I am very overdue for updating this blog. Mostly because I wanted to get through the holidays without a. riding the rollercoaster of “will this be the answer” and b. dragging everyone along with us.
So, here’s where we’re at
Dominic is now almost 100% non conversational. He does use words during speech therapy type settings (we do flash cards every single day), so its not quite right to say non-verbal, but he certainly doesn’t have nearly the vocabulary he used to. The non conversational piece is the hardest because he can’t even tell us where it hurts if he’s stubbed his toe or something. He communicates moderately well non verbally – he’s become good at letting us know what he needs without using words.
He has responded really well to the occupational therapy for sensory issues. He doesn’t notice tags in clothes anymore unless he actually sees them. He will now wear jeans with holes in the knees, or patches on them. He’s not flinging himself on the furniture all day long anymore. He’s doing better with other kids. He FINALLY, the day before Christmas break at school, independently joined some other kids in an activity – his teacher was so happy she took pictures for me.
Interestingly enough, we’ve gotten the comment from a couple of folks lately that if they didn’t know that there was a distinct problem with Dominic’s speech, the would’ve just assumed he was very shy because he does get his needs met. At my staff Christmas party a few weeks ago, one of my coworkers swore to me that Dominic was talking with the kids, and I just looked at him and said… but he wasn’t using words.
Two people in the last month have commented to us after spending time with him, that they’ve worked with autistic kids and he’s not acting autistic. Which is good, because we don’t think he’s autistic either. However, we’re at a point where we need to dig deeper and find out if theres anything else we should be doing to help him regain conversational ability. And we need to formally rule in or out an Autism Diagnosis.
So, we saw his pediatrician in mid November to discuss this. Our pediatrician at that point agreed that it was time to dig further since the speech therapy doesn’t seem to be doing much, and personally called the best pediatric neurologist in town to get us an appointment (this is the doc I wanted to get in to see last summer). Dominic had an EEG the beginning of December in anticipation of that appointment, which is scheduled for January 12.
His pediatrician also suggested we look into ABA therapy. I found out that there is exactly one provider of ABA therapy who is listed on our insurance in Colorado Springs. He’s a child psychologist. We are on the waiting list to get an appointment. The difficult thing about ABA is that because its so intense, and time consuming, its very expensive. From the paperwork that Dr Hatfields office provided, IF we had an autism diagnosis, we could qualify for funding (of 20K a year from the state). My insurance specifically has a line item excluding treatment for an autism diagnosis from coverage. So we would have to be very careful how we proceed with that. In any case, Dr Hatfield is a well known child psychologist in town, and if the neurologist can’t figure it out, maybe he can.
Then, because I’m big on balance and have never given all the credit to AMA, we’re going to go see a doctor who is affiliated with D.A.N. who is widely considered by all the other doctors in Colorado Springs to be a complete whack-a-doodle loon. The pediatrician’s eyes rolled all the way back in his skull when I mentioned Dr Kucera. Thing is, there is merit to the diet change idea – and I want to have a broad selection of options. . Anyway, it again depends on if we get an autism diagnosis. We have an appointment with him to just discuss all of this on Jan 21.
So, we have several irons in the fire at this time. Speech and Occupational therapies are still continuing weekly, and Dominic is still in preschool 4 days a week.