Do they have surreality shows…?

…’cause if they do, I think I need to sign up.

The kids started school today, officially bringing this summer to an end. Not a moment too soon, in my book. This has to be the strangest summer I’ve ever had. And that’s saying something.

As a corollary of the fact that Little Miss and Dr. Doo-Be-Do didn’t have any formal/medical/mental health programming this summer, I actually functioned as a Stay-at-Home-Mom. As I’ve worked forever, even carting baby B in a bassinet along with me to my floral design employer, it was an odd shift. (Recalling that job, born of the Mariel boatlift to Miami, and Bobby Catoe, the man I worked for, I remember he kept calling the baby “it” or “Ger-trud-ah”. He wasn’t a family man.)

I think the shift began when my father stayed with us this spring, and I was called upon to be available all day long as he needed help. I noticed my greater focus on tending the home–not that before, I just let it run wild, but it wasn’t as high a priority. Now it’s something I do all day long, not just in breaks from the office. Of course, when the children were here, I also played taxi driver, entertainment coordinator, main medical shuttle, food canner, jelly maker, garden maintainer, clothes shopper, etc., like many of the other moms I know who don’t have to work outside the home. It was refreshing. I like it.

I worked on and sold another novel this summer. I moved from student at writing conferences, to teacher at writing conferences. I sold books. I got interviewed. The writing life is mine to have now, which is a surreal existence all on its own. I’m still trying to fit it in with all the other hats. Not always a cozy fit.

The Cabana Boy is finally teaching full time in addition to his computer/network side business, and I got an official job with the county, which means a steady paycheck. Haven’t had one of those in about ten years. Definitely an unsettling experience. It still surprises me every couple of weeks to see a new deposit in my bank account. Pleasant surprise, mind you, but…weird.

And then of course, there’s the saga of the Captain, who completed months 12 thru 15 of his three-month stay in partial hospitalization, had his first interaction with the juvenile justice system and pushed his father to extreme sanctions out of desperation. It is a totally unreal feeling to know as a parent, that you have done EVERYTHING within your power to help a child and see what’s necessary to comply with the house/societal rules, and have him do something other than that. I mean, I’m not naive. I work in the system. I see parents and kids who have lives that are out of control, but so often those are due to economic or social issues that affect the family. I’ve had teenagers, too, a lot of them. I know they have interesting twists and turns all to themselves. But that’s not what we saw here. We were powerless to make the necessary changes happen, after doing everything we’d been recommended to do by those working with the Captain in the system.

So he’s in a therapeutic foster care setting. Because we failed. Even though we know in a cognitive manner that we had done everything we could, and that the worst part of his issues are due to things he can’t control, it still feels like we failed.

On the other hand, it’s been a week now, and our household has lightened immeasurably. The Cabana Boy says his chest has stopped hurting when he approaches within five miles of home on his way back from work. No more headache trips to the ER from the overload of stress. No more ulcer symptoms.  The other two children have adjusted beautifully and “the team” has become more than just lip service. We’re a family again, a “normal” family.

Any one of these things could have been a major shift in a life. We’ve experienced them all in a season, half in a blind rush that shoved us through the days. Only now that the pressure is off can we look back and reflect. It still seems like a bad dream, a lot of it. All we can do is hope as the days go by, that the worst of it fades and that we get to keep the best.

Until Hollywood calls…

Advertisements

With an arsenic chaser, please…..?

Day from hell.  No, from right PAST hell, and out the other side.

First, not sleeping. Not sleeping sends the fibromyalgia into Massive Overdrive. Add to that the entry of a weather front–definitely not a good sign. So we’re into the Vicodin first thing.

Good news flash! Our CYS worker has smoothed the way for a clean intake for the Captain’s foster care placement next week. Sigh of relief.

After I check that email, though,it’s off for a morning of defending survivors of domestic violence, helping out the local legal services agency, overloaded with 14 cases the same morning. Worried all morning that I won’t finish in time for my early afternoon meeting with the partial hospitalization team at the Captain’s current placement. Stress=more pain. Hurrah.

Settle all the cases I’m responsible for. Yay! Get home in time to even take Little Miss and Dr. Do-Bee-Doo to Mickey D’s for lunch on the way to Erie.

Meet with the team and the new doctor. Even the Cabana Boy can finally participate by phone, for the first time, which is good, because the Captain’s current living circumstances are at his insistence. I get worn out defending it. (Even if I have nothing else to offer instead; the Captain’s been through my entire repertoire already.)

Finish there, leaving feeling pretty positive for a change, and head to Erie County Farms for a grocery stock up before K and her family come next week. This is a crazy place, for those who don’t know it, where people mob the counters, sometimes steal food from each others’ carts, etc., but mid-afternoon halfway through the month is usually better. I leave Dr. D. with a list of cheese to get at the cheese counter and take Little Miss off to gather everything else, two tasks that usually take about the same amount of time.

We’re busy shopping, when we notice a stir among the store workers, who are rushing around looking for something. Or someone. Turns out they’re looking for the parent of the little boy who’s just had a seizure.

Oh, yes, Dr. D.

So we make our way over and check him out. He’s a little pale, but he looks ok. He had a couple of fainting spells several months ago at a comics convention with his dad, but dad hadn’t fed him first. This time was a little different. Some bystander called the ambulance, so while we were waiting for them, Little Miss was a little antsy, so I give her the number and list and ask her to wait for cheese. Like three feet from me.

Good enough.

Then the ambulance shows up, and the crew checks him out, and his vitals are fine. I explain we’re from out of town and I want to get him checked out at home. They’re fine with that. We sign some papers and then I turn around and Little Miss is gone.

Finally the lady at the cheese counter says, “Oh, I sent her back to the other cheese counter to get the fresh mozzarella.” 

OMG. I thought I’d die. I can’t leave Dr. D., in case he seizes again, and I can’t go look for her. I’m like…are you kidding? The cheese lady much have figured out I was freaking, because she came out and asked if she could go find her. (Granted, she looks old, she’s 5’4″, could be 14 or 15.) So I mention that she’s autistic, and the cheese lady says, “Oh, I thought so. I’ll be right back.”

She goes to look for her. But Little Miss, exercising the common sense she’s so gifted with, wanders back to the last place she saw us when she can’t find the cheese. Bless her! The cheese lady comes back with cheese in hand and we go to check out.

I send the boy to the car to rest and wait, making sure the last thing I say is “Leave the door open because the car is hot.” I check out and come to the car, which is all closed up and about 105 degrees inside. Banging my head on the van really doesn’t help (tho it does feel good when I stop…)

So we head home, calling the pediatrician en route, who wants to see him as soon as we’re back in town, of course. So we swing by there, and she sets an appointment at Children’s Hospital in Pittsburgh for next week for an EEG, no pool or baths in the meantime so he doesn’t drown. I’m making the Cabana Boy take him. I’ve handled the whole Captain debacle, and I’m too damn overwhelmed working four jobs while he spends all his spare time on the computer. So this one’s his.

At least it was the day my delightful cleaning woman was here and the house was clean. And K’s coming next week. Otherwise I’d just go ahead and jam a stick in my eye or something. *sigh* Definitely more vicodin on the menu for the night…and a hope that tomorrow is a better day.

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!