Frustrations of Mild Cerebral Palsy
When our triplets were born at 27 weeks gestation in 1984, the odds were
even that they would survive. The odds that they could lead normal
lives were much less. We lost our son on day 15 due to a rare heart
condition, but the two girls survived. Both suffered the various
preemie problems - patent ductus arteriosus (PDA), retinopathy of prematurity
(ROP), jaundice plus others between the two of them. We were told
to expect one of them (Jessie) to be mentally retarded. We did not
expect the other one to be diagnosed later on with cerebral palsy.
She seemed fine until around age 2 when she began toe walking and had
some trouble with her right arm when using it to lift "heavy"
Upon starting kindergarten, Alicia still had hand tremors and would walk
on her toes if she forgot to put her feet down. A simple touch on
her shoulder reminded her to walk flat footed. (Her teacher was wonderful
to help with this.) Since another child in her kindergarten class
suffered from a worse case (no early intervention either) of CP she was
qualified to receive both OT and PT through the school. The teacher
decided to have Alicia tested to see if she could receive the same.
NOT - Alicia was already above "grade in all areas of education so
this kept her from qualifying for any help. While I know it is wonderful
that her mind was not affected in any way, it is to me very shameful that
students who suffer some physical limitations are not allowed to receive
help if they are not affected educationally. This is one of the
biggest frustrations of the mild cerebral palsy diagnosis.
Still, I wonder what lies ahead for her as she grows up. What other
simple tasks will be difficult for her? Since she is "so normal"
in all other areas how much will people expect her to do "normally?"
These are some of the reasons why the diagnosis of mild CP is so frustrating.
We expect her to be able to do all things, and she can't. But since
her mental capacity is not affected, we tend to forget that she does have
limitations. It is so hard not to expect her to be "perfect"
at all she does since she is so good at her schooling. (She had the highest
academic average in the 7th grade class this past year! What more could
1998, 2001 © Copyright René Z. Milner
René Milner is the mother of triplets born at 27 weeks in 1984. Daniel lived 15 days, Alicia and Jessie are now 17 years old. Her email address is firstname.lastname@example.org
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