I am an autistic child's mother.
Most days it's just a diagnosis, something I know is there but not life shattering.Some days it's something I think about in passing, like yesterday's weather.But today?Today is a day I'd sell my soul to make it all go away. Today is a day that I sit in my car and cry because there's no one around me that gets it.I love the people in our life, and they're all understanding and supportive, but they don't share our path in this life.Today is a day I break. Today I am raw. Today I hate all the acronyms. I hate others with "normal" kids, who get the "easy" path through life. Today I am angry that my son is the "1 out of X boys" (who is on the autism spectrum). Today I'm failing. I have to be because he is trying so hard and still not making enough progress, according to education directors. Academically he's fine, he's better than fine even. Socially he's behind. He talks too much, moves too much, knows his limits too well. "He's not ready", I heard. I never let him know I cry about him.My child has his own struggles, I don't want to add to his heavy burden. I'm the mother, he needs me to be strong and tell him everything is fine. But today, it's not fine. I'm not fine. This is the face of the mother of an autistic child.I'm broken, he's perfect.
Last week I had a bad day. The kind of bad day that saw me crying in my car, wishing life were just a little easier, a little more fair and me a little less failing at it.
I ended up taking a selfie and posting about it, hoping someone else might feel the same way and realize they weren't alone. It started when Nixon had an in-class shadow day at the school he would be potentially attending in the fall. His current class is only for kindergarten and first graders, which means a new school for him in the fall. Nixon attended the day and when I picked him up I had a meeting with the director of the new program. It basically boiled down to the program and Nixon not being a good fit. I took it harder than Nixon did. He was mostly upset because he thinks 2 of his friends are going to that school and he wanted to go there with them.
We had another in-take interview on Monday. Nixon has another in-class shadow day on Tuesday the 14th. Even though this school is in Baltimore and would mean a much longer bus ride for him daily, the school is a better fit. It's not just academic based, it's also social skills and play based. While Nixon wouldn't be around general education peers, he'll be in a setting in which he wouldn't be seen as a distraction.
Let me just say this, about the first school Nixon visited: When a special education program tells a parent that their child is a distraction to the rest of the class, which is also a special education class, it's probably not a good fit. While this school aims at integrating special education students into general education classrooms, it felt like they want too much from children already trying too hard to handle school. A child who is participating and trying to be a part of the classroom, perhaps being too excited and too loud or impatient, shouldn't be automatically dubbed a "distraction to the other students". (Nixon was shadowing a 2nd grade classroom, so the work is an entire year beyond him. He did try to be included in the class and did contribute during math and vocabulary. He fell asleep during the reading time mostly because he was only listening and he was trying to sit still like he was asked too.)
Most of the time, I can "forget" Nixon has autism. It's just a couple quirks we've accepted. But days like last week make me weak. I cried, I gave into the sadness. I took time to mourn the picture I had of what 2nd grade would be like for Nixon.
Then I put on my big girl pants and moved on. Nixon came home from school. We talked about his day and we laughed at birds outside.
I don't break as often as I used too. I'm not one big raw nerve walking around anymore. Now, when I breakdown it's because I need to get it out. I'm not ignoring my emotions or trying to force myself to be "okay".
I'm not perfect, but I'm not as broken as I used to be.