I’ve been thinking for a few days about the post that I should write. To summarize the decade that passed like everyone else, the decade that changed the course of my life without me asking. The son that I wanted so much who arrived at the beginning of the decade and dictated the way so differently than I had planned. I was happy for small things which I realized are so important, but dived to bottoms I had not known before. I realized that I should look at the world in a different way to enable me to continue functioning for my child who is totally dependent on me.
Writing the post was supposed to be easy, but I could not get myself to do it. In a hidden corner of my mind I did not feel that was important enough. Then, a story was aired in the “Kan” channel about Meshi Peretz, a girl on the autistic spectrum who died in the cared-persons group home where she was living. Perhaps the fact that I’m a mother of a child on the autistic spectrum who cannot naturally express and share his feelings in words, helped me to quickly recognize the magic in Meshi’s eyes, the kindness and naivety contained in her. Her beautiful eyes caused me deep sorrow and frustration. How can it be that a girl, who according to her parents was completely healthy when entering the home, died as a result of a collapse of her body systems? How can it be that a girl is under physical duress for several hours (as translated by a professional doctor who read her autopsy report) before she is referred for treatment? How can it be that this girl is at risk and loses her life and nobody from the cared-persons home is good for answers?
I looked at the sad eyes of her mother who said “that’s it, life has changed. We need to deal with a devastating loss… we invested so much to improve her condition and six months after she entered the home, began the hospitalizations, broken arms, seizures (and the child was not epileptic)”. I turned and looked at my husband who sat next to me and said out loud – “Never!”. I don’t care what we will be needed of us, he will not set foot there. Our child will never be under the supervision of someone that I did not choose.
Meshi’s parents’ lives changed twice. The first time when Meshi was born and their lives (exactly as ours) focused on intensive care for the child. Sixteen years of investing resources and mentally dealing with a constant worry for a child who will need them in an absolute way all of her life. And the next time when she died so tragically. This story raises for every parent of a child with disability all of the worries and anxieties they work to suppress in the day to day life. The weight I felt was so great that I could not fall asleep that night.
A child entering a “home” loses so much. He loses his privacy (to which he is entitled), many times loses his dignity because of rules and procedures that are not suitable for him, and in the worse cases loses his liberty and is subject to violence (not necessarily physical) and daily humiliations by the caretakers who are there to look out for him. Meshi was a girl with feelings and needs like the rest of us, and for a completely unclear reason withered away in a place that was supposed to nurture her.
So here is a practical goal for all of us at the start of the decade: think about kids on the autistic spectrum as human beings and change the way they are treated accordingly. These kids are an inseparable part of society, their portion of the population is constantly rising and we must learn how to treat them as human beings in the best possible way.
