Life with CP

A family's story living with cerebral palsy in Chicago

Life with CP - A family's story living with cerebral palsy in Chicago

Stroller or wheelchair debate

Today we had a meeting between Jacob’s 2 physical therapists and a wheelchair vendor.  It was quite eye opening, as I expected this to be a quick and easy choice.  However… there are so many factors to think about.  The choice is either between a “stroller wheelchair”  or a “typical pediatric wheelchair”.

We wil need to purchase one of them, since Jacob is outgrowing his umbrella type stroller and his feet are touching the ground already.  Jacob is aging out of early intervention  in 4 1/2 months and will be starting preschool in the Chicago Public Schools. ( We are starting the initial evaluation process next week. ) More than likely, my little baby boy will be bussed to school. I’m not sure who isn’t ready for this yet, me or him?? But whichever type of device we pick will have to be bus compatable- (both are).  To be bus compatable, they must have foot restraints and locks, a headrest to prevent whip lash, a 5 point harness, and be crash tested.

     Jacob is right between the two chairs, even his therapists were at a loss with which one to pick.  The HUGE problem is that insurance companies will only pay for a wheelchair every five years.  So whichever chair we pick must grow with us until he is 8 years old!  Can you imagine the changes that he will go through by then?  Physically and mobility-wise?

Jacob and "The Green Machine"

Jacob and "The Green Machine"

    Right now, Jacob has just been walking with the use of a posterior walker. He is doing pretty well after the botox shots.  Now his feet don’t cross over- he used half of his energy to untangle his feet! It is a hard decision to make because who knows how ambulatory Jacob will be in 6 months… let alone 5 more years? 

    There have been many responses from parents in the CP community. Some tell me that they never use their wheelchair, except for school. They are bulky, heavy. I already know it will not fit into my little Saturn. However, some parents point out that their child’s self esteem is better in a wheelchair. The children often get hurt feelings when “completely random people, who should mind their own business” come up to them and say “Why do you make your mommy push you around..?  Get out of that stroller.”  I’m not sure who in their right mind would say that to a child, but more than one parent told me this.  We were at the circus this weekend and a little boy and his dad were standing by us.  Jacob fell asleep in his stroller and the boy pointed Jacob out and the dad said “Yeah, look, that baby is sleeping.”  They were roughly the same age??? And Jacob looked to even be taller than him. 

*Side note*

    My all time favorite comment by a stranger would have to be by the woman who was selling us his new shoes. She could obviously see that he had AFO’s on and asked why he was wearing them.  Her response was “He was perfect when God had him.”  My best friend, who was with me at the time, looked a little scared that I might sock her in the jaw! Candy gave me a look, as if to say…. “She means well”.  At least we can giggle about it now.

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