It's hard not to get discouraged. As I have alluded to previously, B is not progressing with language the way we had hoped. He is doing fabulously with his programs. He gets it and they can teach him. The goal of ABA though is to teach him to learn. At some point, he is supposed to start being able to generalize and learn things on his own. It's obviously not possible to teach him everything in life in such a simplified, repetitive manner. We need to see more of him learning things on his own... imitating on his own... catching up so to speak.
There are 2 conversations in the last couple of weeks that are really bothering me. Both were with the supervisor of our team. One day when I was expressing my concern about language, she mentioned that we always talk about "best outcome" which is amazing and a miracle but that there are lots of other kids who may not quite get there but are so close and still have great lives but there is just something that still holds them back from losing their diagnosis and achieving "normal".
And then today, we had a conversation about alternate communication devices. When B was in special ed, they started using PECS (picture exchange communication system). It was a book of pictures on velcro and the goal was to get B to give the teacher a picture to express what he wanted or needed. I didn't like it. It's not what I want for him. I want him to talk. When we started ABA, we agreed that it would make sense to see if we can get him talking before we start looking for alternatives (which are meant to be a stepping stone to language - not a replacement). But this morning, we revisited the idea. We're 6 months in and his language (aside from the singing) has really not taken shape. It's our choice but we've been asked to consider whether we want to try some sort of alternative communication (perhaps utilizing the ipad) to see if it advances his language skills.
In short, these 2 conversations are tearing me apart. I'm not ready to downgrade my expectations. We have so much invested - all of us - to expect anything less than a miracle. We have turned all of our lives upside down and it's hard. Really, really hard. And while I know that it's the right thing for B regardless, I have a very hard time stomaching the idea that we could wind up with a kid who carries around a device to talk for him. Not B. Not my perfect, sweet baby boy.
None of us are giving up- that's not what this is about. I know the greatest rewards often have the biggest challenges. Blah, blah, blah. I want this blog to be about hope, faith, perseverance. And most of the time it is. But right now, all of that is superseded by how I feel at the moment: This is not fair. This is not how it was supposed to be. And, in a nutshell, it sucks.
<3
ReplyDelete