Autistic Boy’s Social Club

Sounds like the title of a book. Or a sketch on Saturday Night Live. 

But in fact it is something Conor goes to each week. And no, they don’t call it that. It’s just what I call it. I’m not putting it down in any way, and think it is a great idea, and helpful for the boys. Maybe not my boy, but other boys. I can’t help but chuckle silently as some of the kids practice be as anti-social as possible (Conor), while others blurt out things at random. While I smile at the way each boy interacts in the group, the real lesson here is that no child with Autism is the same. Each display their sociability and personalities in different ways. Just like typically developing kiddos. 

One of the tenets of autism is difficulty in social interactions and relationships, which makes this a very good idea for a class. But still, it’s kind of funny. At least to me. Maybe that’s because my son is the least social person there and has very limited speech which hurts his ability to create relationships with the other boys. 

I mean come on, if you can’t laugh at the small things, you end up crying. 

The Unbearable Darkness of Being.

Driving in the dark. No headlights.  That’s one way I look at Conor when he is so frustrated that he can’t say what he’s thinking. Walking around in a foreign country and not knowing the language or landscape. Another way I look at his inability to communicate with people. With me.

Not a day goes by that I don’t wish I could have a conversation with him. I know there’s a lot going on in his mind, he just can’t get it out, and we haven’t found the key to unlock it. Watching him struggle to say something, especially since he understands so much that is said to him, is terribly difficult. What I wouldn’t give for that key…

Conor having a great day

Happy to be in the sunshine after many rainy days.

Rockstar in training

Conor uncharacteristicly wearing sunglasses. He is working on his first album cover photo. We all agree that he will probably make a better DJ than band member, but you never know! At least his photos will be ready for his debut whatever it may be..

Funny thing is the sunglasses are mine and they are prescription..

Into every life a little rain must fall, but this is ridiculous..

Everyone with a special needs child spends a lot of time on the phone arguing with insurance companies. No one is exempt from this annoying fact of life. So why am I telling a story about my insurance company (BCBS TX–and I hope you read this post)? Because it has passed annoying and into the ridiculous.

Yesterday I get a form denying a claim for my son Conor. Ok, been there, done that. The kicker is that the supervising medical director who denied my autistic son’s treatment was an OB/GYN. I feel that when my son was delivered and entered this world, his relationship with OB/GYN’s would be over. Period.

So I call BCBS, and as soon as I get their first line of defense on the phone, I tell her that the conversation we are about to have is only going to make me mad, so why doesn’t she just forward me on to her supervisor. “Well, I would like to try to help first”, she replied. Ok. So I launch into my unbottled anger that an OB/GYN is making decisions on my SON’s autism treatment. I don’t know what type of training this OB/GYN has in the way of autism, but I’m damn sure it is not much to nil. I further explained that I think it is utterly unacceptable to have an OB/GYN make ANY type of decision for my SON at all. Daughter maybe if I had one and not for autism, but not my son. And, this doctor should have absolutely no authorization to determine what my son needs in the way of therapy for autism. (caveat: unless he or she knows something the rest of the world doesn’t and has a cure. I would need fact based evidence on that though).

I got more and more worked up as I explained all this to the now slightly frightened/annoyed person on the other end. I did mention that I warned her that I would only get more worked up and that she should have put me through to the supervisor from the start.

Then I had the same conversation with the next line of defense in BCBS’s arsenal of people who try to make sure you get as few benefits as possible. By now I was loaded for bear and asked if he could explain how this scenario made any sense. I asked very nicely (I thought) what arse made an OB/GYN the medical director in charge of making decisions on autism treatment?? He was unable to provide a suitable reply and told me I was welcome to appeal the decision by mail. The brush off. A technique they use that only makes me more mad.

So far my plan is to call them everyday and have the same discussion and hopefully annoy someone to death. Maybe more than someone. I believe nothing will come out of that but it should be a cathartic experience and a way to make me feel better. I’m pretty sure it’s going to take a lot of calls to get to that point though.