Sunday, July 27, 2014

Special Day, Regular Girl

Monday was Zoe's sixth birthday. As most parents in our situation know, birthdays (like Christmas) never allow themselves to be a pure celebration. You're happy that your child gets to celebrate, but you're frustrated that they can't celebrate like other kids. You rack your brain for an idea for the right gift for your own daughter or son, since you don't have the luxury of them leaving illustrated gift lists around as soon as the Target Christmas catalog hits the mailbox (in time for their July birthday). You're confident that you used up your remaining perfect gift idea on the last birthday, and the cynical side of you screams that you've had an entire year to learn something new and inspired about your own child -- and you fucked it up. Every idea you come up with has some therapeutic value, and you fear that you're skewing far too close to that side of the spectrum and too far away from simple fun. You wind up settling on babyish toys instead of something more age-appropriate, and you're forced to give those recommendations to generous friends and family members who ask. You assumed you'd always know what your kids want, but a kid like Zoe always has something unknowable about her.

This is the first year we have felt confident that everything about Zoe's birthday was something she chose or would have chosen if she'd given voice to it. Her year in kindergarten has brought a lot of firsts with it, and it has begun a transition from someone we babied too much to a big girl. She has moved away from constantly watching the Wiggles to enjoying the same movies and shows as her sister (Frozen, in particular, as has already been noted). This year, she picked everything. Her birthday dinner. The party location. And every choice was clear.

The first half of the day was spent in summer school, where her class had a party for her. We sent in cupcakes to share with the class. This has been her fourth year in summer school, and the teachers have had a party for her each of those years. We had to send the cupcakes in this time, because this was the first time in four years that we weren't invited to the party. For all we know, that was Zoe's idea, since she knows she's a big enough girl to have a good time without us.

She got home, and while she normally might have napped, the topic of going to the pool came up, and her excited giggles gave away the fact that she was mildly interested. So she took off with her mom and big sister to enjoy one of this summer's few days warm enough for swimming. Normally, an afternoon of swimming would be enough to tire her out, but we didn't have time for a nap after that either, because she had a friend from kindergarten coming over to visit.

This may sound like a small deal to some people, but this was the first friend Zoe has ever had come visit who was not the child of one of our friends or the younger sibling of one of Hannah's friends. The only reason we know this girl and her family is because she has been Zoe's friend in their general education kindergarten class since the start of the school year. The friend wasn't able to come to Zoe's party this weekend, so she wanted to visit and drop off a gift. The friend had picked the gift out herself -- a sampling of the same "Rainbow Magic Fairy" books that she'd been reading (and that Zoe's sister had plowed through last year). While I wasn't anxious to see another one of these books enter the house, this was different. The friend had picked out something that she enjoyed and wanted to share with Zoe. Her mom didn't ask us for gift ideas. The friend just made a brave, bold assumption that Zoe would love the same things she did. And she was right.

Finally, we had our family dinner and celebration. She got to open presents from us, which for once, felt like the right gifts for her age, for her interests, and for her ability to enjoy them. We gave her Frozen on DVD, along with Barbie dolls of Elsa and Anna. These seemed to be a safe bet upon purchase, but you never know. Her expression on seeing them was worth all the anxiety we'd subjected ourselves to with previous birthdays and Christmases. It's the look of a kid with agency over her own birthday, a kid who got exactly what she asked for, even if she couldn't come right out and say it.

Saturday, July 12, 2014

The Wonders of Eye-Gaze

We've written before how Zoe uses her Tobii eye-gaze computer to express herself, both at home and in school. Here, though, what she's really displaying is remarkable restraint and patience with her little brother, who can't keep out of the way, and obviously likes to state the obvious. If we were being generous, we'd say he was modelling for his sister, but he's really thinking of one person and their tummy, even though he'd just eaten. You can watch the video of the action here.

If you do want to read a compelling piece about augmentative communication we enjoyed this week, check out this post from another special needs parent.