Friday, June 27, 2008

Autism

I don't know where to begin. One word at a time, I suppose. We've had bad bronchitis this week, with an assortment of other fevers, asthma attacks, ear infections, fevers, and stomachaches among us. No biggie, just tired. But I'm still circumnavigating. The one word title probably says why this is more difficult for me to write about than my own disability.

The school district autism evaluator called me this week.

Autism.

Yes, I know. But here it is, a name, and not just from me. I've known, I've known for at least five years, and recognized signs before that. His doctor has known. Other parents and friends have known. Some parents might cry when they finally get the diagnosis, since it's been a large struggle even to get the testing. Three years. But I had to push down the emotion for the battle I knew would come. There are always battles. And I don't like battling, though I do.

Ms. Administrator doesn't want to assign the medical diagnosis code for autism to our son since he doesn't qualify for special education. Even though that was her finding. Even though that was the word she used. Autism. That would be like a doctor refusing to diagnose my spondylitis because I don't qualify for workplace accommodations at some points; you don't make the diagnosis contingent on the treatment needed or available or whether someone is able to function in other ways, but on whether the condition exists. In fact, the state K-12 disability handbook says that not all children with disabilities will require special education. Qualification/nonqualification for special education (generally below 7%ile) does not negate a disability.

Our son would, however, qualify for a 504 plan (reasonable accommodation)--if she would him the diagnosis code, which she won't. Even though this was her finding. Autism. Ms. Administrator asked what accommodations we would like and said she feels comfortable recommending those (such as breaking down/writing down multi-step directions, shorter writing assignments or more time to complete, keeping his homeroom the same as his language arts class to minimize transitions, qualification for tutoring even if grades are passing, etc.). She later mentioned a 504 plan and asked if I knew about that (that's what I was asking for with the specific recommendations for accommodation).

Ms. Administrator said since the school is willing to work with us, she'll write up a general plan of recommendations rather than having it formalized as a 504 plan (reasonable accommodation for a disability). I said we needed a 504 plan. She said she'd have to have a medical diagnosis code for that and that wasn't something she had. That's a diagnosis she could give. She's playing semantic games. I said we may be very well be moving in another year or year and a half (close to my sister) and need the diagnosis to be formalized, and not all teachers in the future would necessarily be willing to accommodate any needs without a formal diagnosis.

Ms. Administrator said when he gets to the SATs, for example, and needs more time on the written component then he can get a diagnosis. I said a diagnosis is more difficult to obtain the older the child and as he outgrows or learns to compensate for or disguise some behaviors. For example, he mouths words to himself silently over and over now rather than saying them out loud when he's at school. He still feels free to let loose at home sometimes: "4:30 Tuesday. 4:30 Tuesday. 4:30 Tuesday. 4:30 Tuesday. 4:30 Tuesday...." What's up with Tuesday afternoons?? Mostly he understands that depending on volume and duration, people's patience can decline. As a high functioning autistic, he's learned how to give himself the relief he needs while not excessively disturbing others or causing himself social problems outside the home.

Then Ms. Administrator said she didn't want our son labeled. She wants to talk to me about labeling? First, it's not appropriate for our son's peers to know his diagnosis. Second, if she's implying that someone with a disability is lesser than someone else when they receive a diagnosis, or that his teachers will see him as less, she's barking up the wrong forest. What are her fears with diagnosing ("labeling") him? I've been told this throughout the past 3 academic years.

The school district is very conscious that they don't want anything that's not a profound disability to be formalized as a diagnosis. Ms. Administrator specifically asked if we'd talked to our physician, and fortunately I had done so recently, at the prompting of an outside evaluator I'd talked to who warned me that they'd ask. Until I requested an outside evaluation this year, the school didn't conduct many of the assessment tools for autism they did last month. I thought our son had been given a full evaluation the last two years, but he had not. Suddenly they change their mind now that they might have to pay for an outside evaluator. Yes, he has autism. No, no diagnosis code. Conflict of interest? They don't want to diagnose something that they would have to treat or accommodate?

I don't disagree with the results of the testing. I disagree with the conclusion, the refusal to give the diagnosis. The district will probably ultimately deny a request for an independent outside evaluation because their tests and the results are reasonable. (Their conclusions are not.) Readers here know how difficult it is for me to complete daily tasks, much less embroil myself with more paperwork, complaints to the state, in person meetings, etc.

I do know this. Our son is smart. He has a very high IQ and very high achievement scores. He can succeed and hold regular jobs, but maybe not without help or help on the way. He may need some assistance to attend college, if he chooses to do so (he may not, given his resistance to school). He may need guidance to self-regulate, socialize when it's necessary, and take care of himself. When given a choice, our son would prefer to be left alone in the middle of a room, preferably with technology. He wants us around, yes, but he doesn't want to talk. Failure to give him a diagnosis or to discuss issues with him when he's older is going to lead him to feeling like a failure, that something's inexplicably wrong rather than understanding and being able to explain that some behaviors and preferences are normal for him. We all have to learn to adapt and adjust to the world. A kid who's yelled at for echolalia or failure to follow instructions or refusal or inability to answer or individual obsessions/repetitive behaviors is going to have a rough time coping compared to someone who knows that they're fine, that they just need more downtime and space to decompensate than others, that they need to have instructions written, that they prefer a few close friends to a large and overwhelming group, that loud places or major transitions are going to cause them to feel upset and that a little planning is needed. What if we didn't recognize his problems? No one else would have. And I've seen a child with serious delays whose parent didn't realize it. Thus no help, with difficult consequences. Our son already knows he's different. He does. He doesn't feel smart. He is. I discussed some of his test scores for him recently and told him how good that was. He beamed. He looked relieved. I just said he has trouble remembering directions or listening (he drifts into interior space and shuts out the world) and that doesn't mean he's not smart. He agreed that it's difficult to do well on a class project if you haven't heard the directions, and that just means you hadn't heard, not that you couldn't do well if you had. This doesn't mean that he is ready to hear everything at once. I don't think he is. He doesn't have the maturity for it and he doesn't like me to discuss his issues or needs in front of him. But he can learn a bit at a time and take responsibility for his disability as he gets older.

In better news in this regard, I talked recently with our pediatrician, privately, since our son gets ticked off or sad if I talk about him in front of him. I respect that since I got ticked off with my parents for talking about my health in front of me too. She referred us to a new neurologist and neurology team that specializes in autism and other learning disorders at a major children's hospital. I don't know that the district will accept Dr. Superexpert's opinion on anything, though they are required to take it into consideration. What I do have hope for is that she will be able to offer some help or resources for his language and social issues, issues that the school is not required to address, and for any educational needs that are above 7th percentile (special ed) but below his optimum. We know other families from our school with autistic/dyslexic/other learning problems, and they've *all* had to pay out of pocket for diagnosis. We did spend tens of thousands of dollars on occupational, sensory integration, and speech therapy when he was younger (not covered by school unless 7%ile), and every penny was worth it. It's why he's high functioning autistic rather than still in diapers and unspeaking. Not everyone gets such benefits. But he did. He's outgrown these needs. But he has others.

I do know I'm short on ability to reconduct all tests (a full day) at Superexpert's and refilling out the stacks of paperwork again giving his history. I am hoping that the district will give us his records and recent testing (though they aren't required to; under FERPA we have the right to review them, not a right to photocopy them).

When J. took me to the cardiologist recently, she mentioned that Mrs. V., one of the third grade teachers at our school, a teacher my daughter has had, is particularly good at working with gifted children with disabilities. She told me a story her daughter had related to her. When one student said something harsh and hurtful to a child with an obvious learning disability and some minor behavioral quirks, Mrs. V. sent the child with a learning disability on a couple of errands in the school and closed the classroom door. She listed for the class all the positive traits and abilities of this child and lit into them about ever considering saying a bad word about him or people with similar issues. She told them what a special person he was and how they were fortunate to have him there. What a difference from the recent story about the evicted kindergartner. When I heard this story, I requested Mrs. V. for my son next year. The principal said he thinks that's who my son is assigned to and will double check when he's back in the office in a few weeks. I like Mrs. V. already, though I didn't know this about her. Given this level of empathy, this could be his best school year yet.

I don't like the battles. It shouldn't take parents with graduate degrees and quoting the law and talking to acquaintances in the educational field to learn the magic words to be able to get appropriate help for their children. I love my child. I want him to succeed. Shouldn't the schools?

2 comments:

Elizabeth McClung said...

Yeah, I'm angry too; I don't know why exactly because I can't understand but it seems that MONEY the board might have to pay is an issue? But yeah, it seems your son and I have the same thing, when you are in the room, everyone can say the diagnosis and agree. And when the official letter gets written up - suddenly all that stuff talked about it gone. And what can you do, write a letter saying, "The superindentant SAID he had autism but won't write it down, or officially state it." It leaves a feeling of frustration and bile. And yes, I don't think waiting until the SAT's is really the best time - ARRRH! Sorry, couldn't complete that sentence.

I am sorry that your family seems hit once more with the drone thinking and the "not our problem" or "we won't make it our problem" or "we won't make it official" - sucks. I don't know what else to say. Family first (my family excepted).

FridaWrites said...

Yes, it's definitely about the money. One of my arguments has been that we have paid a lot of taxes that more than justify meeting our child's needs (and other children's). When my sister taught elementary school in our state, she said she was not allowed to recommend to parents (or to the school) that a child with learning problems receive an evaluation. Most parents don't know the process at all. And thinking I knew the process, I assumed all the test results (a lot of tests) we were given last year were a full eval and didn't miss the autism component almost entirely.

Now if he's at risk of failing the state Leave All Children Behind test in a couple of years, they may gladly diagnose him since the school will get lots of money for extra resources for him. Which he may or may not actually see. My sister said her school received extra money for both GT and special ed kids, but those kids didn't necessarily see any extra resources.

The other issue I found out in reading through the 50 page "your legal rights" handbook is that if a child is diagnosed with autism, there's a whole list of other complex planning/accommodation they have to work on too. This isn't the case for anything else. So keeping it informal, they avoid more work and using limited resources. Of course if every kid who needed evaluation and special ed or 504 got it, they could justify requests to increase their resources.

The other mom at GT School we know who has an autistic child said that she was informed by a friend of a friend at the district that the school was about to drop her son from special services at the annual meeting as he prepares for middle school. Thinking this was just the usual annual review, she'd have been blindsided (her word) and not have been prepared had she not been tipped off. Her husband is a 7th grade teacher, and even knowing the ropes and magic words (he's dyslexic himself) they have had a lot of trouble.

I mean, if allergies and ADD qualify for a 504 plan...(I'm not finishing sentences either).

Mostly I feel like we're fighting a battle based on potential problems, but we have run into teachers before who have refused to accommodate him (they switch classes at the Gifted and Talented school).

Yes, family first.

I am long winded tonight!