Tuesday, April 14, 2009

Bigger News

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.


yanub said...

I understand the "no heroic measures" bit, though I think maybe people will think you are talking about terminal illness instead of just living as a person with disability. It's weird, I was just talking with a coworker about the same thing, how neither one of us would ever want hip or knee replacement since, in our circle of acquaintances, the end result is the same as not doing it--impaired mobility and eventual wheelchair/scooter use--but with the added unnecessary pain and expense and danger of surgery!

I'm glad to see your son finally got a proper diagnosis that will force the school district to work out a 504. So often, schools do all they can to ensure that students with disabilities will drop out eventually. They will protest that they do no such thing, but denying accomodation for the main reason that they just don't want to bother is the same thing as shoving a teenager onto the street without a diploma. And most of the kids who are hurt by these policies are perfectly capable of gaining a regular diploma, even of outstanding work, if they just have some simple supports. So they brought up the special ed bugaboo with you, too? I heard that one 15 years ago when my daughter was in high school. They like to scare parents with the prospect of segregating a child with disabilities into high needs classrooms with non-diploma classes--that's what they mean when they say "special education." It's a real good reason why all parents should demand inclusive education for all children, because the schools so love to use segregation as punishment for deviance from the norm.

FridaWrites said...

Darn, I didn't think about that--I added a phrase. Thank you! My grandfather has been so down about not being able to get a hip replacement that I'll have to tell him that. He has bad cardiac/respiratory issues and regretted not getting one when he was first told to--now his hip is ground down and he can't walk. I have seen it work better for people my age who need it, but there's a lot to be said for recovery when you're younger.

With special ed, he doesn't qualify because of his performance, but they did bring it up as if we were asking for that at all. He just needs accommodations in the regular classroom. And I agree with you, if that level of frustration continues through adolescence, a kid's likely to drop out from frustration. We'd have home schooled or tried private school if second grade wasn't better. Home school isn't great for many kids who have autism since they need to get used to not shutting down and being able to work among many others, in my opinion. Sometimes that is the best option, though, particularly with bullying (from teachers too).

FridaWrites said...

And yeah, I don't like the idea of segregating kids either. That's what it is.

One Sick Mother said...

Well, let me offically welcome you to the "Autism Mom" club; another of those that no-one wanted to join. I can tell you that the people here are great, tho.

It can be very tricky to get the appropriate accommodations in place for these high-functioning ASD kids, because... well they can fool a lot of the people a lot of the time, and *look like* any other kid. Then their disability gets treated as if it were a discipline or behavior issue (which it is NOT) and things can spiral rapidly.

Don't give up your fight to have him classified and accommodated appropriately. I know firsthand what it is like to be a gifted kid with a disability (I have ADHD) and although I am sure things are better for your son than they were for me, educated by nuns in 70's Ireland, I still feel for him. It is obscenely frustrating to be punished for producing your very best effort (punished ...say because your EDS handwriting wasn't up to par even if the content was excellent).

As for the whole segregation things: Sometimes a self-contained SpecEd classroom IS appropriate and the best option. Joe was segregated for the first four years of elementary school. He simply could not handle a large class -too much sensory input. he made tremendous progress in those years, whereas he almost certainly would have regressed in a regular classroom.

There were a lot of advantages to self-contained:

1. much more one-on-one attention.

2. Really high-grade teachers who Just. Get. it. (in our district, anyway)

A far nicer brand of parents who also get it and who don't judge.

OK stopping now. Sorry for the novel. Maybe I should write a post on this...

S. said...

Oh man, the horrors of XTREME ARTHRITIS. While I am all for having less vomit-inducing pain and perhaps the ability to button my own cardigans, I'm really uncomfortable with the way doctors talk to me about treatment and prognosis. It's generally of the "do x y and z or get disabled" school of fear tactics; disabled here means, as far as I can tell, a wheelchair instead of a cane. I like what you said about stasis as the goal rather than complete and total recovery.

I think doctors should get a quick crash course in the way the people they're treating perceive the outcomes, or at the very least they ought to be made to write out lines for a few hours. "Disability is not a fate worse than death" would suit, I feel.

FridaWrites said...

Well, OSM, I see your point, particularly when it comes to overstimulation, noise, etc. The main trick for him is getting him in the same homeroom and the same two-hours long language arts class, which reduces transitions for him and means things get turned in. Second and third grade went a lot better because of that. The school argued about that in first grade, but most first graders don't change classrooms and a lot would have trouble with it, particularly with autism! I also need to research 4th grade teachers by talking to other parents since there are some new ones--I put in a specific request for a specific teacher this year because she was the best match.

And yeah, he is good at hiding autistic behaviors, mouthing words or sounds at school rather than saying them over and over. This also leads people to dismissively say, "he's not on the autistic spectrum, he's just______," whether that's inattentive, "a boy," bored, helicopter-mommed (no!), etc.

Yes, S., sometimes the interventions can be as draining as the pain or even exacerbate it greatly, though I'm sure it's not the intent. I've found that not much has really prevented further disability. I hear you with vomit-inducing pain; for me it's combing my hair or holding books rather than buttoning--oh, I just realized that's because I increasingly choose pullover shirts! I guess I have problems with it too.

Full Tilt said...


You are definitely on the right track as far as advocating for your son. I have CP and attended school before the advent of mainstreaming or accomodation, and studied to become a Special Education teacher. From both my early and later experiences, your concerns and points are valid. So too are the considerations regarding smaller class sizes, increased teacher to student attention and less potential for overstimulation and distraction.

As an intern, I experienced the ignorance of school personnel and know of other teachers with disabilities who were discriminated against due to disability. I got out of field rather than face that.

Now trained as a librarian, I am faced with the increasing debility of my joints, especially one knee, due to osteoarthritis and degenerative damage, and face the possibility of the reduced mobility and dangers of surgery mentioned by Yanub. I would appreciate any information or advice as I am in the process of getting a custom chair.

Good luck with your son. He sounds like a wonderful kid.

FridaWrites said...

Hi, Full Tilt, I'm glad to share the information I know about wheelchairs and scooters if you want to email me--fridawrites, gmail. Please feel free to do so. A custom wheelchair does offer a lot more seating options than scooters do. Library science is one of my fantasy careers, though the lifting limits with some jobs scare me (I can't do so, but there probably are some jobs that wouldn't require it).

I think a lot of good teachers leave the field from frustration. It's difficult or impossible to fight the system. I just don't understand how people can blatantly ignore a law that they're very familiar with.

I was disabled as a kid and am unsure whether they considered pulling me into separate classes, though I do seem to remember some rumblings, especially that I might not be allowed to pass 5th grade, despite being the top student, or other grades, because I could not take P.E. (!) I'll have to ask my mom about it.