…to be a pain in the neck, a thorn in the side, a nudge, a pushy mama.
Nik’s back in summer school now and I’ve been spending each morning this week right there with him to make sure he’s getting the gross motor activity and sensory input he needs before meals. This is not a new concept; I’ve been saying this to the teacher, to the para’s, to the case manager, the PT, the SLP, the OT for months. MONTHS. Hell, even the janitor is tired of hearing it! Hello, people, did you think I was talkin’ ‘cause I like the sound of my own voice?? (Well, ok, sometimes I DO —but that’s beside the point entirely!)
Well, amen! Hallelujah! Someone FINALLY AGREES!
Let me back up a step here and put my excitement (and cynicism) in context for you. Nik has never been a real “eater.” He spent so many months with a feeding tube down his throat or up his nose, followed by the g-tube stuck into his tummy when he was one year old. Nik has gone through cycles of eating and making great progress then not eating at all —for months at a time. We’ve had just about every conceivable kind of evaluation, intervention — you name it. NO ONE has been able to de-bug this one.
A year ago, when he started preschool, Nik ate nearly everything we offered him —all pureed baby foods with little to no texture variation. We’re talking roughly 70% of his total nutrition; we were gearing up for getting rid of the tube. When Nik started school, we told the staff what works to get him to eat —we had done great with it. The attitude at the time was, “Let’s try it our way and see how he does.” Well, here we are a year later and Nik is no longer eating. Nada. Zip. Zilch.
We’ve been working with a fabulous behavioral therapist, Dr. S., who’s finally decided it is time to tell the school to either “get on the bus or get run over ‘cause we’re moving on!” She’s going to prescribe each and every step of the program so we can get Nik back on track. We’ve known for months that the problem has nothing to do with Nik’s desire or hunger. The poor guy clearly communicates his desire to eat but when we sit down to do it —he falls apart. Nik cannot focus long enough to take more than a few bites, tastes really, before he is just overwhelmed. Even the things that used to work no longer work.
Not only have we known this but we’ve shared it with everyone at school until we’re blue in the face.
My theory is that Nik ate well a year ago because he was getting the appropriate sensory and motor input for where he was at the time. Then, he didn’t walk and hadn’t discovered the joys of the mobile prone stander or climbing and cruising —let alone sliding or swinging. He didn’t need as much intensive input. Today, Nik is a kid in constant motion, in spite of not walking independently. Niksdad and I have noticed for along time that Nik does much better when he has lots of gross motor activity and deep sensory input —and especially strong oral stimulation —immediately prior to each meal. He also does better with minimal distractions; school is pretty much the antithesis to this!
Unfortunately, Nik is also a child who requires perhaps much more consistency and structure than the “average” or NT child. Why is it that we, the parents of such children, completely get it —and it’s no big deal to work with, yet the “trained professionals” never seem to catch on until it slaps them in the face?
So, back to summer school we go —
The para we really liked, Ms. M., didn’t get placed in the preschool for the summer (and boy is SHE bummed!) and there is a new (translation: totally green/inexperienced) para working with the preschoolers over the summer. That means that Nik’s teacher, Ms. J. —who is one of the few that really gets Nik, is working directly with him especially for meals. My husband always says, “For those who are ready to learn, Nik is a great teacher.” GOD BLESS MS. J., SHE IS FINALLY READY TO LEARN!
After putting up with this nudgy mother all morning yesterday, listening to my thoughts and suggestions (but having no way to implement them at the time), Ms. J. got on board the Nik-train with us! Woo Hoo! Today, as I sat and watched her working with Nik at breakfast, she acknowledged to me that yes, Nik does need far more input than he is getting. She told me she spent time yesterday with the OT to find some solutions to help Nik and is also going to be looking at how to restructure parts of his day so he focus better. (Mommy does her happy dance here!)
This morning, I ran into Ms. D, the OT. She told me she was going to be recommending a brushing program and some specific sensory exercises and activities for Nik to do daily. She also told me she shares my opinion and frustration about the lack of a structured, formal oral motor program for Nik. Ms. D. also showed me a couple of things that she’s tried with Nik that seem to be working. Yay!!
Meanwhile, we have scheduled an independent feeding evaluation in two weeks. Yeah, another eval. This time, our focus is going to be on specific oral motor activities and exercises to be implemented at school. No more of each person trying “a little bit of this, a little bit of that!” No more assuming “he’ll learn as he goes.” Ain’t happening here folks.
Dr. S’s not-so-secret objective in making Nik’s feeding program so incredibly specific and regimented (not to mention far-reaching if Ms. J is looking at restructuring Nik’s day!) is to show the school how much Nik clearly needs 1:1 support. I think the fact that Ms. J. is the one doing the 1:1 support right now will only bolster the argument further come IEP time. Like I said, God bless Ms. J.!
Today I feel like we finally won a battle —which never should have been fought in the first place. But we still have many more skirmishes to go.