Ahh relief. For a brief few minutes we were just excited that there was a solution to a problem. However that quickly faded as other behavior issues began to present. Drooling was one of them. After a child is 2 they usually do not keep drooling on themselves. This alone took a lot of my time reminding her to stop drooling. Also bed wetting. Countless hours were spend changing sheets. All of which doctor after doctor told me were normal. Then there was a break through. The physical therapist said "I'm not sure what it is but something is a bit off." I thought what? Someone else finally sees it too! Then the diagnosis seemed to all go along the lines of auditory processing problems. Then after a trip to the pediatrician we found out about absence seizures. I thought all seizures meant you were on the ground convulsing. No not these ones. But it explained all the drooling, and the bed wetting.
By then I had already began testing different things on her. I eliminated MSG from our diet. I could not believe how many foods had it in there. By the time I was done there was nothing in my cabinets but things with one or two ingredients. More and more time and brain power was spent on learning what foods our bodies do best with, herbs, and nutrition. I also noticed that red food coloring had a large impact on her. After the MSG and red food coloring were eliminated the seizures and the drooling seemed to get so much better. I tried so many different things on her. We have tried allergy testing. She has no allergies. We tried heavy metal testing. She is fine. We have not vaccinated her.
Recently she has gotten worse. I'm not sure honestly if she is the same and my level of dealing with it has changed, or if she is really worse. We went back to the neurologist. The type of seizures has changed. She is now having convulsion seizures in her sleep. But this time I also came armed with my "list". I had written down all of her "odd" behaviors. My list was met with a sympathy look from the doctor. I was then handed a questionnaire. I filled it out as carefully as I could. As I read the questions I realized what the test was for. It was a autism questionnaire. When I read the questions and noted how many times I had to check the "all the time" box I knew what the results were going to be before I had finished filling it out. The next day the doctors phone call confirmed what I already knew. She is autistic. Her IQ when it was tested at 3 was well over genius level. It is because of her "smarts" that others, and doctors didn't see anything wrong. Her abilities to repeat information she has heard kinda threw people off of where the focus should have been. Autism is not how much you know but how you interact, and behave. When she has a full blown melt down because one of her toys is touched by someone else that has nothing to do with her "smarts" but it does effect the whole family.
I have spent the last 7 years trying to "fix" her and make her better. I never thought it was one thing that would help but I did think that there was a magical combination of things I could do to make her better. After all it was a "magical combination" of things that fixed the morning sickness so there must be a fix for her too. So now what do I do now that this can't be fixed? There is no magical pill to fix this, or combination. The diets and treatments that people talk of all the time for autism get there children to be better but not perfect. She is already high functioning, and I'm pretty sure it is because of all we have done already. So what do I do now? How do I help her now? I can't fix her so what do I do with her?
We are planing on trying something new so that our house works better, and her frustration levels stay low. She has been very frustrated lately. She will be getting her own room. Her own space. Her own tape. Yes tape is very important to her. She will be able to go to HER space and just be herself. No one touching her things. We hope that this will benefit the whole family. This should bring her frustration level down, and in turn the rest of the family's frustration down. Her bedroom will also be in a spot where it will be much easier for me to keep tabs on her.
So how does one change from fixing mode to dealing with it mode. In our case there is no one thing that caused this. This has always been her. From birth this has been her. Because of her birth defect we know that at 6 weeks gestation, there was a short time that there was a lack of blood flow to her. So I guess that means we are lucky she is here even. I'm pretty sure that has something to do with the way her brain works too. Nothing could have prevented it, and there was probably no real cause for it. Just a freak thing that happened. So now I guess we have to learn how to cope and deal with the cards we are dealt instead of fixing them.
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