Friday, August 15, 2014

Driving Time

We didn't make the cut. He doesn't know enough language to be in a research study showing how kids his age with his diagnosis learn language from their older sibling (kids Sebastian's age). Soooo that makes sense. I'll spare you my thoughts... until I copy & paste them from the texts I sent Mom when I needed to unload. ;) So basically we drove to Portland (new helper in tow, not literally, she sat behind me), Judah played in a room with strangers for 20 minutes, we drove away, got lost for quite some time & eventually found our way home. In preparing for this interview the night before, I did end up making a folder of fun (I hope) work for Judah that he can do with the helpers - practicing sentences, identifying objects, people, etc. Most, if not all, of the ideas in the book are for him to work towards his IFSP goals. Unfortunately he had no interest in looking at this folder on the way there. The community inclusion that the helpers do on top of that will undoubtedly provide him with the social interaction piece. They are so eager to get him out. Yesterday the helper wanted to stay here all day - which I told her I thought was the best plan too. He was able to get comfortable with her. Even saying, "Bye Maria!!" when she left. We didn't even realize that he remembered her name! We brainstormed outing ideas on the way to Portland. All of the driving was beneficial in that it did give her & I a lot of time to talk. She was able to get a lot of her questions out & I was in a spot where I could answer them with little distraction. I told her that I'm working on a book.. a Judah book, filled with basic info & helpful info that she will be able to use as well. A lot of the answers she needed will be in there too. I'm hoping to finish that book this weekend & then we will make copies for the 2 helpers, for them to have in their car & then have one here at home as well.

I've got more thoughts than this on our experience today. This is basically the short draft. My emails to Mom..
Didn't make the cut on the Portland State research opening today. He isn't saying enough 2-4 word sentences to participate in a study showing if and how spectrum kids Judah's age learn communication (only verbal communication - other ways of communication are irrelevant and useless apparently) from their 1-4 year older sibling.
She said since he didn't know the sentences he was less likely to learn watching Sebastian on video. And less likely to learn other skills from Sebastian than 2-3 word sentence speaking kids with autism. I corrected her, letting her know that much of what he has learned has come from Sebastian, and let her know that his school speech therapist was shocked at Judah's level of communication when she came over to play with him at home.. A natural environment for him. They asked if he was being like he is at home. I told her, "Well, at home he isn't locked in a room he's never seen before with complete strangers." Not to mention the photographing and video taping they did 3 feet from right from the get-go. The session ended early, Judah wanted me, turned the doorknob only to find that it was locked, then 2 women stood in front of him begging him to play with toys. He took their toys, walked over to the toy box, put them in & closed the lid - communicating absolutely nothing because he wasn't speaking. Meltdown for Mommy ensued, I spoke with clinician, Bash didn't get to do the interview part that I had told him he would & we left, only to miss the freeway exit and spend half an hour driving around lost in Portland. The End.
I also clued her in on the fact that a ton, if not most, ASD kids are non-verbal and that over half of those kids will never be verbal (a very upsetting statistic I've read). They will spend their entire lives communicating & learning to communicate in other ways. Communication doesn't come only in one form. 
Is it surprising that they've spent months looking for a kid to fill their last opening in a study that provides twice a week sessions for 10 weeks of FREE THERAPY working with clinicians and students in the field? They've even added a $100 Fred Meyer gift card to the deal now.


  1. Sounds like a frustrating day. Judah's progress has just begun. He's limitless. Onward and upward, my friend. -erin