Reality crashes in

This week I’ve had two whammies of a sort that make me have to confront our children’s situation–and their very clear deficits that I often try to minimize.

The first was a two-day custody trial for a client whose child was diagnosed last summer with Asperger’s Syndrome (the same diagnosis as Captain Oblivious). The child is nearly past the age where therapy will give him some real help. He was misdiagnosed, as many Aspies are, with ADHD at 4 and put on meds for four years. Only now when the social issues come into play in school, are the little obsessions more apparent, the reclusiveness, the inability to understand what other people expect in a conversation, in a relationship.

Oddly, it was the father pushing for the services, the testing and the treatment, and the mother essentially in denial–a division that doesn’t usually occur. Of the families I know dealing with this, it is much more often the mother who bears the burden of carting the child to all the sessions, making sure home treatment is carried out, talking to the professionals, and the father who withdraws into his work or other life. So good for him, I guess.

But as it often does in court when I have to hammer home the devastating nature of the autism diagnosis and the changes the family will experience as therapy progresses, it reminds me of our situation and the seeming hopelessness of experiencing change for the Captain.

The case I had this afternoon was a happy one–a stepparent adopting a little girl who is a month younger than Little Miss. As I listened to the conversation she had with her parent, the expansive vocabulary, the ability to reason aloud, the playfulness of her teasing; in short, so many capabilities that ‘normal’ children her age have that Little Miss does not, it pained me all over again.

I try to focus on her steps forward, but reality is like the impact with the cliched brick wall in front of us: she reads two years behind her classmates. Her emotional development is that of a child 4 or 5 years old, though she’ll be 9 this week and is the size of a 12-year-old. Fortunately her math is better than the child in the first case above. Apparently he didn’t excel in anything, and instead of placing him in a program suited for autistic children, the school’s answer in his somewhat backward part of the country was just to send him through third grade again.

But is that so wrong? Is it fair to keep promoting these kids when they haven’t mastered the skills they’ll need? At the IEP meetings, I always insist she is smart, and hope she’ll catch up. On a practical basis, she is very capable of household duties, etc., and she is smart, she is slowly moving forward. School? Not so much. But even if Little Miss finally develops appropriate language skills in 5th grade, or 7th–how much has she missed that all her classmates absorbed back here in 2nd and 3rd grade? They adapt her program and move her ahead with her age group, but is that really what she needs? When do you stop the wheel and get off?

I think this year will be the critical fulcrum point for both these children, as the Captain deals with junior high, and Little Miss confronts the more theoretical and analytical processes that are part of fourth grade. We are seeking outside help this year with TSS/BSC/mobile therapy as is appropriate. But we like to think that schools, especially ones as geared for dealing with ASDs as ours, are the best solution for the educational and socialization skill acquisition. Surely they’re better prepared than I am.

They haven’t got there yet.

Maybe they will.


4 thoughts on “Reality crashes in

  1. The things you face every single day are not for the faint-hearted. The best thing the children have is you and Cabana Boy. YOU will make sure what needs to happen happens in school and out of school.

  2. I’ve just finished reading Temple Grandins book “Emergence Labeled Autistic” and reading this reminds me of the last paragraph of the book.

    “The most important component of the treatment plan is the presence of loving people to work with the child”

    I think Little Miss and Captain O have this in spades with you and Cabana Boy.

    But it can be such a hard struggle fighting for our childrens needs to be met by the system and then coming home to our children who somedays want nothing more than to fight us.

  3. I think I have done a pretty good job of numbing myself to the abilities of other children compared to mine. Those twinges are like a bolt of lightning rolling through your body. Or maybe it is because Matty is so far behind that I know he will never catch up and Rachel is so close we can almost, but not quite, taste it.

    It looks like our kids are in the same journey this year. Matty begins middle school and this looks like it will be a tough transition. Rachel begins 4th grade – at a new school. She is terrified and excited all in the same little body so she is flitting up and down the halls flapping her hands. The 18th feels like it is years away. 😦

    Good luck with school this year. I think once we get past the first few days and get into a routine we both will come out feeling great 🙂

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