Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 ....becomes more of a habit than the burden it is perceived as by others, fibro or not. I have a child with Rubinstein-Taybi Syndrome. When she went to camp for a week, I wasn't sure what to do with myself! She does take up an enormous amount of " watching " , what I prefer to call vigilance. Her multiple anomalies are what my doctor thinks caused my fibro. He says its kind of like post- traumatic stress - I fought a war of sorts to keep her alive until she was big enough to survive major surgery. Therefore, no sleep. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 My personal favorite is when people say...She does not look autistic. I then ask them what exactly autistic looks like? People are misconceived into thinking that autism is a problem where a child sits quietly rocking in a corner...NOT AT MY HOUSE! That sterotype could not possibly be further from the truth where Jocie is concerned. Last week at music class someone stated that Jocie did not look autistic. After my generic repy as stated above, I told them, " I am sorry you don't think so. Here, I will sit back and amuse myself watching while you volley a conversation with her. " She just stared in disbelief...DUH!!! Jocie is not the follower, she is the leader, and yes, she is treated a little differently at music and gym. When everyone else is walking in a large circle, she has to be in the middle...not causing anyone any harm, but in the middle. Sometimes she will not participate. That is ok...she goes at her own pace. I am protective of my daughter, just like any other mom. I have already stated outloud in class...If ANY of the other mothers want to ridicule Jocie's boundaries with Jocie, they may feel free to do so. By saying this, I am not saying that I do not have her under my control 100% of the time. I most certainly do. I do not feel that having a learning disability gives one the right to let their child run wild. Nor, do I allow her to ruin anyone else's class time by her actions. I have seen many people with normal children, who choose to not take control and let them do whatever they want. I expect far more from Jocie. Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 My personal favorite is when people say...She does not look autistic. I then ask them what exactly autistic looks like? People are misconceived into thinking that autism is a problem where a child sits quietly rocking in a corner...NOT AT MY HOUSE! That sterotype could not possibly be further from the truth where Jocie is concerned. Last week at music class someone stated that Jocie did not look autistic. After my generic repy as stated above, I told them, " I am sorry you don't think so. Here, I will sit back and amuse myself watching while you volley a conversation with her. " She just stared in disbelief...DUH!!! Jocie is not the follower, she is the leader, and yes, she is treated a little differently at music and gym. When everyone else is walking in a large circle, she has to be in the middle...not causing anyone any harm, but in the middle. Sometimes she will not participate. That is ok...she goes at her own pace. I am protective of my daughter, just like any other mom. I have already stated outloud in class...If ANY of the other mothers want to ridicule Jocie's boundaries with Jocie, they may feel free to do so. By saying this, I am not saying that I do not have her under my control 100% of the time. I most certainly do. I do not feel that having a learning disability gives one the right to let their child run wild. Nor, do I allow her to ruin anyone else's class time by her actions. I have seen many people with normal children, who choose to not take control and let them do whatever they want. I expect far more from Jocie. Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 I agree 100% with this Brocky with his autism is still my son that I love dearly no matter what. I don't consider him to be a burden but my child who just needs extra attention and I am happy to do it for him because I am his mother and I will do whatever it takes for him. Not saying I don't have my moments...like 4:10 this morning when he decided that he'd had enough sleep even though Mommy hadn't ...but, hey, I don't sleep good anymore anyway so what's another day added to the whole sleep deficit I've got accumulating. Jen Being a Special Parent ....becomes more of a habit than the burden it is perceived as by others, fibro or not. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 I agree 100% with this Brocky with his autism is still my son that I love dearly no matter what. I don't consider him to be a burden but my child who just needs extra attention and I am happy to do it for him because I am his mother and I will do whatever it takes for him. Not saying I don't have my moments...like 4:10 this morning when he decided that he'd had enough sleep even though Mommy hadn't ...but, hey, I don't sleep good anymore anyway so what's another day added to the whole sleep deficit I've got accumulating. Jen Being a Special Parent ....becomes more of a habit than the burden it is perceived as by others, fibro or not. Quote Link to comment Share on other sites More sharing options...
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