I'm hoping that my non-profit, HANS (http://www.helpautismnow.com/?page_id=22), is chosen. It's based right here in Salem, Oregon and their mission is to provide doctors and other health care professionals with materials and training to help diagnose Autism Spectrum Disorders (ASDs) earlier. Having experienced a grueling three years trying to get Dakota properly diagnosed, this is something close to my heart. We had medical professionals suggest diagnosis ranging from emotionally disturbed to sensory integration disorder to poor parenting to auditory processing disorder. - And yes, the poor parenting diagnosis hurt. That doctor (a psychologist) only worked under that theory for a short time until he knew us better and had seen enough interaction to realize it was not poor parenting, in spite of first impressions.Not a single one even mentioned autism until we got to the Child Development Center at USF, where he was seen and tested by a developmental pediatrician, a clinical psychologist, a school psychologist, and a neurologist. Then they all got together and their joint diagnosis was the first one that truly made sense. It just shouldn't be that hard! In hind-sight, the warning signs were there for anyone who looked if they had any training at all in recognizing ASDs. And with ASDs now affecting 1 out of every 150 children, this isn't some exotic disease that a doctor might never encounter outside of a text book. Anyway, I'll be hoping really hard that HANS gets a little extra boost in funding this year to carry out its mission, courtesy of the Oregon Coastal Quilter's Guild.
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2 comments:
Hi there. I received notice of your blog when the term auditory-processing popped up. We have a 9 year with CAP but had the dx very early on (even though the official didn't come until the magic number of 7 years 7 months). Our daughter uses an FM unit which isn't covered by the district or insurance. Does your not-for-profit address such issues and how did you go about setting up your group?
response for Princeton,
First of all, let me say I'm sorry about your insurance troubles. I know many families have been practically bankrupted trying to provide care for their autistic children. We're fortunate to have good insurance coverage so that has been one less worry for us.
Next, I must have been ambiguous in my post. HANS is not actually my non-profit. It is the non-profit I chose to receive the funds from the auction should my name be selected. To the best of my knowledge, they don't do anything with CAP, only autism. However, if you contact them, they might be able to offer suggestions as to how to set up a non-profit. I'm not sure where you're located, but keep in mind that there might be differences from state to state.
Regarding the school district not covering the cost of an FM unit. In my experience, schools often say they won't provide things which they are actually required by law to provide. It's especially frustrating to realize that, in many cases, they aren't as aware of their responsibilities as they should be (they aren't being sneaky, just ignorant). IMO, confrontating them head-on is almost always a lose-lose, but you might consider contacting your state's disability advocate to help you fight that battle. If you can't find the one in your state, let me know what state you're in and I'll try to help locate them. I'm not an expert, but an FM unit seems to me to be a no-brainer for a child with diagnosed CAPD when it comes right down to it. Good luck.
Ann
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