Of IEPs & Crumb Cake

Sunday morning walk with Charlie  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.

11 Responses to “Of IEPs & Crumb Cake”
  1. emma says:

    I really enjoy reading about Charlies progress (I’m sittiing here smiling, which is a great way to start the day).
    Has Charlie always been so vocal with these kind of lists of words or is that new?
    I can’t help you with the IEP, but it does sound like there is a different attitude in the new centre, a willingness to listen, and seeing Charlie a student and an individual. The old school for speech therapy could have chosen a time of day when they knew Charlie was more likely to be calm.

  2. ange says:

    Now that I homeschool, I am really noticing areas of growth just like this, areas where my boys are developing without an IEP goal tied to it. Who knew kids could go and make progress when no one was working on it as a goal 10 minutes a day. ๐Ÿ˜‰ While I understand the need of the IEP process, I have also been enlightened that some of our kids’ brightest moments and best goals reached are ones they set out to achieve themselves. And those, are of course, are immeasurable in more ways than one. I hope Charlie enjoyed his crumb cake…I LOVE picking the crumbs off of crumb cake. ๐Ÿ™‚

  3. Sometimes Charlie reminds me so much of Nat, particularly his speech patterns. It really made me smile to read his paragraph — also that you echo it. Every now and then when I repeat some of Nat’s self-talk, he will close his eyes and smile. And that’s my positive reinforcement right there!

  4. Linda says:

    Break a leg at 11:00!

  5. farmwifetwo says:

    I got a report card home that was obvious the child has been educated by the EA not the Teacher. I didn’t want this teacher, we were to have another but they changed things without telling us – surprise, surprise – at the last minute.
    Beyond the “Class participation – N”, there were other “tells”. For 3yrs the IEP has been used to teach him how to be part of the class… the fact this teacher has not read those, nor will work on previous skills, tells you up front what kind of teacher they are… not a good one obviously.
    So, as the note I sent back to the school reads… “Class participation will be returned to the IEP in Term 2″…
    Why can’t they read the previous ones???

  6. Niksmom says:

    There is much to smile about here, Kristina. And, yes, that type of negotiation/communication CAN be incorporated into an IEP goal if you would like it to be one. I bet if you put it out to some other parents they could help formulate one. All you really need to know is what is the underlying thing you want Charlie to get out of it. Then, how can it be facilitated and measured?
    I think all IEP’s should include goals about respectful reciprocal communication and learning to negotiate and compromise. It’s one of the fundamentals of participating in a relationship. ๐Ÿ™‚

  7. VAB says:

    Sounding good!
    My own experience with IEPs has been that having a third-party advocate there totally changes the dynamic. We had the local Developmental Disabilities Association with us and I understand that there are many different groups in different areas that can play this role. I think it is calming for everyone and it certainly nips any bullying attitude in the bud.

  8. Jill says:

    Charlie’s soliloquy reminds me of the way a former student of mine used to talk. He had speech, but most of it was repeating song lyrics or bits of conversation. B’s soliloquies ran something like this:
    “Ha ha! Bowzer! Bowzer! Sha-Na-Na! Duh-doo-do-doo-doo! (Bowzer was a member of the faux fifties band Sha-Na-Nah, which had a TV show in the early 80s) What Mister Mike Say? Mister Mike say look out! Ha ha! Mister Mike! Mister Mike! (Mister Mike was one of B’s teachers) Where Debbie go? Where Bonnie? No fingers! No fingers!” (B used to twiddle his fingers furiously in front of his eyes, laughing and talking to himself)
    In all, B was a pretty easy-going kid. He talked a lot but he couldn’t answer questions that weren’t very basic and although he has speech his conversations were mainly lists of things he liked or feared and repeated commands not to wiggle his fingers, a favorite stim. I really have no idea of what went on his his mind, other than these lists
    That’s why I like reading what Charlie has to say. it gives a little bit of insight about his thoughts.

  9. autismvox says:

    @Emma, Charlie’s been saying these lists on and off for about the past two years. I know every word for sure means something—what might seem “random” to any listener is never so for him. I guess the lists might be considered “non-contextual speech” by some (the old school staff, for one) but I really feel anything he says, and says repeatedly, has to have meaning, it’s just a matter of us trying to figure it out.
    Speech at his old school had to be at an appointed time as the therapist worked at a couple of schools…..as you can imagine, they were not very willing to change the time. (I also don’t think that Charlie had speech at the times that he was said to, plus he was supposed to do some “group speech therapy,” but when a friend visited to observe her old child, she noted that the other kids were doing speech and Charlie was not with them). (We only found out about all this by chance.)
    @Jill, B’s soliloquies really remind me of Charlie’s, plus I remember Sha-Na-Na…. I do think that there are other words, thoughts going on in Charlie’s head. (I think, that is.) His speech is limited due to physical issues to—it took him a long time until he could pronounce many sounds and syllables, and he’s still not always entirely clear in his articulation.

  10. Jenna says:

    This may be too simplistic, but what about this goal:
    Given two similar objects (or choices or anything else really), Charlie will be able to communicate his preferred choice in 4 out of 5 opportunities presented.
    I used the words “communicate his preferred choice” instead of “pick between the two” because in the example you gave, Charlie clearly thought about and then communicated to you, instead of just randomly choosing.
    This is fairly basic, but I imagine that if Charlie’s new team is as good as they sound, they should be able to expand on the goal. Please feel free to contact me if you have any other goal writing challenges. (I’m an IEP coordinator and spend my days writing IEPs and conducting meetings. This sort of goal writing challenge is actually my version of professional fun.)

  11. Jasmine says:

    I listened to the recorded version of your webcast tonight, and I’m so glad that I did. Thanks so much for the helpful tips and resources. We have an IEP re-eval meeting in just a few hours … speaking of which, I really should try to get some sleep!

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