Okay, so much on my mind lately and I just need to vent. I'm not really asking for advice here; I'm just sharing my thoughts.
So, Ryan.
Where do we go from here?
I'm still waiting on his discharge assessment results from Dr. Saunders after leaving Summit Centre. Yeah. That was in November, and I call every few weeks to see if they have them yet.
I will admit, I have dropped actively doing his ABA programs since he started school full time. There's a few reasons: 1) to give him to adjust to full time in the classroom 2) because I really wasn't seeing major progress with his ABA programs 3) because he seems tired after school, and I don't want to burn him out with full time school plus ABA programs.
I've been questioning myself constantly about what the next step should be.
Two things in my mind stand out as important general goals: 1) self-help/daily living skills and 2) establishing a functional mode of communication.
The question is, What's the best way to go about this?
I know Summit Centre would say get back into ABA immediately. There WAS progress. But it was tiny. And incredibly slow. They'd say use PECS. But we never got past Phase 3. And it only worked in discrete trial ABA sessions; it never carried over to the natural/incidental environment with Ryan.
At school, they've been trying the core board for communication. The only picture Ryan will tap is "more." It hasn't carried over to anything else, and he already has a sign for "more." That seems redundant to me. I think it does to Ryan, too, because he would get mad and sign more repeatedly while ignoring the core board with me.
I keep reading/seeing more and more stories about nonverbal kids and adults with autism who have learned to communicate. When they express their thoughts and feelings, I get so anxious for Ryan. These people are highly intelligent, but before they could communicate, you would never know it. I wonder, What is Ryan thinking? Does he understand everything I say? Does he feel trapped in there and long to share his thoughts with the world? Is he learning from his environment? Is he picking up on classroom lessons, like letter and number recognition? Is he learning things from watching educational kids' shows?
WE JUST DON'T KNOW!
So far, we have no real measure of Ryan's cognitive capabilities. There have been no eye-opening breakthroughs, and all assessments to this point have suggested significant cognitive delay, but that's because he can't respond, so HOW DO WE REALLY KNOW?!
That's also why I don't know where to go from here. I don't want to waste years and resources and put stress on Ryan and ourselves for therapies that are doing little to nothing. But I don't want to settle into acceptance of things as they are when there might be potential for a major breakthrough with him ... If we could just find the key.
I am so confused. I am so frustrated. I feel like I'm groping around in the dark in an unfamiliar place trying to find that light switch.
Should we go back to what we know (ABA)? Should I start trying harder with the core board? Should I switch it up and start investigating things like Pivotal Response Training or Rapid Prompt Method?
I don't know. I just don't know. I feel overwhelmed.
