One thing I can assure you, after reading comments from the survey…All of us live in a very tight-knit world? Not because we want to, not because it’s where we want to be…but because it’s safe here. Safe for our child, safe for us…safer from the rest of the world.
All of us, WISH with all our hearts that “others” (I call them “the normals”) were willing to attempt an understanding of what our life is really like. Most of us keep to ourselves, shielding the unknowing “normals” from the reality of how difficult autism life can be. We shield our churches, our friends; we even shield our family members. We shield the world from what it’s like to live with “a real boy.”
We remember when we had LIVES, with jobs and date nights, and vacations…we remember it.
But that was when we were allowed the luxury of those things. The more challenges autism presents us with, the tighter the protection, and the more secluded our circle becomes.
Who can you trust inside your circle? Who can you allow to SEE, I mean really see what happens in the darkest moments? Who can you trust to see all of what one autistic child can bring into a family?
Who can be trusted to know your 25 years old still wets the bed? Who can be trusted to know that Your son has smeared fecal matter down your wall for the last 15 years? Who will be able to remain calm when your son breaks the sheetrock with his head in a fit of frustration? Even the small things, who can you trust not judge you when they see that your child STILL won’t use his fork to eat even pasta? WHO, can be allowed inside the tight circle of autism’s realities?
When I started thinking about the tight circles we all live in, I thought of Jesus and his small inner circle. He had 12 disciples. He had thousands of followers who swore their undying love…but he had three. Three he allowed to experience it all. Then I wondered if even He had to limit who was capable of managing His reality? Jesus life taught everyone that saying you love someone, and demonstrating that love are two very different things. Somehow our world has equated loving with approving. This is the tight rope of autism families. If you say it, but you do nothing, we KNOW we cannot invite you in.
I once asked Britton, “what was the hardest part of being autistic?” I expected the pain, the frustration.
He typed, “I am utterly alone, a broken body.”
The priorities of my life cracked into a million pieces…they slid apart, and though broken they created a new picture. I’m only his mother, how can I promise he will never be left alone? The day will come when I will leave this world, and I do not know if my will is strong enough to force my old body to keep trying, but if a mother’s love is as powerful as some say…I just might live till he takes his last breath.
His dad and I are what he has. He has sisters, but they moved out a very long time ago. Neither of them has seen him have a seizure, (and he’s had hundreds) they have not lived in the house with him since he developed Crohn’s disease, or spiraled into the nightmare OCD’s of pandas. The number of times he washed his hands for endless hours, watching the skin peel away, leaving raw flesh…all while he cries because he can’t stop. They love him, but they do not truly understand what his life is like now. They say we “pamper” him when the truth is…we pamper others…not, allowing them in.
Parents aren’t the first choice of any 28 years old. He’d rather friends, siblings, aunts, uncles. Every adult wants free of their parents, including him. We were on vacation once; it was back before seizures, Crohn's disease and pandas…all the additional surprises that now make “only autism” feel like a cakewalk in comparison. We took a walk on a relatively deserted beach in front of our room. Britton kept walking ahead of us…way ahead. Like 30 feet ahead. Strolling and pretending he didn’t know us, walking like any young man, free and on vacation. I was going to run and catch up, and my husband grabbed my arm. “Let’s let him walk alone; he wants to be free of us, of autism. Let this be his vacation too.”
We walked along behind him tears poured, and we decided we would walk till he was ready to turn around. The longer he walked alone, the happier he became. People walked by him and nodded; he nodded back. He scared one young woman to death by squealing like a dolphin and skipping away. He pretended he was “normal” and for a brief moment, he was. We wiped our faces, and after about an hour we yelled at him to turn around.
He wasn’t ready, but it was getting too dark. He refused to come and sat down on the shore and began writing in the sand. We caught up with him, and his dad sat down beside him. A sudden rainstorm came, we pulled out a plastic sheet we had in our backpack. I stayed back, letting it be just the boys, only two guys sitting on the beach.
The joy of that moment was just us…his inner circle. I know that Jesus was there too, watching, relishing Britton’s
delight in such a simple act for most young men; but it was an extravagant luxury for our son. Sure it was pretending, sure he only wished…but
The sun set, and it was time for the fantasy to end, but ohhhh the joy of those moments.
He skipped all the way back to the room and fell asleep in his clothes so tired from the exhilaration.
It's true, our circle is indeed small…but our joy is big, oh so big. If I invite you into our circle, it is a sacred invitation. One thing I can promise you, It looks very different from the inside out.
