i am one of the least organized people i know when it comes to paperwork. i lose everything, and i have a carefully devised filing system that i just cant seem to use. for the most part we use a giant cork board for everything from school stuff to medical appointments and artwork. i just tack everything i think i may need at some point. im getting better, we just put a huge addition on our home, and i learned to keep EVERYTHING from contractor notes to loan information in a file, i have a giant file about my boys' ieps and school records, but i only did that because i had to fight their school and needed to sound like i knew what i was doing. the one thing that has become clear is that this disease comes with more paperwork than a full time secretary could handle... and im just a mom with five little kids and a house full of laundry and dishes to do! we need to get to cincinatti again for our clinic visit, and it's just not in the buget so im trying to arrange free airfare. apparently they want not only our life story, but they need a book about our finances just to see if we qualify. not to mention the five pages PER CHILD i had to print and fill out. I love summer camp. but why is it that i have to fill out a new 12 page form for each kid each year? nothing has changed! he still has duchenne. hes just a year older and a little weaker, dont they still have our address, dicipline tactics and complete medical history on file? talk about adding to an already full plate, i dont know anyone with a child that has extra time for this stuff, let alone with children with chronic illness. in my 10 years of advocating for my son( and filling out millions of pages of information in the process) i have met some people, in some organizations who just got it right. we met some folks from the stephen r baum foundation ( named after a man who had duchenne) these ladies just understood. they asked what i needed ( they focus on mobility issues) and asked how much ( the first time it was a double stroller for $900 the second time it was a scooter for $2000) and they sent me a check. they told me that it was hard enough to have to ask for the money, they wanted to make things as easy as possible! i never had to fill out a thing. my son austin sums up the issue after hearing me on the phone pleading for equipment or services, or watching me fax and fill out endless paperwork. he asked me " mom, why do you have to tell someone so many times , and ask so much for a wheelchair or something if i just need it?" " you shouldn't have to worry about getting things we need" he's right, now when is everyone else gonna "get it?"

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Comment by Christina on March 12, 2009 at 8:01pm
That's a great point. I just found our summer camp application last night and thought, I should just copy it once it's filled out so I can just submit it again next year. There's enough paperwork - even without all the medical stuff.

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