Thursday, January 17, 2008

Well

Something happened Monday that i've been trying to do for 4 years.

When Sean first left my brother's, and went to foster care in douglas county, he was placed in agency-based foster care. (basically, the agency finds him a home, rather than the state) his case worker through the agency asked me shortly after he was placed, if i had ever had him tested for Asperger's. i told her no, as i had no idea what it was. all i knew was that sean was socially awkward, and, at that time, very troubled and depressed.

so i went to the internet. did a ton of research. went to relatively reputable sites like webmd and different college-based sites. and discovered the truth. half the symptoms they were describing fit sean to a t. ADHD, depression, ODD, OCD, the inability to figure out social cues, and body language, a disconnection with humanity in general. all of it. wow. now i knew!

the trouble, then, was convincing anyone else of this. his first psychiatrist said there was no point to a diagnosis, as there is no cure for it. all they can do is treat the symptoms, and the meds he was on did that already. we eventually switched psychiatrists (not because of this, because the first one had been situated for sean's first foster mom, way the hell and gone from me.), and while he agreed with me, that sean did have several of the symptoms, that, again, it was being controlled by meds.

until the firecracker incident last fall. i can't recall right off hand if i told y'all about that or not. sean found a firecracker on school grounds, and rather than turn it in, put it in his pocket. it just didn't occur to him. he was found with it later in the day, and gave it up when asked for it. however, according to OPS policy, this is considered a weapon. he was suspended for 5 days (the lightest they could give him, because they could directly attribute his behavior to the reason why he is in the resource room to begin with), and we had a meeting. i asked both his resource teacher, and her supervisor, and everyone else there, about their thoughts of him having Aspergers. They all agreed, and, something i did not know, have a different treatment plan (educational plan, what have you) for "autistic" kids. yes, asperger's is a high-functioning form of autism. so we agreed to have him re-evaluated for school, and since i was going to be taking sean to see his psychiatrist for a med check, i was going to talk to him again about having sean tested.

it took the school getting involved to finally get the push for testing. so we did. we finally got the results on monday, and yes, sean has aspergers. i was stoked. finally, vindication of what i'd been saying and thinking and feeling for 4 years! and, some good news, as well. while sean is socially awkward in public, he has learned to read the family's social cues. he knows how to react to me, and mark, and liam, and even steph (even though she hasn't lived with him for 2 years). the evaluating psychiatrist says this is a good sign, that now we have to teach sean to read people he doesn't know as well, or at all.

now we can get him some real help.

but i've been doing more reading. most insurance companies won't pay for the intensive therapy, and the help that he needs. luckily enough, the psychiatrist sean sees is on the short list of doctors covered by our insurance, so that isn't such a financial burden. however, the list of therapists is amazingly short (my therapist had been trying to get on it for 10 years!), and while i haven't explored it yet, i'm sure they've all got hideous waiting lists.

he's 13. they say autism is best dealt with with early intervention. they usually like to start with preschoolers. i know that sean will always be different, but i want him to be able to get along in life. i know he will probably never shop in a mall, and always avoid large crowds. if he can live with that, so can i. however, if he HAS to, i want him to be able to cope with the situation. he barely can now, and only if he's with mark or me. we won't be here forever. i'm just afraid that this will be too little too late.

7 comments:

Ina said...

I'm glad you were able to secure a proper evaluation. I'm a trifle shocked by the psychiatrists' attitudes - no point, indeed! The point is Sean and those who care about him are NOT alone. There ARE things that can be done. Not least, networking and advocacy.

PBS just aired a documentary on a man with Asperger's, see http://www.pbs.org/independentlens/todaysman/

Kit said...

I'm so glad you got it diagnosed. Even if there's "no point", the fact that you have a name to what's hurting your son means the world, I'm sure. *hug*

We all deal with our own trials. I will always have to take medication that suppresses my immune system but that doesn't stop me from being a nurse, it just limits what field I can go into. Humans have amazing coping abilities. Be strong and have faith in Sean, he can do it. And so can you.

Ann-Marie said...

oh wow. i'm glad you finally have diagnosis.
I have friends whose son was just diagnosed at age 10 and I used to work with CPS and had a client who was 16 and had only recently been diagnosed.
Good luck and all the strength to you !!!

Maryellen said...

Wow. You sure have your hands full. I sure hope now with an actual diagnosis you can get all that Sean needs. I wias I could help. Perhaps there are internaet chat room forums for more ideas and ways to get the help Sean needs. i'll keep my ears open.

mamaloo said...

Knowledge is power. Congratulations to you and Sean on the diagnosis. I imagine it would be therapeutic for Sean to know he's got a very specific condition than to just go through life thinking he was damaged.

Jan B. said...

My son has Asperger Syndrome. The diagnosis means EVERYTHING as far as being able to qualify for services offered by the school. His IEP should include everything he needs based upon this diagnosis now. Congrats on that. My son is 17 now and he does fine. Asperger Syndrome is something most people can learn to live with - as long as they know what they're dealing with. There are a ton of great websites full of stories and info.

lady1380 said...

Me again...stalking your old blog posts. No, it's not just Violet anymore, I've decided to stalk the whole staff. Anywho, if you're interested, there is an excellent (IMHO) site at http://www.crazymeds.us. It is run by several people who are diagnosed with Aspergers (in addition to other things), but there are some great resources "by the people, for the people", untinged by healthcare industry biases. I love it.