Monday, June 25, 2012

Autism; Screaming for Hope

I am currently working with a teenage boy who is autistic, nonverbal, and not potty-trained. I've been his respite worker for the past 7 years, but never had a consistent or frequent schedule. My desire has been to teach him to talk, because he has spoken, though quite infrequently - but that requires consistency. This summer, I have the opportunity to try because I'm working with him for 30hrs/week. I have no training, so I'm reading, and feeling quite unqualified, but I am the best he has. That is not a self-compliment; it's an assessment of the level of desperation that his situation should evoke in anyone who is concerned for others.

I've been speaking to his parents about what they want for him, and what he receives. He doesn't receive much.

HE GOES TO SCHOOL.
Not quite sure what they do... except that only 3hrs per week is said to be dedicated to speech- that isn't enough for a nonverbal autistic child, and whether it's happening- he can't tell his parents. BUT we do know that the school keeps asking to reduce his hours because they've given up..... because of THREE hours! THREE stinking hours that can't possibly do the job.
During the remainder of his time there, well according to a witness, one day he was strapped in a chair in front of the TV for several hours so that the teachers could focus on other students. We're not sure about the rest.

HE RECEIVES BEHAVIOR THERAPY.
Someone comes to his house for 4 hours per week, to teach him things such as putting on shoes, washing hands, staying out of the street, etc.

HE RECEIVES RESPITE CARE(that's me).
My job is to keep him safe while his parents get a break. The rest of what I do (taking him hiking, bowling, swimming, and trying to teach him to talk, etc)- that's just perks- none of this is officially recognized as services he's receiving, and if I leave, it goes too.


All I know is, this boy is overwhelmed when he tries to communicate, and can't. He resorts to biting and hitting, but you see the frustration in his eyes. He wants out. Yet he's trapped, and the more time goes by, the more trapped he becomes.

It frustrates me to no end. He deserves so much more. He's a person, and he's trapped, unable to communicate even in alternative ways (yes, I want to give speech a shot, but if that doesn't work, then there are other options to try too)- not because he can't learn, but because the services he has received are not enough.

So I'm trying to figure out how to advocate and create a successful and viable alternative educational program. By viable, I mean largely, fund-able. His parents aren't rich though they both work, so the question is, how much would it cost, and then, what would the school system fund, and what would regional center fund, and could we raise the rest?

I need to help him- someone needs to help him. Anyone can help him; I don't care. For now, it's me. Maybe come fall, we could have actual trained staff in place- but the question is, "How?" How do we design it? How do we push/fight for it? How do we finance it? I'm coming up with ideas; I'm not as clueless as I was 3 weeks ago, but I would sincerely love and welcome any advise or assistance with any area of this effort.

2 comments:

  1. It has been years now since you wrote this blog, like 5. But I stumbled upon this page when looking at a different blog of yours, and I just had to ask if the boy ever improved. My heart immediately went out to him, and to you because I appreciated your love for this person that God made. It IS a desperate situation. If by chance you see this comment and could post an update, that would be great.

    ReplyDelete
  2. It has been years now since you wrote this blog, like 5. But I stumbled upon this page when looking at a different blog of yours, and I just had to ask if the boy ever improved. My heart immediately went out to him, and to you because I appreciated your love for this person that God made. It IS a desperate situation. If by chance you see this comment and could post an update, that would be great.

    ReplyDelete