Tuesday, January 24, 2006

Being the Eyes and Ears for Your Complex Special Needs Child

A comment that always upsets me was made again last week. You know the comment because the professionals probably say it to you – your child “is lucky to have you because not all parents are as committed to them as you are.” It always angers me because I see most parents working hard for find answers for their kids.

This time I mentioned the comment to my son’s case manager. I asked him if he didn’t agree with me that most parents really try hard to meet their child’s needs even the most complicated ones. He said “not everyone is able to be the eyes and ears.” While I think most parents are able to observe their kiddos better than anyone, it was like one of those lights going off moments.

I thought about the documentation system and approaches in Parenting Your Complex Child (April 2006). That is exactly what it does – acts as the eyes and ears to help interpret our children.

It didn’t start out to be a book. I just grew frustrated with not being able to get adequate help for Billy Ray or even fully understanding him myself. Nothing was working. I felt like medications were being thrown at Billy Ray without the doctors really understanding him. He was being forced into programs that didn’t work for him instead of creating systems that did work for him.

The first turning point was in practicing the lighthouse concept that I have shared with you before. The next was taking past experience as a paralegal and a professional fiduciary, applying them to create a documentation system so that doctors, educators, and social work would see Billy Ray as he really is.

Documentation seems overwhelming when we living out the stress of taking care of our children. I hope that I have made my system simple enough that parents can use
it to be the eyes and ears to get the information to professionals of all kinds about what their child needs to thrive.

Until tomorrow,
Peggy Lou Morgan

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