Need Some Advice Please, Adolescent Issues

July 22, 2012

I am the Mom of a 16 year old young man with SMA 1 who is struggling with alot

of adolescent issues. Things were magnified because of a significant respiratory

infection in Feb 2012 that left him trach and vent dependent after a 3 month

hospitalization. He had always been in school until this past year, when he did

an online High School due to the need to get all caregivers thoroughly trained

on vent, and for him to regain his strength. He is venturing back into school

this year. He will be in 10th grade.

It has not been easy for him to cultivate friendships in our smaller community,

although he has had a few very good friends over the years. He is very

interested in dating, and does not even know how to begin to break down those

barriers....He also is looking ahead to after graduation and wants to seek out

college opportunities away from home.

I am looking for people who are on the other side of this nightmare of

adolescence that could share some wisdom about the ups and downs of surviving

adolescence as a wheelchair bound vent dependent individual with SMA. Also

wanting help as to how as a parent to support this process towards relationship

building and preparing for independence. I'd love to know from you what in your

opinion was helpful, and what to avoid at all costs!

I am encouraging him to join this group, but he has not yet done so. His name is

and his email is brandon.jjohnson95@... if anyone is so inclined

to reach out to him.

Thanks for any advice with these issues...

Ronna

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