We have been so busy the first month on the year. As Kendal fast approaches her 4th birthday, I'm finding that she is growing in leaps and bounds. Not only does she amaze me by figuring out how to dismantle things (such as: removing the battery covers on the remotes and taking out the batteries, trying to put the key in the hole to open the door, and most annoying.....only showing interest in my toys {cross-stitch, scrap booking, etc.}) but she is growing so fast physically. She seems to be bigger than most kids her age and as strong as an ox. I even have realized that now it is hard to catch her when she is running from me. Where has the last four years gone?
Kendal has also gotten more and more difficult to manage as far as her behavior goes. I think this makes sense simply because she is trying to stretch her legs and find her boundaries. I probably am more controlling than most mothers because I have to be. She has become extremely destructive, more aggressive towards me, and quite possibly trying to show me (or teach me) that I cannot control her like I could when she was an infant. Such menial tasks as dressing have become a major ordeal because she straightens out like a board and refuses to cooperate. Fighting against her just makes the issues worse so I usually try to redirect. I can just picture in her mind saying, "No, I want to do it my way!" I wonder where that attitude would come from??? I guess she is more like me than I even let on.
Because we have been so frustrated with her aggression, and outrageous activity level, we went to the doctor and they prescribed Clonodine. A nice side effect was drowsiness which we were looking forward to with all of Kendal's sleep issues. Wouldn't you know it had the opposite effect on Kendal. After 10 days, Kendal has gotten more emotional (crying spells - very unusual for her) and her activity level has not decreased along with very little sleep at night. We decided to pull the plug on the medication today so we will get her slowly off during the next five days. I am waiting to hear back from the doctor to see what other options we may have.
I have always been against medicating children simply because I feel like we over medicate our kids today. But simply put - Kendal does have a legitimate diagnosis and legitimate issues where medications can greatly help the child. On a positive note, the therapists and teachers did notice that Kendal was more participative in her therapies and that is one thing that we really think will help her. Just finding the right medication and dosage is a little scary.
Through all this I have really relied on my faith that God is with me through this. My problems are nothing that he is not aware of. I am grateful for the prayers I have received and so appreciative of the women in my Bible Study for continuing to pray for me and for our family. Every week God continues to reveal himself in what he continues to bring me out of. I am so thankful I am where I am and that we are not going through this alone. OK, I'm done with my sermon!
Monday, February 8, 2010
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HI! My name is Susan Hogarth in Colorado, and our son Jake is 4 1/2 year old with AS. He is very high functioning as well and your story caught my eye from the Google Blog Alert today. So much similarity with our children! Our son has a 7 base pair deletion of the UBE3A, and unlike others across the country. He walks and free stands, but can't run or jump. He doesn't have seizures that we are aware of, awaiting our latest EEG. He has over a dozen signs and does them well. Also, just received a Springboard Lite and he loves it. Knows his flash cards and pictures very well. He is also very destructive and strong. He can get frustrated when he can't tell us his needs. He can sleep 10 hours but has recently been getting up at 2 or 3am, but then falls back to sleep after we lay with him for an hour or two. Moved him to a mattress on the floor since he was too heavy to lift into the crib. He is tall and thick, 70% in both height and weight. We had him on zyrtec for allergies, which helped him sleep but made him too drowsy during the day and he would collapse at meal time and tend to have "stutter" moments. So have decreased the dosage to almost nothing and he is much better during the day and almost no collapsing, very alert. However, getting up more in the night. We tried Benadryl and Melatonin which seemed to have the opposite affect. Benadryl was awful and kept him up, and he falls asleep fine (Melatonin use) but wakes up and tries to destroy his room before we catch him. We have a big box of books which he will take all books out of the box and read them in the dark. Sorry for my rambling but would love to hear from you and about your daughter, since we may have many links. I haven't met other AS individuals as high functioning as Jake. He "awes" the crowd at the AS walks in Colorado. He almost seems typical, but has the arm angle and laugh that we all love about our AS children.
My email is shogarth@comcast.net. Would love to chat with you about our children. Thanks for sharing! Susan
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