About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Friday, September 23, 2011

What happens in Fight Club...

***Spoiler Alert: mild Fight Club spoilers below***

I have Fight Club on the mind. The movie. But for a non-obvious reason. I feel like Edward Norton in the beginning of the movie, when his character goes to support group meetings, for various medical conditions he doesn't have, including testicular cancer and gynecomastia. There's a great scene in the movie featuring a sweaty Meatloaf with man boobs seeking emotional support. That's the way I feel sometimes. Not like Meatloaf, but like Edward Norton bearing witness.

Over the last few years, I too have sampled parent support groups. Anyone else in the blogosphere do this? Even when you were in the I'm-not-sure-whats-up stage? I'm just sitting there thinking, am I Edward Norton in Fight Club, or am I like these other parents, just in denial? The answer is likely somewhere in between.

For starters, I've met with a few mothers of children who are severely autistic. These mothers are of such high character, I don't feel worthy of being mentioned with them in the same sentence. The challenges, from darting to self-injurious behaviors to almost no verbal communication. I feel like my life is richer just by having met these wonderful parents - heroes really - but I could not relate to their challenges.

Next, I went to a small informal talk for parents led by a social worker. It was broadly focused on dyspraxia, nonverbal learning disability (NVLD), aspergers, dyspraxia and central auditory processing disorder. The problem with this one is that it was just bullshit. Tremendously disappointing. It started with a youtube clip, which she couldn't get to work with her overhead. But rather than moving on, she held us captive for 15 minutes while she tried to get youtube to work. She couldn't wing it. Not confidence inspiring. I got up in the middle of the meeting and left, after she told her captive audience that children with asperger's "are atonal and don't process emotions." Check please!

Most recently, I went to an asperger's parents support group. Best fit yet. I really connected to the parents and their anecdotes and view points resonated with me. At one point, the person running the meeting quoted a story written by a child with asperger's (who is now an adult and an accomplished journalist):
Well, we went to Boston, Massachusetts through the town of Warrenville, Connecticut on Route 44A. It was very pretty and there was a church that reminded me of pictures of Russia from our book that is published by Time-Life. We arrived in Boston at 9:17. At 11 we went on a big tour of Boston on Gray Line 43, made by the Superior Bus Company like School Bus Six, which goes down Hunting Lodge Road where Maria lives and then on to Separatist Road and then to South Eagleville before it comes to our school. We saw lots of good things like the Boston Massacre site. The tour ended at 1:05. Before I knew it we were going home. We went through Warrenville again but it was too dark to see much. A few days later it was Easter. We got a cuckoo clock.
Wow. This is exactly how Brad talks. It's all about the time and idiosyncratic details.

But then...

She asks the entire group "who here has a child with anxiety issues." She nods knowingly when everyone raises their hand. "Yes," she says, "children with asperger's have anxiety." Well everyone's hand was raised but mine. Brad has no anxiety. None. And bam! I feel like Edward Norton. You don't really belong here.

So you see, the more things change, the more they stay the same.

6 comments:

Kris said...

I know what you mean. I tried a special needs playgroup way back when Alex was in preschool but felt like a fraud b/c the other kids were all much more disabled than him. I felt very uncomfortable there. The mothers lived and breathed special needs.

Alex still, at 8, has no difinitive diagnosis. He has quirks and oddities. He has some friends but is a definite introvert. His OT pointed out to me that does not make him autistic. She is one who does not think he is on the spectrum. Other "experts" think he "may be". He does not seem to meet criteria for Asperger's but has certain features of it. He does not meet criteria for ADHD but meets certain criteria for it. He definitely has sensory processing disorder and stims or sensory seeks. One developmental pediatrician with all her fancy degrees told me has has "Alex" - his own special "blend" of symptoms which doesn't meet anything in the DSM. I doubt there is a support group for "Alex".

Laura said...

I love this comment! Yes, I feel like Brad has Brad.

father of four said...

Hi Laura (and Kris). I really enjoyed fight club too - a great movie. So different to our lives, but somehow familiar. I don't feel like we need to belong somewhere so much anymore. We are doing our own thing. I think Kris has summed it up. Our boy is who he is and that's OK. Thanks for posting. This might inspire me to do the same again. Cheers father of four.

kbaczewski said...

I'm happy I found this blog. My son is 3 1/2 and we are in the process of having him evaluated for sensory issues. A school social worker observed him at school and she told me he has some characteristics of autism spectrum but is 'on the fence' because he's so high functioning. He really struggles with any group participation, makes limited eye contact, lacks pragmatic skills. He talks to himself a lot too....kind of narrates cartoon episodes. To us he's had quircks but I never once thought he had autism. Our journey is just beginning....
Did your kids exhibit 'signs' prior to preschool?
Thanks

Megan said...

I am also so happy to find this blog. I'm struggling with the same issues. My son's been diagnosed with high-functioning autism and sensory processing "issues" but he's deaf -though with the use of bi-lateral cochlear implants, he hears amazingly well- he is unique in his diagnosis and personality. The more I learn, the more I feel that he doesn't really fit these diagnoses. I know there's more I can do to help him if I could only figure out what it is!

BTW: I love the recorded interactions between your two boys. I also have a "normal functioning" older son and the similarities are striking!

Floortime Lite Mama said...

I really know what you mean