Adam and Jenny

I sometimes write posts that never make it on the website. For every 10 I write, only 9 of them make it on here. I usually delete the ones that sound too depressing or mundane. I also delete quite a few of them that discuss Seporah and autism. I delete them because it feels like a lot of time I am complaining when in fact I am quite blessed in that respect. Just the other day I was talking to a friend and saying Seporah was doing wonderfully, so much better than I ever thought after she was diagnosed. Trying to raise Seporah before she was diagnosed was like we were trying to build a treehouse without any wood and as soon as we got wood (ie figure out what was going on and got the right tools) everything went up easier. There are so many children with autism that will never make it to where Seporah is at 4 years old. I also see many children at work with horrible awful things and families going through trials that I would never want in a million years for my family. So when I talk about Seporah and autism it feels like I’m being ungrateful. I’m not, I’m very grateful and I love my daughter a lot. She’s one of my favorite people to be around.

Long story short, Adam post was not actually meant to go on to the website, but since Lynda asked about it I figured I’d finish it and post it, along with one about Jenny McCarthy (initially titled I Never Thought I’d Have Much In Common With a Playboy Playmate) because the title at least was kinda funny and I really liked her book significantly more than I thought I would.

So this movie Adam came out on DVD, but I could not find it anywhere. I think it had a considerably small target audience, it being a romance between a man with Asperger’s and a normal functioning woman. I went to Wal-mart, Suncoast Company, Best Buy and Borders on the day it came out and no one had it in. So I had to wait for amazon to ship it to me. It’s got Hugh Dancy in it (Ella Enchanted, Confessions of a Shopaholic, King Arthur, Black Hawk Down) and Rose Bryne (Knowing, Marie Antoinette, 28 Weeks Later, Troy). It looked pretty good and got really good reviews, but never came to the theaters here on the island. So yesterday was the first day I saw it.

I think the number one movie people think of when they think of autism is Rainman, I haven’t actually seen it as it hadn’t interested me before the past year and since then I’ve only heard very negative reviews from most autism organizations. Some of the movies I have seen with autistic characters are What’s Eating Gilbert Grape and Family Pictures, both featuring low functioning non-verbal. And then The Other Sister, which honestly if you ever saw the temper tantrum she throws in the beginning, is exactly what Seporah’s temper tantrums looked like, they lasted an hour and she had 5 or 6 a day (she still has them every now and then, but nowhere near like she use to).

The tagline for Adam was “A story about two strangers, one a little stranger than the other.” I really enjoyed the portrayal of someone a little “stranger” rather than the general person’s view of what autistic people look like (either extremely gifted or low functioning). With the current rate of 1 in 150 children being diagnosed with autism (including Asperger’s), the incidence of children looking like Adam and Seporah will be significantly higher than Raymond in Rainman or Arnie from What’s Eating Gilbert Grape.

The one person everyone seems to know when talking about autism is Jenny McCarthy. I don’t think very highly of people who model for magazines like Playboy. Not that I think about them hardly ever since I’m not into porn, but when I do I’m usually pretty sure there’s something wrong with them and they’re complete and total airheads, either that or severally damaged, money hungry and mean. Because really what normal, intelligent or nice person would choose that as a profession? Every third person who I discuss autism with asks if I have read Jenny McCarthy’s book? My reply was always well no, I can’t say that I have or that I will. I find neither being a Playboy Playmate nor being an activist against heterosexual marriage as adequate backgrounds for writing a book, especially about autism.

I picked it up last week at Borders on the clearance rack for $5.99, after being tired of not being able to adequately answer people’s questions concerning her. I was very glad I did. I do not think her advice is right for our family, and the first 2 chapters were about her son developing seizures (autism and seizures often go hand in hand, another thing I’m extremely grateful I don’t have to worry about), so those parts I didn’t pay as much attention to. But the rest of the book with her describing her life with her son on a daily basis and the challenges she faced were very, very similar to mine.

She talked about the little quirks that were just her son that always made her smile that eventually she realized were just signs of autism. And then how she couldn’t believe that she never noticed them as a bad thing. Or how she never really noticed her son didn’t say “yes” or “no.” Ever. How he just repeated words to get what he wanted or ignored her. Or how he enjoyed Baby Einstein while he was 2 and 3 years old and didn’t want to watch anything more advanced. Or the lack of imaginative play.

For the most part I can handle those things, but the issues that involve other people and public drive me crazy since other people frequently look at me like I’m a bad parent and what’s wrong with your kid? Jenny talked about being in an elevator and an older couple asking her son basic questions and her son not being able to answer, then she eventually just answered them to be polite. Seporah could not answer basic questions. It was beyond weird to try and explain to other people she couldn’t understand the question they were asking or to explain the fact that she didn’t get second degree identification. While explaining it once about 6 months ago a friend asked if Seporah would ever be able to answer questions. My response being significantly more confident than I felt, “With Steven and I as her parents she will.” Seporah and I sat down and rehearsed and rehearsed and rehearsed for hours on end with Seporah answers, “What’s your name?…Your name is Seporah…What’s your name?…Your name is Seporah…What’s your name?…Your name is Seporah…” This went on for months, the rehearsals of what an appropriate answer is. Then on October 13th I asked, “What did you do in school today?” (something I asked every single day and never got an answer). Her response, “FIRE! FIRE STATION!” This scared the crap out of me, but I was beyond elated that she answered a question I asked. Turns out they had just been learning about fire stations and fire fighters and what to do in case of a fire, there was not an actual fire at the school. Since that time she’s been getting better and better about questions. Now answering most that are given to her.

Jenny also discussed her sons behavior and other’s reactions in public. I remember one of Seporah’s temper tantrum in particular that happened in the Children’s Museum (where strollers are not allowed), it started and we had to leave. She screamed and screamed and screamed and I ended up literally dragging her out by her wrist. Everyone was staring at me carrying a very scared 13 month old (I think Felicity always thought I’d forget about her when Seporah got like that) while dragging the hitting and kicking and biting 3 year old. It took me 15 minutes to get her to the car due to her fighting so hard. I sat Felicity down and then Seporah took off in the middle of a street with oncoming traffic. Here’s some advice, don’t talk under your breath about bad parenting skills and certainly don’t say what a brat the child is it purposely loud enough so the parent can hear and really if you’re going to stare at least help the mom by offering to carry a bag or the non-screaming child. Because a lot of temper tantrums you can’t stop at all. FYI, Since she has learned to communicate better, the temper tantrums are nothing like what they use to be though.

(See this is why I delete posts like this, they end up sounding depressing and they’re really not meant to be). I do recommend the book, not for her advice, just for the understanding of what life is like. It was good. And despite the fact that I don’t care for her past profession at all, I’m glad that she wrote the book and brought light to a way of life that affects me on a personal level. It’s helped make the public understanding better and treatment becomes more effective as more money is brought into research.

February 8, 2010   Posted in: Märia's Moments