Yesterday Austin had an ABA session with his usual therapist, and the two BCBA’s who come monthly to oversee and advise and plan future goals. It started off as a great session. They were playing with cars in Austin’s room and he was making a lot of (speech) sounds. They got a ball and started saying “ba- ball” and Austin actually repeated the sound “ba”! He did this a few times. Then they were pushing cars down his car ramp and saying “ready, set…” like we always do. He never said “go”, but he made several sounds: “Meh”, “ah” and “ba”. Of course we were all excited and clapping.
At close to the end of the session we took him for a walk and finished up in the backyard so Austin could play on the slide-his current favorite thing to do. One of the BCBA’s had the other therapist block Austin from sliding down the slide until he said “go” or any speech type sounds. They tried over and over for about 15 min. They’d say “Ready, set…” and wait for Austin to say something. Of course he didn’t. I should add that at this point it was clear that Austin was exhausted. This was the very end of a 2 1/2 hour session (that went long), he was spaced out, rubbing his eyes. You’d think this would have been taken into consideration, but no. They kept pushing. The BCBA said that we were taking Austin’s therapy to “a whole new level” since he had proved to them that he was capable of repeating sounds.
So they had me go get the ball thinking that he associated the “ba” sound with the ball. That didn’t help either. More crying from Austin, more eye rubbing and just looking miserable. It was heartbreaking to watch him. Those ladies stood there refusing to let him slide while he was repeatedly doing the sign he’d been taught for ‘I want’ and crying his eyes out. They said he was being stubborn because he wouldn’t say any sounds.
I was standing there seething. How is it being stubborn if he’s trying to do the signs that you’ve taught him?! How is it being stubborn if he’s exhausted and been giving in to your demands for the last 2 1/2 hours?! And most importantly of all, how is it being stubborn if both his dr and speech pathologist have clearly told them that he has SEVERE SPEECH APRAXIA; meaning yeah, sometimes he’ll say something or repeat a sound, but doesn’t mean he can now do it any time you ask for it! And it sure doesn’t mean he’s just being stubborn.
The session ended with the therapists having me take Austin down from the top of the slide without letting him go down.
At this point anyone reading is probably wondering, as my husband did later on, why I just stood there and didn’t intercede. I have no answer for that. I think part of me was in shock, part of me was waiting to see how far they would go with this…I’m really not sure. I’m still waiting to hear back from them, but I can say I didn’t sleep this off and I don’t feel better about it today. I’m still livid.
The things going through my mind right now are overwhelming. I’m questioning everything now.
Previously I would have said I wanted Austin to talk and I would do anything to get there. I don’t feel that way today.
What I want is for my boy to never be treated the way he was yesterday. I never want him to try to sign and communicate his needs only to be denied. How confused he must have been! I don’t want him to be pushed to that point again.
I want his therapists to consider that he’s only a toddler, just a little boy who gets tired, frustrated and overwhelmed. I want them to be more concerned about his overall well being, not how much “progress” they can document he’s made and give themselves credit for.
I realize there are times we will have to push Austin some; times where he will be frustrated, but I believe that there are limits. And a good therapist should recognize when enough is enough.
In the last couple months Austin has started waving “bye” at his therapist quite frequently during sessions. It’s his way of trying to tell her he’s had enough.
In the last few weeks he will come find me and just sit on my lap as long as he’s allowed. I believe this is his way of trying to get away from the therapist and the constant demands she places on him. I’m not sure if it’s the length of the sessions that are too much, or if it’s aba as a whole that’s too much.
Austin’s SLP and OT therapists also push him some, but Austin loves going to these sessions. These therapists love on him, hug him, and play with him while they work on things. He’s always happy to go. So now I wonder…why push him to the point of being miserable? Won’t the therapies he enjoys going to be enough? Won’t he talk on his own timetable anyway? Surely forcing him is not going to help anything…
I keep coming back to the roller coaster anology, but it’s truly the only way to describe this. The stress, fear, anxiety, and constantly questioning “Are we doing enough? Are we doing too much?” is exhausting. It’s stressful. It’s stressful on me, my marriage, my other children.
The isolation I feel is something I know others in this type of situation experience, but really, if you haven’t lived this life, you can’t possibly imagine what it’s like.
I don’t know where we’re going from here, but I have a lot to figure out. If anyone out there has an experience or advice they’d like to share, please do!