Word of the day: phenomenal

I took Zane’s teachers out to lunch to see how things are going.  My goal is to help Zane, help his teachers help Zane,  and make sure his teachers feel appreciated for all their help with Zane.    I know he is going to take more effort than the neuro-typical kids, and I just want to go above and beyond to make sure they know what a difference they are making in his life and how much that means to us.

I started out by explaining that we’ve heard the worst when it comes to Zane but that he always seems to prove everyone wrong.  I suppose I was mentally preparing myself for bad news while trying to explain to her that she could give it to me straight.

What she said brought tears to my eyes. But these were not the tears I’m used to having during these kinds of give-it-to-me-straight kinds of conversations.

She said “Zane had a phenomenal day”.

Not “good”. Not “great”. “Phenomenal”.

Think about Zane’s journey. Think about where he was a couple of years ago.   Then just take that in. “Phenomenal”.

She went on to explain that Zane has made huge strides in the last few weeks.  That’s not to say he’s caught up. He’s still behind. He still has tactile defensiveness and doesn’t want help doing art projects or washing his hands (anything hand over hand), and he doesn’t always follow directions.  But, he will sit, at least for part of circle time. He likes singing and dancing. He loves playing with trucks and trains. He loves the little playhouse on the playground.  He is starting to do what the other kids do. The separation anxiety has subsided.  He’s been doing better and better each day.  Then for a second time, she said that “today was phenomenal”.

My heart is smiling!

I bet you can guess my new favorite word!

Decisions Decisions

We’ve been grappling with decisions lately.  We decided to place Zane in the same preschool that my (neuro-typical) daughter attended.  (“Neuro-typical” is the term used to describe “normal” kids in the special needs community. I guess it sounds less offensive to those who are different).  So, even though he is delayed, has “special needs”, and is officially autistic, we put him in with the “neuro-typical” kids, and we’re hoping for the best.

Here’s our reasoning. If he were to take the M-CHAT (Modified CHecklist for Autism in Toddlers) today, I absolutely do not think he would be diagnosed. I didn’t really think he should have been diagnosed when he was though. He is behind, not necessarily autistic. But, then again, maybe I’m still in denial.  Time will tell.  With the scores he got on the test 6 months ago, he should have gotten the diagnosis, if no other factors were taken into account.  However, developmentally, he was about a year behind because of all the seizures and medications and the test was comparing him to “neuro-typical” kids the same actual age. 

From doing a lot of reading and research, I personally think he has sensory issues, but not autism.  A lot of autistic kids have sensory issues, but not all sensory kids have autism, in the same way that all squares are rectangles, but not all rectangles are squares.  There are different kinds of sensory issues, but he is without a doubt a sensory seeker. 

The point of all this is to find the best learning environment for him.  He is still on a waiting list for one on one ABA therapy for autistic kiddos. That might do wonders for him.  My concern though, is that unlike most autistic kids, he learns from other kids.  After my tour at the facility, I quickly realized that he would be one of the highest functioning kids there.  So, combine those two pieces of the puzzle and you might have a problem. He might end up learning undesirable behavior from the other kids.  Maybe. Maybe not.   If and when they finally have room for him, we’ll have to make the decision about how beneficial it will be for him.

For now, he’s made it through his first couple of weeks of preschool.  The hardest part (for me and him) is the separation. I’m basically always, ALWAYS, with him.  Besides that, he’s doing pretty well. Yes, it is harder for him than his typically developing peers. But, so far, he’s holding his own.   It has been a blessing having the same teacher that taught my oldest at his age.  We’ve known each other for 8 years now, we’re Facebook friends,  and I even did her daughter’s senior portraits. She knows his history and she’s (hopefully) able to tell me more than a stranger might.  I know that I feel so much more comfortable leaving him with her, so I’m sure he must feel that.

Even only two weeks in, his therapists have commented on all the positive changes.  He’s more attentive, he’s interacting more, and he’s going with them, without me (and for the most part, without tears).

So for now, I’m going to take that as a sign that we made the right decision. He’s still got a ways to go, but he’s making great progress!