Just another day

Some readers have asked lately why I don’t write as much about autism any more. “How are the children?” they want to know.  It’s kind of funny that this blog started out to connect to other autism families, to learn, to share, to get through the days, and yet three years later what we find as we hit the bottom line is, we’re all alone in this. And it’s not necessarily progress.

Nine years now, we’ve had the diagnoses to work with. And work we have. Hours of meetings, consultations, hospital time, psychological time, special teachers, special classes. The dedication of our lives to this process of helping these three children overcome the cards they’ve been dealt.

Doctor Doo-Be-Do, for the most part, has succeeded in his quest–as much as a boy just this side of adolescence can, I suppose. He’s still disorganized, still emotional, and has a hard time mastering the art of anger. Some of his flightiness is likely ADD, some is hormones, and– he’s a boy. Inexplicable to a mother who’s raised five girls.

He’s going back into therapy this week, mostly to learn to deal with his reactions to other people–how anger and misplaced sarcasm isn’t always the best choice, for example. And how to deal with his brother.

 Little Miss has spent all but the first year of her life in some sort of therapy, whether it was occupational, physical, speech, cognitive, hippo-, water, and now a round of medication. Incredible.

This week, she’s beginning work with a play therapist with the intent to strengthen her language skills. This therapist has been part of her life since she was about four, when all Little Miss could do at their intake appointment was sing the “Chicka-boom” song. She couldn’t answer questions, she couldn’t tell one day from the next, she had no idea of her place in the scheme of life. Now Little Miss has successfully overcome the hurdle into young womanhood, and she’s preparing for the entry into junior high school next year, with half of her day mainstreamed in regular classes, where she does projects extremely well, but tests less so.  In fact, Little Miss has been commended this year for her extreme empathy in assisting the little ones in the beginning autism support classes, helping them come to the right class and entertaining them till the bell rings.

I’m kicking around the possibility of home schooling her during her eighth grade year to really work on her receptive and expressive language skills as well as her life skills.

I’d add the depth of travel, which she loves, to give her tactile, hands-on experiences to flesh out her capacity to file words away and acquire the processing ability to keep her language available for use. With a firm plan of objectives from this long-time therapist, we could work toward goals, both mental and educational. Taking a truck and small camper, we can expand our world. Maps will trace geography. Museums, state and national park resources really bring science language home. Planning trips solidifies executive functioning skills; tracking our budgets enhances practical math skills. We will also read whatever we can get our hands on to make her language the same easy, effortless exchange it is for so many of us.

          If I can pull this off, the process will be documented in a book about that year, a story told in personal moments, therapeutic breakthroughs and pictures. B has suggested a companion volume to be written and documented by Little Miss herself–how interesting is that?? I hope her language expands to the point that’s possible. Maybe her volume can be primarily pictures. That’s the point, after all, to show how creative work can help give a person opportunities to become themselves in a world that doesn’t always see things their way.  Other autistic children might relate better to a book they can see without having to process words, too. She’s come so far already. What a gift for all of us if she could enter high school on the same page as her peers.

And then there’s the Captain.

After his ‘stellar’ behavioral record last year, several suspensions for outbursts and attacks on other students, falling grades, disgusting personal habits, the school sent him to a partial hospitalization program at the beginning of last summer. It was supposed to last till school began in September. Then they said they hoped he’d be done by maybe November. Then January. Now they’re hoping to effect some change by the time school begins in September this year. Maybe.

So far they’ve been able to make him stop hitting people, when it’s a ratio of two staff to ten students. He’s still disrespectful, angry, has tantrums–all the ODD stuff–and he doesn’t care to please others, and believes that he always does everything right and everyone else hates/sabotages/screws him over–all the RAD stuff. He’ll use the Asperger’s as an excuse, when anyone asks him to do something– “You can’t expect me to do that, because I have Asperger’s!” –but he won’t take time to learn about the condition, and the fact that Asperger’s people are just as successful, if not more so, than any other human being. They just have to make an effort first. An effort of any kind.

His hatefulness crosses over to home, too, and we are all treated to his outbursts and refusals to carry his share of responsibility. On a recent trip, he stayed home because of a variety of circumstances, and his little brother was a different person. Free. Happy.  One of those moments that really brings home how oppressive it is to have a child who sucks the life out of the family.

The doctors at the school seem to have the attitude that the Captain is just going to be like this, so we’d best adapt. But after nine years of therapy, including two years of 30-hour a week TSS and now 30-hour a week intensive partial hospitalization for the better part of a year, what else are we going to do? If the professionals can’t handle it, can’t make him see himself, can’t show him why responsible behavior and ambition and caring for others is a good thing, how can two human parents ever hope to?

So, true. I don’t have as much to share about our ongoing experience with autism on a regular basis, because it’s sort of settled into our lives. We still deal with it every day, sometimes on high notes, sometimes on low notes, but it’s now part of the routine, not something we can do something about. But the end of the story hasn’t yet arrived–don’t worry. I’ll keep you posted. 🙂

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2 thoughts on “Just another day

  1. I would love for you to bring Little Miss to my garden to touch the plants on your trip. Maybe they’ll touch her in a positive way – maybe not. Let me know in advance – I’ll be looking forward to summer!

    Shawna

  2. thanks for the update… i continue to be awed by your immersion in your children COMBINED with a ‘getting it done’ element in your own life… looking forward to that book, and hope little miss finds her groove.

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