Questions answered

I got a couple good questions on my Down syndrome awareness post, and today I’ll be answering them!

Laura asked how we explain Daniel’s Down syndrome to other kids. The cop-out answer is: mostly we haven’t had to. Because Daniel is still so young, many other kids don’t recognize that there’s anything different about him. Our kids have known since he was born that he has Down syndrome, but I’m not sure that even now they really know what that MEANS. Kalena recently asked me, “What is Down syndrome?” which is an easy question to answer- Down syndrome is a third copy of the 21st chromosome. I gave her a quick little biology lesson, hopefully simple enough that she understood. Then we talked about how having Down syndrome affects Daniel. My short answer here is that it makes things harder for him to do. We talked about the fact that Daniel has to work harder to learn things that come easily to other kids. I didn’t get into the medical aspects, because I’m pretty sure a 7 year old doesn’t care that people with Down syndrome are more likely to have hypothyroidism, or diabetes. Also pretty sure she doesn’t know what those are. Her next question was considerably harder to answer. “Is Down syndrome good? Or bad?” I said something super eloquent like, “Well…both.” Then we talked a lot about how Down syndrome makes Daniel who he is. We talked about how great it is to see Daniel learn new things, and be excited, and how enthusiastic he gets about things he likes. We talked about how much he loves people and how happiness is contagious. And we also talked about how frustrating it can be that Daniel bites or throws things when he’s angry. We talked about how it’s hard sometimes because he takes a long time to learn and follow the rules. And we talked about the fact that many people out there do think of Down syndrome as bad. At the end I asked her what SHE thought, and she said, “Well, I think some things are good and some things are bad.” Which pretty much sums up life in general. (She then wrote about having a brother with Down syndrome for a school assignment. Because, she said, she wanted other people to know about Down syndrome.)

Then Jess asked about Daniel’s therapies! And she may be sorry she asked because I LOVE talking about this stuff. (I try not to bore people, but yeah.) So! Yes he has aged out of Early Intervention. EI ends at age 3, (pretty sure that’s true across the US) at which point kids are reevaluated to see if they qualify for continued services. If they do (and in many states Down syndrome means automatic qualification) services start through the school district. The district we’re in has a large preschool program at one main building, and then a couple of elementary schools have programs at the school buildings. I think generally if your home school has a program that’s where they will send you, but I’m not totally sure because I know other kids in our neighborhood who go to the other building. Sooooo… Anyway. Our home school DOES have a program and that’s where Daniel goes. I’m super glad it worked out this way because it means all the kids are at one school, and Daniel will be familiar with the school by kindergarten (is already familiar, actually- would NOT let us walk past his classroom on back to school night. HAD TO GO IN!) and that the staff will get to know Daniel right from the start. Side note- the big kids tell me every time they see Daniel at school. Preschool and kindergarten have the same recess time, so Will often sees him on the playground, and Kalena’s 2nd grade classroom happens to be next door to Daniel’s preschool room, so sometimes she sees him in the hall.

Transitioning Daniel to preschool was great. We met with our EI caseworker person, plus his primary therapist (his PT, who I still miss) and a district liaison person to set up goals/talk about what kind of support we thought he’d need in preschool. Then I met with the liaison and his preschool teacher for a little meet & greet (with Daniel) in the preschool classroom. Daniel thought that was awesome and was sure we didn’t need to leave. Those meetings happened before he started going to school (which actually happened a couple weeks before he turned 3.) Then, shortly after he turned 3 I met with his preschool team: teacher, physical therapist, occupational therapist, and speech therapist, for his first IEP. They have kids start coming a couple weeks before they turn 3, so that at the first IEP they’ve had a chance to observe, which makes picking goals a lot easier. I didn’t know what to expect from his IEP, but it’s essentially the same as his IFSP meetings when he was in early intervention. (IEP= Individualized Education Plan and IFSP= Individualized Family Services Plan.) He currently works with each therapist for 40 min a week (I think. Pretty sure that’s right.) Each therapist is there on a different day. The rest of his preschool time is spent with the other kids in his class, half of whom are other special needs and half of whom are typical kids or “peer models.” I’m a fan of the mixed group. We definitely want Daniel to be mainstreamed as much as possible, so to see it start while he’s still in preschool is wonderful.

Right now we’re not doing other therapies outside of school. We work on his goals at home, of course, but he’s making good progress and at this point I don’t think additional therapy would increase that progress any. We may do some in the future, though. There are a couple places here I’ve heard good things about (particularly for kids with Down syndrome) and if at some point we feel like the therapies he’s getting at school aren’t enough we will definitely look into those.

Oh! Also, he qualifies for bussing to/from school as part of his services and I’m not sure which he likes more- school, or BUS RIDE! He loves the bus. The preschool bus has car seats, so we put him on and get him buckled in and every day before we’re finished buckling him he’s saying, “Bye! Bye!” and waving in our face like, “Get off my bus I’ve got places to go!” So yeah. It’s excellent.

4 thoughts on “Questions answered

  1. Oh, this is so great! I love the idea of a mixed classroom–Annika is actually in something similar and we’ve been THRILLED with it. I’m so glad you guys have such a good setup. Also, oooof with Kalena asking if it’s good or bad. What a tough question, MAN. But I think she nailed it with her response–it’s not clear-cut, just like pretty much everything else.

    • I’d love to put Lydia in this program in a couple years! Also, small class- I think they have 11 kids right now, which I like. And yeah, whoa with the tough questions. I thought we had a couple more years before those started coming up!

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