March 30, 2014 § 3 Comments
Several years ago Ari became very ill and ended up at the emergency room at Children’s Hospital Boston.
We waited and waited for help. She laid there in the hospital bed without any energy at all. Pale, dehydrated and it hurt her to move. A nurse came marching in, looked at her diagnosis and said “this is her baseline right?” They had been making the assumption because she had a syndrome that this is how she always behaved and that there was no real emergency. Fortunately her geneticist was just upstairs and came down and straightened everything out. Ari was then re-evaluated and admitted for what ended up being a week.
I often wonder if I had taken her home that day because I never pushed anyone to look closer what would have happened that night.
This nurse made an assumption without asking questions. This happens way too much with kids with needs.
It happened again recently when we met with people at the middle school and heard about future program choices. They pushed toward a program for severely impacted children – again they assumed whatever they wanted based on her diagnosis.
We all need to stop, look and SEE the child not the diagnosis. We can’t assume that because we read something online about children with the same labels that it is true for every child with that label.
Every child is unique, they are a beautiful blend of their diagnosis, their family, their heritage, their genetics, their gender and their personally. There is no description that captures all children or their learning profiles. This is why when we develop IEPs they must be individualized. They can not be cookie cutter goals and objectives, they can not follow a track that other children are on. They must be tailor fit. Each IEP truly should be completely different than the next, just as each child is uniquely different from other children.