Monday, August 30, 2010

Be Gentle with Phone

So to compare and contrast with church yesterday, we had to deal with phones ringing today. This has been an issue for several months now. T does not like the sound of the phone ringing, to say the least. It has moved from simply covering his ears and inhaling quickly when the phone (cell or land line) rings, to crying and stressing only when we answered it, to tonight's new wrinkle: going into full OCD scripting of "Be gentle with phone" even when we don't answer. Rob & I tried several approaches to distract, redirect, ignore, even attempted to acknowledge and validate that the phone hurts his ears and surprises him, to no avail. For a full 45 minutes, we heard "be gentle with phone" over and over, with him doing everything from pacing to looking us directly in the eye – nothing would stop it. And we didn't even answer the phone this time.

I'm tired today. I'm fighting a head cold valiantly, and didn't get enough sleep last night because AMC insists on broadcasting Mad Men at 10pm Sunday nights. (Okay, I could DVR is and watch the next day, but I don't.) When I'm tired I don't have the mental stamina to stay calm, and about 35 minutes in, started losing it. It is at these times especially that I am so thankful that Rob & I are doing this together. I don't know how a single parent would do it. When I'm about gone, Rob can step in and share a really sweet moment with him. T was still insisting that we "be gentle with phone", but sat in Daddy's lap and buried his head while he cried a little. It broke my heart and warmed it all at the same time.

Eventually it was time for his shower, and the change of scenery – and my last ditch attempt to distract by reciting Dr. Seuss' ABC – snapped him out of it. And just like that, I had my happy boy back.

I really don't know what we could have done differently, if anything. Off to write a note to his behavior consultant – another reason why we're sticking with ABA full time (you know: Applied Behavior

And even more reason to be in awe of what happens with him in church on Sundays.

Sunday, August 29, 2010

Church music

T is going through a phase where any unexpected music is aversive. I had no idea just how often music pops up in our daily life until this phase, so it gets challenging. Just try listening to All Things Considered, Morning Edition, Prairie Home Companion (can you tell I'm an NPR geek?), or watch any recent news broadcast about the 5th anniversary of Hurricane Katrina – there's always jazz in the background – or even this morning on CBS Sunday morning when they did a segment on a real show choir (ala "Glee")…all of these situations are met with a demand of "no music!", "no no music", and "be gentle with music!". The request/demand does not stop until it is met. What's odd is that he really does love listening to music – but it really has to be on his terms.

Except at church. Once we step into the sanctuary, he actually requests "Music", and will get quite insistent if there isn't any. He sits and listens to the organ play the prelude, watches the choir sing, sits and listens along during the hymns, much of the time smiling and happy. We might even get a joyful vocalization during an instrumental piece, as we did today during a piano duet during the Offertory. And while we frequently will need to ask him to use a quiet voice during the evening news broadcast so we can hear it, during church he is relatively quiet – and will lower his voice when reminded. Much of the pretty intense stimming (swinging his legs, flipping fingers, scripting) eases during the service, and there are moments that he sits quietly, looking at his surroundings. I know he's hearing the words and taking in the teachings.

While he sat quietly during the service today, I spent much of the time in absolute wonder of this child. I believe he is connected with God in a deep way that I am only beginning to understand. In fact, I'm beginning to believe that these children, these quiet, gentle & sensitive children, "get it" much more than we ever do.

Monday, August 23, 2010

Full time ABA:VB

The decision has been made: T will attend the Verbal Behavior clinic full time and no longer go to the public schools for a 2 half-days a week. It feels good to be on the other side of this decision, honestly. It was a tough one because we didn't make it due to any displeasure with the schools. It simply didn't make sense anymore to split his time. And honestly, how ridiculously blessed are we in comparison with other families in the country? We have a CHOICE between a TEACCH classroom and full-time ABA therapy paid for by insurance. That's just stupid lucky.

The fabulous SLP and his classroom teacher were both supportive of our decision. Clearly they weren't pleased, but neither were they upset or defensive. In fact, the SLP said that she couldn't argue with anything I was saying, and his teacher said that he is one lucky little kid to have parents who even know such options are available. As much as I currently doubt whether he will ever be in the public schools full time, I do not want to burn that bridge. So far, it appears that I have not.

So this opens up time and energy for other opportunities. Which brings me to the next remarkable event (coincidence?): While we were pondering all these things in our hearts, T's new OT gave me the business card of a music therapist that consulted with her on a mutual client. OT mentioned T to Music Therapist, she's intrigued, and I have the opening I've looked for. I've been drawn to exploring music therapy for T for months, perhaps years…but could we afford it? Health insurance surely would not cover this in addition to ABA, and we are 4.5 years into a 12 year wait for waiver services (waivers can cover music therapy.) But, I thought, nothing to lose by meeting her and discussing financing options/realities. Fast forward to last Friday: I gird my loins for the bad news, fully expecting at least $150/hour. I'm told they bill $11/15 minutes. Eleven dollars every fifteen minutes. Forty-four dollars an hour. AND…there is time in her schedule on Friday afternoons: the very time that T had been in the public schools.

I think this is a very, very good sign. His first appointment is September 10th. Onward and forward we go, making it up as we go along, and feeling very, very blessed along the way.

Text from a song sung at our wedding: "We're neither pure nor wise nor good. We'll do the best we know. We'll build our house and chop our wood, and make our garden grow."

Friday, August 13, 2010

Kung Zhu pets

T was given a Kung Zhu pet for his birthday from a friend this year. This was at my suggestion, because I've seen Zhu Zhu pets in Hallmark stores and thought that it might be a fun toy visually for him. Of course, being out of the loop on hip & current toys, I had no idea that Kung Zhu pets (more geared toward boys) were even out there. So I spent a good part of last night online, watching demos and trying to figure out the whole accessory thing. The Kung Zhu pets, unlike the original Zhu Zhu pets, actually battle each other one they are pulled across a strip that programs them to fight. There is a fighting arena and everything – battle armor – the works. As I was watching this, a thought occurred to me: I don't think T even knows what fighting is.

That's okay with me.

I believe I shall get him the original Habitrail-like accessories. Why teach him violence?

These kids may be showing us the way.

Tuesday, August 10, 2010

Decisions about school

The public school year starts tomorrow. Despite the IEP that is all set to go, complete with the two half-days a week with him in the TEACCH classroom and with ABA therapist from his ABA clinic attending with him one of those days, I'm beginning to have doubts as to whether this is all worth it. We have worked hard to maintain a good working, respectful relationship with the public schools while he attends the ABA clinic full time, all in the hopes that he will eventually transition out to the public schools. This particular elementary school has a TEACCH classroom and the most wonderful, dedicated and imaginative SLP on staff…I didn't want to completely let go of all of that. We truly love this elementary school: the diversity, the staff, and the dedication to their special education classes & students make for a unique place where we were excited to send him, and we lobbied hard for us to continue this set-up for the fall. (The fall, which starts tomorrow, August 11 – how is that possible?)

Yesterday, completely unprompted, Rob expressed some concerns about continuing this. I had to admit that I've changed my mind about it too. So what's changed?

T turned 9 this summer. He remains a happy, healthy kid with very serious communication delays and challenges. Sensory issues and repetitive behaviors, so very typical for people with autism, abound. As of now, we have no evidence that he reads or that he is unable to share with us an ability to do math or other academic activities. This is not to say that he isn't intelligent; his intelligence is not measured by academic practices. He is blessed to have the opportunity to go to an ABA clinic full time, paid for by our health insurance. This is nothing short of a miracle for him and for us. They love him fiercely there. And each person that works with him is personally invested in him for the long haul. The PhD who runs the clinic and his consultant can be with him for years to come, tailoring his program specifically to meet the needs of his "beautiful brain" (as described by his neurologist). At what point do we say that the public schools may not be in his future? Or perhaps not in the near future for him?

If this clinic were not available to us, the elementary school would be a good place for him. He would learn skills, get to work with the fabulous SLP there, have some interaction with typical peers – it would be okay. As good as a public school could get in the state, I imagine. Even so, it is not his home elementary school. The TEACCH classroom is the self-contained classroom which is housed in another school in our school district - so it's not like he's getting to know the neighborhood kids. And even with all the work that's been done, he needs direct 1:1 instruction (or very small groups) to learn. He does not learn in a classroom setting.

My heart is heavy because I understand the inclusion movement. I think it is vital and tremendous, and simply the right thing to do…for the kids that can handle it. T could "handle" it, but is it best for him?

What is there not to like about the clinic? He works 1:1 with one therapist in the morning, has 2 hours of small group and play time, then the whole afternoon he's 1:1 again with a different therapist. His therapists are fun, energetic, engaging, and totally dedicated to his progress. He gets hugs, tickles, smiles, and gets plenty of breaks to go to the motor room for sensory fun. He works HARD for 7 hours a day. The rate with which he learns new skills & tasks puts a year's IEP goals to shame.

I must acknowledge that I am loathe to make changes for him. It is easier to continue with the routine that we've established. And there is some comfort – and it doesn't take much courage – not to decide and keep my fingers in both pots. I don't want to let go of the public schools, but if I am honest, I'm not sure that 2 half days are really benefitting him. It's just keeping a dream alive that maybe I need to release. I've dreamed new dreams - and have released the typical ones that most parents get to keep without much thought. I don't know what his future holds and I can't control it. I learned long ago that the best way to take care of his future was to do what he needs today & tomorrow, and perhaps even next week. The ABA center has done brilliant things for him. The school would be fine. But I have in my power the ability to get him the Cadillac of care. Stay tuned. We may pull him from the public school completely in the next few days…for now.