10 July 2001
Why am I so tired? Did Damian have a bad night? Not at all. In fact, he went to bed an hour early. The culprit was good, old fashioned insomnia. I couldn’t shut down my brain. Three letters kept floating around in there, around and around and around like maniacal dancing Sesame Street characters. Three letters. An acronym for a looming appointment. I.E.P.
It stands for Individual Education Plan. Simple enough sounding. Benign, even. You set up a plan designed for your particular child’s special needs and the school has to implement whatever you say. The meeting itself is another matter. It signals Damian’s graduation from the cozy world of the state’s Early Intervention program into the harsh light of the grossly underfunded, woefully bureaucratized Unified School District where, or so everyone tells me, you have to fight for every service, every individual bit of attention your child needs.
Damian’s first IEP is scheduled for Thursday. The day after tomorrow. Last night is the first time it’s kept me up. I hope it’s the last, but I’m not counting on it.
We had the assessment a couple of weeks ago. It felt odd walking into a public school decades after I graduated and thousands of miles from my own alma mater. It looked the same as every other public school I’ve ever seen. Smelled the same too, that stale, faintly putrid odor of chemicals and sweat. But now I was bringing my three year old son to be tested, and the only way to fail the test was to act too normal.
We walked into the most topsy turvy library I’ve ever seen. Round tables crowded the floor space, books stacked haphazardly everywhere, with no sense of order. Four people sat at the back table waiting for us. Waiting to assess my little boy. Who stopped in the doorway and whined. He was ready to leave. I didn’t blame him. I was too. But we went inside, Mommy and Daddy and Damian. Went inside and answered lots of questions (us) and played with puzzles and blocks and answered very few questions indeed (Damian). He patted the kitty puzzle piece as if it were a real cat and when someone asked him if another piece was a fish, he put his hands together and "swam" them, mimicking a fish in the ocean. The teacher who coordinated the meeting told me later that he has quite a sense of humor. We walked out of there feeling like they appreciated him as a quirky responsive child. He charmed them. This, perversely, may not be a good thing. We want them to shower him with services, not to tell us, "He’s fine, not to worry."
Fortunately or unfortunately, that’s not all that likely. His issues certainly aren’t all encompassing, his delightful personality shines through like a beacon through just a light settling of fog, but they are nevertheless present. The occupational therapist saw many strengths, she thought he was almost up to age level in most ways, but she also saw many sensory issues, and that’s enough to warrant attention. The speech therapist said he seems to be around one year behind in expressive language (talking) and half a year behind in receptive language (listening comprehension). She was wrong about the latter, basing it on his faulty understanding of a test, but I didn’t correct her. I want her to think he’s behind. The child psychologist said he’s right on par with his peers, even a little ahead, in every way he tested -- including, interestingly enough, receptive language. Different tests, different answers. But the psych guy also said that yes, Damian’s sensitivities and behavior are consistent with a mild autism. It’ll be interesting to see his assessment report.
I’m not getting to the heart of what’s bothering me here, am I? It comes down to this: What do they think of him? What do they want to give him? If we come in and say "this is what he needs, and we know better than you," will they listen or are their minds made up before they walk into that conference room Thursday morning? If the psychologist thinks Damian’s a smart cookie, is he going to be willing to say "Okay, yes, he can stay in the non-public school you’ve got him in now, we will fund for that"? Or will he say "put him in an inclusion setting in the public school"? If the speech therapist thinks Damian’s language isn’t up to par but his social skills aren’t so bad, will she listen to our demand for one-on-one speech therapy twice a week or will she insist that group speech is the only way to go? Is there anything we can say to change their minds? If so, will we think of the right words in that moment? Will they be charmed enough by Damian to want to help us keep him on track or will they assume he’ll do just as well in some other program?
Part of the problem -- and this is specifically what kept me up last night -- is that we were supposed to visit a special ed classroom, the mixed class variety, to get a flavor of what he’d be in for if he joined the public system. I was armed with a list of things to look for, a list of things to ask the teachers. I was ready to write out a list of pros and cons, his current school vs. the public alternative. But I had to see the alternative first. Well, it seems we’re not going to get to do that this week. Bad timing: school vacations and the coordinating teacher going on summer hiatus, leaving us hanging in the balance. So how do we walk into the conference room and say "keep him where he is" when we have no way of saying "yes, it’s better, and I know that for a fact because of X, Y, and most especially Z"?
Everyone I talk to who’s been through the process says the same thing. Stick to your guns, be strong, tell them they only saw your child for two hours, what they say may be good for nine out of ten children but not for him, you know him better than anyone and you know what’s right. Everyone I’ve spoken with at the school district says this is not an adversarial process, everyone has the same goal: the welfare of the child, we have wonderful programs in place, don’t worry. Why do I believe the former more than the latter?
I feel like this is some kind of test for me. I need to stand up and be firm, no nonsense, and not accept second best. Because Dan will be there beside me jumping in when he sees me falter, I can do this. Because I know the names of, not one, but two excellent advocates who specialize in taking on the school district, I can do this. But most of all, because it’s my son and not myself, I can do this. I can do this for him. He needs us to be strong for him. So we will be.
Even if it means a few more sleepless nights between now and then.
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copyright 2001 Tamar