I watched a lady recently talk about all her “troubles.” Randy sent me AWAY because there had been so many seizures and after being awake all night I was buzzed. Not on alcohol, on adrenaline that wouldn't shut off after the stress and sleep-deprivation.
It was an exciting proposition. Getting my toenails painted by a professional. The water was so warm and the massage chair was hitting all the right spots…I was starting to fall asleep with the luxury of music and someone rubbing my feet. Then, a woman sat down beside me in the next chair. I heard her talking, so I opened my eyes, looking around to see who she was talking to. Apparently, it was to anyone who was willing to listen…or anyone who couldn’t getaway.
She began with how awful it has been not to be able to get her nails professionally done for all those months. How difficult it is to buy clothes online without trying them on. The cruelty of masks that wipe off her lipstick. The list was long and very "upper class." Which included no vacation outside the country, and the frustration of folks that can’t wear a mask not staying home when they should.
I confess, I never even nodded, never turned my head. I gave every physical signal a person can, that says leave me alone…including closing my eyes and pretending to sleep.
If I’m being honest, I frowned a lot, even with my eyes closed. I found it almost impossible not to say things like, “you’re kidding me right? I wanted to explain that I’m an autism mom, those things are not “regulars” in my world anymore. Those things have become extravagant luxuries… for a woman who has made herself not wear the same clothes she slept in.”
I realized as I sat there, that she was going to make sure I heard her. It was a good lesson.
I began to wonder about my own tenacity when it comes to speaking up about the autism life. I try to speak up, and even though I am painfully, transparent when I tell someone close to me what life is like…perhaps I still shelter those I know can't understand. It's not a judgment, it's just an honest observation.
Even those closest to us still ask about things that leave me confused. Things I thought they understood. Usually, it's about things we can't do anymore or places we can't go. I thought I made myself heard.
For families who walk the tight rope of seizures, severe autism, pandas, and Crohn's disease...we do not live the same life as most of the world. Our children don't fit in most places. They can be disruptive, they can often not handle the smallest events of everyday life.
Maybe you see us out in public, and you think things must be going quite well for our family. It looks like we’ve found a way to balance all that autism brings. (Autism defined by Rain Man, or The Good Doctor). But really, we spend our days on the edge of a blade, never knowing which side of the knife we will fall on.
You might notice his odd OCD behaviors, his constant need for me to squeeze his hand or kiss his cheek. But usually, people are gracious and tell me how well I'm managing our life. How good he looks, how amazing that we can survive under such difficulty. (Most don't know what the difficulties are, they just know they exist.) I have fooled you into believing that we safe rather than dangling precariously from a high trapeze of unpredictability. That's hard enough, but with autism, there is no safety net.
IT'S ALL A MIRAGE. BECAUSE I am determined that you SEE only what I want you to see.
At church, when he's capable of going, he seems like a calm, easy-going young man who is participating in life to the best of his ability. Maybe that is what he is. But underneath that facade of perceived calm, there is always the autism storm that brews so constantly...I pray to hear the thunder and the crackle of the lightning before anyone outside our world notices.
We are so blessed at church. People are kind to him, they include him, they speak to him. They touch him, shake his hand, treat him like he belongs... like he matters. I cannot express how amazing that is to us...how it blesses us, and also, how uncommon it is.
I want people outside our world to only see the best of him. I purposely leave the broken world out of sight, my goal is to make others more comfortable with autism. But the pressure, of controlling the uncontrollable...I have often had two or three panic attacks before I even get to church. My heart palpitating, I’m sweating and terrified that he will have a meltdown inside the big auditorium full of people. But I get there and do my best to pretend I’m good, he’s good… it’s all good. I try so desperately to remember why I am really there.
Those with autism have become a type of disposable population. So many are tucked away in group homes, and state schools. They are not easily understood or managed outside the safety of their world where they know how to function. We have bravely or perhaps foolishly decided to take our son with us everywhere we go. It’s important, for my son's life and future, that he is seen as a valuable human being. Someone that has something to give back to the world, even if they have to dig to find it.
The younger children with autism are still treated like there is a possible future for them, but the older they get the less likely the world is to consider their value.
I have a great many "friends" on social media. Autism parents like me who have adult children with severe autism. I read their comments and watch their family members make disparaging comments and suggestions. I do understand that the difficulty of the nonstop caregiving gets old to those watching you live it. But I wonder if they ever really stop to consider how tired that parent is almost thirty years later. How much strength is required to keep going?
The few folks I've ever allowed in my home are a little overwhelmed when they see the difficulties. We have done a great many things to make all our lives easier. Cabinets that hold only his food that is easy access for him. (We pray he eats, ANYTHING his gut hurts so bad.) His closet contains four shirts, if there are more he can't choose one, and he will become so distraught trying to choose there will be a meltdown. The pair of shorts, and one pair of jeans that he has worn almost every single day for four years. (I found a pair of his identical shorts on Poshmark and even though they were the wrong size, I bought them and took them up.)
At my house, I bathe my twenty-nine-year-old son every morning. Brush his teeth, comb his hair, put on deodorant. He tries to help with most of those things, and on the good days, he can.
I have a truckload of syringes and tablets and capsules all lined up and we take them as scheduled, changing on whether he can eat that day. He does not eat anything until around 2pm. His stomach just can't manage food well. We've been in the "I can't eat" phase for far too long. I don't know how long it will last. We do what we can, he eats what he can.
The complication of the autism life causes those outside this world to say things like, "why do you do all those things? You should just make him deal." LOL, That does make me laugh. I remember when I thought those same things.
When Britton was born I thought I'd learned how to raise a child. I had two beautiful daughters and they were turning out pretty well. Autism broke every paradigm I ever had. You can trust me when I tell you, one day with an autism family would be an enlightening lesson, in love. Not only our love for our son but our son's love for us. Above all - God's provision, and His amazing grace that helps us keep going each and every day.
But unless I told you, you wouldn’t know most of these things. I attempt to make things look “normal.” I strive to help people outside the autism world to be more comfortable with autism. AND...to be honest? I’m not really doing it for you. I’m doing it for him. If I can convince you that he is worthy of “life, liberty, and the pursuit of happiness, then it is an investment in my son’s future.
I won't always be here to create this mirage. I do all I can to help my son live up to the expectations of others. (Truly an impossible task.) But I pray, I pray hard that when I'm gone that others will see him through the mirage of possibilities that I have shown them. AND...maybe, just maybe they will be willing to help create a world that will tolerate his differences.
I really do realize it’s a big gamble. To gamble on the kindness of strangers, and the moral compass of a broken world. Some would say it is a foolish gamble. I'd have to agree, but there is God and all His promises.
So rather than believe I am gambling, I believe I am trusting in the goodness of a merciful God who loves my son more than I do. If I am gambling, it is you I'm gambling on. That you will step over the judgments, dodge the difficulties, and let love be the deciding factor. "For God so loved the world that He gave His only son..." What a "gamble" He took on mankind. I'd like to believe I'm not so much gambling, as following His lead.
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