Wednesday, September 16, 2009

MY normal

Jasmine was born cortically blind, with cerebral palsy, a seizure disorder, mental retardation, and microcephaly. She developed hydrocephaly, secondary to her prematurity, for which a doctor put in a shunt. When she was a few months old, doctors put a trach tube to open her trachea for breathing. She turned out to need it permanently because she had tracheomalacia, an overly soft palate, and an overly large tongue. When Jas was five years old, doctors inserted a G-tube so she could receive the nourishment and medication she needed. Despite the medical procedures, Jasmine was happy, lively, and social. Through her many seizure-related hospitalizations, she held onto life and returned home healthier.
She was my normal. That was my childhood growing up and I wouldn’t change a thing!
When I was thirteen, I got an afterschool job as a mother’s helper with a child with severe cerebral palsy. I stayed with it until I graduated and still worked with her on college breaks.
I chose music therapy as a career because I saw how music therapy helped Jasmine learn. She learned how to communicate and engage with her environment more effectively because of music therapy. I wanted to do that for kids like Jas.
While I was in college, I worked part-time at an Intermediate Care Facility for the Mentally Retarded (ICF/MR) as direct care staff. This meant that I feed (sometimes g-tube), bathed, and dressed the residents who were unable to care for themselves. I also worked with each resident on specific life-skills goals.
When I moved to Rochester, I started my job working with public school students with disabilities. I’m currently placed in a middle/high school that has students who are medically and developmentally challenged. Many students use wheelchairs and all the students have communication delays or deficits.
I also do respite work and through this job, I learned how to take a blood pressure, chart oxygen rates and keep a pain scale chart. (I learned how to suction many years ago – Jasmine had required it.)
Maybe you wonder why I would want to work in a job like this and then have a child with special needs at home, too? Like I said before, it is my normal.
I hope this helps you understand that I have given this a lot of thought and am trying to be patient as I wait for my child to find me.


Anonymous said...

Chaney, I truly believe your child has found you. :)

Ter said...

It takes a patient person to raise a child with disabilities. I have a hearing loss, which is minor disability in comparison, and yet, I did not have patient parents when it came to my hearing loss. I sometimes wonder what would've come of me had I had worse disabilities (as were predicted).

Wishing you all the best.