Goodnight Autism
Goodnight room
Goodnight moon
Goodnight cow jumping over the moon
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 nobody
Goodnight mush
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 stars
Goodnight air
Goodnight noises everywhere
Goodnight Autism.
By Mama Mac.
Goodnight Moon
By Margaret Wise Brown
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Goodnight Mito! Goodnight pain! Goodnight gastrointestinal dysmotility! Goodnight rain!
A telling post mama mac…
can’t tell you how many times I have asked myself this… “Maybe there aren’t that many of us with kids with mitochondrial dysfunction, brain inflammation, inability to detox, sensory issues?”
“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.”
OMG!! YES!!!! Yes, I have imagined this exact thought in my head. It is such a travesty that one has to be living within the realm of vaccine-induced regressive autism to understand this. It’s just so damn frustrating that something so blatantly obvious to us, could be so unnoticeable, so invisible to others!! And even worse that it can be thrown in one’s face to be seen as clear as day, only to be easily overlooked, ignored and forgotten!!!Grrr
Loved this! Meanwhile do you have a link where we can see that the testimonials werenot included? Thay yicks me off to no end. Errrrr Ticks me off…..durn kindle!
Dear Mama Mac. Thank you for writing this blog.
Thank God for the TM’s who never give up. I will pass it along. I hope they will read and understand.
This is really a beautiful piece of writing, as it really explains what autism is like on a daily basis. It’s horrific how the kids suffer, and on top of it, the parents feel inadequate that they can’t fix it. I always say, it is the loneliest disease on the planet. Thank god for the internet and posts like this so we don’t feel so alone battling this monster they call autism day in, day out. Goodnight Autism indeed!!!
Yes. This is truth. Thank you for so beautifully stating it. I’ve already shared.
Copernicus once said:
The Earth together with its Moon, and just like the other planets moves around the Sun. So the movements that the Sun seems to make are nothing else than the effects of the Earth’s real movements.
“That’s crazy talk, Copernicus” said the religious people.
I wonder how many more years or centuries, it’s going to take for people to realize that the work of one person, Dr Wakefield, was not heresy.
Sometimes I feel like we are in the 16th century trying to describe that vaccines cause injury and death.
“What are you talking about? That’s crazy talk, its the 21 century” they say.
Amen. I remember the early days when I had a deep yearning for Mary Poppins to come to my house to cook those three or four different dinners and know all the allergies, aversions, and supplements that must be hidden in the GF/CF/SF food — someone else who would not only know what was on or off the list but also know WHY, and WHAT would happen if all did not go according to plan, and HOW to fix it. This yearning was as foolish as wishing for a competent pediatrician, or expecting Prince Charming to show up at my door with a glass slipper in one hand and a cold gimlet in the other. My grandmother had a saying — “Never grow a wishbone where your backbone ought to be.” Now that the darkest days are (hopefully) behind us, my yearning is for truth AND consequences. Ready to put my backbone into it.
Garbo, you put your backbone into it and I will have your back! It is well past time to turn this shit around!
That about sums it up!
Wow. You hit the nail on the head. I have twins (almost 6 years old) with Autism. Both regressed after vaccines. This made me cry but in a good way. I’m not alone.=*)
Brought me to tears. Yes, this is our reality. Most of the time, we get through okay; most of the time, I can get through the day without crying, screaming, or wanting to just run away from it all. Sometimes, though, it is good to cry — cathartic, cleansing, and perspective-refreshing. Thank you for putting it so beautifully, and in ways that everyone can understand. I will DEFINITELY be sharing this with family members.
Thanks, Allison for this piece. Love the reference to Goodnight Moon. Best childrens’ book ever written.
For me it’s Goodnight Autism-Everywhere.
Maurine
Agreed — very well said. We try to explain to family and friends the myriad differences in our daily routines, but it doesn’t seem to sink in.
This post is very powerful - made me cry. I am so sorry to all of the parents that have to face this reality.
Still I know there is healing - even from autism. My children were not autistic, but they were very sick and our doctors (neurological chiropractor and environmental MD) believed that they were on the way to becoming autistic had we not gone down the path of healing that we did.
One thing I leaned the hard way is that there is POWER in our words. Actually, life and death are in the power of our words - our words don’t just effect thoughts and feelings - they effect our bodies too. If there was one thing I could go back and change in our battle with chronic illness caused by toxic overload I would have spoken life over my children rather than claiming the illness.
Praying for those families facing this battle. Joining in the desire to make the reasons know.
Nichole, your comment is really wise. What is the expression “you get more of what you focus on?” Sometimes I worry about that, that I am not marinating Nick in enough of life that is in him, rather than what needs healing.
WOW. Right on mama mac!
Coming from the pre internet, pre facebook world of Autism, I would have given anything to be as connected back then as I am today. I would also give anything if this had not happened to tens of thousands of children since it happened to our boy. It sometimes feels like we are screaming into a hollow hole about all of this, but writing like yours will make such a difference. So many shares going out over facebook,so that more and more will read it and pay attention.
Someday I hope we will all get to say Goodbye Autism.
Amen, Miss Karen.
This is an absolutely wonderful, thought-provoking and well-written article. She’s pointed out that one time of the day when the epiphany hits us of “how many other moms are doing the same thing I am…RIGHT NOW?”
Way too many, that’s for sure.
Goodbye, Autism…Yes…
Well done, MamaMac.
KWF-I totally agree!!!!
My heart ached as I read this. Ache for our family and the struggles we regularly face, for the families that have far greater struggles than our own. This is poignant and articulates so well the inner conflicts we daily face as we make every effort we can to heal our little ones and repair the damages done.
Beautiful. Brought tears to my eyes. You are right - we are all connected, and through this shared experience not alone.
Beautiful, Mama Mac. Strangely, when Eric was at his worst, I would recite Goodnight moon to calm him. Some nights, as I lie in bed, listening to him “stim” over the monitor, I think about that simple book and wish nighttime was just that simple.
I loved it!
Reading this via cell in the Walmart parking lot with tears in my eyes. Tears from reading your written words of thoughts I’ve had almost every night, tears for our children, and for our families. Also, crying because that book eerily brings me back to the happiest time in our lives….before his injury, before having to watch him suffer and struggle daily. Emotionally hard to go back there…..it is when I realize the most just how much has been robbed and stolen from my son, from our family, and countless others out there.
“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….”
This. This is my son. I try (but fail) to explain to relatives that yes, he is eating enough but no, he does not gain weight. ‘Just keeps getting taller. Then I hear comments like, “We should all have that problem!” (<- meant to be funny) or "It's that diet you have him on." (<- meant to be judgmental).
Thank you for writing/sharing. I will pass along so that they will see that we're not the only ones. xo
I will remember this tonight when i go through my routine and know i am not alone…we are all in this together.
Love you, Momma Mac
Thanks
♥
Well-said as always, MamaMac. Just the sad truth for our sweet little ones — and us. Thanks for fighting!
Amen Mamamac. Now let’s do it! Let’s end it!
love it, mamamac.
Much of this has been my life for the last 17 years and still is…..just last night, for example.
One of the best blogs I have ever read. Wonderfully stated. Change is indeed coming.