Nico progress report.

[lollardfish]

Looking back on the last semester - it was long and hard. Beyond the work and the difficult schedule and our own lives, parenting was extra difficult. Nico was stuck on really all issues - walking, communication, overall body strength, eating, interacting with other children, attention span ... especially attention span. It was tiring and frustrating. I know that I had begun to really feel the weight of Nico's disability. I had sort of figured that by 2, we'd be close to where most children are by 16-18 months - rudimentary speech, standing/walking to some extent, greater ability to both follow direction and initiate play. It just didn't feel like we were anywhere near those benchmarks.

As a father of a child with Down's, I work hard to parent without expectations - I don't want to set limits for Nico's potential, but nor do I want to expect certain things to happen on any particular schedule. It's a challenge, and I had, it turns out, set these "by two" benchmarks.

Since Thanksgiving, Nico has made great strides in essentially every category. He also seems to have grown last week (it's not just the Lightning McQueen sneakers!), as he towers above objects that just recently were at his eye level. His attention span is great. He's signing consistently (baby, mommy, daddy, eat, drink, bath/potty, sleep, no, yes (sometimes), love, play (not always used clearly), and no doubt others). He's making all sorts of new sounds with his mouth, some of which reflect words (I say, "ba-ba-ba bath." He says, "buh buh buh buh buh!"). He's following directions of increasing complexity and showing attention to completing whole tasks (unload all the blocks. Pause. Put all the blocks back in) rather than starting many things. All his therapies have been fantastic this last week - from group play to communication to eating with a spoon to lots of standing in PT.

It's beginning to look a lot like Christmas?

Comments

[lollardfish.livejournal.com]

The problem is internalizing it to the extent that it provides comfort or sanity in the moments of quotidian frustration, but it is interesting to think about Suzuki as a template for the special-needs child. It covers both bases - the need to measure progress and not set artificial benchmarks, but also the driving to improve. It's too easy, especially with Downs, where our children are both nice and easy going, to slack.

[jdtacv.livejournal.com]

A lot of it is about joy and turning that quotidian frustration into joy and developing a HABIT of joy. It takes training and a certain discipline (for the parent), and Ann seems to have mastered that (even with me). It takes the patience of Job, as they say. We see a lot of parents of Ann's students who mostly are very privileged and very smart and very loving and yet very bad parents.