These are the words that came from my daughter's mouth this summer when she got in trouble at camp. After setting her straight about expected behaviors, no excuses, this really made me pause. Is my daughter getting special treatment because of this one little chromosome. Am I treating her differently than an uneffected child because of things I think she can or can not do? How are my expectations affecting her life?
I already know that it is having an impact at school. Last semester, I received a call from her teacher about an altercation with a fellow student. This other student was suspended from school, but my daughter was forgivien because "she can not control her behavior, and the other child can". Part of me is glad that she did not receive this punishment, but I have to wonder if it is really true. I know for a fact that I can not play tennis. I have no depth perception, so I cannot tell where the ball is in relation to my body. I also know for a fact that I can not give my daughter multi-step instructions. She would never be able to remember all of them, and would not be able to abide. There are limits. The hard part is recognizing where they exist.
I heard a tale this summer at a symposium that I attended. One of the speakers, a mother with 2 effected boys, was asked a question about potty training. The first one, she said, was very normal. He was trained by 2 1/2 but that was before we knew about Fragile X. The other boy, who was diagnosed as an infant, took 7 years. Clearly, an expectation affected the outcome. I hear girls with fragile X are poor at math. I happen to be very good at math. If I make an assumption that my daughter will be bad at math, am I dooming her to a foregone conclusion. I am certainly frustrated by her difficulties, because it is something that I found so easy, but just because she finds it difficult, does not mean that it will not fall into place. Do I keep pushing her, and patiently spend 40 minutes with her to complete a task that should take 10? When do I push, and when do I retreat and formulate another plan? Reading and writing are another issue with her. We are now writing letters in rice, and building them with play-doh, anything to add a tactile element to the process, but I can't say that it is working. She has sensitivity issues and can't stay with it for long - or does she? Is this another convenient excuse to get out of doing her work? She has never liked play-doh. But she also has a very short attention span and never stays with any project for long.
My daughter is a master at manipulation and negotiation. She has all kinds of tricks up her sleeve to help hide her shortcomings. She is very good at getting people to do things for her and she does it with sweetness and charm, which may prove useful in future life, but I don't feel like it is something I can support. She is well under way into the new school year, and she is really testing all her teachers. Things are harder, and she is feeling overwhlemed, so she is pulling out all of the stops to avoid doing her work. I am getting a lot of calls about arguements and refusals. I know this is her way to gain control of the situation, and to avoid demonstrating her inadequacies. She is 8 years old, and self realization and esteem are becoming issues this year.
She is always changing the subject. Is this a part of fragile X because she can not remember the current conversation, or is she simply diverting to avoid something she doesn't want? When she was 4 years old, her pre school teacher was trying to get her under control. In the middle of her tantrum, she blurted out - How is your baby boy? Considering that his son was in the hospital, this remark was enough to send him off course. Diversion and avoidance were successful. Was this a purposseful action on her part, or did the idea suddenly pop into her head, and she impulsively blurted it out? She was only 4.
She knows exactly how to push buttons, and mine more than anybody else. I have to take a hard look at myself, and really figure out what type of ground work I am laying down here. I have to admit that giving in sometimes certainly makes my life easier. I bet I am not the only one who has tied a shoe to avoid being late. I know this is an issue all parents face. I just wish I knew more about what was going on in her head, so that I know if something is futile, like me playing tennis, or just simply difficult. How long do I pound my head against the wall?
On a good note - she has never repeated this excuse. If this truly is manipulation, then perhaps my daughter is a LOT smarter than even I give her credit for. People say she misses social cues by not reading faces. She is reading something, because she is almost telepathic when it comes to reading emotions. Is there an oscar catagory for this because I am getting really good at acting like I have none.
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