Approaching ‘normal’

I realized the other day that this is the first ‘real’ summer the two younger kids have had since they were maybe a year old. (The Captain, of course, has not improved, so he continues in partial hospitalization, and has developed a kleptomaniac streak that’s gotten him in trouble with the law. Fabulous.)

But Little Miss and Dr. Doo-Be-Do have been in autism summer camp, ADHD summer camp, multiple therapies, over and over, at the Barber Center, at the Achievement Center, at the college, even after we finished with the 40 hours a week of ABA and talk therapy. This summer, by contrast, they can sleep in. They can use a pool pass to the city pool whenever they choose, and belong to the summer reading club at the library. They can attend the summer cheapie movies at the theater downtown. They can play their video games and watch Glee Project reruns to their hearts’ content.

They can have a BREAK.

So far we’ve seen no negative consequences. They aren’t slipping back into any of their negative behaviors; instead, they’re warming emotionally, able to interact and share home-y parts of the day with us. Granted in a couple weeks, when we have to start setting the alarm a little earlier and earlier to get used to the school schedule, it might be less exciting. But now we’ve been sewing together, and Little Miss and I made jam from raspberries she picked in the back yard. The Doctor helped his dad drywall our new bath and laundry rooms, and he’s even playing Warcraft one night a week with his dad, too.

Just like “real” kids.

On the Allegheny River across from the new Steelers stadium

Which is so refreshing, after years when we spent a total of 70 hours a week in therapy. Not that they’re “normal”–whatever that is–but they are strong, functional parts of the household team. Little Miss has a streak that makes her use the correct tools for any job and continue it till she’s finished, that is a blessing. The Doctor has a wicked, if sometimes off-base, sense of humor that cracks us up. We like having kids we can trust to do what they’re asked and let them out of our sight for a few minutes, even babysit each other if we need to run to the corner store.

Their brother? Suffice it to say we’re still pursuing other therapies for him, since he can’t be left alone for even five minutes, or trusted to look after himself much less his younger siblings. This one child consumes seventy percent of our attention and worry; we have lost countless hours of sleep trying to figure out how to help him, or at least be able to live with him. Thank heaven for respite care, when we can at least have some time to bond with the other two and remind them how a normal family interacts. Well, a normal family with a passion for science fiction and musicals, all computer geeks and computer creators, who can quote you lines from Monty Python and the Holy Grail or Blazing Saddles or Firefly with equal vigor.  (You know, if the Captain would at least begin one of his rampages with “I aim to misbehave”, we might give him a couple points for effort…)

In the meantime, we continue to expand our family circle with a nice visit to Asheville to see K and her little family–thanks for your hospitality, and can’t wait to see you soon!

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4 thoughts on “Approaching ‘normal’

  1. Summer. So glad to hear that there have been a few lazy, hazy days mixed in with the the other kind! My favorite memories are those endless, unscheduled summer days… just being a kid. You’ve made some good memories this summer!

  2. I love summer days when you don’t have to stick to a busy schedule and can actually sleep in. Well…I think it’s the THOUGHT of sleeping in that I like, since Cody doesn’t ever sleep past 7:00 a.m.

    I’m glad you are having a nice summer and that you have respite care.

    My mind’s still on the raspberry jam. Yum. 🙂

  3. As the mother of four ‘normal’ children, I’d have appreciated the odd warning, “I aim to misbehave,’ once in a while.

    Your family amazes me, Babs. Most of all, you amaze me. Many families would fall apart with 1/100th of your challenges, yet you manage to strengthen your family and inspire others to look for and embrace the ‘normal’ in their lives.

    Thank you for sharing your life on these pages.

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