In the past ten days, my daughter has had two major improvements and one minor set back to her ability to navigate the world while living with Autism. Let me explain.
Last week sometime, I can’t remember the exact day, Sissy came to me with a guitar. This is a bright pink, black, and silver plastic toy guitar that runs on three AA batteries. She got is several years ago from her Uncle. He has subsequently bought both the kids plastic drums that come with a myriad of shakable music toys inside. My brother in law thinks its funny to send my kids noise for Christmas. (Though it’s better than the glitter bombs the other ones sends.) So last week the guitar stopped working, so she brought it to me while I was straightening up the kitchen. She looks at me and says “Mom the guitar is broken and I tried turning it off and back on but it’s still broken.” This struck a cord of pride inside me. She had used her own mind to troubleshoot the problem herself and when that failed she came to me. All I felt was pride that day while changing the batteries in the toy. Consequently, the guitar is still broken and unless I take the whole thing apart I can’t figure out why it wont light up and play those loud noises anymore.
Then a few days ago, the kids were playing in Sissy’s room when one thing lead to another and the baby monitor in my room began to spit this vile noise. Sounding much like snow when your TV antenna is out of broadcast (for those of us old enough to remember “snow”), the kids aren’t a fan of this noise. It’s as if the gates of Hell have burst forth into my living room and brought every off-key marching band with them. My kids
may as well glue their hands to the sides of their heads in that moment because those hands are going to be there anyway. They are extremely sensitive to certain noise and this one just sets them off. I ask Sissy to go plug her monitor back in, this was the most likely reason for the hateful noise coming from the parent unit. She came back with, “It’s already plugged in”. Next thought was that it must be turned off, but she informed me that it was turned on. I was out of options thinking that she just hadn’t done what I’d asked her to do, which in always a strong possibility when you give multiple-step directions to a child with autism and ADHD. She gets distracted. I was in the middle of cooking dinner and couldn’t leave the stove, so it would have to stay that way until I could get to it. About 20 minutes later, the monitor in my room is suddenly quiet. Just as I notice this, Sissy comes bouncing into the office that sits adjoining the kitchen and declares “There, that’s better! Mommy the ‘momitor’ (her word) was on channel B, but now it’s back on channel A and it’s just right!” Again, I found myself being impressed and proud of my little girl.
These situations may not seem like much to you, but in the world of autism, these are huge events! For the first time in her six small years, my daughter stepped up to the plate, put on her thinking cap and was able to solve not one, but two problems using an ability most of us take for granted. The ability to think through a problem rationally and decide on a course of action isn’t something that comes easily for a person with autism, particularly for a child with autism. My daughter, for years, would slam toys when they didn’t work. She would get very frustrated and it would become an epic meltdown when something unexpected happened to a favorite toy. My daughter was able to think about the problems facing her, the broken guitar and the noisy monitor, and was able to go through the process of trial and error until, at least in the case of the monitor, she was able to fix the problem to her satisfaction. She’s never before exhibited this level of reasoning and though process. Her brain just doesn’t compute creativity the way other people’s brains do and she’s only able to look at what’s there in front of her and see exactly what’s there and nothing more. This is a huge step toward gaining her independence some day. I fear for her future everyday. I fear that she would not be able to live the independent life I had dreamed for her. I wish for to get married and be a mommy someday, have a job, be able to work the toaster without burning herself. In reality, my husband and I are planning to build a home for her on the same property as our retirement home, so that she could have her own space but still be safe and not a danger to herself, if it came down to that. I’m so proud of this step she has made.
But for every two steps forward, we are forced to backpedal at least one and that one was today. Today was the day of the first quarter awards assembly at Sissy’s elementary school. She received 3A’s and 1B on her report card and an ‘S’ for every subject that doesn’t have an official letter grade. She made the honor roll with her report card, but because of her disability, Sissy is emotionally about 4 or 5 years old. Whereas, she is six years old physically and academically, is doing the same work at level with the average 8 year old. I have a cousin who is 9yrs old and she’s only one grade ahead of my daughter who is 6. Sissy doesn’t understand the “why” of things. She doesn’t know why some kids get their names called and some kids don’t. She doesn’t understand why she only got one award, but someone else may get two. She doesn’t comprehend the difference in these awards and this is often very upsetting to her. Usually, it’s not too bad and I can calm her down in time to go back to class. Today, not so much. She was nearly inconsolable. I got permission to take her to the bathroom, where I washed her face and attempted to calm her down. I thought I had been successful until we returned to her class, and she took her place as line leader. She burst into tears again and this time the kids in line directly behind her noticed she was upset, asking what was wrong and showing genuine concern on their tiny second grade faces. Her teacher was at a loss, she had never seen Sissy break down that way and couldn’t figure out what had happened or why it had taken control of Sissy so quickly. I did my best to explain (and sent an email to her when I returned home with a further explanation), but it’s hard when the school claims they don’t see my daughter’s disability. Add all these questions and the feeling of rejections to the fact that her daddy disappeared on her two months ago and the assembly is a disruption to her normal routine and it’s no wonder her little body couldn’t handle it. She is so brave every day. I am so proud of her.
Two steps forward, one step back.
Twice the progress, plus a setback.
This is life with autism. We have learned to celebrate the little things, like her first time attempting to troubleshoot a problem, and we take the setbacks in stride. She was clearly heartbroken and I almost took her home, fearing she wouldn’t be able to regain control of herself. I’m glad I didn’t. She had a good rest of the day and came home smiling. Her body back in balance and her emotions in check once again. Ultimately, it proved to be a “rough moment on a good day” and we all have rough moments. We don’t have to let them ruin our day.