One essential element of parenting a kid with Down syndrome

THE BINDER

You all know what I'm talking about, no? Having a kid with DS is a piece of cake in most cases. But keeping all the records and information at hand's reach is a BIG job. Daunting is one word. It doesn't have to be. I am posting this here for you, because once again, today I realized how GREAT it feels to be organized!! I needed some information, and needed it quick. Out came the binder, and VOILA! Answers. If I could give new parents just starting this journey one unusual piece of advice, it would be this....KEEP A BINDER.



Nothing fancy, just preferably at least 3". (You're gonna need it!)



You'll wants tabbed dividers, to keep everything neatly filed by topic. Depending on what phase of the journey you are in, your tabs can be tweaked and adjusted. Ciarra is currently in third grade, and so her tabs relate to schooling issues, etc.

Ours is like this:

Current Issues
Current IEP
PET/IEP Minutes
Legal Correspondence
Notices
Medical
Anidrosis
Apnea
Hearing
Heart
Therapies
Speech
OT/APE
PT (she no longer gets this, need to file it)
Evals
Neuropsych
IQ testing
Other testing
Classroom Examples



There's a pocket for report cards, and another for things I will be discussing or needing at hand during PETs.



There is a page of current photographs, strategically placed so that when I am using the binder, whoever is meeeting with me will have no choice but to see exactly WHO they are making decisions for. It helps them remember that she is a very real little person with unique needs. It also helps keep me focused on what matters most. She does.

If you have a child with DS and you do not yet have a binder, it is never too late to start. Go through all the piles of stuff you have saved in drawers and bins and on your desk. Organize them into piles, as they pertain to different areas. Never mark your original! If you want to highlight something, make a copy. If you are missing important stuff, ask whoever has a copy to make you one. Then it is only a matter of adding things as they come in. You will wonder how you survived without one. And I promise you, you will be seen as a much more capable advocate for your child if you come in with this versus a shopping bag full of disorganized papers. Remember, it is never too late. Go!