DS does not fall on autism spectrum (long)

jenn2929 · August 2011

It's a huge relief to know this! We had a long few days driving down to Baltimore and very short naps for N, but he did great both days. We saw an OT the first day she basically played with N and observed him. She said she doesn't think he needs OT services at this time, but there are some thinsg we can work with him on like making sure we don't do things for him (Let him scoop the hummus out of the cup, let him discover things for himself.)

Yesterday was super long we took S with us b/c the apt ended at 5:30 p.m. and I wouldn't get home in time to pick her up from daycare. We saw a few speech and language therapists in a room that must have been 80 degrees. But N did great, he was pleasant, not fussy at all. They did the Mullen Scale of Early Learning. We won;t have th results of that back for a few weeks, but he is a little behind in expressive and receptive language. That was the longest portion of the day. DH then tells me that he told me last night he had to leave at 3:30, which I don't remember at all. So he left me with two antsy, over-tired kids for two hours. I have to admit, it was pretty tough!

Then we saw a nurse, who took some genereal health info and medical history. Then we saw the Dr., whom I absolutly loved. He was incredibly nice and person and seemed to really care. So I spent about 45 minutes with him answering questions baout my pregnancy, my medical history and the kids medical history. He was Great. he even helped me out to the car with the kids when the appointment was over.

So his preliminary findings are that there is no autism spectrum disorder, which is wonderful. In addition to the speech delays, he has non-specified static encephalopathy, which is a non pregressive 'brain disorder' that he will in time grow out of. A scary word for a something that is really broad based. I am so grateful that teh dr said if I google it, I'll get some really scary info and to ignore all of that b/c those definiotions won't apply to N. Basically, the way I'm interpreting it, all of his synapses are connecting and firing yet and it's just going to take some time. I don't feel great about this as this 'diagnosis' is really ambiguous, but I'm going to wait until we get the full write up before I start doing all the reserach on it.

So we go back in 6 months for a follow up eval to see how much progress N has made. The Dr. did say he had a concern about both kids sizes. That they are too far below the chart curve and suggested we see a pediatric endocrinologist (sp.). Even when I told him that DH and I both come. I have no problem with that at all. I'm of the mind that I would rather get them tested for any and everything and know if there are any issues as early as poissble.

We go back to KKI in 6 months for a follow-up to see how he's progressing. I'm feeling ok. I know this is wonderful news, but I don't feel great about it yet. I've been so worried for so many months that it's hard to get out of that mindset.

Thanks so much to all of you for your support!