Wednesday, April 28, 2010

Don't forget the siblings

Came across a great article posted on the Sibling Support Project website, "the only national effort dedicated to the interests of over six million brothers and sisters of people with special health, mental health, and developmental needs." I found it very timely as we've been thinking about this stuff anyway, which prompted our visit to the child psychologist a few weeks ago. I share it here so that other parents of kids with special needs, who also have other children, can check it out.

Friday, April 23, 2010

A little bit "off"

As time goes on, I see patterns of behavior in Hannah that indicate when "something's up" with her. I don't always know what it is, which frustrates me, but I can tell when she's off.

So in the past few days, here are the things I'm noticing that are a little different for her:

-She's gritting her teeth together a lot
-She's eating A TON
-When she naps, she wakes up hysterical as if from a bad dream, and then I go up and settle her and she falls back asleep again (normally she just sleeps through until she's ready to get up, and wakes up either whining a little or calling to me to come get her)
-She's more floppy
-She's more whiny
-She's more hesitant to stretch her limits (i.e. she keeps saying she's scared to reach out for the grab bar and step up onto the stool in the bathroom, something she did easily and fearlessly up until about a week ago)

I'm thinking it might be another growth spurt, and maybe those crying spells when she sleeps are muscle spasms. Not sure though. She is also going through the longest stretch ever between botox treatments, because we have a consult about selective dorsal rhizotomy on Monday and they wanted to see her when it was totally out of her system.

It's hard to see her go through this, and I wish I could do more to help her. But what I CAN do is go easy on her a bit, let her be a little more lazy if she wants to be, as she is not afraid to push herself when she's feeling good so if she needs a break, she deserves it.

Tuesday, April 13, 2010

Why adaptive programs rock

This winter, Hannah and Isabelle participated in an "adaptive" tumbling class at a gymnastics school near us, where Isabelle took a class last summer. While looking at ways to build Hannah's strength and keep her active this winter, I learned of this new program starting up and jumped at the chance to sign on, especially since it was directed at her age group and they welcomed "typically developing" siblings or buddies.

The class was ideal on so many levels. First of all, it was only my girls and two boys their age who are on the autism spectrum so it was a very small group. This really benefited Hannah, who can get so easily distracted in big, noisy groups and would not have gotten as much out of using all of the equipment and facilities in that setting. Also, the instructor is a young, energetic woman who seemed to intuitively know how to relate to each of the kids despite their very different personalities and needs. She didn't try to keep to a specific routine (different from the class Isabelle took over the summer) and while she offered up SOME structure, she also let the kids take the lead a great deal. This slower pace made it easier for Hannah to keep up with everyone and it was also great for me that the instructor was not afraid to jump right in and facilitate Hannah's participation, something I'm usually doing when we get involved in "mainstream" programs.

The full benefits of participating in an adaptive program like this didn't fully sink in until almost the last week. But one week, when the regular teacher was out sick, a substitute taught the class who was new to our group as well as to the school itself. It became clear very early on that she was not given a heads-up on how loose and low-key our class was, as she kept trying to insert structure into the routine that the 4 kids, their helpers and the teacher had created over the previous weeks. And it wasn't working out at all. I sort of felt bad for her as she struggled to get all of the kids to go through each station she'd set up: Hannah was just kind of standing around, the two boys on the spectrum were running in different directions, and Isabelle was methodically following the teacher's lead. It was a little crazy. At one point, the sub had everyone go upstairs to the stretching area (which we did every week) and she started the routine before Hannah and I could get there with her walker. That's when I spoke up and said, "Could you please wait a minute for us to get there?!" She clearly missed the point of this very special class and it brought home to me the fact that I was so comfortable with the way things were run with the regular teacher and what a relief it was to be in such a setting, where there were no outside expectations or rushing around trying to get Hannah to keep up or worries about what people would think of her. It was so nice to just relax and let Hannah enjoy herself.

I think it is so important for Hannah, and all kiddos with disabilities, to be a part of their community and participate in activities with other typically developing kids their age. But sometimes, it's really nice to be involved in something with other kids like Hannah. And it's great that siblings are welcome because Isabelle is getting just as much out of it as her sister.

Next on board for this spring/early summer: an adaptive dance/theater class!