Use Your Words, Part One

Last week was the President's Day holiday winter week-off for school children, and we took the week off, heading out to California to see my parents and visit Legoland.

In the past Sweet M has had a tough time visiting with her grandparents. There are a lot of rules that she doesn't understand and that can change from time to time. There are grown-ups who would be thrilled if she could engage in small talk. And an aunt with a dog — a German shepherd — that is pretty scary for M. And there are uncles with beards.

Top that off with often a good bit of shopping — one of her least favorite activities — and meals with foods that have odors that make her upset, and we've found that visiting California hasn't really had a lot of appeal for Sweet M. Visits have tended to be dysregulating for her (and thus for me too), so we've kept them to a minimum over the past couple of years.

There is also the matter that the ambiguity of Sweet M's diagnosis that, along with her utterly normal appearance, has led some family members to believe that M would be better behaved if only I were a stricter disciplinarian. Oddly enough, I think that's probably true. She might act more compliant, but I suspect she'd be feeling a whole lot more upset than she usually does. And you've gotta know that the idea that being a stricter disciplinarian could solve Sweet M's language disorder and behaviorial challenges doesn't really sit so well with me.

But my father's Alzheimer's has been progressing apace, slowed somewhat by medications such as Aricept and Namenda, and it seemed as though it was time for a visit. I wanted to see him while there was still a chance that he would recognize us. And we sweetened the deal for Sweet M by offering to take her to Legoland first.

After a series of complications stemming from the Valentine's Day ice storm flight cancellations, all of us arrived in San Diego by Monday the 19th, and headed to Legoland the next day. We took a tip from Susan Senator's book and requested special assistance for rides so that we could get times to visit rides rather than wait on line, and I'd recommend that to just about any autism parent. Once in a while it annoyed us to hear a Legoland staff member excusing our prescheduled (and thus expedited) access to the ride by saying things to other parents like "Sorry folks, it's a case of a handicapped child." I wondered if announcements regarding one's disability status are supposed to be part of the price one pays for using your disability-autism-parent access card at an amusement park. I sort of think not.

Nonetheless a good time was had by all. Much shreiking took place on each of the several rollercoaster-type rides that are Sweet M's very favorites. And we looked at the massive cities built entirely of Legos: every Lego perseverating kid's dream come true.

We'd held up our end of the deal. We went to Legoland. It remained to be seen whether Sweet M would (or could) hold up her end of the deal and hangout at Grandma and Grandpa's house. And she did. The first night she really wanted to leave — to go back to our hotel — and she let us know, both verbally, and with this rather dramatic note written on my mother's whiteboard. In this photo the word "want" is obscured by my camera's flash . . .

Then she settled in to watching some TV, eating her plain pasta with olive oil, and playing with new toys provided by her aunt and great aunt.

What we loved about this note was that she used her words, as we are always asking her to do. While we wished the content had been more upbeat, we were proud of her clarity and note writing.

The next day, she would use her words again, once again in a way that I would never have anticipated, and in a way that was even more disturbing. Stay tuned.