invisible disability

Physical disabilities are most often obvious to the observer. We can see a wheelchair, a leg brace or a cane.  Disabilities of the brain can be less easy to identify.  In cases such as Down Syndrome there are  distinct physical characteristics.  Disorders such as Autism and Asberger’s are more difficult to see with the naked eye, yet they can be just as disabling to the person affected.   Fetal Alcohol Syndrome (FAS) in very severe cases can cause facial abnormalities, visible to trained physicians, but unlikely to be distinguishable to casual observers.  In my son’s case, these facial features are absent.  The depth of the damage to his brain is invisible, and that is the problem.

From the outside, my son appears to be a normal well developed 14 year old.  Inside his brain, however, the areas that affect memory, judgment, planning, impulses and emotion are damaged.  The odd thing about FAS is that the ways that the above skills are affected can vary from day to day.  A child with FAS may be able to complete a math problem on Monday yet unable to complete the same math problem on Tuesday.  Short-term retention of information can also vary from day to day.  Pathways in the brain are seemingly unobstructed one day and full of road blocks the next.

Because of the fluctuations in the abilities of a child with FAS, it is easy for teachers and parents to believe that the child is being manipulative when they claim to not know something that they knew the day before.  Living with the uncertainty and fluctuations of this disability is a recipe for insanity.  I know this first hand. My sons lives in the “behavior/focus” room at his school.  His inability to self-censor gets him into a lot of trouble.  He is impulsive and enjoys seeking attention from other students.  As a result his behavior in the classroom can be disruptive.  Teachers unschooled in the ways that FAS can manifest itself  are happy to send him away from the classroom.

I received a phone message  from the focus room teacher on Tuesday.  My son had been sent there for calling another student a “lobster.”  My first thought was “You have got to be kidding me?”  The teachers message stated that a physically disabled girl with communication problems was the target of my son’s name calling.  I do not in any way condone my son’s behavior, however, I take offense at the fact that there seems to be no willingness on the part of the administration to see my son as differently, but equally disabled a the girl that he targeted.

Thankfully, my son’s special ed teacher took my call in the middle of his class and spent time listening to my concerns.  He said in so many words that he is equally frustrated with the one size fits all method of discipline at the school which does not take disabilities into consideration.  He agreed to speak with the Vice-Principal to advocate for my son.  Due to his frequent trips to the focus room, my son was in danger of being kicked off the basketball team.

Yes, my son’s behavior is at times verbally abusive and very obnoxious.  He continues to be singled out for his negative behavior and rarely praised for the things that he does well.  Taking a sport away from a child that suffers from impulsivity, hyperactivity and low self-esteem is not going to change his behavior.

I am happy to say that the advocating done by the teacher on behalf of my son was effective.  He remains on the team and was able to play in the game yesterday afternoon. This is not the first battle that I have fought for my son and it will not be the last.  For those of you that would like to learn more about FAS, there is a link to the Minnesota Organization on Fetal Alcohol Syndrome on the right hand side of my blog.

Cut and paste the address below into your browser to see the images of a brain affected by FAS and a normal brain.

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