Back to School 2009...and Beyond

"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

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.