term called Autism."

Changing the world, one child at a time...

Do you have a child who is just plain special? Please join in this fun meme and post 10 things about your child, then comment here with a link to your post. I will keep a list of the posts here in the sidebar.

Please join in and let the world know how special your children are!

Baby Steps Make Giant Leaps

2008-07-19T22:05:00.000-07:00

Pessimism has never won any battle.
-Dwight D. Eisenhower

Friday night, my wife and I were cutting the grass. She was on the riding mower, alternatively giving rides to Nicholas and Olivia, while I was pushing. At one point, I looked over at my wife, and there, next to her, while the lawn mower was running, was Helena.

And my heart burst with joy.

I wish you could understand how monumental this was. My daughter, like many on the autism spectrum, is sound sensitive. She has been so afraid of the lawn mower that she would run as fast as possible into house - into her room in the basement, the minute she knew I was getting the lawn mower out. Same thing with the vacuum cleaner - there were times when she was literally trembling just at the the sight of the vacuum because she was so afraid of the noise. Even the mixer caused problems for her.

But over time, slowly but surely, things have improved, and somehow she has become desensitized to the noise. Oh she still removes herself from the room when we are vacuuming, but she no longer trembles, and she doesn't remove herself so far away. And last night, when we pulled the mixer out to make cookies, she stayed nearby.

Living with autism can be really frustrating and maddening sometimes, because success is measured in baby steps - a gradual improvement when you wish things would happen overnight. And sometimes those baby steps are regressions, which only adds to the frustration. As much as Helena has improved with regards to sound she has regressed in some other areas, and are still trying to figure out why.

But even with the regressions, I look back now and realize how far Helena has come just in the last three years, one small step at a time. And I realize that all those baby steps, over time, have turned into a giant leap from where she was. And it is that progress that fuels my hopes and dreams for her to succeed and achieve what she wants in life. Why Not!!!

Those little baby steps I see are my optimism that in the end we will win the battle.

The One Less Traveled

2008-07-16T08:55:00.000-07:00

...Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

- Robert Frost

The moment is forever etched into my mind (as well as my wallet). Helena, 4 years old, being evaluated by a developmental pediatrician in Atlanta with whom it took six months to get an appointment. They were working with blocks, and Helena was asked to stack them in a particular way. This is something I had seen Helena do at home many times, but the d.p. had her own way of asking her to do it, and when Helena did not respond, it was on to another activity. It was the beginning of my disenchantment with developmental pediatricians.

Did this doctor not understand? It was not that Helena didn't know how to do the activity, it was that you (doctor) didn't communicate what you wanted in a way she can understand!

This next statement may seem so obvious, yet so many people don't seem to get it - people with autism are different. They think differently, and communicate differently. I mean, what is stimming really? On the surface, it's a repetitive movement that can seem inappropriate. Dig deeper, and you realize that the person is communicating a need for sensory normalization.

Temple Grandin titled her autobiography Thinking in Pictures, and what an appropriate title that is!

People with autism take a different road, one not traveled by most, yet one that seems to get more traffic every day.

When Helena was diagnosed, it was over 1 in 200. Now we are at 1 in 150...

But just because the road is different doesn't mean the destinations aren't the same, and the same things aren't achieved.

Taking the road less traveled? Why not!

Welcome to The Autism Experience - Why Not?

2008-07-14T08:00:00.000-07:00

Some men see things as they are and ask "Why." I dream things that never were and say, "Why not?" - Robert F. Kennedy

Welcome to The Autism Experience, my new blog!

By way of introduction, my name is Thomas. I am a devoted husband and a proud daddy to four children. My oldest child, Helena, is a high functioning child on the autism spectrum who was (finally!) diagnosed when she was three (she is now nine).

Like most parents of autistic children, once we received Helena's diagnosis, and after the shock wore off, we began to research how we could help her. We did DAN protocol things and not so DAN protocol things, and really found two main things that really benefited Helena - the gluten free casein free (GFCF) diet and hippotherapy.

For the past year or so I have been blogging over at the GFCF Diet Experience. The purpose of that blog was to use our experiences to help folks who were having difficulties transitioning to the diet, including tips and recipes. As the blog evolved and I met new people in the blogosphere, more and more I felt the need to post my thoughts and experiences autism. I am at the point now where I feel that my thoughts on autism and related topics deserve a blog of their own, which is why I created The Autism Experience.

What can you expect from The Autism Experience? I think the quote by Robert F. Kennedy speaks volumes.

I'm beyond the point of asking "Why?" How our daughter ended up on the spectrum, as compared to how other people ended up there, is a moot point. She's on the spectrum, and it is up to us to make the best of the situation, for her most importantly, and for us as well.

So this blog is about my dreams of "Why not?" Helena wants to be a teacher when she grows up. Why not? Helena being able to adapt in different social situations? Why not? Society as a whole becoming more accepting and understanding of those with autism? Why not?

I believe that my daughter can achieve whatever she dreams, and I dream along with her. In our situation, living with autism just means that the path taken will not be the one normally travelled. There will be lots of bumps along the way, lots of frustration mixed in with the joy. But it is a path that can be travelled successfully to the end. I hope our journey can be an inspiration for others to find their own path of hope.

Welcome to our world. Please come in and stay a while.