March 27, 2007 by Marj Hatzell
Perhaps I was a little too quick with my conclusion.
Let’s just say the past few days (weeks, months) were difficult. I know that NO ONE SAID IT WOULD BE EASY, but what do you do when your child is exhausted and yet cannot stop moving? Or knows that he is not supposed to touch things, but cannot control the impulse to touch it? Or knows that he is not supposed to run outside, but MUST RUN OUT IN THE STREET because he cannot control himself?
This poor child has not stopped moving in months. I mean, we always knew he had energy, more than the average three-to-four-year-old, but this is getting out of hand. He seriously does. not. stop. Ever. He CAN’T stop. I know it is upsetting to him. It is upsetting to us! We are frustrated because he is frustrated. We do not know how to help him.
On one hand I would like to blame it on the seizure medications. They are supposed to make him drowsy, sleepy, slow him down. He is supposed to be improving behavior-wise. He is supposed to be sleeping well at night! These medications are working for Bug Boy. He has only woken up a handful of times with night terrors or other reasons. His meltdowns have STOPPED COMPLETELY except for the occasional, normal, six-year-old temper tantrum. I feel as if it is the answer to our prayers with him. His attention is better, his mood is better, his energy level is better. He is happier! YEAH!
But Bugaboo is not doing well on them. He has been waking up nightly for the past three months, after three months of him getting back on track. In school, he is improving by leaps and bounds. He has a TSS that is working well with him. His teacher and the staff are AMAZING, I kid you not. He has the occasional moment at school when he just will not do something, but on the whole he is doing well. Once he steps off of the bus, however, it is an entirely different story. The seizure meds are wearing off, he has been through eight hours of demanding “work” and is tired. The paradox is that once he passes through the treshold of being exhausted he actually becomes more hyperactive. The more exhausted he seems to be the more destructive behaviors he exhibits. He comes home and stims, stims, stims. He does not seem to be having fun when he comes home. He seems lost, cannot slow himself down, seems empty. We look forward to getting him to bed instead of looking forward to spending time with him. I feel guilty about that.
Bugaboo takes all of my energy. I save it all day so that in the four hours (four until eight) that I spend with him I have enough energy to get through it. Some days I do not. He takes more energy than the average child, I would say three times as much as Bug Boy. I can deal with a typical child all day before I lose it. With Bugaboo I am lucky to make that four hours. As a parent it is frustrating. I am SUPPOSED to deal with this. But some days (like last night) I cannot. I called Darling and told him I was done, DONE for the evening. I told him I could not handle taking them to indoor soccer, even if it was an hour break for me. He dropped everything and ran home, wolfed down his dinner and took the boys to soccer. Once there, he and I walked the track the entire hour. It felt GREAT and gave me enough of a recharge to finish the evening.
The moral? I need to get back on a consistent gym schedule. I have not gained weight and I have been eating better (and, surprisingly, less) than I have in years. I feel well health-wise. I just need to relax more. Relax=exercise as much as humanly possible, in Marj-Math. So, back to daily walks and three to four trips a week to the Y. I finally renewed the membership after forgetting to stop by three weeks in a row!
Magic Pill? Last night I wanted one. I HAD IT. It was especially difficult for Darling who had never really seen an older child with severe autism. I was telling him about the different children last night and he kinda sobered up. He pointed out one little boy (about six) and said he thought that Bugaboo would be like him in a few years. He asked me if he would be. I just do not know, I wish I had those types of answers. I wish I knew what to expect. It just does not work that way. Darling and I talked about how it is going to become more difficult before it gets better and we just have to be prepared to deal with it. We have to work on our acceptance of this situation and realize that there is no “cure” to speak of ( I know, there are those out there that spend thousands if not millions to find “cures” but we just do not believe that is for our Bugaboo.). We do not know what tomorrow will bring and we are just going to have to deal with that. It does not make the situation any easier but it will bring us peace. Realizing that something is out of your control is scary until you realize who IS in control.
Magic Pill Today? I dunno. If there was a way to help Bugaboo slow down, to calm down this level of activity, we feel he would be happier. We just do not know what it means medically and will not know until the results of the EEG are in and we can speak with the Neuro. We may be able to alter his meds so that he receives more of one and less of another. Who knows if it will help. As a last resort, we may try a hyperactivity medication, although I am DEAD AGAINST it. Everyone else in Bugaboo’s life wants to give it to him. HE IS FOUR!!!!! I know it may help him but, HE’S FOUR!!! We shall see. I do not know if we have hit rock-bottom yet. That might sway me.
Have a nice day. I am going to take a loooooong, hot bath.