So, last night I was all set to write about some stuff that has transpired this week —not an awful lot of it terribly wonderful. Not bad, per se, just really frustrating stuff with Nik’s school. It has had me feeling so overwhelmed trying to sort things out to find solutions for all that Nik is lacking at school. I simply couldn’t sit and concentrate enough to actually form the words into cohesive (or coherent) strings of language which would be meaningful to anyone else. (Hmm, I wonder if that’s what it feels like to Nik. If so, I can certainly understand the “zoning out” he sometimes does; it’s exhausting trying to communicate sometimes!) Anyway, I was all set to vent and didn’t. Then I had an experience today that helped put things in a new light —a calmer frame of reference.
First, though, a little context about where I was last night when I went to bed —
So here I had worked up a good and righteous head of steam over some things going on with the SLP at school —namely that she’s just finished her fellowship training and gotten her official license last week (and may have been working with an expired temporary license for the last six weeks) , doesn’t have the experience and/or skill set to deal with a child like Nik with overlapping issues, and she either doesn’t know that she doesn’t know or won’t admit it. Either way, it sucks. As a result, Nik’s had ZERO oral motor program since Christmas. There’s more but that’s pretty much it in a nutshell.
I also just found out this week that the PT we love, Miss B., is being deployed to Germany in September —for the entire year! Boy, I am soooo going to miss her! She’s been the one therapist at school who has made consistent efforts at not only communicating with me about stuff but actually having me join in on some of the sessions so I can get hands-on training from her for home carry over. She even joined us for swimming (with the class) on Tuesday to show me things I can do with Nik in my sister’s pool over summer break from mid-July to late-August (the one I am so anxious about!).
In addition, we had the letter from the neurologist and the non-eating issue (again) which I already talked about here. Add to the mix that Nik hasn’t been quite himself lately —more sleep disturbances, fussier, sleeping like a stone at school where he wouldn’t (couldn’t?) nap before. One of the little guys in his class went home sick the other day and I’ve been hearing about a stomach bug going around —including our pal, Charlie. Without going into specifics (which we can all well imagine, thank you very much for our stellar scatological detecting skills, eh?), I think Nik is on the verge.
So, the turnaround today came in an unexpected form. Nik’s feeding evaluation with a new therapist at the hospital. Ostensibly, the eval was supposed to be so we could take home some specific oral motor exercises to do both at home and school. Frankly, I didn’t have any expectations much beyond that. Call me jaded but we’ve seen tons of specialists including those at the pediatric feeding and swallowing center at CHOP in March of this year. Let’s just say, no one has actually bothered to listen to our thoughts, theories, and concerns —until today!
We came away from today’s appointment with a renewed sense of hope. Now, let me state for the record that I firmly believe my son can do anything. So trying to understand why he went from a kid who would eat baby food a year ago to completely tube dependent now, with all the cycles of eating and refusal in between —well, it just wears you down. When “the experts” are so far off the mark —“It’s a learned aversion.” “Simply turn him away when he does a behavior you don’t like (throwing food, spoon, bowl, etc.); he’ll stop acting out because he wants your attention.” “Make him wait and look you in the eye before each bite.” HELLO??? Have these people never worked with autistics before? Yeah, OK, I know it’s different for every child, but how many of you have a kid that, at the age of 3 ½, really cares if you ignore them when they don’t want to eat?? Nik is perfectly content if I ignore him when he’s like that!
Sorry, I went off on a bit of a tangent there. Back to today’s session…
This therapist, B, was amazing. She went through the whole “Have you tried…?” We had; it didn’t work. Instead of scratching her head and saying, “Well, I don’t know what else to tell you to try,” she dug so deep down into her bag of tricks and pulled out several rabbits and those scarves-that-turn-into-bouquets…you get the idea! For example, she helped us find ways to try to turn even Nik’s refusals into opportunities. You know those chewy tubes (the ones Nik will only bite once then throw)? Well, B, suggested that there is a way to stuff the end with something like a dried veggie stick (or mini pretzel stick) so that when Nik takes that ONE bite, he gets the proprioceptive input of the crunchy stick. Ok, maybe some of you have “been there, done that” but we’ve tried darn near everything to get Nik to bite anything. No go. Putting thinned purees into a cup for Nik to drink (he’s constantly trying to pick up the bowl and lick it so why not?). And those mesh feeder bags —Nik won’t even touch the bag; he flings it away from him or picks it up by the handle and bites the handle. Yet, he’ll chew on a wet washcloth. Guess what we’ll be using to wrap up some bits of fruit to try?
I think the thing that amazes me is that it’s all tuff that, when B said it, sounded so simple and logical. Yet NO ONE has ever gotten to that level of detail. B even has referred us to the hospital’s developmental feeding program so Nik can be seen as an outpatient by a team of people it turns out he is already familiar with from previous evals and such. Gee, I feel like Dorothy in the Wizard of Oz —it was right in my own backyard!
The real transformation came though when B listened very thoughtfully (and patiently) as we told her about the frustrations at school and the SLP lack of experience. B was so professional and diplomatic. She said that she understood what it must feel like for us but that feeding is such an involved area of specialization that most school therapists don’t have the background for many, many years. She helped us let go of the drive to make school handle the problem (my emphasis) and focus instead on how we can use the feeding clinic to reinforce things for Nik and create the carry-over and training that will allow him to progress at school. God, again, it sounded so simple that I can’t believe we couldn’t step back far enough to see it.
B is a gem and Nik took to her right away; he let her touch his face and rubbed his cheek against her hand in invitation. He initiated hand play, he smiled and laughed with her —in spite of his obviously not feeling well (as evidenced by bursts of hysterical arching and howling pain as if a horrible bellyache had taken hold). She was articulate, resourceful, creative, and she really respected our input. In short, we’d like to adopt her into our family of Nik’s special friends and service providers.
The catch? She’s moving 2000 miles away in three weeks! And our beloved pediatrician retires as of tomorrow, too! Seems like we just find the really good ones and then they move on. Sigh…