The Price of Success

2003 Teresa Kellerman

 

John is 26 now and is doing really well, in spite of the fact that he has Fetal Alcohol Syndrome and still lives at home.  Except for the fact that he doesn't get to see Love-Of-His-Life Sheena very often, he is a pretty happy guy.  I have found the right medications that balance his brain chemicals and allow him to function at his full potential.  I have him settled in a job program with a job he likes and a job coach who really gets it.  I have helped John to learn to live with FASD and be happy in spite of that.  And I have been persistent about providing John with the close supervision he needs to be safe and stay out of trouble.
 
When I adopted John 26 years ago, I made a promise to him that I would do everything (within reason) to help him succeed.  I didn't know back then that success would not include independence, but I was committed to helping him be as happy and healthy a person as possible.  John is doing really well now, but I paid a great price for his success. 
 
Providing 24/7 supervision means giving up a career as a para-legal, giving up any real job, and that means living off of my savings and not having a new car and having worn out carpet and furniture and not noticing how bad the house needs fixing up, and not going on vacations, and not having fancy clothes. 
 
It means spending LOTS of time educating myself so I can educate others effectively (with facts and information instead of frustration and anger) so that others will understand FASD in a way that they can actually provide appropriate care. 
 
It means spending LOTS of time talking with John about FASD so he will understand his disability and accept the restrictions he needs to be safe.  It means convincing him that even though he legally could move out and live "independently" (and we all know that does not lead to real independence down the road), he knows he is better off with the protection of an external brain. 
 
It means spending lots of time educating myself about the system and the law and government policy.  It means spending lots of time sitting on committes of community groups that influence how laws are passed and how funds are appropriated. 
 
It means organizing conferences to educate professionals in the community.  It means spending lots of time connecting with and communicating with others about his disability so he will qualify for services.
 
It means not getting to eat much fast food or cake or candy or junk food that we both crave, because the additives will turn him into a disrespectful, raving, out-of-control child (not acceptable for an adult man, even at home).
 
It means giving up a social life (and romance), because John just can't function well in a social group because of the noise and chaos and the opportunities to get into serious trouble.
 
It means taking John with me to meetings and community functions that I have to attend, and keeping him within 3 feet of me so he doesn't get arrested for sexual harrassment.
 
It means going along with John wherever he wants to go, including the prom, the mall, to church services, on dates, etc.
 
It means I have to keep teaching him WHY and convincing him again and again that he NEEDS restrictions that protect from himself and his disability. 
 
It means processing my own grief of my loss of having a normal life so that I can help John process his grief of loss of having a normal life.
 
So anytime anyone implies that I have it easy because John gets services and is safe and cared for in those services, I want to sit them down and tell them it hasn't been all that easy. 
 
But it has been worth it.
 
 

 

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