We’re now 4 weeks (going on 5) into a new school year at a new school. I know I’ve been busy, so updating my blog has been a challenge, but I felt an update was in order. We started off this school year on a bit of a rough patch. Without the school fully understanding Squeaker and how to work with him, the first two weeks of school went rather poorly if you don’t count the fact that he actually gets his work done now–at least as far as I know. He also did not handle the lack of structure in the after school program the YMCA here offered. I will get more into that, but the progress we’ve already made this school year makes me very happy. Four weeks into this year and he’s already had two good weeks in a row. The only big problem from this year so far was the discrimination we faced in the local Y’s after school program. Facing discrimination is not easy for anyone, but I think it’s more difficult for people with disabilities to advocate for themselves in these situations. I guess it’s a good thing my son has me.
First, keep in mind that went I filled out the paperwork for my son to stay after school with them, I fully disclosed that he had ADHD and Autism and that he had sensory modulation disorder. Of course, sensory and autism go hand-in-hand, so that would go without saying for most people. At least if they understand autism anyway. The first day I left my son with them, I got a phone call immediately to come and pick him up. They stated that he was kicking, etc., and that they could not get him under control. I spoke to the director and she stated that they could not handle him. They had 15 children per staff member and could not give him the attention he needed, she said. All he really needed was structure, routine, and one understanding staff member. By the time I got there, which took about 10 minutes, he had settled down. It was relatively quiet and he was playing a game…in his own way. Connect Four = filling it up and releasing the chips. No staff members were anywhere near him or trying to direct him to any activities, but they were working with other children. He was isolated.
The director said that they would keep him there just to see how things went, but she wasn’t sure it would work. I offered his mentor as a support, but stated that she couldn’t come every day. We settled into a routine where his mentor came every day and they ignored him. Instead of him being with the other kids, the staff ignored his presence with the mentor there and never really attempted to incorporate him without some considered effort from her. He remained isolated from his peers. One day, his mentor could not make it. I had a staff meeting after school, so I couldn’t get him, but his mentor stated that he was doing well and starting to interact some with some of the kids there. I decided he’d stay–mostly out of necessity–and I was paying for him to be there anyway, so it shouldn’t have been a problem. As soon as they noticed the mentor wasn’t coming, I got a phone call stating he needed to be picked up. This happened two times. And both times, I had to get him. Both times, I got there and he was sitting by himself not bothering a single person. Perhaps he had gotten off to a rocky start (apparently there is a lot of noise right at the beginning), but he had settled down. The last time this happened, I stood and watched him for a few minutes before coming in just to see what was going on. I saw him behave perfectly well during that time period.
No Intent to Understand Autism
A phone call was made to the director prior to my picking him up that day. I asked her directly when they intended to train their staff on how to work with kids who have autism because she admitted they had no training in this area. She told me that they did not do “specific trainings” like that. With the growing population of children with autism in this area, I did not understand why they would not learn about autism. I guess their intent is to refuse to serve this population, because I was told my son could not attend without his mentor. Upon reflection, I wonder why I would even pay them considering the fact that they did not interact with my child more than twice the whole time he had stayed after school with them.
Anyway, I pointed out to the staff that I had been monitoring him for a couple of minutes and he seemed calm to me. I was angry because I had to tell my boss that I could not attend our meeting that afternoon for this! “He always gets calmer when you’re here,” the staff member said. There were two problems with this statement. The first problem? He had not seen me during the time I observed from afar. When he did see me, he calm running up to me. The second problem? If he’s calm when I’m near, I wonder happens to get him agitated when I’m not there.
My Attempts to Help
We had a lengthy conversation. I offered tips for handling some of his challenging behaviors–tips that work nearly 100% of the time. I offered to help teach them how to help him. I got nothing but excuses. They “didn’t have time” to do what they need to do. Apparently, appointing designated areas for him to stay in, giving visual cues, and using short, simple phrases to get him back on track takes too much time for them. These tasks would really take almost none of their time. And from what I could tell, they gave plenty of one-on-one attention to other kids there. When I came in, one staff member was sitting with just one child while the other was with a small group. It’s not that they didn’t have time to help my child. It’s that the other children didn’t have autism and they were uncomfortable with his more eccentric behaviors.
I came to the conclusion that the people there never intended to work with him and I told them that he would not be attending anymore after that week. He’s now at another after school program and doing really well. I never get called and they actually would like to see him there without his mentor because they feel having someone else there is interfering with his ability to participate like the other kids.
A New Routine
In addition, his days at school have gotten better by a lot. He’s had nothing but good reports for the past two weeks aside from one day that he got sleepy. He does his homework, he gets prizes for good behavior, and he seems really happy there. Adjusting to a new routine, while difficult, is possible–if they people helping a child get into a new routine are receptive to doing so. We have an IEP meeting tomorrow to go over his services and talk about what is on his IEP versus what he actually needs. I feel that he will do well in less resource classes and this makes me happy because last year he kept getting more services and he had a one-on-one TA whereas this year, we’re pulling back and he’s got support, but he doesn’t have a one-on-one person all day long. He’s growing up!
How to Handle Discrimination
I just have to deal with facing discrimination from the Y and I’ll be happy. I refuse to let an organization as big as that get away with refusing to serve a child with autism. Plus, they charged me after I pulled him out and they’re going to have to refund that money. I’m also hoping to prompt them to get training so that they can help children like mine. If he can do well everywhere else, I know he could have handled it there if they knew the appropriate strategies. All I can do now is try to prevent this situation from happening to another child.
Have you or your child ever faced discrimination?