Monday, October 17, 2016

Feeding Therapy: Day 3 & 4

Day 3 and 4 of feeding therapy were much the same, with day four being harder for us.

Day 3, session 1:
Review Day 2 lessons (allow therapist to touch face and chin for up to three seconds).
Do REALLY good at that. WAHOO!
Move on to:
Learn that one should open one's mouth when given tactile & visual cue.
Refuse to open one's mouth.
Cry. Scream. Beg for help. ("help me!" and "momma!!" -- but of course I was no where to be seen, so he didn't really expect me to come. I was on the other side of the one-way glass mirror praying fervently. "just please let him open his mouth." and chanting in my head "please buddy, just do it, just do it, you can do it") He'd also tell the therapists to "be nighk" (be nice). And then thrash. If he hit or hurt them or himself in the process, so be it.
Open one's mouth, begrudgingly.
Get toy and praise.
Repeat from *************

Day 3, session 2:
See Day 3, session 1. At one point the therapist said "Open your mouth" and J shouted back from clenched teeth "I'm TRYING!!!" Not quite good enough.

Day 3, session 3:
See Day 3, session 1, after the ***********. It was very clear that he both understood what needed to be done AND wasn't willing to do it.

In between session one and session two he went to a nearby therapy gym and climbed and slid and swung and had a DELIGHTFUL time. He LOVED IT. And, bonus for the ASL part of our journey, when we went to get on his shoes afterwards, he said "goog" and signed "shoes."  Communication WIN!  The day before he'd "read" his first word in a book, it was the word "balls" -- he read it in braille, but that doesn't matter (he's learning both) the point was that he made the connection between print and meaning, so I was feeling like this week was a pretty big "win."

In between session 2 and 3, he slept.


Day 4, session 1:
See Day 3, session 1 (after the *******). Then after about two minutes of trying and failing, he gave a NICE easy WIDE open mouth. Got his toy. Then she asked him again, and after only about five seconds, he gave a nice wide open mouth again. Calm hands, no screaming. Just and absolutely compliant.  Things were starting to move along. He was GETTING it. Then he decided to fight again. It didn't work, timer beeped, he opened his mouth one last time, session done.

Day 4, session 2:
Having failed at the flailing technique, and still not having any interest in opening his mouth on command, my ingenious son chose a new form of resistance. He sat. hands calm by his side, and refused to engage the therapists. He wouldn't look at them, wouldn't respond to their tactile or verbal requests. Wouldn't even lift his eyes. He looked half asleep. The therapists kept her finger on his chin (her tactile cue) and he just ignored. For, like, a long minute of passive resistance.
That didn't work either. So he opened his mouth and got to play with the toy. Then he tried the passive/ignore technique again. The therapist waited him out and she won. Seeing that wasn't working, he alternated between the two techniques. At the end, after a long two minutes of refusing, the timer went off indicating the end of therapy. He wouldn't be allowed out of the chair until he did the task they asked of him, so after another long twenty seconds, he sighed, said "OPEN!" and opened his mouth wide for them.

Day 4, session 3:
I woke him up 15 minutes before his session so he'd be ready for his therapists. He wasn't having any. He was cranky. He didn't want his hearing aid, and barely wanted his glasses. The hearing aid became such a fight that we sent him off to therapy without it. But that fight set the stage for the therapy that followed. Every open mouth was a fight. Now, don't get me wrong, the THERAPIST didn't fight. She just sat there calmly, finger on his chin, reminding J every now and again that his job was to open his mouth. The fight was between J and himself. And it involved LOTS of thrashing and screaming and begging. His mouth only opened every two minutes or so. Most of the session was a battle of wills. Very little of it was playing with toys. Because that's what J chose for the day.

In between session 1 & 2 we explored a new play area with one of my friends. Story time was a part of the process. J was only barely okay with story time. It was in a loud open room with echoing walls. When the SECOND story came on, a book on tape instead of a live person reading, he had had enough. He stormed out, found the quiet play room, and played with the calming noise machine. It only sort of calmed him, though, and as we left the play area, he was in tears. We never figured out why. (He started crying before we started leaving.)

He slept really hard between session 2 & 3,  but in the bits of in between time, for the full day, he was fit-to-be-tied. He threw trains, threw himself on the floor, or (in his better moments) isolated himself in a corner away from kids with one toy and played just with that toy, ignoring the rest of the world. He was a right mess.  At the end of his last, and least successful therapy session to date, he ran up to the wall and hit it SO HARD with his hands that the therapist asked if the sound hadn't been made by his head. Nope. Just his hands. Because he was just that frustrated.


I echo Jonathan's feelings.  It is ridiculously hard to watch your child cry, head bang, clench and grind his teeth, scream, and beg for your help. When NO ONE is hurting him but he seems to think he is being tortured, and when you realize that that torture is coming from someplace deep inside himself, some visceral response to the complex medical life he's lived, it takes a part of a momma's soul and wrenches it practically in two. A thread holds the two bits of sinewy soul together, I have hope and I trust in the process. I know that these professionals KNOW what they are doing and EVERYTHING he's doing is a step toward independence and self-care. He can and WILL get this. You'll see.

The therapists state that these fights are normal, that it is good that he's moving on to a different tool to fight with, it means he's working his way through all his tools and techniques for resistance and soon will realize that resistance is futile.  Okay, those weren't quite their words. But the point is, it's normal, it's part of the process.

But I still hate it.

And so does he.

I came home worn and in desperate need of hot fudge on top of frozen yogurt. It's an unseasonably warm day, so the day agreed with me too. But there is no chocolate in our house, so instead my loving partner took J to the playground to unwind and I wrote this therapeutic post.

J came back moments ago, much happier. Here's the picture to prove it.

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