It can be challenging to work with Alice when the circumstances are 2:1 (kids:adults). Alice needs more attention and at times demands more attention, whether or not she needs it.
Alice was having some difficulty being constructive outside with E and Stuart, so she was sent inside. Instead of making things boring for her, I pulled out an emergency box of gluten-free chocolate chip cookie mix which we did together. Alice did a good job with the disher, scooping up the dough and putting it on the cookie sheets. I don't always have a co-op plan in my back pocket, ready to go, but as plans go this is not a bad one.
One of the big goals when you have a child with Down syndrome is independence. To get there, you have to build a lot of scaffolding and slowly tear it down. At some point you get to stand back and watch and see if your child is ready to do some things totally on his/her own. Like this.
This is a sick girl. I know it doesn't fully look like it, but she is. About 10 minutes later, she puked up her entire dinner onto her plate. It has progressed like a rocket and she went to went with a nasty, croupy cough.
Ah croup. This has been an issue with her since she was teeny tiny and we've had to make countless trips to the emergency room for albuterol. One of those trips involved me calling 911 to get the ER ready for her when I came in as her lips and finger tips were getting blue and I wanted no delays on the way in. The croup was interfering with her sleeping, but it wasn't bad enough to go in, mostly because we preemptively treat her with mucinex and we run a humidifier in her room. That seems to at least stave off the worst of the symptoms. Oh right, and we had her tonsils and adenoids out, which makes more room in her throat. Still, croup. Poor Alice.
And this is not uncommon with Down syndrome. Plus they tend to have have tiny ear canals which means that when they're sick the ear canals don't easily drain and then they get infected.
One of the early books I read on raising a child with Down syndrome had a chapter about various health aspects concomitant to Down syndrome. One stood out to me, "Teeth: may come in late or in unusual order." This was absolutely the case for Alice. In fact at one point when she was close to 3 she had an x-ray taken of her neck to check alignment. When the doctor put it up, I asked him to keep it up for a sec while I looked it over. I was counting teeth because we hadn't seen any yet.
Coincidentally, as we were finishing up dinner, Alice exclaimed, "ow, ow, OW!" and pulled out a tooth. A baby tooth, the second lower premolar. I had a sigh of relief because I still have both of my baby tooth second lower premolars, a fact of which my dentists is content to remind me every six months. Go figure.
After dinner, when Alice was reminded of how awful I feel (I really am not enjoying this cold, most everything I did had to come with planned rest breaks), she got into a serious "I love you, man" kind of mode. Very sweet, but it came right on the heels of our nightly conversation about how she needs to take a shower because she's a teenager. Win some, lose some.
Alice can be pretty ornery with me. A lot of it is that, well, I'm her parent and I often have to be a wet blanket so she's not too happy about the corrections. I'm under the weather tonight and conked out early. Before bed, Alice checked in with me. She gave me a kiss on the cheek then took on a look of serious expertise. "Daddy." "Yes, Alice." "You need rest, fresh air and a drink." "Good idea, Alice."
Low muscle tone is part and parcel with Down syndrome. One thing that you might notice is a blank look on the face of someone who has Down syndrome. That's the low muscle tone at play. Alice has those moments too, but let me tell you that she is just a big bag of personality.
And I think this picture shows that pretty well. Today I met her when she got off her bus and most times she says, "Daddy? Where's mommy?" Today, I earned a "Daddy! You my man!" I don't know exactly what I did to earn that, but I take what I can get.
There are a lot of big reasons that inclusion, having a child with special needs in the general classroom, is a very good thing. Here's a little reason:
Having the annual bog-standard photo just like the rest of the kids.
Alice and I have been having a certain amount of friction with each other lately. She's a teen. She wants to be independent, but her decisions don't (yet) have the wisdom of age or experience and unfortunately, she does the same egregious things routinely so the feedback loop is not working. I was looking for a picture of Alice being ticked off, but apparently I take precious few of those, so hooray?
Instead, here's a picture of me and Alice on the Amelia Park ice rink. I take her here routinely because they have some nice sled hockey sleds that you can borrow to make the ice accessible and because I enjoy skating. I'm a terrible skater, but I still enjoy it and so does Alice.
So do lots of things together and keep doing the things that bring both of you joy.
The first two are from a very recent trip to Philadelphia. The last is from a trip last year to New Orleans. The common thread in all three is that we didn't solicit these photos. Each of the actors/performers did so on their own. Coincidence? Down syndrome super power? I don't know.