9.26.17 Kids on the Move Assessment

As soon as we got home from our appt with Bennett at his regular pediatrician's office last week I called Kids on the Move which is the birth to early intervention program here for kids who are struggling developmentally and seem to be at risk of developing autism or any other kind of developmental disorder. They were incredibly responsive and did a really thorough intake right there on that first phone call as well as set up a formal assessment for the next week for someone to come out to our house to test Bennett to see if he qualified.

I texted all of our parents after she came so I'm just gonna post that text here because it has all the info about the assessment in it:

"We had the developmental assessment just now for Bennett. She stayed for about an hour and a half playing with him and watching him and he definitely qualifies for early intervention services. So for $50 a month or so, we will work with a team of all kinds of therapists and specialists to come up with a treatment plan and basically learn how we as parents can intervene early and do whatever we can to help him. They mostly come to us and it's all parent-teaching so we can do stuff every day with him on our own and it sounds like a really great program. 

Anything below 16th percentile is considered developmentally delayed, so here's how he scored:

   - Social/emotional-3%

   - Cognitive-18%

   - Gross motor-21%

   - Fine motor-27%

   - Receptive language-2%

   - Expressive language-2%

   - Adaptive skills (self-soothing, sleeping through night, eating)-13%

So while not all of them are considered severely delayed, some definitely are, and overall he's just pretty low on everything :/ 

So we are definitely right to be concerned, and I don't know if we'll ever know what caused the delays or not, but hopefully intervening this early will really help. She already showed me how to teach him to get in and out of a sit safely so we'll work on that now, haha. Nurse comes next week to check hearing and vision and everything. And then we all meet to set up the treatment plan."

I don't think it's ever easy to sit through an hour and a half of someone expecting reactions from your child and highlighting what he isn't able to do, and our evaluator did an excellent job of accentuating the positive for me mostly, but I could still see her marking down zeroes every time he missed something. For lifelong high achievers like Dave and I who have rarely ever tested below 80th percentile in most things, it's hard to face the reality that our son is not only severely delayed in a few areas, but even the ones where he's within the range of normal, he falls in the 20-30 percent range. I expected him to maybe qualify for services, but probably be borderline normal. I didn't expect him to be so severely delayed in so many different areas already. That was a bit of a shock for me. 

The other unexpected consequence of having him evaluated formally is that there's more of a sting every time he doesn't respond like we now know he should be able to. Before, we were able to just chalk it up to "teething", "tired", "not feeling great", etc. But having gone through what feels like hundreds of little milestones with her, I can't ignore how many he just doesn't hit. So every time I call his name now and he doesn't seem to hear me or care, the disappointment is a little stronger. Every time I try to play with him and he refuses to look at me, the sadness hurts a little more. Every time he doesn't even try to say "mama" or "dada", I have to work to hide the disappointment in my face. And every time I see another baby in the store who generously smiles and coos at complete strangers when all they do is smile my heart feels a little heavier with longing and fear that it'll never be like that for us. 

I'm hopeful that since we're starting when he's just 10 months, he has a good chance of improving and catching up to some degree--but with seizures, you just never know what's in store. He could catch up perfectly, then have a status seizure, and lose it all. Or he could just stay at this stage forever and never learn anything new. I doubt that's the case yet because I think I can see him trying to learn things still, but we have no idea what his limitations are--and we won't until many many years down the road. Welcome to the large and expansive unknown world that is seizures.