Tuesday, November 8, 2011

Hope and Happiness


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.

Wednesday, February 17, 2010

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

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.

Wednesday, January 20, 2010

IEP Day

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!