Tanner had a vision therapy session yesterday with a new therapist. She had been here once before, with his old therapist, just to meet us and get the "background" on who Tanner is and his environment and abilities, but this was his first session. I was not home and Brian came in a bit later. Our nanny was with Tanner. As some of you may or may not know, mouthing of hands is a common side effect for CDKL5 kids. The therapist proceeded to tell our nanny that the mouthing of the hands was simply a "bad habit" and "he knows better". After our nanny tried to explain that it was a side effect, not a bad habit, she then stated that "we needed to be the adults and stop letting him tell us what he wants. it's just a bad habit". When I heard this, I immediately contacted the therapist, provided her with a snap shot of side effects from the CDKL5 website, and told her that her comment was ignorant and until she educates herself on Tanner's disorder, she is no longer welcome in my home. The reason I am telling this story is because lately, things have been said to Brian and I that are simply inappropriate.
Brian and I do not feel burdened to talk about Tanner or answer questions concerning him. Just the opposite actually. One of our jobs as parents is to raise awareness for CDKL5, which is the purpose of this website too! But just like that therapist should have done her homework on Tanner, as she should do for each and every one of her patients, before treating them, our hope is that our family and friends and anyone who hears of Tanner's story, will go onlline and gather some information for themselves on what about 1200 children are suffering from today. Google is an amazing tool!
"What is the life expectancy for Tanner?" I'm hoping that as you just read that question, you gasped at the fact that someone would ask us that. But yes, multiple people have asked us that question! I want to be clear that I am not writing this in anger at all! The people who have asked it were trying to understand about Tanner and his disorder and they were sincere and concerned. But that does not take away from the fact that this question is inappropriate and hurtful to ask us. As Tanner's parents, it was one of the first questions we asked the foundation after his diagnosis, but the answer is unknown. Since then, we have tried to live every day with 1 thing in mind...how can I make Tanner happy today. Isn't that what we all want as parents, for our children to be happy? We are discussing putting an elevator in our home so we can better assist Tanner as he gets older and heavier. We just bought a van to help transport him better in the FUTURE. We are setting up savings accounts for him to one day make that van wheelchair accessible, if he doesn't learn to walk. We are NOT buying grave plots or even thinking like that, and all that question does is cause us to think about the answer. If you are curious about things like that, I understand your curiosity, but please go to www.cdkl5.com and educate yourself, so a question like that does not have to be posed to the parents of a beautiful baby boy who is ALIVE and as well as he can be.
Brian and I do not feel burdened to talk about Tanner or answer questions concerning him. Just the opposite actually. One of our jobs as parents is to raise awareness for CDKL5, which is the purpose of this website too! But just like that therapist should have done her homework on Tanner, as she should do for each and every one of her patients, before treating them, our hope is that our family and friends and anyone who hears of Tanner's story, will go onlline and gather some information for themselves on what about 1200 children are suffering from today. Google is an amazing tool!
"What is the life expectancy for Tanner?" I'm hoping that as you just read that question, you gasped at the fact that someone would ask us that. But yes, multiple people have asked us that question! I want to be clear that I am not writing this in anger at all! The people who have asked it were trying to understand about Tanner and his disorder and they were sincere and concerned. But that does not take away from the fact that this question is inappropriate and hurtful to ask us. As Tanner's parents, it was one of the first questions we asked the foundation after his diagnosis, but the answer is unknown. Since then, we have tried to live every day with 1 thing in mind...how can I make Tanner happy today. Isn't that what we all want as parents, for our children to be happy? We are discussing putting an elevator in our home so we can better assist Tanner as he gets older and heavier. We just bought a van to help transport him better in the FUTURE. We are setting up savings accounts for him to one day make that van wheelchair accessible, if he doesn't learn to walk. We are NOT buying grave plots or even thinking like that, and all that question does is cause us to think about the answer. If you are curious about things like that, I understand your curiosity, but please go to www.cdkl5.com and educate yourself, so a question like that does not have to be posed to the parents of a beautiful baby boy who is ALIVE and as well as he can be.
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