Fish Bowl Syndrome

The Fish Bowl Syndrome

 I sometimes think that there must be some sort of really twisted cosmic rule that all families of disabled or special needs kids have to live out their lives in some sort of “fish bowl” for all the world to see, tap, shake, point at, piss in, criticize, change, or just ignore and dump out.  It seems to me that before my son was born with a disability I could’ve let my other children juggle knives and no one would’ve ever said a word.  I notice that the children that live down the street go virtually unnoticed to other adults in the neighborhood and their parents make decisions for them on a daily basis without scrutiny.  Oh sure, I had times before my youngest was born that I felt like some other person was telling me how to raise my child; but this was more like “are you going to let them jump on that trampoline? Or are you sure you want to send them to that school?  Never was it “I think you are not qualified to raise this child without sending him to a home” or “Why don’t you just give him up for adoptions” or “the huge and very intrusive  specialists staff and I will be at your home in 30 minutes to observe how your son plays in his own home, is that ok?”  I remember how it felt to be able to be a mother without the entourage of critics and professionals or spectators.  Have a disabled child and all of the sudden the solid walls of your once safe haven home are now glass and every portion of your life is now on display for all the world to see, debate, dispute, disregard, or dissect.  Comments are now not only it seems allowed, but required.  Interventions now loom in the minds of family members.  Conversations now exist about your family only to discuss this new ‘tragic’ event and its dynamics and nowhere in this does anyone discuss this new cute sweet child or who he looks like or takes after.  Now it’s socially acceptable for you to be told how to raise your child.  Now it’s not out of line for people to make comments that would never have been uttered before.

To the assholes out there I say this,  I plead this;  So few see my son as a human being but only as some sort of object that stands for the word disability and disorder.  Look at his face, look at his personality; it exists there and he feels it all just like the rest of us do.  This is a child whose entire family has had to fight relentlessly his entire life just to allow him to be treated as something other than a symbol of blind/autism.  We want to live out our lives the same way everyone else is allowed to live out theirs.  Let us exist in our realm of normal and stop interjecting because God knows that there’s nothing completely normal about your life either.