July 29, 2012

Summer Update

This was a good week. I feel like I am breathing again for the first time since summer began.

We have demanded a lot from Moe this summer in his home-based ABA program. For the first time, he is in a truly individualized program, one that meets the definition of "intensive." He's doing well, but also telling us his limits. He's learning not just skills that he should have been learning in school, but learning compliance as well.  They are spending time cleaning up "junky behavior" (like grabbing everything) and keeping him focused. Moe needs to know that when he has work to do, he has to do it - or let us know that he needs a break. He always has an out, but that escape cannot be with bad or aggressive behavior.

Moe is doing great. He has a fantastic team who believes in him. Last week one commented that they can't believe Moe's rate of learning. This is especially interesting since the school district has tried to make the case that Moe's lack of progress is due to his slower rate of learning. It just shows how important it is to find the right program and the right teachers.

Unfortunately, with the change in routine, Moe's sleep demons have returned. This seems to happen with each major change in routine as, I believe, Moe processes the changes. The combination of his difficulty falling asleep, accompanied by night wakings, takes its toll on the entire family. We are trying to find the right combination of dose and timing of melatonin and behavioral approaches to helping him fall asleep and stay asleep.

Moe spent some time testing us with escape behaviors and aggression, but I'm learning some techniques to deal with it, and Moe is learning quickly that he gets what he wants by being calm and asking nicely (which in his case is any communicative attempt with eye contact), and not by acting out. This last week was good, though, and although the weekend ended with a bit of hyper, manic behavior (he is still Moe after all), he seems to be finding some regulation again.

We are only three weeks from the new school year, which brings with it big changes for us. Moe will be going to a new school, and I suspect there will be a bit of a transition once again. The school is a good 30 miles away, so we will be commuting as well, and I am more than a little anxious about how we are all going to handle it. I've had long commutes before, and they are taxing. But this was the only program we found that seemed appropriate for Moe, so we do what needs to be done.

Looming over us, of course, is the fight we are in with the school district, a fight that has been placed temporarily on hold as the teachers and administrators are now on their summer break. This has given us some time to regroup and focus on what is important, which is of course, what is best for Moe.

July 18, 2012

A Little Luxury

Not too long ago, I attended a presentation about special needs parenting called "Juggling Three Balls and a Watermelon." We special needs moms are fantastic jugglers. Just like all parents, we know how to keep many balls in the air at once. But for us, one of those balls is really a watermelon. It is heavier than the rest and can throw things off balance. It would be really messy if dropped. And so it is really important that we keep that watermelon in the air. The other balls, the ones labeled "other kids" and "marriage" and "keeping the house clean" often get dropped.

But there is another ball. Sometimes this ball is so small, has so little weight, it flies away. We might not even realize we don't have it any more. That ball is marked "self."

This speaker suggested one way to take some time for ourselves is through small luxuries. For example, she suggested taking an extra five minutes in the shower and, most importantly, to acknowledge that time as a special treat. I had a few immediate thoughts at this.

1. That's not very environmentally friendly. Aren't we in a water crisis?
2. I am lucky to get a shower every day, let alone one with extra minutes tacked on.
3. I have eczema. I'm not supposed to take long showers.

Even so, she was clearly on to something. My bathroom is filled with lotions and bath products that smell wonderful and look pretty and that I can only use once or twice before itchy red patches start to appear in the crooks of my elbows and the backs of my knees. But I can't help myself.

I don't generally do product reviews on this blog (though I would happily tout my favorite chewy tube or zip-up-the-back pajamas). But when I got the opportunity to try a new body wash from Dove®, a brand I can generally safely use, I couldn't say no.

The bottle even looks nice with
our new bathroom tile
So for the past week I have been using the new Dove® VisibleCare™ Softening Body Wash with NutriumMoisture™.  The first thing I noticed was how thick and creamy the body wash is. It feels very luxurious and contains a mild cleanser that is designed to soften skin and dry spots. Nice! It also has a lovely floral fragrance that includes an elegant combination of magnolia and pink jasmine. This worried me at first, since fragrance is often a no-no for sensitive skin, but I'm happy to say that my skin looks and feels great: soft and moisturized with no need to add extra lotion after getting out of the shower.

And because I was reviewing a product, I had to take a shower every day. And with this body wash, I even felt safe tacking on a couple of extra minutes. You know what? It was actually kind of nice.

What do you do to find some "me time?"

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July 16, 2012

Lessons Learned

You looked them in the eye, or maybe stared at your hands, and you said the words. "Yes. He will make progress here next year."

You lied, or maybe you just don't know any better. Either way, you all echoed those carefully crafted words so that you would have them on record. But none of that changes anything.

You have failed my son. And now it is time to move on.

I know you want to be able to help him. I wanted the same. I put my trust and faith in you. I gave you my son. I put his future, his entire life, in your hands. And it wasn't enough. For two years you had your chance.

At first I didn't blame you. But then we looked a little harder. We witnessed it all. We could see it wasn't right. I'm sorry--wasn't "appropriate." I can use the right words too, you know.

And we have seen what he can do when it is.

We have wasted too much time already.

It is a shame. I know many of you have the best intentions. You took the job because you wanted to help. You probably didn't know about all the bureaucracy. How you would be discouraged to do the right things. I can only imagine it. Who was it who told you "don't offer anything unless the parents ask for it first?" Who told you to find a way to show progress even when there isn't much to show? To blame him rather than take responsibility?

And now my son's education has come down to a financial decision. To legal bickering.

Do not forget there is a little boy involved.

Do not forget the time you sat around a table and made promises you knew you couldn't keep.

Do not forget the face of a child whose mother will not fail him. Even if the system did.

It's a shame.

July 10, 2012

Always Moe

I haven't been writing much these days. I want to. I want to keep a record of everything that has been happening. We're chugging away with getting Moe a new placement for next year. Lawyers are involved. Moe's ABA program has started. We've added more speech and OT for the summer.

But every night, when I sit down to write about it, I can't. Sometimes there seems to be too much to say. I cannot sum up. Other times, I am so exhausted I can barely keep a thought in my head, let alone write a coherent sentence.

But often, when I sit down to write, I have one crystal clear thought.

How are we supposed to keep doing this?

Moe, despite the language gain that I wrote about, continues to be aggressive, impulsive, and often completely out of control wild. It is beyond frustrating. Moe didn't have any ABA this afternoon, and in the course of a couple of hourse he broke a clock, took his diaper off several times, pooped in his swing, grabbed the dog, and swiped my glasses off at least three times. We had some fun water play outside, but he also spent a lot of time out there climbing the air conditioner and pulling handfuls of dirt out of my plants.

In other words, the same things he does every day.

I don't know how to teach him that these things are not okay. Time outs don't work. Redirecting doesn't work. I try to keep him engaged and he scratches or tries to bite me. Nothing seems to work to curb the behaviors for more than a few minutes. I don't like to yell at him but sometimes it seems it is all I can do. It doesn't help anyway.

I was so over his behavior that around 3:30 I put both kids in the car and just drove around for a while. Moe seemed relaxed and Jelly fell asleep. It was the only break I had all day.

I should take it day by day. But the voice I hear just keeps asking "how much longer is it going to be like this?"

I can deal with different. I can deal with delayed. We used to talk about getting Moe "back on track." No more. This kid is so far off track that we don't even know where the rails are anymore. That's okay.

But the aggression. Impulsiveness. Lack of sleep. Breaking things. Ripping books. Grabbing at anything in sight. Always afraid the next time is going to be the time Berkeley has enough and bites Moe. Always on alert. Always looking for triggers. Always interrupting Jelly to check on Moe.

Always Moe.

July 2, 2012

Moe Finds His Voice

Moe has a really cute voice. Soft and breathy, it is the sound of the sweet boy that he is. But for a long time, I rarely heard that voice. Moe communicated in whines and cries. He'd shriek and make repetitive sounds for no one's benefit but his own. He sometimes sang, but even that had become less frequent over the past year.

That harsher voice sounded like the Moe we had been living with: aggressive, moody, out of control. I forgot the other voice--the other boy--existed.

And then, a little over a week ago, I was eating chips and he really wanted one. Moe had been getting better with physical imitation and signing, so we had been working with him on signing "I want" then pointing to a desired item, rather than just whining and grabbing. But for some reason, I thought back to my Pivotal Response Treatment (PRT) training. I held the chip up and said "chip?" Moe pointed. He grabbed and signed every sign he knew. I held his hands down and said "chip?"

And then Moe said "p."

It was just a "p" sound, but it was clearly an attempt at vocalizing his need. They were really good lime tortilla chips and we did this over and over and over. Again and again, Moe tried to say "chip."

After that, something happened. Moe is now requesting things with his voice very consistently. He still signs sometimes, and his behaviorists always want him to give eye contact even if he speaks, but he will almost always go to his voice first. He consistently says "up," "apple" and "phone." We've also gotten "open," "all done," and "more." Sometimes we get the beginning of a word and sometimes the end, and everything else gets some variation on "ba," the sound he makes most easily.

The words are all about Moe's needs and I can't exactly say Moe is talking. These are all approximations. But he is trying. He spontaneously comes to me and taps me to get my attention, and then makes a sound. I understand when Moe wants something and isn't just unhappy. Moe understands when we are trying to get him to say something. He often can't form the word or sound, but he knows what he is supposed to do.

It is a small step but it feels like a barrier has been broken.


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