The "Great Big Book of S".

As a parent of a child who has special needs, I feel like I need to be prepared for whatever life throws at us.  I, along with my husband and other parents of children who have special needs, are asked to do many things for our children.  We are asked to be advocates for our children in the educational arena.  We are asked to convey medical information between specialists.  We are asked to schedule numerous appointments with therapists and coordinate insurance referrals.  We are forever filling out paperwork for some office or agency and dropping it off at the clinic so our doctor can sign it.

As a former Special Education teacher, I knew the importance of keeping all of S's documents. In meetings, I would tell parents that they needed to keep all of the papers together .  What I didn't know was the volume of paperwork that these parents were handling.  Also, it's not always clear divisions of paperwork.  Sometimes medical crosses into educational and vice versa.  

What has helped us stay sane throughout all of this?  We have what we call "The Great Big Book of S".  Through the years, we have compiled 3, 3-inch, 3-ring binders filled with S's information. 

We learned the organization techniques for S's book through Pam and Pete Wright's book, From Emotions to Advocacy, http://www.wrightslaw.com/nltr/12/ss.organize.file.htm, and additional helpful reading from http://www.wrightslaw.com/. We have adapted these techniques as we have needed for our situation.

*What goes into the "Great Big Book of S"?

1.  Anything pertaining to S and his care

2.  We have a list of all of his providers with phone numbers, fax numbers, addresses, and email addresses.  My husband has a copy of this document at work in case he needs to make phone calls.

3.  We have a plastic protector to hold any business cards we receive from providers.

4.  Medical reports

5.  Documents from school (IEPs, report cards, notes from the teacher, etc.)

6.  Any testing reports (school or elsewhere)

7.  Copies of any correspondence from us to others about S

8.  Insurance referrals

9.  Copies of prescriptions

*How is the "Great Big Book of S" organized?

1.  Organize everything chronologically.

2.  Create a "table of contents" for your book.  

3.  We printed calendars and put in the binder also to record appointments and meetings.  That was very helpful for us.  

4.  We used sticky flags to mark new months, so we could find things easier..

*How is the "Great Big Book of S" beneficial?

1.  There is a definite attitude shift on the part of professionals when they see us whip out the book(s).  We have traveled with some large bags to get these books to appointments.

Example of the benefit:  

Shortly after moving to Virginia, I attended a triennial review for S by myself since my husband was gone.  I came in with my bag full of binders, notebook, and pen.  Since we had just moved, I was talking to the team members from the school discussing S's transition.  An administrator from the district office came in, looked around, visited with everyone, and said that the meeting could start as soon as the parents arrived.  Imagine her surprise when she found out mom was there already..

2.  It saves our sanity to know that we have S's documents all together, and we don't have to dig for them.
Example:

A couple of months ago, we received a statement from the insurance company that they had paid a medical bill for S...to a gastroenterologist.  The problem is he has never seen a gastroenterologist. The date of service was the day he saw the ophthalmologist.  This was a call to the insurance company which was made much easier because we had the insurance referral, the medical bill, proof of our co-pay, and now this statement all together in one spot.  

3.  We are going to be able to hand him the books as he becomes an adult, so he has necessary information together.   Since he is now 18, I have started to weed out some of the documents. He probably doesn't need Explanation of Benefits from bills that were paid 12 years ago.  

Thank you Pam and Pete Wright for teaching us how to organize our book!  Their book, From Emotions to Advocacy, lays it out quite well.  It is a lot of work initially, but it is such a timesaver and lifesaver!  

Because their system made my life easier since S's paperwork was so well organized, I have free time to be on the couch with chocolate.