So the wall is down for Matthew......and I don't really know how I feel. I guess I need to start by filling you in on what has been going on.
When I get my mind set to something, I have to make it happen. Last Wednesday, I went to Glenmont to pick Matthew up, and I went in his room to see a map he made. That was when I saw the divider and I haven't been able to get it out of my mind since then.
I called a local neuropsychologist who Matthew saw over the summer to see if she could go in to Matthew's school and observe matthew in his classroom and give me a sense of how he was doing. I wanted to know her thoughts on the divider, and how matthew was doing in his current placement.
Today I spoke to the neuropsychologist after she did a one hour observation of Matthew in 2 thirty minute blocks. As I heard her report on her observations, my heart was in my throat and I wanted to run and grab Matthew from his classroom. My emotions right now are very raw. It is a struggle to be with matthew- he spins in circles a lot recently, is often bothering his brothers, can be set off quickly over nothing, makes a lot of noises, and says a lot of the same things over and over again, and while all of this is going on, he typically is playing the song "i whip my hair back and forth" over and over again loudly in the background- essentially, it is enough to make me crazy.
however, I am his mom- this is a position paid in hugs and kisses, all while I am trying to do the laundry, get homework done, make dinner, and take care of 2 other boys. I don't have a team of therapists working with me. I don't have a classroom of aides working with me. It is just me.
I was heartbroken to hear that while the class was listening to read aloud on the carpet, Matthew was at his desk. Sure, he was "included", but if you are the ONLY one at your desk, what does that say to the others?
I was saddened to hear that the reason they were using the divider is because Matthew responds to everything and everyone and often misreads things- as the teacher said, "the wall protects him from himself". How can anyone respond to everything and everyone? But Matthew does- the sound of kids breathing, kids tapping their pencils, the clock ticking, the wind blowing- EVERYTHING in the world is a distraction for Matthew.
The wall protects him from himself.......That makes a lot of sense to me, and I want to scream and kick and cry. I hate that! It breaks my heart.
The benefit of the wall, was that Matthew was having fewer confrontations with peers- I would counter that he was having fewer interactions with peers, and therefore fewer confrontations.
I want them to help Matthew- teach him to recognize when he needs time in a quieter space- teach him when being behind a "wall", real or otherwise would help him to to function.
I want there to be a plan to help him gain social skills. I want the staff to help him grow and to get as much as possible out of his school time.
It isn't enough that Matthew is spending his days at school. I have to know what he is doing, and I have to trust those who are caring for him. I have to be able to trust that they are caring for Matthew and pushing him to his limits socially, emotionally, and academically. I feel like each of these areas are not being planned for effectively right now, and maybe not for the past month or so.
It is exhausting to be so on top of everything for Matthew. I wish I had known more about what was going on for Matthew. I don't even feel like I knew what questions to ask, but I do know that we owe Matthew more than what we have provided for him, and I am hoping that we can have a CSE meeting in the very near future so that we can address all of Matthew's needs. This may include having a quiet space created for Matthew, where he can be taught to go when he needs a break to learn or focus. It may mean that we plan to meet more often to discuss our plans for Matthew. It may mean a lot of things. I know that Matthew's team is a smart team of dedicated professionals, and I know that they care for Matthew a lot. I am committed to working together to give Matthew the best, but first I have to cope with the emotions I am feeling and refuel my tank so that I can effectively advocate for matthew.
- I am a single mom of three amazing boys! All three of my sons entered my family through adoption. All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!