We had Finn’s IFSP meeting this morning with our Regional Center service coordinator. Although we dropped out of all therapies for Finn a while back, we agreed to keep Finn’s file open with Regional Center for case management, so they are still required to do an updated IFSP to assess where he’s at, determine what goals he’s met since the last IFSP, and set new goals.
Finn is two and a half now, so this was his final IFSP, and now begins the process of transitioning him to the responsibility of the school district. Services from and responsibility of the Regional Center ends promptly the day before he turns three, and the school district takes over on his third birthday.
I’ve been absolutely dreading this IFSP meeting. None of them have ever been especially positive or encouraging experiences – probably in large part because of my attitude towards Early Intervention as a whole. So there was that, but also just the knowing that this is it, this is the point at which we begin transition, and I feel like my heart is breaking.
Why? Why does this all hurt so much? Why does it cause such knots in my stomach and tears in my eyes? I’ve turned it over and over in my head, trying to get to the bottom of it, of my absolute angst over Early Intervention and what is coming up: Special Education.
Finn is my baby. He’s my last baby in the nest, and I admit that I am having a hard time with the idea of letting go. Having and taking care of babies has been my entire life for the last 8+ solid years, and the thought of my last one leaving my side – even if it’s just part-time preschool . . . well, it just undoes me. Yeah, I’m one of those sickening moms who is probably going to develop a serious drinking problem and a reliance on heavy-duty antidepressants when all of her kids are grown and gone. I mean, they bug the shit out of me, but they’re my whole life, you know? So word to the wise: this is what happens when you immerse yourself so completely in motherhood that it becomes your entire identity.
Anyway, so there’s that. And I have no doubt that I would be feeling this way with my last baby regardless of chromosomal makeup. But then there is the element of Finn’s special chromosomal makeup. Not only is he my baby, he really is just a baby. He’s two and a half, but really more like your typical . . . one-year-old? Eighteen-month old? That’s still a baby in my book. And I never dreamed of sending any of my other kids off to preschool that young (not that there’s anything wrong with it, it’s just not anything I’ve ever wanted for my kids). But there is now going to be this big push to send him to developmental preschool . . . as soon as he turns three! And I read all these other blogs by other parents of children with Down syndrome, and they’re all doing it, or have done it, sending their three-year-olds to preschool, and it’s so fun! and it’s so exciting! and they get to take the bus! and isn’t that exciting?!?! And I just feel like throwing up from anxiety. I don’t want to send my three-year-old (who’s more like an eighteen-month-old) to preschool, and I certainly don’t want to stick him on a bus. Why would I? None of my other kids have taken the bus to school.
I hate that Finn’s whole life is supposed to follow this pre-mapped prescription.
From birth to three he will receive x, y, and z therapies. Promptly at age three, he will begin attending developmental preschool. Later, he may go to an inclusive, typical grade school, with an aide; however, if the powers-that-be determine that he can’t hack typical school, he’ll be warehoused in special education classrooms with all the other retards for the rest of his school career. Maybe some day he’ll have a menial job and live in a group home. And everyone will live happily ever after! The end.
I feel like Finn has never been completely mine from the time he was born. From the time he was just a few hours old and we had to take him to the ER and hand him over and watch them stick him full of tubes and hook him up to machines, it’s been like he doesn’t fully belong to us. They have always had part “ownership” of him – first the NICU who had him for the first two weeks of his life and made almost every decision concerning his welfare and slapped our wrists when we tried to step in; then the social worker who told us we had to enroll him in Early Intervention if we wanted what was best for him; then Regional Center and its team of therapists who all have had their own ideas of how Finn should be managed; and now it will be the school district. I feel like I’m being expected to relinquish his childhood to strangers who have no idea what it’s like to love this little boy so much that it feels like it could demolish me. What do they know? They don’t know anything about Finn or me or our family. Nothing. And they don’t care. Finn is just another special needs kid, just another Downs kid, a file, a number, a set of problems to deal with, a set of goals to reach.
And yet . . . Finn is in the midst of a frustrating stage right now. He yells and screams, a lot. For long periods of time. I don’t know if there is a physical cause (he might be cutting molars), or if it’s frustration on his part because he can’t communicate. See, I don’t know, because he can’t communicate! He throws things. He’s suddenly refusing table foods and is back largely on purees (this could be another sign of teething, no?). He’s made a lot of strides . . . but it’s very, very slow going. And part of me wonders – of course I wonder! – maybe being in a more intensely therapeutic setting would give him just the push he needs?
Still, it feels like throwing him to the wolves.
A few weeks ago I was at the store and there happened to be a small group of adults with various disabilities there. There was a woman in charge, and it was clear that this was some sort of day program and they were on some sort of outing. The woman in charge was not nice. I heard her admonish them repeatedly, as if they were wayward brats. She said to one young woman in the group, “It’s not appropriate to ask people their names! I’ve told you that! That’s the third inappropriate thing you’ve done today!” My blood was boiling. I had Finn with me in a stroller, and I began following them from a distance. I wanted to shout at the woman, “See my son here? He’s one of them! You can’t treat them like that!”
But see, that’s the thing. I’m sure it gets frustrating and tiring for the people in charge of these “groups.” And I’m sure they’re not always nice. And I’m supposed to entrust my son to people I don’t know, on whom he doesn’t even have the ability to tattle on if they mistreat him?
Probably I’m being a little melodramatic. But this feels HUGE to me. I’m not ready. I don’t know if Finn is ready. All I know is that I want to protect him from all the bad in the world.
So back to our IFSP meeting this morning. Since Finn has no therapists, our service coordinator did a questionnaire assessment. She said she’ll plug the answers into this nifty computer program at her office and it will come up with scores for where Finn’s at cognitively and developmentally. Nice. Whatever. So she’ll be setting up a meeting that will take place in April between her, us, and the school district psychologist to begin putting together Finn’s first IEP. Blech.
I know nobody’s saying he has to start preschool tomorrow – or really even as soon as he turns three (although, clearly, there is an expectation that we will do that if we have his best interests at heart). And I know that it’s probably silly to sit here and wring my hands before I even know what they’re going to suggest or offer us, or before we have an opportunity to physically go check out whatever they will offer us. But still, I’m just really having a tough time with this.