One of the frustrating things about Bug is that sometimes success or failure seems completely arbitrary and outside of our control. After our first OT session going very well, last week's was a 100% failure. Bug was fine going in to the office and to the therapy room, but after that he didn't want anything to do with Geri or any suggested activities. He did climb into the ball pit but came out extremely quickly. He tried a tricycle but wouldn't ride it in the hallway and started crying every time we tried to encourage him to do anything with it (like turn around). No swinging at all--really surprising. He got very upset quickly and spent a lot of time clinging to me--again, really surprising. He seemed kind of scared and we really couldn't figure out why. We also tried the headphones and he absolutely didn't want them on him. Big bummer.
So when we go this week, it's going to be a "start at square one" deal I guess. I think it'll go better as we establish a routine and he establishes trust in his therapist. I have been working on telling him that OT is about having fun and playing games and that he will always be safe. We do expect him to still use words and sentences when appropriate though (he really rebelled against this on Thursday). I do wonder if he'd do better if I wasn't in the room. Wiggle comes with us and is a bit of a distraction and Bug uses me as a safety net, so he can get away with more if I'm around.
At home we are having a lot of frustration too. Almost all engagement from Bug comes in the form of reciting books or phrases from tv. Sometimes he becomes completely fixated on a phrase and wants us to repeat it over and over. A little bit of it is ok, but when that's all he wants to do, or if he insists on saying things incorrectly, I lose patience for it. He of course deserves time of his own to do his own things, but when he's insisting that you repeat something exactly as he says it when it doesn't make sense, it's a little nutty. It's like we're playing a game that I don't know and he won't explain to me...I bet he feels like that with us sometimes too.
Sadly, I don't know that he plays with any toys in the "traditional" manner anymore. (As much as it breaks my heart to say it) He often gets upset if we try to play with them or show him. Physical play is still popular, but especially when it comes to a 45+ pound child, there's only so much we can do with that. He is becoming more tolerant of hearing us read books aloud (Wiggle frequently requests books now).
We kind of don't know what to do. He's pretty cooperative and tolerant of games in speech but when we get home we can't replicate to any success. Our plan is to pick a couple of games that we want to play and model and encourage those with him. Everything is a delicate balance between encouraging but not pushing too far. He often responds negatively but actually does seem to be enjoying things, so you always have to try to call bluffs. We also want to work on more play with Wiggle and hope that Bug learns from that and will join in (this is what happened with the books).
I am praying hard that OT last week was a fluke. I don't want to have the same types of experiences we had with Early Intervention OT. I'm also becoming anxious for a diagnosis so that we can open doors for more resources. We are just at a frustrating point right now. I know that no progress comes quickly. That this kid requires us to always keep looking at the big picture while we plug away at our short term goals. But gosh would I like to see him pick up some of the skills he lost...
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