lollardfish: (DS)
lollardfish ([personal profile] lollardfish) wrote2009-12-08 07:29 pm

Nicholas Perry, close to year 3

It's been a long time since I wrote any kind of update on Nico. Certainly this summer, when he learned to walk, we went through a huge gamut of emotions, but were too exhausted dealing with the new baby, moving apartments, and wrangling a suddenly more mobile son, to do any real writing about it.

Right now, I feel about Nico's communication about like I did about his walking a year ago. I think we're on the cusp of real transitions, but the transition is causing severe frustrating and may continue to do so for months and months.

First the good news - Nico's sign language vocabulary is expanding rapidly. Even more importantly (to me), the signs he has known for a long time now (he really started signing last January) are really locked in and are useful modes of communication. Verbally, things are starting to click. He's marking syllables when playing sound games, echoing sounds, thinking about tongue and teeth placement, often using initial sounds or closing sounds when trying to say a word, and otherwise doing wonderfully. Tonight I was singing the song "Wagon Wheel". On "Hey, mama rock me," Nico consistently went "eyyyyyyyyy" with a huge grin. There's been a lot of examples of extremely promising sound production from the boy, though there's a lot of work left to do.

The, well, not bad, but difficult, news, is that his behavior has entered a new, highly typical, stage. He fights, fusses, gets frustrated, uses bad behavior to get attention, shouts, refuses (to do whatever), and otherwise demonstrates entirely typical three-year old behaviors. What he lacks is the ability to communicate, for what it's worth, of a typical three year old, so it's been a real challenge for us to figure out what approach to take. It's especially bad involving food, since refusing to eat is one of Nico's most powerful actions, I have trouble coping with it (this is my problem, not his), and he's recently driven me to tears. But we'll get through the insane stress of this end of semester time, and I'm sure things will improve for me, anyway.

Fortunately, we have TEAM NICO, in this case personified by our developmental therapist. She wants us to change our play from task oriented (put this in there, put this on top of that, take this out and put it over here, etc.) play, which we've basically been doing for three years now, to more playful play. Trucks go vroom. "Food" gets "cooked" on the toy stove. Phones make calls to daddy who orders pizza. Dolls and stuffed animals play like children and animals play, or go to the doctor, or go to school, and so forth. It's a big shift, but already I can see changes. Give him choices, but then stick with the choices, even if he acts out. We're supposed to ignore bad behavior when possible. When he doesn't want to play in an acceptable way, leave, but and go play in range but not with him. Let him come to you. Don't correct or get sucked in. In situations where we can't ignore (i.e. putting on his coat before going outside in the winter is not negotiable, but he fights lately), don't reason with him. Tell him, only once, that this is a situation in which he has no choice other than putting on the coat (or whatever), then stop speaking to him entirely. No extra attention.

We get to do this because Nico is learning, rapidly, how to communicate, manipulate, and control. Our DT said that other children might not have the tools to understand the situation, and then we'd have to find other ways of responding to this kind of behavior, but she's confident Nico will, eventually, come to us. But it's hard and could take months, especially as we're about to hit a big, big, transition.

At 3 (1/11/10), Nico leaves early intervention and the therapists we've known for the last few years. Instead, he'll be going to school every weekday for a few hours, and have his services in an early childhood special ed. program. This will be very good for him, we believe, but change everything. It also alters our insurance status, since early intervention pays 100% of all therapy costs that insurance doesn't cover. We're not quite sure what's covered going forward, as it's not clear what, if anything, Nico will need. In a year I can swap to a more expensive but more flexible PPO which will cover more, if need be.

So that's our boy. The girl is doing well, although we all have or have recently had colds.

[identity profile] dreamshark.livejournal.com 2009-12-09 03:38 am (UTC)(link)
Thanks for the update. It sounds like Nico is really blossoming right now! I'm fascinated by the whole baby sign language thing, an idea that just wasn't around when my kids were little. I think it's a great idea for all kids, but for kids like Nico it must be a life changing thing. Since it's especially challenging for him to form word sounds, it's wonderful that he has this other option for communicating. It sounds like he is ready for a huge language breakthrough and is working on both of his communication channels as hard as he can. I'll bet that all of you will be breaking through the frustration barrier very soon now and he'll be functioning at a whole new level before you know it.

I wonder if the therapist is steering you towards more "playful" play sessions because you all just need to loosen up a little and enjoy. You don't need to push him right now since he's already pushing himself so hard to make that next big leap. So vroooom away and have fun, y'all!

Edited 2009-12-09 03:39 (UTC)

[identity profile] minnehaha.livejournal.com 2009-12-09 03:58 am (UTC)(link)
I know what you mean about the baby sign language. I wish the idea had been around for my children's youngest years, too.

K.

[identity profile] lollardfish.livejournal.com 2009-12-09 01:12 pm (UTC)(link)
I'm excited to see what Ellie does with it.

[identity profile] cakmpls.livejournal.com 2009-12-09 02:05 pm (UTC)(link)
Me three.

[identity profile] lollardfish.livejournal.com 2009-12-09 01:13 pm (UTC)(link)
It's a total shift of mentality. We worked so hard to incorporate therapy into every aspect of his life. It's good though.

I'm not sure I'd call this "blossoming" exactly. Flowers are much less shouty! :)
guppiecat: (Default)

[personal profile] guppiecat 2009-12-09 07:30 pm (UTC)(link)
Not in Through the Looking Glass. :)

[identity profile] minnehaha.livejournal.com 2009-12-09 03:57 am (UTC)(link)
So much is going on!

I recommend "change of state" for all baby-related hassles, and it sounds like your therapist does, too. Is there any way to have family dinner at the dining room table yet? That'd at least give you something else to do while Nico feeds himself. :-)

K.

[identity profile] lollardfish.livejournal.com 2009-12-09 01:12 pm (UTC)(link)
We're going to change our state by coming to Minnesota for about 2 weeks!

Eating more meals with Nico would be really good and we've been trying to make it happen for 8 months now, but with little consistency.

The problem is that it's not really possible for us to cook dinner to be ready around the time when Nico might eat his last meal of the day (5 or so), so it really only happens when we have company (my parents visit, or something) or when we have pre-fab food. We started trying last spring, but then Shannon's pregnancy got so hard. This summer, we were just thankful we could feed Nico and put him to bed then deal with the screamer for hours. This fall, our schedules were a nightmare. Breakfast is the only meal that's a real option, but since Nico can't/doesn't use a spoon effectively yet, breakfast is still very hands on while the other person is usually wrangling the baby.

But here's the real reason for dinner - when we can get the kids down around 7 or so and make dinner, Shannon and I get to remember what it's like to be married to each other. We sit on the couch, eating, watching TV, chatting. It's the good and so necessary.

[identity profile] cakmpls.livejournal.com 2009-12-09 02:09 pm (UTC)(link)
Thanks for the update. It sounds typical for parenting a kid with any disability--the kid masters the obstructive and unhelpful behaviors just fine! (Been there, done that.)

You and Shannon are doing a great job. Nico could not have found better parents.