Matt and Sam never were like most other children. Every sign was there. They were inconsolable as infants. They rocked back and forth. They echoed sounds instead of forming words. They walked on their toes, lined up toys, played only with parts and not a whole anything. Things spun. Kids cried. Nothing about it was particularly normal, though.
I will never forget the moment I knew. Matt and Sam had bouncy seats and a water mat they loved. The mat was a small fish shaped mat that had objects floating in water inside of it. If you push the water, the object moves. Matthew loved this toy. He played with it every time I laid him on that mat. Then one day, he didn’t.
My child was leaving me. I can honestly say that first time he did not play on that mat, I felt it, and somehow I knew.
With Sam, it was slower. With both, it became inconsolable screaming, no one wanted to be held. They would stretch out and push away from me when I would pick them up out of a bouncy seat or a swing, they would cry all the time. I remember giving them chamomile tea and honey, which pediatricians frown upon, but these people failed me anyway, and getting a slightly calmer reaction.
That moment is always in my mind as the point where part of me said, immediately, “Autism,” and the beginning of a very long, very unnecessary battle for someone, anyone, to listen. I knew. I said it, I asked about it, and all along, I got missing milestones. I got, hmmm. I got a lot of people who made me feel stupid, and a lot of unconcerned road blocks.
I remember Matthew was usually pretty unattainable. He would rock for hours. Back and forth, he rocked. he had this keyboard that played music, and he would push a button and rock. Sam would get on his hands and knees and rock back and forth. He was not as far inside himself as Matt. I would get in front of Matthew, and later on I was told this was the wrong thing to do, which I disagree with, and I would say his name until he would look at me and I would smile. Usually he did not respond. When he did, it was magical.
Like all parents of children with Autism, I have a very long and extensive list of broken and destroyed household items. I have a long list of places and times when rude and ignorant strangers have come up and given me advice that was neither well meaning, nor was it helpful. I have long lists of places and times I was hurt by people with good intentions, as well. The truth is, this is a nightmare at best when you are in the middle of it and you do not know where to turn.
We are not alone. It is now what, 1 in 68 according to the Autism Science Foundation.
We have resources because of the internet we never had before. I know that does not diminish the frustration of not getting a diagnosis, but there is so much help and hope.
This was just the beginning of our journey. It did get better. Every day it gets better.
With every bit of progress early on, comes that regression we dread. The meltdowns. The ugly side. Every step forward seems to lead to one step backwards.
And we all hear you.
And that means you are never alone.
Happy Mother’s Day,
Steph’s Life And Sam’s Voice.
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