Today is the day I've been alternatively excited for and dreading for months. Yes months, because these doctors have waiting lists up to a year.
We oh-so-luckily sneaked in to an appointment just after Sophia's 2nd birthday (HAPPY BIRTHDAY DARLING!), thanks to our former PT that worked a little magic for us and bumped us up in line.
I wasn't sure what to expect but the normal "play assessment" was overseen by a Speech Pathologist (because she had speech delay in her file) a graduate clinician (who administered the cognitive and social tests) and of course Dr. Milanese, the best in Connecticut. I was so pleased to meet her :)
Sophia did her thing (and when it comes to words, talking, playing- that IS her thing) and had a lot of fun. The parent interview was thorough and Dr. M was easy to talk to.
After about 30 minutes or so of eval, during which Dr. M pretty much said it's not autism and that they have only good news, they went outside to score all the assessments and write up their notes. Sophia and I played for 15 minutes to allow them to work.
All of her scores came back great :) She is developmentally appropriate for all the "tasks" and tests they gave her. The speech pathologist said with a foreign two year old (that is, she has never met her before) she should be able to understand 50% of what she says, and she said she understood much more than that.
Sophia does NOT have autism. She doesn't fit anywhere on the scale at all.
So what does she have? Literally a perfect storm of SPD (sensory processing disorder- namely, vestibular {balance, motor planning}, hypermobility {super flexibility}, and low muscle tone. Yes, I knew this before, but a developmental pediatrician's diagnosis (and non-diagnosis of autism) is like the nail in the coffin. We are done. No more specialists! Sophia still has a long road ahead of her, in terms of her Journey to Walking. She will still be going to Occupational Therapy (OT) once a week and Physical Therapy (PT) once a week at the hospital. We are adding in aquatics at the Y (not official therapy, but helpful to her nonetheless). We will be so very busy but I'm so happy to report that IT'S WORKING. Sophia has been taking steps here and there :) She is up to 4 steps on her own!!! I just had to stop typing and got up to watch her walk 7 steps to her daddy!
They made sure to test the auditory defensiveness and the tactile defensiveness and they are still very much intact. Her OT will help with that.
Sophia has a couple behaviors where she has her hands
close or in he mouth, or this thing where she rubs her binky against
her cheek over and over (and can't give you a reason why she is doing
it)-- Dr M said these are self soothing behaviors, and help manage
anxiety. She said you could try to extinguish these behaviors, but it
might manifest itself in another way- maybe something that you're not
able to ignore easily.
So all of this is amazing news of course! So there had to be a little bit of bad- and it's not necessarily all that bad, just sombering. The last thing we talked about was preschool readiness. It is very possible that Sophia won't be ready for a preschool program at age 3, like her peers. She might stay home an extra year, maybe even both years and could even go to Kindergarten late (we'll see). It's no secret that I'm not working and that my husband is pulling all the weight right now, WHILE going to school to become a teacher. When all of this stuff began, I stopped building up my retail business and now have zero income. Having Sophia home for another 2-3 years is a WONDERFUL thing but we do have bills to pay, so there is going to be a lot of thinking about the future and how we can best continue to provide for her. It's not that I don't want to work, I actually would like to and should be back at work by now (doing what? I don't know). But 2-3 appointments a week plus a kid that's 2 and not walking isn't every day care's dream, or employer's for that matter. No, we would be a burden, and there will be some long discussions about what we can do to keep Soph in all her therapies and me at home to bring her to them.
