Monday, March 22, 2010

An Unseen Side Of Autism

I've decided that I will blog once a week about autism so as to keep awareness high and burnout at bay.

Lately, we've been seeing a lot more about autism in the entertainment world. Not only are more athletes and actors sharing their stories of dealing with the disorder, but it is being made into art. I don't watch Grey's Anatomy but am well aware (thanks to my mother and several other rabid fans in my friends and family) of a character in recent seasons who has Asperger's syndrome. I'm asleep when Days of Our Lives comes on, but one of the show's writers has a son with autism and in recent years wrote autism into the show through one of the young children of two characters. But I don't work Saturday nights and so I, starting last week, have been watching Parenthood. You know, the much hyped new series by Ron Howard and Brian Glazer loosely based off the Steve Martin movie? I nearly rolled my eyes when my husband told me there was a character who was "high functioning with asperger's" on the show. I certainly went in with the glazed over look. After all, while it was great to see Hollywood acknowledging autism, it's gotten cliche'. Just as most hip series now have the "token gay character" it seems almost a given that if it's new, and especially if it has kids, there will be a character with some type of developmental delay or behavioral issue.

But that was before I watched this week's episode. Max, the young boy who is high functioning with asperger's, is on the quest for a new school. Well, his parents, Adam and Kristina are. In the last episode they received his diagnosis. While high functioning, Max does not do well in a traditional system and has actually been dismissed from his previous school. Adam and Kristina have found an alternate, a private school called Footpath that they fall in love with despite it's high price tag. They then find out there is not a space for Max in this school until the following fall, too long to wait. Like all good parents, they fight for Max to get an interview. The principal relents. Max goes in for his interview at the conclusion of which, the principal tells them they will make a decision by the next day.

And this is where the story takes a turn I did not expect. As Max exits the interview, he is greeted by his parents and Aunt Sarah (who has brought coffee for the nervous Adam and Kristina) he turns to them and asks, "Did Haddie win her game?" They have missed their teenage daughter's soccer tournament. Not just missed it, they forgot all about it. When they arrive at the soccer field. Haddie is the only one there waiting, with her bag and trophy. She doesn't speak as they family goes to their car.

Later, Adam comes to Haddie's room and apologizes and tells her he knows it's been a rough couple of weeks for her too. Haddie's reply, "weeks, it's been years Dad." She goes onto recount how Max ruined a birthday celebration for her (knocking over a cake because he was scared of the candles) and how she has had to change her life to accomodate his needs. She doesn't yell, she doesn't rant, she just states this to her father whose face changes as he realizes the uncomplaining Haddie has had difficulties he had never taken into account. When Haddie asks if Max got into Footpath, Adam tells her how proud he is of her.

Lately, our family has seemed to be a rarity. We have an autistic child and chose to have more children. While the boys are, thus-far, normally developing, we knew the risks and we took them. When people find out about Shelby and then that we have two more children, their responses range from admiration to mild-outrage. To be honest, I'm offended by both.

We did not decide to have a second and third child to tempt fate or to prove anything to anyone. We wanted Shelby to have siblings. That was it. We knew God was not ready for our family to be complete, so we remained open to life.

On the other hand, it is hard not to feel resentful when someone tells you that you are being a bad parent to your autistic child by having other children who also require your attention and/or unfair to the normally developing children because an autistic child requires so much attention.

I realize that these people are speaking from their own fears and ignorance regarding autism or "special needs" in general. I know that for some families, one child with a developmental delay is all they can handle. We are a bit different in that respect. I also understand that it is easier for people to contemplate having a child with special needs in a larger family when that child is the youngest. It seems to be logical that the older siblings were normally developing, there was no reason to suspect this child would be any different and when he or she was born and was discovered to need more attention, the family simply decided there would be no more children. The big kids help the younger, so there is more support for the parents.

But Shelby is our oldest child. It's very hard for people to understand why we would risk a second child with autism. Much less a third.

Siblings of autistic children--and children with other delays-- don't have it easy, that's for sure. Older or younger, they know their brother or sister is different and not always in ways one wants to be different. And whileit's hard being siblings in a family where everyone is normally developing, a sibling with a delay is a special challenge. It means that other children do sometimes get caught up in the shuffle, even by the most attentive parents, and sometimes have responsibilities thrust on them that they didn't ask for, much less want.

I will be honest, I cried when I heard Haddie's words. I cried at the thought that Joseph or William could one day say the same thing about Shelby. There is no doubt, they will have to make sacrifices for her in their lives that they might not have had to otherwise. I recently had a discussion (okay, an argument) with my mother and Jeff about Shelby's IEP meetings. I loathe the experience as it was so awful the first time we went through it and I found out that people who have had less than an hour with Shelby are ultimately 100% in control of her educational future and I'm basically asked to be there as a formality. I was told at one point during a meeting that as a "good parent" it was my responsibility to do what was recommended by the professionals there and anything other than their recommendations was proof that I was not invested in my child. In other words, if I didn't like what they said, I was a bad parent. These "professionals" (it leaves a really bad taste in my mouth to refer to them as such) fail in a very critical way. They are not assessing Shelby in her family situation, in what an extra hour of the day of lugging her brothers around does to those two children. According to the people in the IEP meeting, I am to be a good parent to Shelby at the expense of my other two children. And that is something I flat out refuse to do.

Shelby is autistic. Shelby is a daughter. Shelby is a sister. Shelby is a member of a family. My hope is that television shows like Parenthood may help shed light on the fact that when psychologists, teachers, therapists and other "professionals" fail to take into account the impact of a child's education/therapy/treatment on his or her family, they fail that child as well. We are Shelby's family, we are not invisible. What impacts her, impacts us as well. And we are not going to be ignored. My sons will not someday come to me and say, Mom, it was really upsetting how you never came to any of our things because you were always finding new therapies for Shelby. And Shelby will never feel that she held her brothers back from anything.

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