Of IEPs & Crumb Cake
At 11am EST today I'm speaking on The ABC's of an IEP on the Autism Women's Network. I know more than a few of you out there are as well-schooled (pun intended) in this particular area as I am (or as I seek to be—as many of you know, in the heat of the moment when you're advocating for your child's education and future, one can feel as if one is making every mistake in the book). So hoping that any and all of you will add your collective thoughts and, yes, wisdom to the discussion. One can feel so alone when at a meeting face to face with what can seem like a posse of administrators and school personnel, but we're all in it together.
We'll be having an IEP meeting in a few weeks. Charlie's change in schools necessitates a change in his IEP, as he's now in an out-of-district placement at a school specifically for children with disabilities (while most of the students at his school are on the autism spectrum, some have additional and/or other diagnoses). One notable difference in his new school is the ratio of teachers of students: Whereas as there was one teacher and four aides for four students in his former public school autism classroom, there is one teacher and two aides for six students in his new school. Under serious consideration will of course be the matter of the helmet: Charlie's current Behavior Intervention Plan, written by school personnel (his Child Study Team), specifies the wearing of the helmet at all times with no ifs, ands, or buts. Already we've gotten the sense that the new school is more, how to put it, going about things a bit differently, having him remove it on a warm day and not fastening it as tightly to his head.
Charlie's speech therapy and occupational therapy services have not changed much, with the difference that he is now receiving the latter (OT) regularly, as the OT in his public school program left at the end of the previous school year and a replacement had yet to be found (and, she now works at the autism center where Charlie is). Also, we suspect that he was not receiving the speech therapy services that his IEP spelled out at his old school, as the former speech therapist indicated that Charlie was "often not available"—i.e., he was having "behavior problems" that made it not possible for her to work with him. So, someone should have started addressing those problems so he could have worked on speech, especially as one of the main reasons, Jim and I think, that he had so much trouble at his old placement was that his communication attempts were not being adequately acknowledged and understood.
After no school for five days due to being sick last Wednesday and to Thanksgiving, Charlie was more than ready to go back. Sunday was an automatic Transition Day, during which Charlie woke up cheerily and asked for a walk. I'd just gotten back from running so I grabbed an old coat (of Charlie's—he was wearing it last year) and out we went. After about a minute he started running and then he started a low hum that became somewhat louder and then, after turning a corner, a definite moan accompanied by a litany of words:
"Aunty Joan Portia. No more head bangs. Ice. Hi Grandma, hi Gramma. Good morning everybody, good morning, what day is it, today is Monday. No more head bangs. Portia. Gong Gong Po Po."
On and on.
He ran, he walked, hands over his ears for most of the time. It was sunny with a beautiful blue sky and we scuffled through lots of dried-out leaves. Charlie's litany continued and I sometimes repeated his phrases, sometimes stayed silent. For me, it helps just to echo Charlie's words rather than start to ask questions (big mistake) or to offer commentary or to try to change the subject. Doing such is, I've learned, tantamount to ignoring and devaluing Charlie's efforts to communicate and to give us some sense of the thoughts running through his head, thoughts about people (my parents, the much lamented late Aunt Joan, Jim's sister's dog—Portia—who Charlie used to run away from when his aunt and uncle brought her on visits to my in-laws' house when we lived with them) and places (school) that are central to his life.
The litany faded as we neared home. Charlie hurried inside and helped himself to a pan of crumb cake that he'd gotten on an evening Quik Chek run the night before. The rest of the day passed in proper peaceful-easy fashion, with two more vigorous walks and a good bike ride just as that bright sun was setting. Inbetween Charlie told me that he wanted to go to "ShopRite" when I suggested Trader Joe's or a local grocery store.
The highlight of the trip involved a negotiation over crumb cake. Charlie had a selected a large piece (with mammoth-size "crumbs" far bigger than the yellow cake beneath them) from the bakery section. We had almost finished shopping when we passed a display of Entenmann's goods. Charlie stopped, looked, and said "yes" as he pulled out a box with an entire crumb cake.
"If we get that one, we'll put the other one back," I said.
Charlie leaned down and picked up the blue and white square box. I picked up the container with the other crumb cake and set it where the Entenmann's cake (now in Charlie's hands) had been. I was thinking about how we should walk back to the bakery section on the other side of the store but then we'd have to go through the whoe negotiation again when Charlie leaned back down, picked up the other crumb cake in its clear container, put it in the shopping basket, and placed the Entenmann's cake back (a little crookedly, as the boxes were stacked very tightly; I fixed it).
Previously, getting both cakes would have been the only way we might have left the store in peace/without attracting a lot of attention we didn't really want. But not yesterday.
And such negotiations and being able to make such negotiations signify a real advance in learning and understanding in Charlie. Maybe they can't be formulated as a "measurable goal" in an IEP but they're the kind of thing that we'll make sure Charlie's Child Study Team knows about when the time for his next IEP meeting comes.