A Sense of What’s Right (#464)

I was in the middle of things—as I was today, sitting at my desk checking email and writing quizzes (“decline each word in all 5 cases and give gender”)—when I took a glance at this article, the fourth in a series about autism, Public schools open their doors to autism by Kathleen Carroll in the September 27th Bergen Record, and my day stopped.
Every school district in North Jersey includes at least one autistic student. Some — such as Tenafly, Ramsey, Oakland and Mahwah — have dozens. Wayne has 67. Teaneck has 59. North Bergen has 36…..
Both of the Pinzons’ sons have autism. The Pinzons said they initially wanted both children to attend a school dedicated to autism, but eventually signed off on Daniel’s in-district placement — in part because officials agreed to send their 5-year-old, Sevastian, out of district to an established school of their choice dedicated to disabled students.

The negotiations left a bitter taste in Pinzon’s mouth.

“If I was a wealthy individual, I would eliminate all of this … and just pay for my kids,” said Pinzon. “[But] at the end of the day, it’s like a marriage, the schools and the parents. You have to get along with them because it’s for the long haul.”

I think, been there, know that: The bitter taste in negotiating, working, and clashing too many times with our former school district. Like Pinzon, I think, what if we had all the $$$ in the world and could just pay for whatever Charlie needed? Parents do take their school district to court and sometimes win, but, like Pinzon, we have learned that it is not just a matter of “can’t we just get along,” but we’re gonna have to swallow something and do it. And “doing it” does not have to mean agreeing to whatever is recommended for Charlie. “Doing it” means that we have to keep our eyes open, to judge that Charlie’s school program Charlie is right for him, that his home ABA and speech sessions are the right thing, that he is doing well at piano and swimming and bike-riding and that he enjoys these things.

And that we have to speak up and say our piece when we think, when we sense, things are not right—and my truest gauge in this is Charlie and his level, of peaceful easy-feelingness.

By this standard, Charlie must be in the right place—in the right school setting. “Talking more,” everyone has been saying. “Had to wait but handled it well,” comes the report. His teacher has been concerned about Charlie’s latest interesting behavior (as I will call it): Squeezing his eye. We talked on the phone last night—allergies?—I called the pediatric optometrist for an appointment (she suggested that this might be a self-stimulatory thing but insisted we come to see her as soon as possible)—all this and still a “very good day” at school. Charlie waited in the driveway for his ABA therapist and then—after looking wide-eyed at the new nurse (Veronica has a week-long vacation) and gulping down rice and shrimp—Charlie returned to the driveway to wait for his piano teacher.

Teaching Charlie to use all of his fingers (not only the index finger—he favors it, after years of being encouraged to use it to point with) to play the keys is the new focus; this has made me aware of how Charlie uses his fingers, or rather, does not use some of them. His thumb and pinky seem, as I have realized in placing my own hand gently under his as he plays the notes, just to be hanging on the edges of his hand. It is his three middle fingers that are the strongest and that he uses: No wonder Charlie has struggled to write his letters. He has been coming right to the piano when called to practice with me and by his teacher and while I do not know if Charlie will always be so motivated to play, I hope piano, or some form of music-making, can continue to be something he enjoys. He has not minded me holding his hand with the thumb over D, or me directing his middle finger to press the keys twice.

And I know that Charlie is getting it when his fingers move as directed with me just holding my hand under his. Sometimes this past week I have just been able to sense that the movement of one finger and then another was his own doing, and my hand only a starting prop. I can sense that he is playing the notes right, that I am playing my role as mom-facilitator right.

It is beautiful music, and it certainly helps that Charlie is boarding the bus to school and getting off from it looking pleased and peaceable: He senses that—after last year’s bittersweet, of calls from the school nurse, of bruised foreheads, and of the month Charlie had to stay home because there was no school for him to ride any bus too—something feels right.

I am almost at the end of my day as I write this, Greek and Latin quizzes ready to go and a student essay to read, and, as I look at Charlie with his head thrown back upon the pillows, time stops again.

I’m in it for the long haul.

3 Responses to “A Sense of What’s Right (#464)”
  1. tara says:

    Knowing you have found the right place, the setting that supports Charlie’s learning and repects his
    spirit-it must be a relief.
    We are not there yet. We are unsure right now which way to turn-how we should adjust our headings before setting off again.
    I agree that Charlie is the best gauge of a school’s success.
    He is doing so well and happy to boot!!

  2. Lisa/Jedi says:

    Yes, the gut sense is really important! I’ve found that following my gut helps to keep me off the roller-coaster, because then I react more to the gestalt rather than to each up & down event. Certainly helps me keep the peaceful easy feeling 🙂

    What you said about Charlie’s fingers also resonated… B’s fingers are similar. We had him evaluated by a hand surgeon at his pediatrician’s recommendation because she was worried that his subluxing thumb joint might be a problem for him, but it turns out that it’s strong enough for him to manage. I never cease to be amazed by what B’s soft, double-jointed fingers can do… & while he’s had difficulty gripping pencils, etc. in the past, it’s never stopped him from legoing (although the “use the tool, not your teeth!” mom-tape gets triggered a lot when he’s taking them apart).

  3. Charlie sometimes uses his teeth to pull at something too—–I’ve never thought of him as double-jointed, hmmmmmmmm……..

    Tara, it _will_ work out! People said this to me all through last year and all I thought was “yeah right, what a mess we are in.” I practically have to pinch myself to think that Charlie is doing so well, thanks to getting the kinds of teaching and supports that he learns best with. I still keep checking my cell phone during the day but they don’t call, and the reports at the end are good (with mention of difficulties, too; these pass in a matter of minutes). I was thinking of you up in Maine as I noted how the trees’ leaves are turning yellow here.

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