I had to go to the school this morning for an appointment with the social worker. I guess this is the last of the interviews and such before the meeting on May 17th when the school presents the findings of the review board, and sets up an IEP.
The very first thing the social worker asked me was, "Are you familiar with the terms 'Autism' or 'Aspergers'?"
She was not giving me a diagnosis. I think this was sort of a warning for what to expect. She said, "Nathan does exhibit many characteristics of Aspergers. " She said that she does not present a diagnosis, but rather it is something that we all decide together, and that dh and I are a big part of the diagnosis - whatever it is.
I told her that what I was hoping for was to find support groups, people who were familiar with the kinds of issues my son faces, and who can help me to find ways to help him. I want suggestions on what doctors to take him to, what daycares or babysitters work well with autistic kids, how best to deal with his eccentricities, etc. Are there music teachers, art teachers, Cub Scout leaders, or team coaches, who are good with autistic kids? What about schools? Are there medical treatments that can improve his symptoms, or physical therapy type treatments like the sensory therapies I've heard you guys talk about?
She said there is a group within the board of education here that specializes in autism (The Autism Team), and she is going to refer them to me, and see if they have any suggestions on the things I've mentioned. She seemed surprised that I asked about babysitters, saying, "Oh my, yes, you need something like that!" She couldn't believe that we never leave him with a babysitter, never go out without him. She said she never considered how difficult it would be to leave a kid like Nathan with a sitter.
She seemed to really care about Nathan and how all this affected him. "Can you imagine what it must be like to live in his world...?" she asked me. I try. God knows I try. I can't always understand where he is coming from, but I can usually sense how important something is to him, even though it makes little sense to me WHY it should be so important. My heart aches for him, when I see how people treat him, and when I see how hard some very simple things can be for him.
We also talked about how he is often bullied, and how this weekend the neighbor kids tried to use a collapsible basketball hoop as a catapult, and Nathan as the ammunition. We thought they broke Nathan's tailbone. I think now that maybe it was just bruised, because he is healing rapidly, but sometimes he shows little reaction to something I know must be very painful. He has had ear infections that burst his eardrums, without ever complaining about feeling ear pain.
I've been trying to prepare dh for the possibility that Nathan has Autism or Asperger's. He was angry and resistant at first, but now he seems to be a bit more accepting. We'll see.
I'm heartbroken. And relieved. And scared. I know this can all be a positive thing, but it's hard not to feel scared when you aren't really moving forward, but just waiting for an evaluation summary. I was so excited when the social worker said she would talk to the Autism Team to see what resources she could find for us. OMG, that was the first time I've seen light at the end of the tunnel. (I didn't even know there was an Autism Team!) I haven't been able to find support groups in the area, but the social worker thinks she can help me to connect with advocates and such. I've tried to figure out what doctor to take Nathan to. His ped is useless for this stuff. He's fine for an ear infection or a strep throat, but this is beyond his scope I guess. When I try to ask him questions about Nathan's meds, or voice my concerns about his side effects, the doc just tells me "don't worry about it." Excuse me, but my son is having painful migraines, and you tell me not to worry?? Do you have children of your own?? sigh.
Anyway, I'm really tired. I've been on the verge of tears all day, and on the verge of cheering. Yeah, confusing, I know. Silly me, I still want people to tell me that all of this is just a lack of maturity, and Nathan will grow out of his "issues." But I also want to cheer because maybe there will be people out here who know what we all go through with Nathan, and may have ideas for me, or doctors to recommend, or teachers and caregivers to recommend. Geez, to even imagine that there could be help for us seems almost too good to be true.
On another positive note, I did get Nathan into the Park District's day camp for the summer. It's expensive, but it's a good program. He did this a couple years ago, and they were fabulous with him. They assigned a college student (special ed) to shadow him all day, and really helped him to cope with the new environment. That was for free, too. It was the very fist time I had a teacher or caregiver look at my son like a person and not like some kind of demon child. People usually treat Nathan like he just needs a good swift kick in the ass, instead of trying to see what a great kid he is. They also treat me like some kind of awful mother, who can't control my son. Anyway, I'm just thrilled we got him in the daycamp. This place could be a real good experience for him, at a time when he really needs it.
I'm so worn out.
No comments:
Post a Comment