WOW! It’s been such a long time since I have written. I find myself wanting to write about once a day but the day gets away from me and before I know it, I’m exhausted and going to sleep.
Last weekend I went to the annual National Down Syndrome Congress convention and it was both informative and overwhelming. There were so many people and they all had so much info to give. I got to see Dr. Capone speak and let me tell you, this man did not disappoint. He had a lot of encouraging information to give about sleep disturbances (have iron checked) impulsivity being alleviated with Risperidone and how Risperidone even helped to alleviate “foggyness” and increase cognition. I have wanted to look into Risperidone but have really been hesitant to do that, until now. I have to say, it was sooooo refreshing to be in a room full of parents that are going through much of the same things that we do on a daily basis. Emily isn’t a typical child with Down syndrome. Emily’s behaviors make it hard for people to accept her. People with children who have typically developing children with Down syndrome don’t understand that just disciplining her more isn’t going to “fix her”. Billy and I have made a conscience effort to distance ourselves from most people because they just don’t get it and their comments just make us shake our heads. It was nice to be in a place where I didn’t have to explain or be looked at like I am a parenting failure.
I also went to a discussion based on the Downsed system of reading. I really think that this could help Emily, so much so that I ordered the reading kit as well as the Math kit. I am excited and hopeful that this will work.
It wasn’t all work, I did enjoy some much needed down time. I got to see one of me BFF’s and it was such a great time. I sat in the pool and absorbed the sun (read got burned) and I had a couple of drinks even. OH and of course reconnected with friends from past events and made some new ones.
Last weekend I went to the annual National Down Syndrome Congress convention and it was both informative and overwhelming. There were so many people and they all had so much info to give. I got to see Dr. Capone speak and let me tell you, this man did not disappoint. He had a lot of encouraging information to give about sleep disturbances (have iron checked) impulsivity being alleviated with Risperidone and how Risperidone even helped to alleviate “foggyness” and increase cognition. I have wanted to look into Risperidone but have really been hesitant to do that, until now. I have to say, it was sooooo refreshing to be in a room full of parents that are going through much of the same things that we do on a daily basis. Emily isn’t a typical child with Down syndrome. Emily’s behaviors make it hard for people to accept her. People with children who have typically developing children with Down syndrome don’t understand that just disciplining her more isn’t going to “fix her”. Billy and I have made a conscience effort to distance ourselves from most people because they just don’t get it and their comments just make us shake our heads. It was nice to be in a place where I didn’t have to explain or be looked at like I am a parenting failure.
I also went to a discussion based on the Downsed system of reading. I really think that this could help Emily, so much so that I ordered the reading kit as well as the Math kit. I am excited and hopeful that this will work.
It wasn’t all work, I did enjoy some much needed down time. I got to see one of me BFF’s and it was such a great time. I sat in the pool and absorbed the sun (read got burned) and I had a couple of drinks even. OH and of course reconnected with friends from past events and made some new ones.
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