At my kitchen sink contemplating dinnertime the other night, it hit me like a meteor shower. All over the world there were moms like me gearing up for the night time routine with an Autistic child. With learned courage we faced dinner, baths and bedtime and we would blame ourselves personally for every part of it that went badly. At every turn of the evening marathon our brain damaged children with sensory addled systems and broken bodies would try to do their best, as we would. But the guilt is crushing when it goes badly, as it often can.
Off we go putting ourselves through the paces of cooking exceptionally healthy and expensive food, prepared in its most basic form, hoping to appease their painful tummies. We hope the struggle to get the good food in won’t be an epic battle tonight. We hope the need to say ‘no’ to the foods the child desperately craves but can’t digest will not create another emotional meltdown. We navigate the sensory issues of the foods; the textures, smells and flavors. We manage the siblings and spouses who want to eat different things. We compare the scene in our households to what we think dinner looks like for ‘normal’ families. By comparison we feel like we are failing.
Thousands and thousands of us, sensing we aren’t doing this well enough. Surely this must be doable? Otherwise there would be more outrage, right? Maybe there aren’t that many of us with kids with mitochondrial dysfunction, brain inflammation, inability to detox, sensory issues? Kids who were inadvertently poisoned? Kids with trashed immune systems? No, that’s incorrect. There are tens of thousands of these kids, more every day. Our labor taking care of them is so back breaking it keeps us isolated and under the illusion that we are a small group.
We head for the bath and we notice our children are too thin. They look scary thin, like Concentration Camp survivors. Their bodies don’t represent the hundreds of dollars spent at Whole Foods each week, or the care we are taking with bone broths or fermented vegetables. A mother’s first instinct is to nurture, to feed. When our children aren’t gaining weight or growing we take it personally. We ask ‘what am I doing wrong?’ Nothing. You’ve been sold a false bill of goods. Your child has been deeply wounded and the healing will take an outrageous effort and may or may not work. You are not the problem. The problem is what wounded your child and the medical system behind it.
It’s time for the toilet. Is it painful, frustrating constipation or acidic, burning, liquid diarrhea in your house? In our house we’ve been cursed with both. Something as simple as going to the bathroom can become a torturous situation involving pain, tears, struggle and frustration for our children. Endless potty training, accidents, crapisodes and clean-up are the quiet, private burden in these thousands and thousands of Autism households with suffering and uncomfortable children who don’t know what it feels like to have their tummies not hurt. They assume everyone’s stomach hurts. Other people are just better at distracting themselves from the pain. They wish they didn’t have accidents. They wish it didn’t hurt to poop. They just want to be a kid who feels o.k. They are victims of medical assault.
Supplements are put together, whether elaborate or simple, and doled out and received sometimes under duress or sometimes with submissive resignation. We try to silence the critical voices in our heads as we mix, pour, grind, measure, and check our notes; ‘Do these even work? Can we afford to refill these? Will he spit this out again? Why does this stuff have to be so gross? God, I am so sick of putting this stuff together every night. Please let these help my child.’
Goodnight to the old lady whispering “hush”
Children are tucked in and the hope sleep will come easily and stay through the night is intense. For how many of the thousands of Autism households does this happen? How under slept are we as our poisoned, brain damaged children stim and spin and giggle and squirm about the house? We have kids who cry with gut pain or escape through a dead bolted front door while we sleep. We have kids who wake siblings, destroy their bedrooms, smear feces or kids who lie quietly awake, but silent, terrified by their own thoughts.
Maybe we thousands and thousands of parents don’t handle all of this so well? Maybe we are not always calm? Maybe voices are raised or words are said we wish we could take back? Maybe we fight with spouses or yell at nt siblings? Maybe we cry ourselves? Our desperation feels personal and never ending. In every one of these Autism households parents are attempting to love, nurture and heal children. We blame ourselves when things go poorly, we receive very little useful help and we are lied to every single day about how this happened and who is responsible. Our circumstances keep us so mired down in the crisis of the moment we can barely see the bigger picture. Yet if we get off our knees from scrubbing the bathroom floor for a moment and allowed ourselves to imagine what this looks like from a distance as far away as the moon we could look back at the earth and we would be staring at a planet, that under its current leadership and control, is producing Autistic children as if it was its greatest industry.
Our grief and guilt that we are not doing this better keeps us isolated but really we are invisibly connected by a beautiful web, which is the truth. We must remember that we are part of an enormous and ever expanding group of like-minded parents. There is tremendous strength just in the size of our group. We are a force for change because we are so many. There is genuine resistance to knowing how many of the world’s children are Autistic. The fractious argument over the new definition of Autism for the upcoming DSM 5 clearly appears motivated to disguise the growing Autism numbers. Even the recent admission that the Congressional Record would not include the testimonies so many of us sent in after Dan Burton’s recent Autism Hearings appears to be another effort to ignore and hide our children’s suffering. Neither of these short sighted efforts will work though. Simply because our children physically exist and the stories of their regression into Autism exist within the hearts and minds of their parents and we will not stop telling them EVER.
Our children have been terribly injured. This is not just a neurological or mental health disorder called Autism. We do know how it happens; toxic overload. As we fight like hell to heal their bodies and minds and for justice for their sweet souls, we must never forget to hold accountable those who did this to our children.
Goodnight noises everywhere
By Mama Mac.
By Margaret Wise Brown
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