I have to stop myself from saying - "She just said hello to you" - with some attitude when people ignore my daughter's cheerful "Hi". She is teaching me that it doesn't matter how they react to her, that I should just do the kind thing, the nice thing, the loving thing, like her.
Showing posts with label Down syndrome. Show all posts
Showing posts with label Down syndrome. Show all posts
Thursday, February 9, 2012
Sunday, October 17, 2010
Up For Down Buddy Walk
Today was our first attempt at participating in a Buddy Walk. Ours is a pretty small group but we managed to stop traffic for a quite a while anyway! It was fun to meet some people I hadn't met before, run into friends we hadn't seen for a while, and see face to face some of my Facebook friends that I'd never met in person or only occasionally seen in person in the past. Our younger son doesn't have Down syndrome but is in a special education class and I just today learned that one of his aides has a son with Down syndrome. It really is a small world, our special education bunch!
When we walked up to the registration table Megan saw another little girl with Down syndrome and immediately gave her a big hug. It was so absolutely sweet and unexpected! She sees that she is looking into a mirror of sorts and she enjoys that. I have always believed that it is very easy for me to love every child with Down syndrome since they all look just enough like my own daughter that I feel a kinship with them. I saw today that she feels the same.
Megan's autism got the best of us after a while and she just couldn't take anymore, but at least we got through the walk and got to be a part of something bigger than ourselves. It seems that the money is going to offer great services for our families, free workshops, at least two monthly support groups for parents, and quarterly dances for those 12 and over with any kind of disability. The dances may sound like no big deal, but I took my daughters to the last one, and it was such a great chance for them to practice being in a typical social situation without all the usual pressure. That's what is so great about these kinds of events - the lack of pressure to do everything right. They are separated by their disability already, so it's important for them to have a chance to practice and feel safe in making some mistakes. It's also great for us parents to be able to sit on the sidelines and see if they are really ready for the social events at school that we aren't sure about.
I used to feel uncomfortable asking friends and family to support these groups but I'm starting to feel more comfortable with it now. We can't do everything for our kids, but with support and encouragement like the kind this group offers we can offer our kids a better life and we can offer our parents a way to make that happen since none of us can do it alone.
Just one final word, our walk was done in memory of James Bond Jennings. He was a young man in the group who died last year of pneumonia. He had lost his mother to cancer just a few years before. She was one of the founding moms of our little group and his dad, Grady, built his business around making sure kids like ours have a means of support after we parents are gone through Special Needs Trusts. This is quite a family. Grady with others put together a golf tournament to benefit the group in memory of his wife and son. James' friends each shared something that they loved/miss about James and let go a balloon as they shared. It was absolutely touching and brings a tear to my eyes even now. I know whenever I see a blue balloon in the future I will think of James Jennings and how much his friends loved him.
When we walked up to the registration table Megan saw another little girl with Down syndrome and immediately gave her a big hug. It was so absolutely sweet and unexpected! She sees that she is looking into a mirror of sorts and she enjoys that. I have always believed that it is very easy for me to love every child with Down syndrome since they all look just enough like my own daughter that I feel a kinship with them. I saw today that she feels the same.
Megan's autism got the best of us after a while and she just couldn't take anymore, but at least we got through the walk and got to be a part of something bigger than ourselves. It seems that the money is going to offer great services for our families, free workshops, at least two monthly support groups for parents, and quarterly dances for those 12 and over with any kind of disability. The dances may sound like no big deal, but I took my daughters to the last one, and it was such a great chance for them to practice being in a typical social situation without all the usual pressure. That's what is so great about these kinds of events - the lack of pressure to do everything right. They are separated by their disability already, so it's important for them to have a chance to practice and feel safe in making some mistakes. It's also great for us parents to be able to sit on the sidelines and see if they are really ready for the social events at school that we aren't sure about.
I used to feel uncomfortable asking friends and family to support these groups but I'm starting to feel more comfortable with it now. We can't do everything for our kids, but with support and encouragement like the kind this group offers we can offer our kids a better life and we can offer our parents a way to make that happen since none of us can do it alone.
Just one final word, our walk was done in memory of James Bond Jennings. He was a young man in the group who died last year of pneumonia. He had lost his mother to cancer just a few years before. She was one of the founding moms of our little group and his dad, Grady, built his business around making sure kids like ours have a means of support after we parents are gone through Special Needs Trusts. This is quite a family. Grady with others put together a golf tournament to benefit the group in memory of his wife and son. James' friends each shared something that they loved/miss about James and let go a balloon as they shared. It was absolutely touching and brings a tear to my eyes even now. I know whenever I see a blue balloon in the future I will think of James Jennings and how much his friends loved him.
Sunday, September 26, 2010
Assessments: Fool Me Once - Shame On You!
My daughter who has Down syndrome and Autism and is primarily non-verbal at this time was recently given a psycho-educational evaluation by one of the school district psychologists. He gave her a few tests, one is the WASI which is for verbal kids, she had a lot of trouble with it. In his defense, he also gave her a non-verbal test, the NNAT. Their website, which the school psych could have read, says that the NNAT “is frequently used as a screening test for gifted program entry.” Also, “The NNAT® is commonly considered to be a difficult test.” Maybe that's why she seems to have made no gains, perhaps even regressed since her last testing, when in fact anyone who knows her has seen real improvement in her functioning, in her speech, and in her behaviors. The use of this very inappropriate test makes it appear that she is not getting any benefit from the services the district is providing. This then becomes their excuse for offering no more services or at least severely limiting what services they will offer.
In addition, the "very qualified professional" they used to evaluate our child called her "mentally deficient", deficient for what? Deficient for doing brain surgery I would agree, but too deficient to gain in a special education program? Early on we believed what we were told by the people at the schools, we believed all the people in the schools who told us that she couldn't have Down syndrome and autism together when in fact they were mistaken, or wrong, or I don’t know, possibly even intentionally keeping her from getting the help she needed. Mentally deficient is not a term used by any professionals for diagnosing children with learning disorders or other pervasive developmental disorders. It is NOT in the Diagnostic and Statistical manual of Mental Disorders or in the ICD-9 used by physicians. It is also insulting and inappropriate.
We as parents must be vigilant in areas we never expected in order to make sure that our children receive the fair and appropriate public education they are to be given by law. Luckily, thanks to our attorney I have learned to check every test on the internet that is given to my children. The people who sell the tests want to make sure that the districts and the evaluators who purchase them know what the tests are for so they give pretty good descriptions. We can’t always know why someone might give our child a test that seems inappropriate without asking because there may be information in the test that isn’t advertised, but this kind of testing can’t really be justified! It seems to me that every time we have an IEP it is another opportunity for me to learn, they may fool me twice, but never with the same bag of tricks.
In addition, the "very qualified professional" they used to evaluate our child called her "mentally deficient", deficient for what? Deficient for doing brain surgery I would agree, but too deficient to gain in a special education program? Early on we believed what we were told by the people at the schools, we believed all the people in the schools who told us that she couldn't have Down syndrome and autism together when in fact they were mistaken, or wrong, or I don’t know, possibly even intentionally keeping her from getting the help she needed. Mentally deficient is not a term used by any professionals for diagnosing children with learning disorders or other pervasive developmental disorders. It is NOT in the Diagnostic and Statistical manual of Mental Disorders or in the ICD-9 used by physicians. It is also insulting and inappropriate.
We as parents must be vigilant in areas we never expected in order to make sure that our children receive the fair and appropriate public education they are to be given by law. Luckily, thanks to our attorney I have learned to check every test on the internet that is given to my children. The people who sell the tests want to make sure that the districts and the evaluators who purchase them know what the tests are for so they give pretty good descriptions. We can’t always know why someone might give our child a test that seems inappropriate without asking because there may be information in the test that isn’t advertised, but this kind of testing can’t really be justified! It seems to me that every time we have an IEP it is another opportunity for me to learn, they may fool me twice, but never with the same bag of tricks.
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