So I took some time off from writing the blog. Back in mid-December we met with an attorney to discuss the issues we were having with Dayna and the school district. He seemed to imply the blog wasn’t such a great idea and it could hurt us in the end. Well, that’s probably true. But the truth also is that a traditional legal battle with the school district is just not in the cards for us right now. While we hope they do the right thing for Dayna, it will have to be without lawyers for the time being. The cost is too high for a chance too low to win. If Dayna is referred to attend a new program, it will have to be on the school district listening to us alone, and our pleas for help.
So that brings me back to the blog, time to get back to what it was originally intended to do. Give a glimpse into life with an autistic child that discusses areas you may not always think about. The past couple of month’s blog entries were all about the problems we have with Dayna going to school and what will happen to her next year. That seemed to take over the blog. So, I will use this one entry to catch everyone up on what is going on. And after this entry, I will write about the things I wanted to write about when I started. At the end of each entry I will provide an update on our school situation, assuming there is one to talk about.
Here’s the big update…..there is none. That’s pretty much the truth. Today is February 3, 2015, and this morning Dayna came in our room around 5am saying ‘No School!’. For the next 2 ½ hours it was yelling, crying, demanding and fighting until we eventually got her on the bus. Sound familiar? It should, I’ve been writing about that since the beginning of school. Here was part of my post from the first week of school:
FRIDAY: Last day of the week! We’ve almost made it! We go in to wake up Dayna, and she would have none of it. She did not want to go to school, and right then and there we both knew the next 45 minutes would be hell. It was….she screamed though the bath, getting dressed, eating breakfast and getting on the bus. I say screamed, in reality it’s a constant, loud chant of a couple of choice phrases. “No School!”, “Stay home today!”, and “Half Day!”….over and over and over again. The last one, “Half Day!” was her last resort.
So nothing has changed. From that day forward it has just become worse, not better. We follow the ‘protocol’ the school gives us, we don’t have a choice. If we don’t follow it, it gets thrown back at us as not accepting the help we were given. They stopped coming to the house in the morning to help out, that was fine with us overall. In December, not long after my last post, we received a call from Child Protective Services. In my last post I wrote about fighting with the school system and said ‘Strap in folks, it going to be a rough ride.’ I had no idea how rough it would become. Someone within the school district called CPS claiming child neglect on our part and had an investigation started. Some of the items that were mentioned as concerns were things I wrote about in this very blog. Other items contradicted what I’ve written about. Most importantly some items that we were being accused of were the result of someone who had been in our house. They spoke about Dayna eating the same thing for breakfast every day, pancakes, lemonade and Oreos. Yep, I described that in my first post. Autistic children do not like change, some will only eat one or two things total. We were already dealing with Dayna not going to school, now would not be the time to change up her breakfast. Just the sight of other food on the counter is enough to upset Dayna, even if you’re just making lunch for one of the other children. It was also claimed that we let Dayna pick at her bedroom drywall. Remember that, I posted a picture of it. I’ve repaired it three times already, and we already had two quotes to have the wall changed to a form of paneling. They used that against us to say we allowed it. They said Dayna went to school dirty and with an odor. If you look at my post about damage in the house, I mention the water damage from Dayna splashing in the bath. She takes a bath at least once, if not twice a day. Its part of her routine, and you don’t break the routine. Even if it means not getting a shower yourself because she uses up the hot water. Ironically, one of my biggest concerns with how they were handling the situation with Dayna was that they forced her to go to school one day in her pajamas, no bath at all. Somehow that got turned on us instead. The list goes on and on, and the ridiculousness of the entire investigation makes Seattle’s final play call in the Super Bowl look like the smartest decision ever. It’s not worth going more into it, other than to say it was a horrible experience that was a waste of CPS resources. It cost us money and time, and it caused us undo stress. It was mean and vindictive on someone’s part, we will never know who. The good news is the investigation showed we had done nothing wrong and were doing everything we could to help Dayna.
Where does that leave us? Dayna is still attending her current school. The school of course claims she is happy and excelling. We follow a protocol to deal with her behavior based on their psychologist’s recommendation, which in turn is based on ABA therapy. It’s not working, but we muster on. Next year she will be in high school, but there is not an existing program for her to enter into within Carroll County. We have asked the county again to send her to a non-public school, Forbush at Glyndon. They have a very good program which includes the vocational and life-skills training Dayna will need as she grows into an adult with severe autism. They also have a longer school year, eliminating the problem of Dayna regressing during the summer months like she does in a traditional school year. We would like to have her attend now to see if it would help reduce the distress she has every morning going to her current school. They say: ‘There is no way to prove that would work’. We say: ‘Correct, but she should attend there anyway since you don’t have a high school program with Forbush’s capabilities, so why not give it a try now?’ It makes sense to us, but not to them. And they hold the power.
In the end, Dayna is still telling us every day she does not want to go to school in many ways. I have written about since I started, it’s a battle every morning. Kiley and Sean are hanging in there strong, kids are resilient that way and Kiley has become a pro at dealing with it. Deb and I are pretty worn down. In a way we are captive to the situation. We don’t get out as much as we used to. Getting any kind of overnight time is almost impossible now. But we have great family and great friends who help and although there are times we want to crawl out of our own skin in frustration, we have each other and eventually we find times when we just start to laugh. We either have really odd senses of humor, or some bizarre form of Stockholm Syndrome….who knows. And when it all really hits the fan, there’s always wine!
One more thing….I want to send a big ‘Thank You’ for all of the information, contacts and ideas sent to us over the past couple of months. They were and are all appreciated and needed, it all helps!
From this point forward I am going to try and make this blog about everything but our situation with getting Dayna to a new school. As I said, I will give short updates at the end of each blog entry if we have one. I want to get back to writing about all the other nuances, there is so much to talk about and teach about. Personally, I need to talk about something else!
I’ll even end this post on some ironic humor I found in December, but back then I was not in a humorous mood to post it at the time. Enjoy the irony of the band name playing at an autism event I stumbled on…. Thanks for reading!