There is something amiss on the home front. The child is “off”. This happens every so often. I have started to notice a pattern at certain times of the year, like holidays. When his routines go awry, he falters somewhere. The nice packets of expectability are missing and the conveyor belt continues but he cannot shelve the products as he expects… Does this make sense to you?
Tootles is not really “eating”. What he is eating is junk, for the most part. As the parent, this is my fault, not his. He has refused the two basic items that he used to eat – burgers and tuna sandwiches. He will eat neither. It is not a matter of starving him until he eats. He has to have food with his medications for seizures. It is not an option to say if you don’t eat it, you won’t get anything until you do. He is not ill, nor allergic. Is it autism or is it behavioral? Are the two separable? Is he manipulating me? I don’t know why.
A second issue we’re having is screaming. This is not the scream from being frightened. This is YELLING words at a decibel-breaking volume, two inches from my face, while playing an iPad game, playing with a toy, or watching an obsessed-upon section of one TV show over and over. Even when I take away whatever is the subject of the yelling, he finds another and then YELLS about that and so on. This is an attention-seeking mechanism but as I’m with him every hour but those he spends at school, I don’t know why.
This post is not about the food and yelling issues, a recurrent theme in my household. This post is about why. And it is about the answer,“I don’t know why.” My son cannot tell me what’s wrong. In fact, sometimes, when he is “off”, that is the first sign that a meltdown is brewing.
When he was younger, he would melt down without warning, screaming, kicking, scratching and hitting others, and this could go on for hours at a time. As he’s gotten older, the meltdowns are less frequent, less severe and more predictable. These days, they can start quietly and I can see them coming. They still scare me, because I don’t know what the underlying problem is. Whether I need to take him to the doctor. Whether he is suffering. Whether my response will be adequate, timely, or right or wrong.
I am constantly in a freak out mode when the child is “off”. That heightens to panic when he melts down because I fear he is might need emergency care for some physical problem (his dad’s appendix nearly ruptured when he was young) and if I don’t make the right choice, he could suffer.
Once I rule out physical problems, I’m still left with a highly agitated child and no idea from where the source of discontent originates. There are 100 things that could be the source. Even with data, I often have no way of knowing what’s happening, what the “antecedent” is and no way to soothe it other than hugs, kisses, occupational therapy tricks, quiet, and love.
A lot of the time, he will come to me in tears, and say, “What’s wrong?” a prompt for me to ask him. Then, when I ask him, inevitably, the faucet comes on full force and I get no answer at all, just a steady stream of tears. My job, once imminent danger is ruled out, is to just be there. And while I know it serves its purpose, I often feel inadequate.
I die a little bit inside every time this happens. I am helpless to figure it out and many, many times, I can’t and don’t. My son has epilepsy and autism. He cannot tell me he’s had a seizure. He cannot tell me his environment is overstimulating. He cannot express himself. Even if he could, he may not understand what’s happened himself. Sometimes, even I break down and don’t know why.
We are headed toward a birthday at the end of May. It seems every year within a month of his birthday, he becomes dysregulated. He regresses a bit. His listening and learning go backward.
Then, the birthday comes and goes, like Christmas, and he’s back on track, excelling and surpasses his prior heights. Last year, we had trouble with potty training right up to the week of his birthday. After? He decided he was trained and we had smooth sailing (until Christmas… patterns).
I don’t know why we have to go through this every year. Is it just the lack of routine? Whatever the reason, I just hold and love, knowing tomorrow will be a better day. And if it’s not, then perhaps, the day after, or maybe the day after that…