It’s hard to believe, but it’s true. My sweet Janey is now 20 years old. Her birthday was in August. Even though obviously I knew it was coming, it still seemed and seems impossible.
I admit, it’s been a little bit tough in some ways to think of Janey as being 20. I guess it’s hard for any
Janey on her 20th birthday |
parent to ever believe they have an adult child, but of course with Janey it’s a little different. She is in many ways still like a toddler, and she always will be.
A few weeks ago, I had the absolutely wonderful privilege of getting to meet in person my grand-niece, who I consider a granddaughter. Olive is almost 3, and to say I fell in love with her is a severe understatement. My three kids were all so amazing in their own ways, but everyone says that being a grandparent is a whole new level, and they are right. Sitting and playing with her—Tony said he didn’t think he’d ever seen me happier.
I realized, after spending delightful time with Olive, that in some ways I’ve avoided being around children other than Janey much over the past many years. I don’t ever want to compare Janey to other kids, and I still don’t. But seeing how much Olive could talk, and how clued in she was to emotions, and people, and how quickly she could learn new things—it did highlight a little what Janey’s limitations are. Not that I didn’t know them—I did. But I saw that I had very much kept myself from thinking about them as much as I might have. And maybe now I’m ready to.
Janey being 20, being absolutely an adult, in some ways makes it easier. She is what she is. In the past 3 or 4 years, I don’t think she has changed much, or honestly, learned a great deal that is new. Her interests change a little here and there, but the core Janey is the same. Her talking used to come and go a lot more, but now, it’s steady, and at a bit lower level than at a lot of points. She makes requests, and that is mostly all. There is less echolalia, and next to no just commenting. I am very glad she can make requests, but boy, would it be something to get to hear her tell us what she is thinking, or what is bothering her when she cries, or why she is very excited the nights she stays up all night. And I don’t think we ever really will know those things.
As the years have progressed, sleep has emerged as the biggest challenge with Janey. In the last few years, it’s not just that she sometimes doesn’t seem to need to sleep at all, it’s that this cycles with periods where she sleeps a huge amount. She’ll go a few weeks sleeping up to sometimes 16 hours a day, and then have maybe a week of more typical sleep, and then go into a few weeks of very, very little sleep. Nothing external seems to cause either one. You might recall that in the past, we never gave Janey chocolate as that kept her awake, but that doesn’t seem to happen any more, which is good, as Janey loves chocolate!
Today—Janey and a donut! |
And when she sleeps so much, she doesn’t seem sick or depressed—just sleepy. The up all night times are tough, but not quite as tough as they used to be, as Janey seems to make less demands on us during the night. The sleepy times make it hard to do things with her—she slept through huge parts of the days Olive and her parents were here.
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