I’ll never forget those first couple days. I’d already started thinking that LP had Down syndrome but I hadn’t managed to utter the words. I thought, maybe, I’ll click my heels, wish really hard, and I’d be back from this alternate universe that seemed to be pulling me in. During the day, I managed to almost convince myself that I was, indeed, back in my sepia toned original life. Still had the same husband. Same kids. Baby, yup, same one I’d had a few days before I’d ever had the words “Down syndrome” enter my brain.
At night, things were different. In the dark, I’d hunch over my phone and follow whatever current my stream of consciousness took me. Try as I might, I just could not get a handle on what this life could be. I knew the dictionary definition of “developmental delay” or “low tone” but I simply could not grasp what that would look like. What would our lives be like?
This year for World Down Syndrome Day, I’m participating in a great project called A Day in the Life with Down Syndrome. I also asked the Taters what they thought about living with their brother. Sparrow, of course was unable to say much despite that I know she has many thoughts and feelings on the topic. I’ve translated for you what I think she would say. I may or may not have taken some liberties there.
I hope that, through these pictures and my children’s words, people will see how Down syndrome in our lives just exists. We talk about disability in our house very often. Not in a holy-moly-we-have-a-disabled-child-now-what kind of way. Rather, as just a part of us. Just like we talk about race, gender, class, and other groups that apply to our lives.
Yes, Down syndrome and disability are real forces in our lives, I cannot and would not deny that. But it isn’t that alternate universe that I thought it was. It is this universe. This universe that you and I, reader, share. Turns out that no heel clicking or wishing for home would have mattered, because I was already home, exactly where I was supposed to be.
My pictures aren’t limited to a single day, but since I’m unable to sustain any kind of project for an entire day (I blame the kids), you’ll have to accept my piecemeal offerings and trust that I’m showing what is typical for our day to day lives. The Taters’ reflections are at the end, enjoy.
OUR LIFE IN PICTURES…
LP’s morning starts off on the potty, then tooth brushing, getting dressed (no I never get frustrated or lose my temper at this stage, never), all pretty humdrum little kiddo stuff. First thing in the morning, LP is usually looking for Sparrow, he loves him some baby sister time. He might not always get the whole “gentle” thing, but he gets points for effort.
When Sparrow was born, LP was still really on the fence about learning ASL. He had a handful of signs, but it seemed like it took forever for them to “stick” and become permanent in his mind. The sign for “baby” however, he got lickety split. It was also the first sign he generalized to other babies and even cartoon pictures. Ever since, he’s been all about signing. Like I said, he loves babies.
Three days a week, LP goes to something called the “Infant Development Program” at a preschool. It has that fancy title because it is funded through our Early Intervention services, but I refer to it as simply LP’s preschool, because for all intents and purposes, that is what it is. They have circle time, play with the rest of the preschool classes (made up of children with and without disabilities), eat snack, go for walks, ya know. Preschool stuff.
Twice a month, a speech therapist comes to our house. This is the only therapy we do. If you know anything about Down syndrome and therapy, you’ll know that twice a month therapy is very low on the therapy scale. This has been a very conscious choice on my part; I feel very strongly that there is a balance between this kind of push for developmental progress (I am actually not sold on the idea that therapy always changes children’s developmental timelines, but that is another post) and the happiness of the child and his family. Our balance lies somewhere in the “minimal therapy” zone.
They play, read, sing. I think from LP’s perspective, our speech therapist is a lady who knows a lot of ASL and comes with a big bag of awesome toys. From my perspective, she’s a resource to talk to about his speech development.
There are forts. There are fights. There are uncontrollable giggle sessions.
Lately, there is A LOT of Slippery Fish being sung in our house. Sometimes I fall asleep thinking, “slippery fish, slippery fish, gulp, gulp, gulp…”
On the weekends, we play, we do projects, we veg out.
There are fun times with friends. Really, really, cute friends.
And days at the park.
LP shares a room with his sisters right now. We have family story time every night, then lights out. I know, you are just dying with jealousy at our exotic life, aren’t you?
WHAT DO THE TATERS SAY ABOUT THEIR BROTHER?
Mouse (6 1/2 years old):
I like playing with my brother, even though he destructos our games. Sometimes it is frustrating because he doesn’t always get our games. The thing I like most about him is that he is silly when he destructos. That’s funny because what I don’t like about him is also what I like about him. He gives really cozy hugs.
Chipmunk (4 years old):
I like showing my brother how to do stuff. When I show him, he does it back. It is hard to catch him when he runs away. He is like Rarity [from My Little Pony], except not, because Rarity can find special stuff but my brother can hide special stuff from other people.
Sparrow (4 months old):
Yes, that one, hm, what can I say. I think he’s suspicious. He throws toys at me and Mom is all brainwashed, she thinks he’s trying to “share” with me. And then there’s the thing where he’ll come over and start out holding my hand all gently, then that turns into a tap, tap, bang, bang, BAM! That sucks. But you know what is the worst, most suspicious part? Despite this constant threat of violence, I still smile at him every time he comes over, my face just does that and I can’t control it, I think I’ve also been brainwashed! I guess it is because it pleases me so much when he sings Slippery Fish to me, that stuff is fuuuunny. I pooped and need some more milk. Anyone? Hello?
And there you go, life in the KimchiLatkes household! xo
DSDN is partnering with my friend Meriah from A Little Moxie to create a year long project called A Day in the Life with Down Syndrome. If you have Down syndrome, or know someone with it, I hope you’ll consider participating. The website will continue to be available for submissions past World Down Syndrome Day.