Wednesday, May 28, 2008

I Hope You Don't Mind If I Have a Private Moment...

This has been an interesting week. To say the least. I mentioned, a couple of posts ago, that I have been potty training my son and that, at 4 1/2, he is a bit late in his training. I love my son, more than words can say, but I have not been blind to the fact that he hasn't been on the same track developmentally as most kids his age. I have brought it up, from time-to-time, with his pediatrician and was usually told that I was "over-comparing" him to other kids. I knew better than to accept that from the pediatrician, but I let it lie for awhile. I didn't want to deal with the elephant in the room that most parents don't want to deal with. Autism. This word carries so much weight these days. We hear about it a lot. We hear that the numbers are on the rise and we hear about celebrities like Jenny McCarthy that they too have kids with Autism. God bless Jenny McCarthy. At first I denied that my son could have Autism because he seemed to function so much better than the stereotypical Autistic child. I remember watching "Rainman" and thinking the sort of idiot-savant that Dustin Hoffman played was what Autism was all about. That can't be my son I thought, my son hugs me, he tells me he loves me. He comes running to me when I come home from the store with a loud "Mom!" and a big hug. How could this child have Autism? And then a funny thing happened. I started reading about it and I discovered a neurological disorder on the Autism spectrum called Asperger's Syndrome. And an even funnier thing happened. I realized that not only does my son have virtually all the criteria that would garner him a diagnosis as having Asperger's, I do as well. I've always felt like a square-peg in a round-hole world, but I always found things to blame it on. I was adopted. I went to 11 different schools from kindergarten through 12 grade. Of course I was socially awkward. But the thing is, even in a safe environment, away from social situations that can leave me in a horrible state of anxiety, I'm still not what you might think of as normal. I look normal. I can pass for normal. I can hold a job and go to parent-teacher conferences relatively well. But if you and I were having a face to face conversation, I would have to force myself to look into your eyes. I do this because it's what I've come to believe is expected of me in social situations but I don't "get" why I should do it. My son is the same way. When I go to a party with my husband I really get stressed out. I've never been able to read people very well. I tend to run on conversationally and have a one track mind that is staggering in it's focus. I cannot go-with-the-flow conversationally because my mind will stay on whatever track I started on and will not shift gears unless I make a conscious effort to do so. I tend to be blunt but think of myself as "honest." I don't mean to hurt other people's feelings but since I am not naturally tactful I do sometimes. I don't like to be touched (which drives my husband crazy) and can't stand loud noises of any kind. If I'm in a room full of people I will go into sensory overload and have to leave to spend time by myself. I usually stay up late every night just to be alone. I could go on and on but I think I would bore you. The point of all this is that despite my personal diagnosis of Asperger's, I've managed to do okay. I have been with my husband for 13 years despite my social retardation. Most people would never, ever, dream that I suffer from a form of Autism. Thank goodness. In a weird way I'm glad I have Asperger's. I would prefer that my son didn't have it, but since he does I think I am uniquely qualified to help him navigate through a world he won't understand. I can't give him enlightenment, but I can give him a few coping mechanisms. I would prefer that I didn't have this genetic mutation to pass on to my child (Asperger's generally runs in families and often the adult sufferer will be diagnosed at the same time as the child) but I can't help what has already happened. The one thing that gives me hope is now I know why I am the way I am. I now know why I have a hard time relating to people and prefer the companionship I find among the blogging community. I don't need to read facial expressions here. All I have to do is read the words on a page and I can do that. I can also stand as an example to my son. I can say to him, I graduated college. I got married and had kids. I know how to love even if I don't know how to express it. I know what it is to be you, and you're going to be just fine..... For more information on Asperger's Syndrome, THIS is an excellent place to start.

15 comments:

Charles Gramlich said...

I appreciate the courage it took to discuss this. I know a fair number of people who exhibit various characteristics of Aspergers. In fact, I have a lot of the characteristics myself. Many folks with the disorder are actually spectacularly successful at certain functions in their world, but interpersonal relationships are always tough. I'm not sure that you or your son would necessarily be diagnosed with Asperger's, but one can have or experience some of the characteristics of Asperger's without all of them. I'm glad you can be there for your son.

weenie said...

Wow, thanks for sharing this - I'd heard of Aspergers before but have learnt a lot more from you today.

Shade53 said...

I wish both you and your boy the best - he's very lucky to have you! To have someone who really does 'get' it.

~S

SQT said...

Charles

I've been surprised by how many people have signs of Aspergers. My son's diagnosis is already pretty definitive-- we're already in the process of seeing doctors etc. Mine is a little harder since not a lot of doctors are dealing with adults with Aspergers-- but my son's doctors tend to agree that I have it.

Weenie

Thanks!

Shade53T
Thanks! I hope I can help him anyway.

furiousBall said...

i absolutely salute you and your courage, there are a number of mommy bloggers that read my blog that have children with asperger's. you both are lucky amiga.

Jean-Luc Picard said...

You wrote that so well. It's important to share it, as I know it can't be easy.

Nepharia said...

I hope you don't let this diagnosis get you down. I have a dear friend that I met at work who has Asberger's and in a way, it's *why* I like him so much.

He is painfully honest sometime, but is a refreshing contrast to the "liar" in our group (which no one really likes to interact with).

He is a programmer, so he's not stupid. While socially "off" we do not like him any less simply because...well...he fits in well with our already-strange group of programmers/geeks.

Good luck and know that there are many out there that don't care that you and your son have Asperger's...

"Those that matter don't mind and those that mind don't matter."

SQT said...

Fb

Thanks. This is all new to me, so hopefully we'll find a way to work it all out.

Jean-luc

Thanks. I do kind of hope, in a small way, to share our story to make it a little less scary for parents who are getting this diagnosis in their children.

Nepharia

You know, a lot of people with Asperger's end up in computer, or mathmatical oriented jobs. I susepect a lot of socially awkward computer geeks may have a touch of Asperger's. I guess were prone to hyper-focus on one interest. People with Asperger's are typically smart, just not socially astute.

Fab said...

Thank you for sharing that. I know this is a personal issue. I am glad that some questions you had about yourself and your son have been answered now. And the fact that you went to college, got love and kids, is a great thing to share with your son and shows him later on that he can do whatever he sets his mind to. Good luck with the potty training. Do you still reward with Transformer toys?

SQT said...

Fab

Oh yeah. Transformer toys work wonders. Still.

I'm also finding that knowing about Asperger's is answering a lot of questions for me. I can look back on my life and pinpoint a lot, and I mean a lot of situations where I just didn't act appropriately, and now I know why. It helps to know why I do what I do.

Stewart Sternberg said...

I teach many kids who have different challenges. I've always found the most important thing is not to teach down to them, but to teach differently to them, to find the approach that best fits the student and then forge ahead. I've never had a kid here who was diagnosed with autism, but the key word to that is diagnosed. I am sure some of my kids have mild levels of that condition, it's reflected in their processing and in their ability to interact in certain levels of social setting.

Good luck. My best advice to parents who are working with students is to become part of a network. I think a safety net is the best thing anyone with any challenge can seek out.

SQT said...

Stu

That's what I'm trying to do. My son is already in the system but I'm sure I'm going to have to push to get his as much help as I can get him. I'm lucky that we're both on the mildest end of the spectrum. Coping isn't impossible.

Crunchy Carpets said...

We are seeing a child therapist for Adam as he is very like Aspergers but bordering on ADHD...

He is the child of two geeky parents..he is JUST like his dad..but more outgoing..but not great at sympathy or reading how others feel...which is weird because with animals and little kids he is very empathic....and worries..worries a lot..hence seeing the therapist..we dont' want the world to stop being fun.

My heart goes out to you and your boy..but I think you are doing great.

The Curmudgeon said...

Wow.

I have a friend with albinism -- legally blind from birth. I met him in college -- by that time he'd voluntarily surrendered his driver's license... but he got one.

When he was born his parents were told normal school would be a waste of time -- he'd never be able to handle it -- and he should be put into vocational training in hopes he might someday be able to support himself.

Well... I mentioned college. He also has a master's degree and holds a high ranking public service job. I won't mention more details, lest I give him (and myself) away... but he's giving back so that other kids with his condition will never have to be cut out of the mainstream.

My point of this long comment: Don't let a diagnosis become a wall that isolates your son.

Good luck to you both.

Carl V. said...

Very gutsy post, thank you so much for your honest sharing. I work in an agency that provides help to children with these issues and I certainly feel for them and for the parents trying to provide them with the very best of everything in order to make life as productive and satisfying as it is for any other child. I do agree that you are in a unique position to be just the parent your child needs. You are armed with a great foundation and great knowledge base and he will no doubt benefit in amazing ways from your experience as well as your love.