Blog Hop #10: What I Will Fight For

When we become the parent of a child with special needs, we quickly learn something: Whether we like it or not, we have to be fighters. “You must learn to advocate for your child!” we’re told. And for some of us, that’s an uncomfortable position to be in. I’ve never considered myself a pushover, but I am generally a nonconfrontational person. I usually ascribe to the idea that you catch more flies with honey than vinegar, and I don’t typically like stirring the pot.

Well, but here I am with a child who needs an advocate. And I’m his best advocate, I’m told. So be it. Apparently I need to learn to be a fighter. There are probably a lot of things I’ll need to fight for over the years, but here’s the one weighing on my mind right now: full inclusion in a mainstream preschool.

Let me start back at the beginning (a very good place to start, for you Sound of Music fans!). Pretty much from the moment Sam was born and I started dipping my toes in the waters of the Down syndrome community, I heard the term “full inclusion” thrown around again and again. I went to a support group with three-week-old Sam, tiny and sleeping and gorgeous, and some parents there were talking about negotiating their son’s IEP and about full inclusion. Full inclusion, full inclusion, full inclusion! It must be full inclusion, I kept hearing. And good luck getting that, everyone said. The districts are notoriously unwilling to entertain the notion. Get ready for a fight. Your first three years, you spend in the warm cocoon of the Regional Center and Early Intervention, and then you’re thrust into the cold, harsh world of the school district. And you need to insist on full inclusion!

Well, I wasn’t so sure about this. You see, at the very same time as I had my newborn son and was learning about Down syndrome, my almost-four-year-old was being diagnosed with autism and being transferred into a special-day class through the school district. And although I was initially kind of devastated and pretty darn scared, it turned out that this mild/moderate special-day class was actually a pretty awesome little class. Six children and two teachers per class—awesome! The teachers were great, and Theo really began to blossom once he settled in. Academics were never an area of difficulty for him, so he was there to learn social skills, behavioral cues, and how to interact with his peers, as well as to develop his lagging fine-motor skills. But they did academics, too, of course. It was just like what I think of a typical preschool, only with an awesome student-to-teacher ratio. Oh, and okay…all of the kids had some sort of challenge. Autism, mostly, but there were other challenges too. But it was pretty cool, because the kids learned from each other and accepted each other. So honestly, I liked this class, and it didn’t bother me that my son was in special ed.

But in Theo’s case, the school’s whole goal was to get him ready to enter mainstream kindergarten. That was always the plan. And they succeeded—he started mainstream kindergarten last year, and though it wasn’t without challenges, he managed…and in fact largely did very well.

With Sam, I’ve been told, it will be different. Simply because he has an extra chromosome, the district’s goal will never be to mainstream him. He will enter in special ed, and he will stay in special ed. And the worst part of it is, our district apparently immediately places kids with Down syndrome in the “severely handicapped” class. In talking to a few teachers and people in the district when Sam was, oh, maybe 18 months old, I was told, “Well, of course he’ll come here, and he’ll be in the SH class.”

“What’s SH?” I asked.

“Severely handicapped. Mrs. D— teaches it. It’s where all the kids with Down syndrome go.”

“All? Why? Couldn’t he be in the mild/moderate class? Theo’s teacher was wonderful, and I’d love for him to have her,” I replied.

I was met with looks of apprehension. Mumbles of, “Well, I guess you could ask, but…” When I pressed for a better answer, I was finally told that the kids with DS go in the severely handicapped class, and that’s how it is. It’s difficult to change, they told me. My son was 18 months old—how on earth could the district make a judgment about his ability at that age? And without even meeting him? (I should say, no official mention was made of Sam specifically—I was simply told that “all kids with DS go to the severely handicapped class.” Which leads me to believe that they are making a placement judgment about kids with DS without even considering their individual abilities. Not okay. Not at all…)

So what is my gripe about the severely handicapped class? For one thing, Sam is far from severely handicapped. I think I’m pretty realistic about his abilities—I’m not one to insist that he’s some superstar in the Down syndrome community. Like any child (DS or not!), he has some awesome skills and some areas where he struggles. On the whole, I’d say his skills are probably about average.

But the bigger issue is language. Sam’s biggest area of delay, by far, is expressive language. He’s pretty good with receptive language (in other words, he understands a lot), but he doesn’t speak much. He signs a lot, but he doesn’t say more than a few words verbally. But he’s trying, and he’s capable of speech. He does not appear to have apraxia or something that would prevent him from speaking. He’s simply delayed in expressive language.

So what do you do with a delay? Practice, practice, practice! And spend time around peers who model the skill you need to work on! We talk to Sam all the time. We’re working on “sign to speech,” where we do communicate with him via sign language, but we’re encouraging him to transition to using word sounds along with his signs. We do speech therapy. We read books to him every day. We do everything we can to expose him to spoken language…and someday he’ll catch up. But you know what will help him the very most? Being around kids every day who are speaking! And in the severely handicapped class, there are traditionally a fair number of kids who don’t speak. Now tell me this: How will that help Sam? The teachers will talk to him, of course. And maybe some of the kids. But nowhere near as many as if he were in a typical classroom.

So why not push for the mild/moderate special-day class, you ask? Well, as Sam has gotten older, I’ve learned a couple of things. First is that if I agree to a special ed placement for him when he enters the school system, it will be very difficult to switch him into a mainstream program. I’m told it’s not like it was with Theo—the push isn’t to try to get kids with DS into mainstream classes, like it is to get kids with autism into mainstream.

Second, as I’ve watched Sam in his Early Intervention program, which is essentially like a pre-preschool, I’ve realized that I don’t think he needs special ed. Will he someday? Probably to some extent. I’m told that when analytical thinking becomes a prominent part of the curriculum (around third grade or so), kids with DS start to really struggle. But right now, as a 2 1/2-year-old racing toward age 3 (the age at which he is kicked out of Early Intervention and starts in the school system), I see no reason why he couldn’t handle typical mainstream preschool. In many ways, he’s a lot more prepared for it than Theo was, and even Theo managed to muddle through for a while. Sam loves things like circle time, where he is with a group and participating in some sort of group activity. He sits at a table and eats lunch with his peers (well, as much as Sam ever eats—finicky boy!), then cleans up his place and puts his dishrag and lunch box away. He knows to wash his hands before lunch and will climb up to the sink and do it virtually by himself. He participates in the crafts they do at school. He does pretend play in his class. He goes outdoors for recess and plays on the slides and climbs the little mountain and plays in the sandbox. He goes to the reading corner and looks at books by himself…or coerces a willing teacher into reading to him. He is starting to recognize colors and objects and patterns. He treats his classmates with kindness. In short, he can do everything a three-year-old needs to do in preschool.

Can he say his ABCs? No, but if he could talk, I bet he could learn them pretty quickly. Same with his numbers. Is he potty trained? Nope, but not every preschool requires that. Does he communicate? Absolutely. Sam makes his needs known very clearly, even without being able to speak.

So you tell me: Is there any reason why this child shouldn’t be able to try full inclusion in a mainstream preschool? I see none.

And I will fight for this. I will fight for it because he shouldn’t be pigeonholed simply because of a chromosome count. I will fight for it because the special ed system is kind of scary for nonverbal kids—abuse of kids who can’t speak to tell anyone about it happens with alarming frequency. (There was recently a horrifying case in the district next to ours, in fact.) And I will fight for it because Sam will learn immensely from his mainstream peers—and they will learn from him. They will learn that not everyone learns in the same way or develops at the same rate. They will learn kindness and joy, which Sam radiates. They will learn that there are more ways to communicate than simply by words. And they will learn that my little boy is just one heck of a fun kid and a good friend.

I’m in for a fight, I’m told. All this negativity I share in this post—it doesn’t come just from a paranoid, overprotective mom. I’ve talked to teachers in the district, aides in the district, people who work for the district. I’ve talked to other parents who have kids with DS who were in our district, but who moved out of the district because they fought and fought and got nowhere as they tried to advocate for their kids. I’ve talked to many other parents of kids with DS in other districts in California. I’ve even talked to one who is an attorney and who filled me in on the fact that state law says that Sam is entitled to a mainstream education if at all possible.

It’s possible, people. And I will make it happen. I will do it for this guy….

Don't underestimate me!
Don’t underestimate me!

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