Our 4-year-old son: what the heck are we going to do with him?
This question comes from many places and goes to many possibilities. Right now I’m just worried about September. My wife and I are inveterate planners, so we don’t like this level of flux. Flux capacitor…fluxing? Get back, Marty McFly.
Last Wednesday, the Berkeley Unified School District offered us full-time coverage for Dar in an “inclusion” (mainstreamed) classroom – meaning mostly stocked with neurotypical bambinos. He would have an aide with him at all times – perhaps not the same person at all times, but someone would tag-team in if an aide needed to tag-team out. We asked if the aide would help with toileting and feeding and other needs, and we were assured that the aide would. We asked if Dar would be expected to keep up with the other kids and the ABC123 lessons, and we were assured that he wouldn’t. Instead, he would have a very personalized program designed less for rote knowledge and more for independent living.
We are trying to picture it. 19 typical kids and little Dar with his aide over to one side at his individualized work station. I wonder, does anyone reading this think “I wish when my kid was in kindergarten s/he got that kind of attention!” Maybe there’s an argument to be made to that effect. Maybe we should be grateful we are being offered full and not part-time coverage. Yeah, sometimes it’s hard to see the silver lining of “Yay, he qualifies!” next to the cloud of “Oh, wow, he qualifies.”
Among other things, we came to last week’s meeting ready to petition the district to keep Dar in special-needs preschool for another year. Several logistical oddities supported this. For one thing, because Dar was born in October 2009, they want him in Transitional Kindergarten (TK) next year, and then Kindergarten the year after that. Berkeley isn’t offering any Special-Day Class (to get in, your kid needs an IEP, basically meaning s/he’s disabled) for TK or Kindergarten for the foreseeable future. The current one starts in 1st grade – and even that isn’t promised, because the district may shut it down if they don’t get enough qualifying kids. His current SDC only has 5 students, 1 teacher, and 2 aides, meaning a 5-to-3 ratio. Can’t do much better, right?
Well…not according to the BUSD. This is where we step into a zone scientists fear – the experiment without the control. Dar has regressed in the 16 months since he started with the BUSD. He’s lost many words he had. Of the 14 goals they set for him to meet 12 months later, he met…2 of them. That’s a pretty failing report card. He barely threw tantrums before he got to school. Now, they happen every day, like summer thunderstorms that come with no rhyme or reason. Was he influenced by kids in his class? Or perhaps by competition from his brother? Or was some regression inevitable after he left intense 1-to-1 ABA therapy 25 hours a week?
Maybe the preschool has done as much as they can. Maybe. But that doesn’t mean that full inclusion is the only option.
If we stay in our SELPA, there may be a special-day class in Alameda. There are options outside our SELPA, perhaps as close as Oakland. And there are “non public schools,” not always being the same thing as private schools, and which the BUSD will sometimes help with, depending on what we all determine Dar’s needs are. Or as the BUSD rep said, “we could send Dar to China if that’s what was best for him.” Lights popped off in my panicky head: if we’re leaving the BUSD, how soon does another district need to know? How much lead time do they need? The BUSD rep said that they have to address their own needs first, and couldn’t open up to someone like us until May at the earliest. Hmm.
Maybe we need an advocate. Maybe we need a lawyer. Maybe…God knows. If you looked at the Dar situation from the way a cold-eyed investor looks at emerging markets, wondering about returns and benefits over the next 20 years, I’m not really sure where you’d put your money. Probably you’d stay away, worried about all the volatility. If wifey and I knew that a SDC in Oakland was best for him, heck, we’d move to Oakland. Sell the house in Berkeley, or perhaps rent it and rent a place in Oakland. We’d do it in a heartbeat. If we knew that any specific non-public school is specifically good at helping people with Dar’s specific kind of autistic condition, we’d pay for the whole she-bang ourselves and worry about getting the BUSD to reimburse us later (or never). But our money isn’t unending, and we do have to reckon with the long future, including when we’re dead. How much must we save for the institutions where he may need to live? How much extra to bribe the low-level employees to try to assure us that they aren’t taking advantage of a patient who can’t say anything to rat them out? Or should we move now to Europe (we both have ties, passports) where there will actually be a safety net for him in 20 years?
I try to relate to my friends about this. On some level, we’re all raising kids into an uncertain future. None of us take advantage of every single opportunity. By the time your kid is 13, will you really have tried ten sports, ten instruments, ten languages, ten “craft” activities with him/her? Enough that you can see if your kid really takes to each one? Probably not. On some level, we’re all wondering if we’re doing enough. But I gotta say, when you can’t ask your kid what he wants, even between juice and crackers, it feels like it’s on another level. It feels like you may be squandering any chance he ever has at a normal life. That’s not fun to live with.
I know what you’re thinking. Focus on today. Sure. We do. And the question for today is what is really going to help him? Of the many options available to us, which one is going to lead to his opening up, to his telling us what he wants, ever? No way to really know.
I can’t end this with anything pithy. I can only tell you that when I met wifey, the future seemed wonderful and boundless. Maybe we were bound to be bound.