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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Running out of time

How does it happen, every year? Summer starts when the kids get out of school and you have this huge vista before you, all the things you’re going to accomplish, both educational and just-for-fun, and the next day comes, and the next–and suddenly it’s August already and almost back to school! How does that happen?!

Not that we haven’t done anything. All three kids have dutifully gone off to camp daily since the second week in June (with its three-hour round trip driving), until the annual visit to Memaw’s house. We’ve had picnics, and put up the inflatable pool (okay, so it’s a little green at the moment from disuse, but it’ll get better next week after camp. And some algae stuff.). We’ve visited family and friends within a reasonable radius (Hey, Jen and Seb!), had a blast at motel pools on the way, hit the Erie zoo, we’ve seen movies and plays.

So now we hit the stretch and all those things we were going to do this summer to get everyone ready for school are sitting at the top of the downhill slide. Little Miss has a stack of papers her teacher sent home, as well as learning a typing program so she doesn’t have to face so much handwriting as she enters fourth grade. Ditto Boy is going to spend days with his dad learning how to do household things–hanging drywall, repairing broken items, changing the car’s oil–all designed to help with his self-esteem and self-confidence.

The Captain — well. Seventh grade. The Cabana Boy has a program of computer learning ready for him, and we’ve finally decided to put a computer in his room with Internet access (appropriately limited) so his thirst for trivia can be fed and maybe he’ll just learn something. Plus, he’ll have access to online communities of peers who may be easier to communicate with, less ready to judge. Over the last ten years, my closest friends have been those I’ve met online, not in real life; maybe that’s not such a bad way to go.

There are still movies we want to see, places to visit. Our museum membership in Pittsburgh gets us into half a dozen places free, and we want to take the kids downtown to gaze up in awe at the crystal palaces of the business world. Two major Irish festivals remain, featuring Gaelic Storm, who delights us all. We’re not quite ready for Cedar Point or King’s Island, but we might try Waldameer. Still haven’t made it to the beach. Or the park. Or the library. But we’re gonna! Sometime! Maybe about midnight on a Wednesday in a couple of weeks! Hurry up! Time’s a-wastin!

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If you have any time left this summer, come visit the Parents Helping Parents Carnival, where there’s a lot of good advice and funny stories about the parenting life, and gain some perspective at the Carnival of Work-Life Balance.

Snippets

So far this week, it’s been a rollercoaster of ups and downs. The county people told the newspaper they “have no clue” why poisonous gas appears and disappears on the street in front of our house. That’s reassuring. (please insert sarcasm here)

On a high note, a fiction piece I’ve been trying to publish for four years finally came out–and I got paid!! Makes me all warm and fuzzy inside. You’re welcome to take a peek– My Sad Cuisine . I’ve definitely been in this field too long.

While we have not yet resolved our camp issue, it is becoming painfully apparent that Captain Oblivious has reached a plateau in his functioning level that may be permanent. He’s nearly 13 and has a crying fit whenever something happens he doesn’t like. For example, yesterday at camp, surrounded by therapeutic people, when it was announced there wouldn’t be computer time because some repairs were needed, there followed a 15 minute rant that caused him to have to be be removed from class and counselled in the hall. A similar breakdown occurred last week when the eye doctor recommended bifocals for his terrible sight. He didn’t want bifocals, they were awful, he couldn’t get used to them! Scream, cry, rant.

We all, therapists included, have been working on the meltdown situation for six YEARS without improvement. I think I’m becoming resigned to the fact that he will always deal with things this way. It makes me sad (No really it pisses me off. I am convinced he could control it if he tried. Maybe not. Maybe we’ll never know.) Employers won’t deal with that. Places of higher learning won’t deal with that. How will he be able to function on his own?

Then one of my girls came to me for some important advice. That always makes me feel good.

And finally, the “Welcome, Summer!” edition of the Carnival of Family Life picked up one of my pieces, but there is a whole beach basket full of lovely reading there for folk from families. Stop in and take your shoes off!

Mea culpa, mea culpa!

Okay, I’m sure it is my fault I have children with special needs, and I deserve to be punished for it–more importantly, they apparently deserve to be punished for it.

We did get approved for our therapeutic summer program, with 30 hours of TSS/mobile therapy each for Captain Oblivious and Little Miss, so they could attend a summer camp sponsored by a Catholic school in a city 30 miles away. We’re driving them there and picking them up. While the therapy is covered by their medical card, we’re forking out $155 a week so they can go to camp. Because that’s how much camp costs–$100 per week for one child, or for two children, $155 per week, for camp from 8 am to 5 p.m.

Except apparently our money doesn’t go that far. I came to pick up the children today at 4:15, to discover everyone frantic because I was not there at the 3 p.m. cut off for TSS. The kids there for therapeutic social interaction are apparently not welcome after 3 p.m., because they have no personal babysitter. (This is where I will withhold comment about how wonderful it is for the Catholic school to act in such a good Christian manner.) But the school will still charge us full price for the two hours we’re not allowed to stay.

Now this was not the policy last year. Last summer the children could stay till the end of the day, two hours, without TSS. Perhaps there was an incident, or something not made public…but the school camp has changed policy (and apparently not bothered to mention it).

As one might imagine, this rubs me the wrong way. The camp director was busy having a fit today, so I didn’t engage her in serious discussion about it. I did ask the wrap agency guy on the scene if it would jeopardize their relationship with the school if I raised hell. He assured me with a smirky little smile, that he thought I should do whatever I saw fit, as a consumer. He knows I’m a lawyer. Perhaps I’ll do their dirty work for them–I know they’re not happy with what’s gone on so far–and the first week isn’t even done.

So I’ll give them a call tomorrow. Point out the error of their ways, as it were, and see what we can do to make it better. Or as my secretary always says, “Are you going to make them cry?”

Let’s hope so. Stay tuned.

Tourney for the Journey

My daughter is the Director of Residential Programs for Sierra Nevada Journeys, an environmental camp just off Lake Tahoe in Reno, Nevada. They’re running a fund- raising contest, and I wanted to share it with you, because I know many of our special kids are so deep into nature, we’d all like to go. It’s a fun way to contribute to a special cause and win prizes, even more so if you know squat about basketball! (which I don’t!)

Here’s Beth’s letter:

Sierra Nevada Journeys’ 2nd annual “Tourney for the Journey” is on! This is an exciting time for both NCAA Basketball and for helping to make a difference in the lives of youth. “Feeding two birds from one seed” as our kids like to say. We couldn’t be more excited about the progress SNJ has made in its short 15 month history. In 2007 we served 620 students with nearly 18,000 student-education hours. We gave out nearly $5,000 in scholarships in a range of residential and in-school programs and our growth has been supported by more than 50 volunteers providing over 5,000 hours of contributed effort. We’re now at a permanent staff of four and just two weeks ago we served our 1000th child. All of this has been made possible because of people like you who realize that they have the power to transform kid’s lives.

Like last year, this year’s “Tourney for the Journey” allows you to fill out an NCAA tournament bracket then watch how your selections do … all with the opportunity to win prizes! With the proceeds collected we’ll be able to offer scholarships to underserved students and keep our program fees affordable. One of the organization’s top priorities is ensuring that students from a wide variety of backgrounds have the opportunity to experience the outdoors, science enrichment, and leadership programming.

It’s easy to participate in the event, just follow the two steps below:

Step 1: Make Your Picks & Donate

Go to the Tourney Site www.sierranevadajourneys.org/tourneyforthejourney.html and click on the basketball icon to register for the Tourney, make your selections, and donate. Make all selections before 9am (Pacific Time) on Thursday March 20th.
Suggested donations:

$25 for one entry … $45 for two entries … $10 for each additional entry per house-hold (it costs approximately $75 for a student to attend our 5-week after-school science, leadership, and rock-climbing program). (Note: if you’d rather not participate in the tournament, no worries! You can still Donate via the above link through Paypal or with a credit/debit card)

Step 2: Follow Along With the Action!

Once the tournament starts, go back to the Tourney Site to check on how your teams are doing. Prizes include:
*Outdoor Adventure Pass good for one of more than 80 experiential adventures around the country!
* $100 REI Gift-Card
* National Parks Annual Pass
All participants will automatically be entered into a drawing for a chance to win a print from locally renown Reno artist Nanette Oleson, who paints idyllic scenes of the Sierra and western Nevada. The last-place entrant will receive a “Reno, Envy” t-shirt. (Get it? Reno…N.V.?? They’re so clever…)

Choose quickly and good luck everyone!!

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By the way, I’m the guest blogger today on the Special Needs Parent blog–come by and check it out!