Saturday, July 14, 2007

Autism blogging, part one

I have so much on my mind right now that the possibility for numerous rambling, self-referential posts looms large. So let me go by topics. I have noticed that I am more open in comments on other people's blogs than on my own about some of the realities of my life. Such as my son being on the mild end of the autism spectrum.

I don't talk or think much about this in my day to day life any more for a few reasons: I no longer drive for hours each week carting him to special therapies and interventions; I worry about the labels we give our children and how it limits us all to focus too much on the deficits; I am used to our routines and have (mostly) adjusted my expectations; and he is very high-functioning. Also, because explaining often doesn't seem worth the time it takes.

The short version is that he was diagnosed with Sensory Integration Dysfunction at age 4 after a series of weird tests which were required if he was to be allowed to stay in his hoity-toity pre-school (where we sent him hoping its calming atmosphere would allow him to blossom, whereas the very stimulating pre-school where he had been made him nuts). Turns out, we did everything they asked and they still kicked him out ("We're just not set up for a child with special needs like his") the day before we were to leave on a long vacation and just before public schools were getting ready to start. We hurriedly enrolled him in kindergarten, which turned out to be a wonderful thing.

SID can mean many things. It's kind of an umbrella diagnosis for kids demonstrating autism-like behaviors in some areas, but not in others. My guy is not Aspberger's syndrome, which is a little farther along the spectrum, but you may have heard of Aspberger's, which seems terribly common these days. (Many have noted the correspondence in the rise of autism spectrum disorders with the rise of a) vaccines and b) C-sections. I 'll not debate that here).

While on vacation I spent two nights with a friend who adopted three kids (siblings), all of whom turned out to have fetal alcohol syndrome, to greater or lesser degrees. She and I bonded back in those early days after the diagnosis when I was adjusting to the idea of being a mom of a "special needs" child. I remember a day when I took my son to a local indoor pool and he went into full-blown hysteria. There was absolutely no child psychology technique that could have calmed him down. I just had to do everything in my power to get him re-dressed and out of there. Later he begged me never to take him to the "talking pool" again. After my initial confusion, I realized that the loud echoing nature of the indoor pool had scared the bejeebers out of him. One of his areas of sensory dysfunction is around sound. He has extremely good hearing, with little to no capacity to distinguish between sounds or filter them. So he hears everything at once. This makes focusing on what a teacher is saying in a classroom full of squirmy boys and girls very difficult and showing up at a pool with loud splashing and squealing echoing around the room downright unbearable. But at the time of the pool incident it was this friend to whom I could confess, "Some days, I just want a normal child."

As is typical of autism spectrum children, mine is gifted in certain areas and absolutely obsessive about those things which interest him. It is beyond comprehension for him that other people are not endlessly fascinated with the machinations of elevators, for example. So we compromise. He got to choose the places we visited on our first two days in DC and they were the buildings with his favorite elevators. But for my side, we also got to enjoy other parts of the buildings, once there. So we rode elevators all over town: the Library of Congress, the Botanical Gardens, the Museum of Natural History, the parking garage in downtown Silver Spring and, his all time favorite elevator, the Old Post Office on Pennsylvania Avenue (in the photo). Other than the parking garage, all of them have pretty nice exhibits attached, as well. So it was a good trip for both of us.

Like with some of my own stuff (which can make my life hell, but also keeps it interesting), there are days when I still think, "I just want a normal child," but many more when I think how much of life has been opened up to me that I never would have noticed before if it weren't for this unique and wonderful and maddeningly obsessive little person with whom I get to share my life.


jledmiston said...

As you know, we have similar children. My SID kid just got elected Student Body President -- which stunned the socks off me (but I got the heads up about his election victory before seeing him, so I could look like I knew he would win the whole time.)

Having said this, I worry about him constantly. While his sibs have lots of friends and go off to the movies or the pool in packs, he's content to sit at his computer and write stories.

The operative word here is content. I would also like to be content for him.

I worry about how he'll deal with college, but he's planning to go -- not too far away I hope. He's a quirky high school kid. Most teachers enjoy him but some do not get him at all and conflict ensues. He's very bright but has few social skills/street smarts.

I mostly pray his disorder doesn't evolve into something worse. Bipolar Disorder runs in the family.

Your sweet one has lots going for him too -- especially parents who love him, a cool place to live surrounded by support.

All will be well. This is my mantra for both of us.

lj said...

Student body president??? Wow. I can't even begin to imagine ... yeah, the lack of social skills really worries me. Probably more than it needs to, but there you go. As you know, bipolar also runs in my family. More specifically, right through my veins. That's the other thing I haven't blogged about here yet. Maybe someday. I have the social skills to cover for my mental illness, though. If he had both SID and BP, what a mess. I worry more about OCD with him, though. I keep telling myself that he'll take his loner/obsessive brilliance into some lab and be a great scientist/inventor some day.

lj said...

Jan, I also worry about my kid not having any siblings. That isn't how we planned out lives, but that's how they turned out. (The "having/adopting children" issues could be a whole other blogging series).

With the hearing issues come others for us: no loud music in the house or car (and I LOVE loud music), him hating church (which, when you think about it, can really be sensory overload and why he did better as a Quaker child -- another blogging possibility) and concerts of any kind (selfishly, I miss being able to share concerts with him and for him, I am sad that he won't be able to enjoy that experience).

Huh, guess I still have a lot to say about this ...

pj said...

LJ, I have a thirteen-year-old nephew with PDD. He's come a remarkably long way, but my brother and sister-in-law certainly had a few tough years in there! They used up so much energy fighting with the powers that be for every service, every extra bit of therapy. The good news is that my nephew is extremely articulate and intelligent, and amazingly gifted in music and art. And he's about to have a bar mitzvah! This is a child who could barely go out in public at age three without freaking, let alone to the temple.

I've basically come to believe that everyone -- adult and child -- is somewhere on the spectrum; it's just a matter of degree. My husband works at IBM Research, and he concurs. :)

God bless you LJ. I think your son chose himself a great mom. Pour yourself a drink and we'll do a virtual toast. I second Jledmiston: all will be well.


Diane said...

lj -- thinking lots about your post. what's normal? My niece is also an only child, always wanted siblings, but was not to be. Watching her with our dog -- felt good, like they were "cousins". Know if sounds weird.

my other niece and nephew have issues because their mother abandoned them. my brother is a single parent. It's hard. They're good, but I pray for them all the time.

Woman in my church adopted two girls from china. younger one has "attachment disorder." This has been a challenge.

not to try to downplay your worries. you are a good mom, so of course you're worried. But he sounds like such a good kid.


Ed said...

Not much to add except "Bless your hearts" (in the best possible sense!). I do appreciate that you are able to say "it's hard" and "it's wonderful." You and the kid sound like a good team.

lj said...

PJ, I agree that we're all on the spectrum. In some ways it is helpful to have the various diagnoses today that we do, but I, like Jan, prefer "quirky" as a good description of my son. I think lots of "odd" or "eccentric" adults we know would probably be diagnosed with one of these alphabet soups if they were kids today. I am much more aware now of how I process sensory input and how I cope when the processing is not going easily for me. We all learn our coping mechanisms. As Diane says, "what's normal?"

Ed, I certainly took your "bless your hearts" lovingly, because you said it to my face, as opposed to taking PJ aside and saying, "She seems a little too focused on that poor child ... bless her heart." Clear distinction between the two.

Thanks, all.

eileen said...

It's true, LJ. Diagnosis is only as good as it is helpful. In some (many) cases, a diagnostic label can become more of a hindrance than a help.

Bless you and your unique son. we are all unique - some of us are just better at showing it! (From an ADD/Bi-Polar mom)

Pickel said...

the whole other blogging series is what I do. SID/Autism/Adoption. And we are adopting again! Yes, call us crazy but we want our son to have a sibling.

Check out my sites and my freelance...