Today, we met with Simon's OT at KKI to review progress and set goals. Overall, the goals involve getting Simon to use his left hand and arm as much as possible while working on some basic skills he needs to simply get by; like feeding himself, assisting in toileting and dressing, interacting with peers, and making "pre-writing" strokes. Though seemingly modest, the goals themselves aren't a surprise to us, we've been working on them since he started missing all the milestones in the first place.
What surprised me today was an observation his OT shared with us, that might end up having a lot of impact on how we interact with Simon.
She and Simon have been "playing" with a sort of giant stretchy fabric tube in the shape of a fish. Simon throws a bean bag into the fish's "mouth" (to feed it) and then he tunnels in after it, getting sort of tangled up in the stretchy fabric along the way. He has to use all his limbs together, and lots of weight bearing and stretching and pulling to get back out the other side.
Simon LOVES this activity. In fact, he likes to just lie inside the stretchy fabric tube letting it squeeze him. He'll even tell the therapist "good night" and hang out until she "fishes" in for him.
According to the OT, during this activity, Simon behaves differently than he does the rest of the time she is working with him. Simon is an easy going, happy kid that mostly cooperates (with a fair amount of assistance). But, the majority of the time he's also in his own world, talking and singing to himself, or just staring off (I like to think he's deep in thought about very serious matters at these times).
However, during a highly sensory activity, where he is getting a lot of physical sensation, he's more alert. He makes more eye contact with the therapist, and he responds to her more readily. He pays better attention and is overall more engaged. To demonstrate this, she had Brian bounce him around a little bit. Sure enough, he immediately came out of himself and looked her directly in the eyes when she spoke to him -- his whole face alive and attentive.
Holy crap.
The OT thinks there might be more to this phenomenon than a simple enjoyment of physical play, she thinks he may have a hypo-sensory disorder. After talking to her further about the symptoms, and initiating a little internet research myself (oh boy, a new topic!), I'm pretty sure she's spot on. The OT is going to have us fill out some Q&A's to confirm this, but due to the wonders of the internet, I've preempted her (a little).
It would take me way too long to list all of the questions I've answered YES to, but suffice it to say that I'm certain we are on the right track. Here is a sampling:
> craves vibrating or strong sensory input
> always jumping on furniture, spinning in a swivel chair, or getting into upside down positions
> is a "thrill-seeker"; dangerous at times
> seeks out surfaces and textures that provide strong tactile feedback
> may not be aware that hands or face are dirty or feel his/her nose running
> prefers foods with intense flavor; i.e., excessively spicy, sweet, sour, or salty
> excessive drooling past the teething stag
> loves/seeks out "squishing" activities
> enjoys bear hugs (I personally enjoy this one, myself)
HOLY CRAP!!!
While I am really, really, really upset with myself for not connecting these dots sooner on my own (and I think it is worth noting here that as a special-needs parent I've pretty much been trained to be on alert for signs of HYPER sensitivity since it often indicates disorders like Autism.. not the other way around), I'm also a little excited that we may have another answer to some of our questions about Simon. I know from experience, that while it can be scary (sometimes very scary), having a diagnosis means the beginning of getting the right help for our little guy.
For now, it looks like another long night of research for me. I'd better go put on that second pot of coffee.
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