Moonlight and Madness

In the moonlight
All the words you say
Make it relatively easy
To be swept away
In the half-light
Can we trust the way we feel
Can we be sure that anything is real?

“Moonlight” by John Williams, Alan Bergman and Marilyn Bergman

Seems lately that a few of us have been off-kilter, out of sorts, unable to concentrate, feeling disconnected, or overwhelmed. I’ve been ill the past week or more with some gunk that has decided to move in for a longer stay; I’ll be calling my doctor Monday to ask about a sinus infection and bronchitis. Frankly, I’m surprised it’s taken this long for it to hit me given the stress of recent months.

But lately, I’ve been feeling odd too and I can’t say it’s all (the cold) in my head. I try to write about things —fairly significant things about Nik and his health, progress, or development —and I can only get part way through. I seem to get so easily distracted that I lose my train of thought and either fall out of the groove I was in or I take off in a completely different direction. My writing lately has felt more like “stream of unconsciousness” than anything else.

Sure, it could be the gallons of cold medicine I’ve been imbibing (liquid daytime and nighttime meds in case you were thinking something more exciting!). But tonight, on my way home from the grocery store, I discovered the real culprit lurking in my neighborhood.

Seriously, it’s been a strange time in my head lately. So many things going on with Nik, my being ill, Thanksgiving and the approaching Christmas holidays, and Nik’s fourth birthday. I feel like I haven’t had a chance to catch my breath and when I do, I can’t seem to articulate the thoughts I want to share.

So bear with me as I disentangle my threads of thought and try to regain my sense of order and control (well, in some small measure anyway).

Here’s the first of a few installments—

Nik’s speech therapy:

I’ve alluded to this in previous posts. We’re at a crossroads with Nik’s therapy; he’s not making any discernible progress as far as I can see. There are no new sounds or gestures to communicate specific intent or thoughts. And yet, he does communicate pretty clearly. Niksdad and I are the only ones who know how to interpret it though and that’s not a great thing for the longer term.

Nik’s current therapist, Miss K, is the same one that worked with him (and I use the term loosely) last year at school. She left in September to go into private practice. At the time we started seeing her, I didn’t realize that Nik’s former therapist through Easter Seals, Miss M, could still see him. Since we had already made the arrangements with Miss K, we started to see Miss M for feeding therapy; she has a sub specialty in that and we knew Miss K wasn’t equipped to help Nik with the intense oral motor therapy he needs for eating skills. I also thought the exposure to different people would be good for Nik.

Well, here we are a couple months down the road and Nik is making tremendous strides with feeding but not with communication that others may be able to understand. I think Miss K doesn’t have the experience to handle a kid with the complexities of Nik’s background; she’s only one year out of her clinical fellowship. Miss M, on the other hand, has been in practice more than ten years and has seen all sorts of kids through early intervention. After an entire school year of working with Nik, mostly in group settings, Miss K still doesn’t quite “get” him; she doesn’t see or understand the autism and she just doesn’t connect with him. Miss M has the advantage of having worked with Nik in our home for more than a year. Nik adores her and will do nearly anything for her —ok, except eat outright and talk. But the relationship they have is beautiful; Miss M gets him on so many levels. She doesn’t necessarily see or understand the autism piece but she engages Nik in a way that few others can. They laugh and clap. they take turns, they make pretty good eye contact. Miss M has made such a lasting impression on Nik that he initiates playing a game with her that he remembers from more than a year ago.

So why isn’t Miss M seeing Nik for his speech therapy you ask? Good question. She doesn’t have any more time slots available —though she says she could do both feeding and speech combined in the two sessions a week we already have. I don’t have a sense of how in tune she is with augmentative and assistive technologies. I guess I need to ask her. My fear is taking away that extra session a week that we have been using to see Miss K and not making sufficient progress with augmentative devices or strategies to help to communicate with others in a meaningful way.

As I write that, I realize how silly it sounds. It boils down to whether I want to spend an extra hour each week (including travel time) to see a therapist who totally doesn’t get my kid and who doesn’t make me feel heard and respected —not that she has made me feel overtly DISrespected—and not have any discernible progress to show for Nik’s and my time. Or spend less time but with someone who not only totally gets my son and loves him as much as her own child but who also makes me feel like I am the expert on Nik and who is genuinely interested in what insights and observations I may have to share.

The alternative to either scenario is that I spend roughly three hours each week (an hour and change travel time each way, door to door) to see yet another therapist who may or may not “get” Nik or engage him the way Miss M does. I’m not sure that’s a chance I am willing to take.
I guess when I see it in writing it’s kind of a no-brainer. That’s one of the many things I love about blogging; it allows me to stop and try to put my thoughts in order and —voila! The answer was right there all the time.

Thanks, I needed that!

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