Wednesday, June 27, 2012

Hey Jealousy

There are hundreds of "top ten" things you didn't know about autism, or autism parents, lists floating around out there. I'll spare y'all the torture of reading another. Something that constantly appears on them, however, is an autism parent admitting they're jealous.

Jealousy and braggadocio, sadly, are a big part of parenting in general. Every single one of us has to deal with other parents constantly reminding us what little Johnnie or Sally is doing at a sixth grade level this week. Americans love hyperbole. We love victimization. We champion triumph and, as parents, we love projection.

I went to a birthday party recently and had this conversation with a beloved and trusted friend.

Friend: "We're having an issue with little Sally. She's getting pretty good at asking for things now instead of demanding."
Me: "That's great. What's the issue?"
Friend: "She's having trouble understanding that she doesn't always get those things. Even if she says please."
Me: "That's a big concept."
Friend: "Right? We spend so much time teaching them to ask instead of demand, then we spend so much time teaching them to be polite. She's done everything she's been taught, right? She hasn't figured out yet that even if you follow all the rules, sometimes you don't get what you want."
Me: "Sucks. I guess they just figure it out."
Friend: "I guess. We're working on it. Man, parenting is tough."
Me: "Yeah."

Long Pause

Me: "We're working on not biting our classmates."

I could be angry, or offended, or judgmental. Here's a friend with a child the same age as mine, BRAGGING about what complex, advanced, or enigmatic problems his child has that my child is nowhere near.

But guess what? I'm not. I'm happy. I'm glad little Sally is doing so well. I love her, too. These are legitimate parenting concerns and questions my friend is asking me. I want little Sally and her father to be the best they can be.

But... I am jealous.

I think we tend to alienate ourselves as special needs parents because we feel we bring nothing to the bragging circle. We certainly alienate ourselves from community outings (grocery stores, restaurants, zoos, birthday parties, etc.) because we fear how our children will react to the situation, and, how we will react to the situation. I would love to be at a point in my evolution where I could honestly not give a fuck what other people think. I remind myself that, often. I can logically deduce that it doesn't matter what anyone thinks. But, the truth is we DO care. We are social creatures.

Sometimes to his detriment, but my son has mastered this. Another thing to be jealous of?

A lot of children with high functioning autism have developed what we call "splinter skills". Some are great with math. Some have incredible memories. Some are truly gifted in the arts.

My son has two. The first is useless. He can walk in heels really well. Yep, years of tippy-toe walking have made him fearless when wearing mommy's heels. He can sashay his pretty little self all the way to the mall without as much as a stumble if he wanted to. I was really hoping he could count cards, or pick horses, but I got catwalk skills instead.

Secondly, my son has an incredible sense of humor. He will do anything for a laugh. He writes jokes. He makes puns. He truly loves to entertain and sense of humor is the number one quality to attract women! I read that in a recent poll. I swear I did.

Here's the point. We are all jealous.

We are also all braggarts.

Instead of wallowing in the misery about what our kids can't do, start bragging about what they can.

I just did.

Go ahead. Take a moment and tell someone what your kid does better than theirs. It's normal. It's healthy. It's therapeutic. It might even, god forbid, make you smile while you're writing it.

Tuesday, June 19, 2012

Father of Mine

My son went to a blended pre-school through the school district. One morning, after drop-off, one of the other mom's came up to me and wanted to ask a question.

Mom: Can I ask you a question?
Me: Sure.
Mom: I read on-line about dolphin therapy. I think you should get your son into dolphin therapy. I'm looking into it for my son.
Me: Sounds expensive. I don't have a dolphin.
Mom: But they say that dolphins are the smartest mammals.
Me: Besides humans.
Mom: Oh, yeah.
Me: I'll look into it for you.

That story is not told to make fun of dolphin therapy nor this particular mother's suggestion.

Father's... you have an incredibly powerful role in raising children with special needs. There are so few of us around. You are almost automatically seen as an expert, or as having an opinion.

When people ask me who they should bring to an IEP to be more intimidating (attorney, advocate, private therapist, etc.) the answer is always the same. Bring the father.

I don't know if this is a true statistic (some of you teachers and administrators out there can tell me), but I bet there is an attorney or advocate present at an IEP more often than a father.

So, Dads,  get involved. Chances are, both literally and figuratively, you will always be "the biggest dick in the room".

Seems unfair. Seems like I'm taking advantage of gender stereotypes. Seems like I'm insulting families where the father is not around. I'm not.

I'm writing to the dads that read this... the dads that are around AND the dads that aren't. GET INVOLVED. Your child needs you.

To the families that this isn't possible (i.e death/deployment/work in another state/etc.) go to a grandfather or uncle or friend.

To the pieces of shit that left because they had a child with special needs, go to Hell. You're not a man anyway.

Saturday, June 16, 2012

Hello Again

This week, thanks to a shout-out from another blogger, Autism Sucks gained many new members to our community. So, here is a brief list of FAQ's about myself to let all you new guys know what you're in for.

1) Why Autism Sucks?

Because it does. Kids with autism don't, but it does.

2) Who the heck are you anyway?

I'm a 37 year-old stay at home dad. My Son (5) has high functioning autism. I have a baby girl as well (2). I'm also a writer, so sometimes (when I get paid) I'm a 37 year-old work at home dad. My wife is an attorney, and pretty damn good at it. Unfortunately, she works really long hours. We decided that someone needed to be home with our son, so I left my job (investment banking) at the time to stay at home with the kids. We live in Los Angeles.

3) Hey, you didn't use any names, is this an anonymous blog?

Yes and no. I feel it's inapropriate to use names of real people. That being said, I have used my name, my son's name, my wife's name in previous posts. If you really want to know who we are... it wouldn't take that long to find out.

4) Inapropriate to use names of real people? You just bashed Jenny McCarthy, and she's real.

Yes. I'm also a hypocrite and often full of crap.

5) So what makes you an expert and why should I read you?

Good question. I write for myself and my friends and family. Most of my posts are reflective, or angry about some situation. When I post factual info, I try to always include links to said facts. If you're ever bored, click on one of the links. Since most people will believe that a fact is indeed factual because there is link, nobody ever clicks on the links. I might use that to my advantage someday...

If you are interested/entertained/touched/or angered by the type of things I write about, you should read.

6) All of your posts are song titles, are they your favorite songs?

Some are. Some are just the right name for the post. I thought it was a cute gimmick.

7) Whose eyes are in that profile pic?

That is my son.

8) How do you really feel about staying at home?

It's the right thing to do for my family. I love it at times, and I hate it at times. My wife is amazing. She's pretty darn good at being a pinch-hitter with the kids when she gets home from work and on the (few) weekends that she has off... and she's smoking hot, too. This arrangement works for my family right now. I'd really like to get to know other dads of children with autism. I'd love to know how they do it.

9) Wow, you're really not that interesting, why should I keep reading?

You made it this far, didn't you? I thank you for it.

Feel free to ask me any questions, you can leave them here on the blog, or "like" the Autism Sucks facebook page, or email me at

I look forward to hearing from you... and to those of you that were my friends or family already... I hope this wasn't a waste of your time.

Friday, June 8, 2012

Tomorrow is a long time

A touching moment at the park yesterday opened my eyes to what will probably be the hardest day of my life.

For behavior therapy sessions we are often encouraged to include/integrate a peer model and take public outings. Yesterday we went to the neighborhood park (as we often do) armed with myself, our behavior therapist (who is amazing), my son, and his friend. As an aside, I purposefully chose the word friend instead of "typical peer model" because of the impact that word has in print. There it is... Friend. This girl is amazing. A role-model, blessing, warrior-poet, and angel all rolled into one tidy little 6 year old package. I could not say enough how much she means to my family and, more importantly, to my son. I promise I will write her Swan Song in another blog.

So, we're at the park and Jack, my son, has found a new friend. A tall, gawky, red-head, boy who might be 13 or so. Jack and his new friend have developed a chasing, tag-like game. They are running all over the park, squealing with the delight that only children have. At a quiet moment, I asked my son if he was having fun with his new friend. "Yes". "Why do you like him so much?" "Daddy, he is like me. He is different like me".

Jack's new friend was also autistic. His squeals suggested he was non-verbal and closer to the severe end of the spectrum.

My heart instantly sank. Not because I did or didn't want Jack to hang out with other children with disabilities, not because I feared for his safety, or even because I might be looking at him in 8 years, but because he had said he was "different, like me".

"Why do you say that?" I managed to ask around the lump in my throat.

"His name is Jack, too"

I verified with his mother that it indeed was and the "Autism Speaks" sticker on their car confirmed my diagnosis.

I've been in this world for a little bit now... I consider myself a veteran of raising a child with special needs. Some of my peers do. Some of my readers do. Some of my family does.

I openly admit the hardest thing I will ever have to do is tell my son he has autism. I will have to tell him that he is different and mommy, daddy, and his sister are not. I will have to accept responsibility for all the choices we have made for him, good and bad.

I am not ready for that.

It didn't happen yesterday, it didn't happen today, but it will happen tomorrow.

I just keep praying that Tomorrow is a long time.

Monday, June 4, 2012

Love's Recovery

A reader on the Autism Sucks Facebook page (which y'all should "like" if you haven't yet) recently asked me this:

"I read the Times piece with Jenny and was struck by her use of the word 'recovery'. Do you think about your son being on a road to recovery?"

It's a lengthy answer, so I thought I would blog about it.

As I've mentioned before, the Future is very uncertain with children on the spectrum. There is no template. "You've met one kid with autism, you've met one kid with autism" is a famous quote going around (if you know the author of that, please tell me). We've also established that to the Autistic Community, Jenny McCarthy is a dipshit, so take her use of the word "recovery" for what it's worth.

There is a huge divide in the autistic community on "treatment". One camp is looking to do everything possible to "rehabilitate" these children into mainstream society. The other camp takes a more passive stance; rehabilitation implies there was some debilitation in the first place. God (or whoever) gave us these children as gifts and who the hell are we to try to make them fit in to our society or standards.

With all due respect to the latter, I cry bullshit. If there is something you can do to try to better your child's life, why wouldn't you? Could you imagine having this conversation with a parent:

"The optometrist says Little Johnny needs glasses, but I told her 'fuck off' cause God made him the way he is. He doesn't need to do things like read, drive, or watch TV just because we think it's right"

My son has difficulty with change (hell most of us do) or "transitioning" as we call it in the shop. I can honestly say that 1 1/2 years of behavior therapy has helped him with that. More importantly, it's helped me to learn how to "transition" him. Would he have outgrown his aversions without therapy? Perhaps, but that's not a control group of an experiment I'm willing to be a part of.

When we think back to our childhoods, we probably went to school or knew a child that today would be labeled as "on the spectrum". I know I did. There was a guy in the orchestra (yes, I was in the orchestra... believe it or not, I haven't always been this cool) that was clearly High Functioning Autistic (formerly Asperger's), but we didn't know it then. He was just our quirky friend. If he had received behavior therapy at a young age, would he have been any different? Probably. On the other hand, we (the other kids) would have known that and most likely treated him differently... with either quiet disdain, or mellifluous condescension.

I'm off topic.

The answer to the question is:

There is no cure for autism. Therefore, recovery is a strange word to apply. There are therapies that are proven through scientific process to aid a child in adapting. We will do everything we can to apply them. I don't think my child will ever "recover" from autism. Hopefully, one day, however, he will just be your child's quirky friend.

In many ways, he already is.

Remember, Autism Sucks.