I think the scissors incident was the moment when I stopped caring. In an otherwise relatively uneventful meeting, Sam’s IEP team brought up the scissors goal. In typical IEP-speak, it said something like this:
Samuel will use scissors to cut along a line in three out of five attempts.
“That goal isn’t realistic,” I said. “He can’t use scissors yet. His hands aren’t big enough.”
“Oh, that’s okay!” the team’s occupational therapist said breezily. “We have adaptive scissors for kids with special needs.”
“His hands aren’t big enough,” I repeated.
“The adaptive scissors have smaller loops,” the OT explained.
“I know,” I said. “But his hands are too small even for those. I’ve tried them.”
“That’s true,” said Sam’s early intervention teacher. “We have those adaptive scissors in our classroom, and he can’t use them—his hands are too small.”
“Well, we can just leave this goal on the IEP, and he can work on it,” the OT said.
“It seems silly, though, to have a goal that we know he can’t physically meet. It’s like setting him up for failure,” I argued, knowing full well that Down syndrome equals slower growth equals hands that will likely be too small for the damn scissors for quite some time.
I can’t even remember what we finally decided—whether we left the ridiculous scissors goal in his IEP or not. You know why I can’t remember? Because I never even look at those darn goals. I honestly couldn’t care less about them. In my mind, they’re arbitrary cut-and-paste goals for what a team of people who don’t know my son think he ought to be able to do in six months. And when I say cut-and-paste, I really mean cut-and-paste (no scissors pun intended). I can’t tell you how many stories I’ve heard where parents have the wrong child’s name in their son or daughter’s draft IEP because the goals were simply cut and pasted from the IEP of another child in their school district. Heaven knows we’ve gotten plenty of cut-and-paste misinformation in Sam’s reports over the last nearly four years.
So when I had Sam’s first preschool conference a few months after he started in his mainstream class, his teacher asked me whether there was anything I’d like her to work on. “I just want to see consistent progress,” I said. “I know I’m supposed to have you work on specific IEP goals, but I really don’t care about those. What I do care about is that he shows consistent progress upward. I want him to always be learning. I think he’ll learn the specifics when he’s ready to learn them; in the meantime, I just want to see consistent progress.”
So here we are eight months later, and that’s exactly what we’ve seen, and I’m happy with it. I have yet to see any artwork that involves cutting, but I have gotten turkeys and Frankenstein heads made out of tiny handprints pressed carefully on a sheet of paper and decorated accordingly. Handprints that still look too small for the damn scissors.
Down Syndrome Awareness Month is nearing its end, and I’ve done almost nothing for it. In years past I posted a fact a day or a picture a day or something to mark every single day in October with some sort of bit about Down syndrome. This year, on my personal blog and social media pages, I’ve done nothing.
I suppose the reason why is that my focus has shifted. Like the now-unimportant scissors goal, which probably would’ve seemed very important to me with my first child, Down syndrome feels very much secondary to me. Don’t get me wrong: I will always be an advocate. I owe it not only to my son, but to all of the other awesome people I know who are rockin’ that extra chromosome. But my advocacy looks different now. I work on a larger scale—I actually work for our local organization, and I work on behalf of all of the people in our region with Down syndrome, not just for the good of Sam.
And in my personal life, Down syndrome as it relates to Sam and our family has just become very secondary. It is still very present; there are glaring ways in which we’re reminded of it every day—some positive and some not so positive. But those reminders have dimmed in their importance, and most of the time life is just life.
When we first had Sam and got his diagnosis, it seemed very important to me to understand everything I could about Down syndrome. I needed to know what it was, how it worked, how it would affect our family. I don’t fault myself for that; I’m a very fact-driven person, and it was my way of making sense of a very confusing time for us.
And then I wanted to educate everyone around me. Because I knew virtually nothing about Down syndrome when Sam came along, and I know most of my family and friends were in the same boat. And I wanted them to understand it, just as I was trying to understand it. Because at that time, Sam was a tiny baby, living the life of eating, sleeping, pooping…repeat ad nauseum. And there were so many questions about what it all meant.
But Sam’s almost four now, and what I know of Sam seems to have much less to do with Down syndrome and much more to do with just Sam. Let me tell you what I know about Sam:
- He really, really loves Thomas the Train.
- He also really, really loves his big brother, and he will do most anything his brother encourages him to (for the good or the not so good).
- He hates having his hair washed.
- Even more than that, he hates going to the dentist. Will not open his mouth, period.
- He’s not potty trained at all, but he thinks maybe trying the litter box is a good idea.
- He has a fervent devotion to bacon, but he will also deign to eat carnitas, brisket, hot dogs, and occasionally ham. Yay for processed and salty meats!
- He’s not a huge fan of animals. As far as he’s concerned, they’re not very interesting and they’re out to steal his bacon.
- He’s an extremely finicky eater and will go on hunger strike before giving in.
- He doesn’t have many words yet, but he’s very communicative.
- He understands directional phrases—tell him to look under something, and he’ll do it right away.
- He likes books, but even more than that, he likes music.
- Circle time is his happy place. He will gladly sit for it for 30 minutes and counting, long after his preschool classmates have lost interest.
- He can sing the ABCs, even if no one but us can understand him.
- He can also count to ten, even if not many people can understand him.
- He has some wickedly good ball skills.
- He’s ridiculously tiny. At 45 months old, he has just now grown into 24-month clothing—but we have to use a Dapper Snapper to keep the pants up because they’re way too big.
- He’s a very neat eater (when he decides to actually eat) and is a master at using utensils.
- He has the best posture of anyone in our family—and of any kid I’ve ever seen.
- He’s very tidy about putting his shoes away, closing cupboard doors, and the like.
- He throws food on the floor if he doesn’t want it.
- He will ask for different TV shows but always come back to Thomas.
- He gets sick a little more easily than many kids.
- When he does get sick, his muscle tone gets floppier than usual, which makes for the best cuddles.
- His hands are still too small for the damn scissors.
- His smile is like nothing you’ve ever seen before. Brilliant…positively brilliant.
That whole long list of what I know about Sam, and do you notice something? Virtually none of it has anything to do with Down syndrome. Sure, floppy muscle tone, very small stature, lack of expressive language…but they are only a small part of that list. Most of that list is just Sam.
In other words, this meme created with his picture pretty much sums up my feelings as we bring Down Syndrome Awareness Month to a close.
And hey, if you’re new to Down syndrome and still in that space of wanting more information and support, heaven knows we’ve all been there. Thank goodness for organizations like Down Syndrome Diagnosis Network. The people I’ve met through there are amazing and continue to be a lifeline for me as we navigate life’s ups and downs. Click here to visit their site for some amazing resources and support.