I remember when my son was about 3 years old I was sent to a specialized testing place, there must have been 20 other children there, and a lot of parents in the waiting room. His diagnosis of autism had not yet come. The thing that stood out in my mind the most about the people in this waiting room was not the children of varying ages and varying cognitive disabilities with varying quirks. No, the thing that I was MOST aware of was the PARENTS. They all had this LOOK - what was that in their eyes? Was it desperation? Fear....real mortal fear? Panic?? They all looked like people on the edge - people whose life was in immanent peril. Fast forward a year - I had that same look. Theres an attack - the bombs start falling on a once peaceful world - and everyday the battle gets bigger. Everyday the attack mounts a new different strategy - so there is no holding your ground. Everyday you are coming across information - RUMORS - of people making it out in tact. But those are just distractions. Then the lucky, the very wealthy, their kids are spared so much shrapnel. And you feel so inadequate - because of your finances your kid takes hits that you cant stop. For years YEARS!! I felt guilty if I laughed. Guilty if I wanted anything that just had to do with me. I felt like I was supposed to SAVE my SON. SAVE HIM! Isnt that what a good mother does? Wheres my cape? I will be the SUPER MOM - because if you LOVE ENOUGH YOU will find the cure. But there is no cure. And no matter how much you fight - or cry - or read - or search - or work at - or demand - or blame - or pray - or beg - or make concessions with - at the end of the day....your kid has autism. The fear of a parent with a severely disabled child are so outside the pale for regular people. Will people hurt him? will they fear him because he makes noises? will he be safe when im dead? And people - well meaning - they invite you to things all of the time. Things you typically would have loved. And they say BRING HIM! But the stress of having my son in a place that is unpredictable, around people who have no idea what kind of melt downs he may have - and the looks and the scrutiny and the advice everyone wants to give and the FEAR - oh my GOD the FEAR every parent has of losing that kid because they wandered off (just type it in right now to your search engine, child autism lost....the stories NEVER END - and they almost NEVER end WELL.) You shut down - you shut off - you shut out so much. It changes who you are. It changes everything. I love my son - so much. But I am the parent of a child with a severe cognitive disability who is now 16 years old and shaves and is nearly 6 foot tall. Melody, Sylvia, Jennie, Karla Vsd, Debra Field, I know YOU know. We may find our happiness again - I have - but I have so many scars. And just below the surface - if anyone scratches too hard - there it is. The war is still raging.
Posted on: Sun, 06 Apr 2014 15:52:30 +0000
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