Tuesday, July 15, 2014

Tell Us a Little About Your Son

Every time we have moved or every time we have had to see a new doctor or the start of every new school year or...you get the picture...we are asked to tell this person or people a little about S.  That is easier said than done.  There isn't a little to tell about him.  There is a lot to tell.  The individual parts don't do him justice.

I will attempt to tell you "a little about S".
1.  He has Cerebral Palsy-Spastic Diplegia.  
a.  His CP impacts his legs primarily.  He used a walker when he was younger.  He walks with crutches now and uses a single crutch around our house.  He uses a wheelchair for longer distances. He had Botox injections for his legs when he was in the second and third grades.  He has also had muscle release surgery on both legs - heel cords, adductors, and hamstrings.  
b.  His fine motor skills are also impacted with the right side being impacted more than the left.  He has functional handwriting - words, numbers, signature.  His primary mode of writing is through word processing.  He types - slowly.  He also uses some speech recognition software.  
c.  His speech is also impacted a little bit by his CP.  His speech is breathy, sometimes he stutters, and sometimes he locks up and is unable to speak.  
d.  He had PT, OT, and Speech for a number of years.  He is currently not doing any outside therapy.
2.  He has Attention Deficit Disorder.  
3.  He has some vision issues which include nystagmus.  He may actually get a label of Low Vision, but we haven't had that conversation yet.  His accommodations for his CP have always covered any accommodations we might need for his vision.  He had muscle release surgery on both eyes when he was in the first grade.
4.  He has scoliosis.  He has been monitored by his Orthopedic Surgeon for a few years now.  There has been no treatment for this.
5.  He was treated for a number of years for Growth Hormone Deficiency.  He decided last year he was done with that.  The Pediatric Endocrinologist continues to follow him.
6.  He is allergic to Penicillin.  We found that out the one time we had to take him to the doctor for being sick.  He is extremely healthy!
7.  He is very smart.  He loves history and foreign languages and tolerates other subjects.
8.  He is a Christian.
9.  He doesn't like being called disabled.
10.  He loves rock music from the 80's.
11.  He turns 18 in December and will graduate in 2015 which is why we are working hard on transitioning him to adulthood.  

All of this listed above is why we always tell people, you have to meet him.  He is more than just a bunch of medical labels.  He is a whole package.

I will be on the couch with chocolate as I contemplate what else I could tell you about S.

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