Life With Fetal Alcohol Spectrum Disorder

One of the major misconceptions about drinking while pregnant is that the baby will outgrow the disability.  I asked some friends to be guest bloggers to tell their stories of life with their adult children with Fetal Alcohol Spectrum Disorders (FASD).

Tabitha is a parent of a young man with FASD.  She is committed to helping others understand the severity of this disability and to supporting other parents struggling to raise children with FASD. - Delinda

Here is Tabitha's story:

Life has been a real challenge for our son.  He was diagnosed with FAE when he was 10 yrs. old.  FASD (Fetal Alcohol Spectrum Disorder) has impacted our son's life in so many ways.

         First his quality of life is compromised, he doesn't understand why he can't do the same things as other people such as playing school sports, having a social group of friends to hang out with, getting a job or a driver's license and most of all living independently in his own apartment.

He doesn't like having parents or others telling him what he can and can't do.  He wants the freedom to make his own choices, but doesn’t understand the consequences when he makes the wrong ones. 

He has struggled for 16 years in school trying to get an education and earn his diploma so he can get a good job after graduation.  He just graduated from high school. Other than having an aide for one year, which was a very much needed, he didn't receive any adaptations.

One of the most frustrating things for us is how inconsiderate people in our community are towards people with intellectual disabilities and how they make fun of them.  People take advantage of my son because they know they can get away with it. It's heartbreaking to see how persons with FASD are treated as an outcast in our society.

Our son has been on heavy medications to try and control his hyperactivity, short attention span, and his moodiness. Now we have learned that he has been given the wrong medications for a mood disorder that has been overlooked for years.  Since he started on the right medication, his future looks much brighter.

I can't predict realistically what his future is going to be like at this point. I don’t like to think that far ahead.  We are used to taking things one day at a time, especially since he became involved in the justice system a year ago, which is another challenge parents would rather not have to face.

I really doubt that our son will be able to live on his own.  He will always need someone to guide him through life and help him make the right choices—someone to make sure he gets to work on time, and picks him up. He needs guidance to keep him away from the people who are bad influences on him because he doesn't have the ability to say no or to understand when someone appears to be his friend that they are just taking advantage of him because he is disabled. He makes friends easily but friendships don’t last.  He can't understand why certain people have hurt him by laughing at him behind his back or why others steal from him.

There is no way to know how much society really spends on our son since it's very difficult to get state services for him.  Our community doesn't offer any services or activities for someone like him. As I see it, we as his parents spend much more on him than other parents do with their children, but this is one issue that needs a major change for us because he is an adult.

Tabitha