Mar 20, 2016: World Down Syndrome Day

Happy World Down Syndrome Day! It’s actually tomorrow (3/21, signifying three copies of the 21st chromosome—get it? Clever, huh?!), but we celebrated today at a picnic in a local park that our DS org and the Lions’ Club puts on. It was a lot of fun and we got to see many friends before the sky opened up in a downpour right as we were sitting down on our blanket to eat lunch. The rain started quickly and heavily—rather unusual for here—so everyone ran for cover under a rain shelter. This kind of freaked Sam out, so we ended up leaving. He was fine with the rain, but the crowd under the shelter was a bit much for him. I’ve noticed he does that—he’s fine with crowds in open spaces, but he gets jittery when there are too many people in a closed space. Can’t say I blame him—I’m the same way, and so was Theo when he was younger. (He seems to have outgrown that.)

Anyway, if we had known it was only going to rain for ten minutes or so, we probably would’ve stayed. Ah well, hindsight is 20/20, and we at least had 90 minutes of fun before we had to flee!

This week actually had a lot of DS-related events…and not because of World Down Syndrome Day. It was just coincidence. Sam had his OT assessment at Kaiser on Tuesday, and he totally bombed it. I knew he would bomb it, but I didn’t know he’d bomb it quite that spectacularly! They do what appears to be a three-point scale of sorts for scoring—I think it’s something along the lines of “no skill,” “emerging skill,” and “mastered skill.” Sam got pretty much all “no skill” on nearly everything. Oh dear…

But the good thing about this is that it means they had no argument about granting him weekly occupational therapy. Now I just have to hope I don’t have to drive to kingdom come for it. When Theo had Kaiser-granted OT, we had to drive more than 60 minutes each way for the weekly appointment, and it was really wearing. I have a feeling the same will be true for Sam, because a friend whose child literally just got approved for OT through Kaiser was told she’ll have to drive way out into the east county for therapy appointments. Oy vey. The problem is, Kaiser doesn’t contract with many providers, so you have to drive a really long way for appointments, and even then they can be very hard to secure. I like Kaiser for medical care, but I’m not a fan of how they handle these third-party treatments—it can be a real pain to try to arrange services for a child.

Anyway, in case you’re curious as to why Sam bombed this assessment and why it doesn’t particularly bother me, it’s because I knew he would bomb it. He has always tested at below average for fine-motor skills, but he has never been offered services because he isn’t far enough below. Or at least, he wasn’t until now. And I could’ve pushed it or paid out of pocket, but we really wanted to focus on speech, and we didn’t want Sam’s entire life to be therapy, you know? For a long time, he had physical therapy and speech therapy, and when you combine that with five-day-a-week preschool, that seemed like plenty. I mean, he needs time to play and be a kid, too! (His preschool class is play-based, but still…we wanted him to have free, unstructured playtime—not all just school and therapy.) Some months ago, he graduated from PT, so we were down to just speech therapy (which he does while he’s at school—the therapist comes out every Thursday morning and pulls him out of class to work with him) and preschool. That was nice and mellow and seemed like plenty! But in the last couple of months I’ve started to notice more of a gap in his fine-motor skills…and, more importantly, his frustration when he can’t do something fine-motor-related. So I figured it was time to start pushing for some OT. And so we have…and the dismal scores on the assessment were not a surprise and actually were not even unwelcome, as it means he qualifies for therapy now!

In addition to World Down Syndrome Day parties and bombed assessments, we also drove up past Sacramento one day for Sam to participate in an awareness project. In a rather strange series of connections, I became aware of a student in social work at Sacramento State (Chris’s and my alma mater for our grad programs) who got a grant to do a project on labeling—how being labeled affects the people who have those labels. I volunteered Sam to be part of the project because I have rather strong feelings on the subject of labeling, and I like to help out on awareness projects when they’re meaningful to me. Plus, the photographer for the project was someone we know well—Theo’s former backfloat teacher!

Basically, the project is going to be distributed to teachers at Sacramento State to be used in an educational setting, and it’s a video of the stories of people who are labeled, and how that affects them—positively and negatively. In Sam’s case, of course, his label (choose your label—we went with developmental disability, but Down syndrome is also considered an intellectual disability, and then of course Down syndrome itself is a label!) enables him to qualify for services that he couldn’t otherwise get—speech therapy, occupational therapy, and physical therapy. It also qualifies him for lifelong support from the Regional Center, which is good because whether we like it or not, he will always need some level of support. Hopefully minimal…but some. So in that sense, his label is helpful.

But there are so many negatives to labeling, too. People who don’t know Sam, of course, see Down syndrome. Once they get to know him, I think most people see Sam for Sam. But on first glance, when someone doesn’t know him, the first thing they undoubtedly think is, “Oh, a boy with Down syndrome.” And that’s kind of a negative. Because it’s true that he has Down syndrome, but obviously we don’t really like that being the first thing people think of him.

And expectations! We’ve already experienced situations where people have lower expectations for Sam than they should, just because he has that label. And that does nothing but hold Sam back, so we’re not fans of it from that standpoint.

And limits! People with intellectual disabilities have limits set on them simply because of their label, which is disappointing. With Sam, a lot of people think, “Oh, and he can maybe get a job at the supermarket someday!” Which is true and may in fact be what he decides to do…but it’s not all that he can do. Many people don’t even realize that there are postsecondary programs on college campuses for students with intellectual and developmental disabilities. No one would ever walk up to us and announce that Theo could perhaps work in the supermarket someday—but they don’t hesitate to think that about Sam. It’s frustrating to see people set limits on Sam just because he happens to have an intellectual disability, when they would never dream of doing that to my typical-seeming child!

Of course I don’t mean people who know Sam or who know other people with intellectual/developmental disabilities—those of you who know us are not inclined to limit Sam! But I just mean the general public. A label like Sam’s brings thoughts of a ceiling that he can’t break past, and it brings limited expectations. So for those reason, I’m not a fan of labels.

Unfortunately, I don’t think I’ll be able to share the finished project with you. The social worker who is doing the project had people sign releases for educational distribution only, so I don’t think I’ll be able to share it on here. But hopefully I can at least share the pictures of Sam with you! Everyone else participating in the project was a teen or adult, and they were all really nice. Sam took particularly to a few of them. There were two men with mental illness, a transgender teen, a black teen, a lesbian, and a survivor of sexual abuse. I am interested to see the final project, because I suspect these people will have a lot to say about how their label affects them. Sam can’t really speak for himself, so I have to speak for him—but hopefully I will do him justice! And I’m glad for the chance to share with people that his label does not need to limit him.

On Saturday, we headed back up to Sacramento to see Grandma Diane, Auntie Lynnie, and family. Cousin Noelle is turning 21 this week, so we all had pizza and ice cream cake! I rarely get to see all of my nieces and my nephew at one time (only one still lives at home), so it was a real treat to get to see them all together. And the boys were tired afterwards—wait until you see the picture of them dead asleep in the car in this week’s gallery!

Next week will be a busy one as I work on writing a book about Fab Labs (click here to read about what a Fab Lab is—I have to admit that I had to look it up myself!). Theo has Spring Break the following week, so I’m hoping to get most of the book written this coming week. I just finished writing my first semi-creative one—a retelling of the Legend of Sleepy Hollow for a third-grade audience. That one was a lot of fun, because I love that story and I got to be kind of creative with it. They’re assigning an illustrator to it—this will be my first illustrated book! I’m excited to see the proofs when they’re ready (months and months in the future).

Oh, and in addition to World Down Syndrome Day, happy first day of spring!

Leave a Reply

Your email address will not be published. Required fields are marked *