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Organizing for a child with special needs

December 7, 2009

Part 1 – 13th December

I was talking with a friend of mine, Lorraine, a single parent who has a 22 year old daughter who is special needs and she mentioned how she wanted to find more support for her and her daughter. Children are truly the greatest blessing in anyone’s life. That doesn’t mean that rearing them is easy 🙂 . There never seems to be enough time or energy to stay on top of the “managing” – logistically – of their lives.

But when you have a child that is special needs, a disability, disease, those demands; time, energy, resources and finances seem to spiral out of control. Your time is focused on immediate needs. I asked Lorraine if she wouldn’t mind showing me all her paper files. She looked so uncomfortable, so sad. “There are no “files” Isolde” she said, “there are just boxes and boxes of papers. I make sure I keep everything but I don’t have the time to sort them”.

After taking a look at all of Lorraine’s files and discussing all the demands of her day to day life I resolved to take up the challenge and use this blog to chronicle the many areas and needs of organizing the life of a child with special needs.

Some of Lorraine's boxes of papers
Some of Lorraine’s boxes of papers

Categories for filing

Assessments – Medical and Educational: This needs to be kept up to date. Quite often when you are looking to qualify for care, transport, medical accessories, extra curricular activities and government programs you will need to reference these.

Education – Report cards, Schools, Contact information for students and school, Calenders, Correspondence: Roxanne also has a seizure disorder which means that some days Lorraine will be talking to the school a lot or keeping her home. It can be very difficult to keep up to date with every teacher and classmates. There are always forms to be filled out too and keeping on top of these can take up a lot of time particularly when there is medication involved which there is with Roxanne. Keep all the report cards but make sure you keep the other categories current or it can get very confusing when you need a name, number or form immediately.

Extra Curricular Activities: Choir, swimming, art, Summer Camp, Potential, etc: Keep this up to date so that you know when to renew programs. Roxanne is sooooo creative – her art is fantastic. She also has perfect pitch as a singer and can sing every song from the Wizzard of Oz! There are so many programs out there. what usually happens is that you see a flier on a new one that looks promising but forget where you put it when you got home. That’s why it’s important to have a “Potential” file. Put all those fliers, notes etc in there.

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