The developmental pediatrician we'd waited over a year to see saw our son last week. She's a popular doctor and has the longest waiting lists of any in the children's hospital (and it's growing). And she gave him a diagnosis of PDD-NOS/mild autism and said it's really clear. This is a very new autism clinic or I'd have been there in a heartbeat--it's covered by insurance, in contrast to the educational diagnosticians.
When our son was in preschool we took him to a place that ran thousands of dollars in testing and then told us they didn't do diagnosis for autism. We did put him through the occupational therapy, which helped in extraordinary ways. He played in McDonald's tunnels for the first time, talked more, tried new things, actually played with his Rescue Heroes rather than just taking toys apart and putting them back together. This occupational therapy was what others would prescribe for sensory issues and autism anyway. In kindergarten, first, and second grades, I requested full autism evaluations (as required by law for suspected disorders) from the school so it would be free, and the school just did a few tests in the first few years and a few more in the second and declared he was not autistic. In second grade, I asked for an outside evaluation--which the school district has to pay for--and they did more tests!--they hadn't run the full battery before. I was furious. They found he had autistic spectrum disorder but refused to write up the diagnosis so that they didn't have to give him a 504 plan. And tried to argue with us about accommodation, saying that it was not needed since he doesn't qualify for special education. That misses the point. 504 is not special education--it is accommodation for a disability, whether a peanut butter allergy or wheelchair accommodations or autism. But they said they couldn't give the diagnosis (despite their findings!) since they claimed it had to be from a physician (no, sounds like work avoidance to me).
What it came down to was this: a first grader should not be given 0s on his homework and classwork when he does it just because he repeatedly forgets to put his name on the top or can't remember to take it out of his backpack or turn it in to the right place after being told to repeatedly--papers that would otherwise be 100! He should not fail classes when he does the work or because he can't remember to put a worksheet in his backpack when it's because of a disability. He could do the work--with accommodations! This year he has a teacher who taught special education before she taught gifted and talented kids, and she has education in both. So he's really not needed accommodation because she works wonderfully with him and understands how he works and has been able to assist him in ways that make him less dependent on others and increasingly able to self-organize and make it home with work and back to class with work.
But we don't know who he'll have for teachers in the future and think the diagnosis will protect him and help him if needed.
He amused the doctors, who brought in a whole team of experts for rapid, tag-team evaluation that would otherwise take a lot of appointments, by declaring a hard plastic chair "strangely comfortable" and saying that he needs some computer time to "destress."
So he needs some additional speech therapy and occupational therapy and a (free!) group session that works on friendship/discussion skills. He's been in a conversation group at school--they did do that. He has trouble with handwriting and hand strength, but does better with cursive. I'll see if we can get the speech at school and do a lot of the OT at home after some initial appointments.
This has been a long, emotional process. Something that's been this clear to us from the time he was very small--and to his pediatrician and others--should not be so hard to get a diagnosis code for.
We're increasingly having to talk to him about his autism, which is tricky. I don't want him to think there's anything "wrong" with him or feel insecure. He did become more interested in it when I showed him a computer program children with autism are using in the Boulder, Colorado, school district. I've tried to highlight difference but have discussed that people with autism may have problems with some areas and that all of this will help protect him from getting into a difficult situation as he did in first grade (which he remembers acutely) since we don't know who his teachers will be. I've also talked to him about other people with autism and their successes.
The good news is that he's doing increasingly well in school. Straight A's the past two report cards, and has scored in the top few percents on national tests such as Iowa. What I'm glad about is that I had him tested for the gifted and talented academy before kindergarten and then placed him in it. Everyone said he wasn't ready and couldn't do it. I worried. I've always pushed him a little and it's helped a lot. Despite the struggles, he's doing better in the school he's in than he would in others. Boredom causes trouble for him, and putting him in a classroom of kids learning the ABCs when he could read would not have been good. At the same time, I know they break directions down better at other schools. I don't know if I made the best decision or if the stress has harmed him but I do think he'll do better in the long term and have more opportunities.
There has been a lot on our schedule this month! The Tilt in Space gets installed next week, and we talk to a nonprofit group about consolidating debts and getting interest rates down. Our out-of-pocket insurance costs last year turned out to be $33,000 (including mileage, parking, special cushions at home, meds)--it bites that we've had to pay a percentage of surgeries instead of just co-pays. I think it cost me $30 to have our daughter. Good news is that the IRS refund will be about 6 weeks of income. I've decided from this that any future physical therapy will need to be set up for home after two visits and that there will be no Xtreme measures to prevent further adventures in Xtreme Arthritis since disability identity is not so bad and the arthritis continues anyway. We want savings and retirement, and now's the time, and I'm not going to be pressured into anything to be the good patient. Yeah, I know it's not good to have bladder pressure where there's kidney damage or to have heart/blood pressure issues, but I'm hoping all that's at a point of stasis. I don't want repeated MRIs, cortisone injections, extended physical therapy when I could do it at home, etc. The charges for those are hefty. This all takes a huge psychological toll too. We've had no problem making payments but can't actually make a sizeable dent despite all that we're putting in each month because of very high interest (these bills are on credit card and they've refused to negotiate lower interest, despite good credit). Thus the consumer help. I know we're not the only people in this boat. Most people don't understand the huge financial costs of illness.
What are the copays on Enbrel or Humira? I'm not sure that I'm willing. Hey, maybe I can go to work full time...just to pay my medical care! Heavens.
If I needed the spine surgery this year? It couldn't happen. We couldn't afford our portion. I don't even understand how we'd have paid our portion of the gallbladder surgery, which was acute.
I have touched base with a few former friends that I've missed. I wouldn't mind making short day trips or overnights to see a few friends in May--or June, with the kids. Some away time is good.