By Carrie Cariello
Mom. Can we take. My autism away.
Today, I did one thousand things wrong.
I broke a glass at exactly 6:01 this morning, and I forgot to switch the laundry.
I had a terrible workout.
I missed a meeting at the school and I barely made it home in time for the bus.
I ran into an old neighbor in the grocery store and I could barely contain my annoyance when she kept blathering on and on about all the trophies her son won for swimming this summer.
The afternoon wasn’t much better. I got frustrated with you when you kept asking if you could download a new song. Then I found you in the basement, stringing together all the Christmas lights even though it is barely the middle of September.
Daddy came home right before dinner and he kissed me at the stove and I complained he was late and his mouth turned sour.
At bedtime, I snapped at you because you wandered downstairs eleventy million times.
When at last the house was quiet, I sat at my desk and I wondered what this is all for—the snapping and the wandering and the autism?
What is it all for?
There is a reason.
Would I take your autism away?
This is what we autism parents ask ourselves the world over—we wonder if we would we turn back time or change genetics or hand out a magic pill to erase the spectrum disorder.
In the still of the night, we turn it around and around in our bleary minds.
When the sun rises, we are chipper again. We accept our responsibility—we don’t question the way it destroys our marriages and our self-esteem and our friendships.
At the same time there, is a lump in our throats and we swallow it. We force ourselves to forget about the idea that maybe, just a small maybe, we would change it.
See, we can’t say it out loud because it means we don’t love our special children enough and we don’t accept them for who they are and we are bad, bad people.
I love you.
I accept you.
This afternoon I went to the outlets to look for some running shoes. I saw a woman pushing a stroller, so I looked inside—I always look in strollers, because I love babies, especially when they aren’t mine—and in this stroller was a little girl with bright blonde hair. She was probably three years old. Her sneakers were pink.
Her face was arranged differently than ours. I am not going to go into details, but let’s just say she was hauntingly beautiful with a nose out of place in the way that leaves you aching deep in the middle of your rib cage.
Sometimes I hear people say there is nothing they would change about autism.
Nothing? I want to ask.
Not the brutal honesty, or the endless perseverations, or the crushing anxiety?
Not the inner turmoil I see witness inside your very soul–the perpetual longing to belong, balanced against your own pressing need for solitude?
Would I take it away?
Can I take it away?
Perhaps you and autism are inexplicably bound together. If I were to remove the obsessiveness, the memory, the stimming, the honesty, nothing would be left but a shell of a boy—empty, and hollow.
To change one thing would mean changing it all, I guess.
But aren’t we already working to change you—little by little—every single day?
Social stories, special schools, medication, education plans, books, feeding therapy.
When I sit at my desk after an especially long day and I consider the meaning of it all, I always come back to one thought.
We need you.
We need you, and we don’t even know it.
We need you to remind us that different is still equal.
We need you, and others like you, to alter the face of the traditional classroom, and the workforce, and politics, and sports.
We need you to help us grow into the people we are already supposed to be.
Sometimes I think of hope as a bag of rocks strapped to my back. It is heavy and I lug it around until I am sweating and shaking.
I hope no one hurts you.
I hope you will be okay when I die.
I hop you know how much I love you.
See, compared to love, the hope is easy.
If hope is a bag of rocks, then I think love is the wave of an ocean.
Again and again, the wave returns to kiss the shore, no matter how often it is turned away.
Why does it do this?
Autism brings out the worst in me—the shouting, frustrated, uncertain worst.
You also bring out the best.
Would I take your autism away?
Maybe I would, if not for me, but for you.
I can’t though, that’s the thing.
I can’t take it away.
I know, it’s not fair.
If hope is a bag of rocks and love is a wave upon the sand, then fair is a four-leaf clover. Other people talk about it, but you hardly ever see it for yourself.
Jack-a-boo. I have made a million mistakes in my life.
But you, my son, are not one of them.
Because of you, I am brave.
Because of you, I am different.
Because of you, I see those who may go unseen.
Today, I did one thing right.
Hey, pretty girl. I love your pink sneakers.
She had the widest smile, and her eyes were blue like the sea.
Sometimes, it’s still hard to talk about. Sometimes, the blame and guilt are so heavy that it feels like an anchor that’s attached to my foot, one that resides in the middle of quicksand. Sometimes, I can’t find the strength to step outside of it, so I find myself sitting in the middle, focused on taking the next breath…and then another. Sometimes, but not all the time.
“Sometimes” seems to be what we gravitate to, more often than “not all the time”. Why? Because its imprint on our bodies and souls is so profound, that it’s almost impossible not to. But, how do we learn to redirect our focus to “not all the time” and allow that to be where we go first? We make a decision to make a choice to do it differently.
It is not easy. There is no instant gratification when it comes to trauma. It takes time and energy and strength…some of which we do not know we have inside of us, until we are forced to find it.
“Sometimes”, it’s still hard to talk about my own journey through autism. “Sometimes”, when I recall being accused of being the cause of my baby boy’s pain and struggle. “Sometimes”, when I recall the faces at the mall that shoot grimaces towards me that cut directly through to my heart, as if I have done something to my baby to make him scream or as if he’s being “bad” and I’m a horrible parent for not punishing him. “Sometimes”, when I remember walking with and gently bouncing him for hours throughout the night, praying to GOD to help me soothe him, so we can both get just a little sleep. “Sometimes”, when he finally stopped crying, but went silent…lost in his own mind.
I was forced to find “not all the time”. I knew somewhere deep inside of me, that my son would be lost forever, if I did not find the strength inside of me to stay firmly planted in “not all the time”. My endurance and tenacity had to become so fierce, that nothing would stop me from asking questions, getting answers and doing the work. “Sometimes” gets lost, when we’re in the midst of the work that it takes to get to the place of “not all the time”.
It us took years. A lot of them. But, I stayed firmly planted in “not all the time”. I stayed diligent to the process, as if there was no other choice. When “sometimes” crept back in to my mind during an especially hard moment of watching my baby boy struggle, or having to defend myself or him, or long and exhausting therapy session after therapy session…I always found my way back to “not all the time”. I don’t know that I would have found my way there, if it wasn’t for the choice that I made to do whatever it took to help my baby out of his darkness.
The truth is…we are human and we are forced to learn to grow through our trauma and develop coping skills. It is a different process for everyone. I learned how to find “not all the time” more often than “sometimes” because I need to stay hopeful, for him…and for me. Hope led me to “not all the time”. Hope led Luca to becoming the 10 year old boy today, that was once locked in his own mind, unable to speak and miserable in his own body….to a brilliant, talkative, amazing boy who LOVES life. Hope makes all things better. Hope leads us to healing. Hope leads us to “not all the time” more often than “sometimes”.
I hope you’re able to find “not all the time” more than “sometimes” and know that by being hopeful, you’re taking baby steps in the right direction. You’ll never get “there”, because it’s a journey that has no end. But, life does get better as we continue taking deliberate steps and making choices to stay hopeful.
Big love to you!
Blog contribution from Winging It: The Okay Mom Way
I have a beautiful little free spirit in my middle child. She plays hard, fights fierce, and loves with abandon. This strong willed little thing has taught me some big lessons.
Here are a handful:
1. You don't have to match. At all. Stripes, plaids, mismatched shoes; If it makes you happy put it on. Its an outfit, not a peace treaty.
2. Food. Is. Awesome. Like seriously awesome. Eat all the food, but only when you're hungry.
3. Forget dancing to your own beat. Step that shit up and create your own marching band. Life is short. Be fierce. Never apologize for letting your light shine. Shine that stuff everywhere, it makes the world a better place.
4. Enjoy the little stuff. The smallest things can bring the biggest joy. Take the time to stop and breathe it in. You'll be better for it.
5. Get dirty as much as possible. Lessons are learned when a little dirt and a lot of imagination meet. All good foundations have a solid layer of earth beneathe them.
6. Fall down. It's the only way you'll ever learn to get up again. Bruises aren't permanent. Walk it off. Scars give you character. Character gives you courage. In falling and failing, we often learn to fly.
7. Anger is healthy. It's necessary to be angry sometimes. What matters most is how you deal with that anger. Anger may be healthy, but hate is not.
8. Do not flush stuff down the toilet. In the case of plumbing what goes down tends to come right back up.
Eat the cake.
Wear the pants.
Stop to smell the flowers.
Make your own adventures.
Apologize when your wrong.
Avoid poor plumbing choices.
Deep breathes friends, because every little thing is gonna be alright.
Love and light from another momma in the struggle. <3
By ARTC Founder, Tracy Sekhon:
As I read through the previous blog posts and the many stories, mostly of hope and healing, in my blog file, in preparation for this new post…a wave of emotion came over me as I realized how much more our stories are the same, than they are different. Sure, the details of our journeys vary. But, there are definite common denominators, when it comes to how autism affects our children. There are common denominators when it comes to parenting a child on the spectrum. There are common denominators regarding the challenges we face when trying to determine what to do next. There are common struggles with therapies and treatments, with sleep and schedules and finances. Yes…we are more alike than we are different.
Autism is a journey. Sometimes our journey is long and painful. Sometimes our journey is short and somewhat uneventful. Sometimes our journey leads us to places we never thought we’d go. Sometimes our journey becomes our teacher. Sometimes our journey leads us to a new appreciation of life and of love, of challenges and of gifts. Sometimes…we are forced to relinquish control and learn that we become more liberated because of it. It’s different for each of us…but, this I know for sure…it’s a journey that matters.
I have learned that my journey, with two boys on the spectrum, has lead me to my purpose. I have been gifted these two amazing little boys to teach me about what it means to be a truly unique person. I now understand what it means to live outside of the “box” that society expects us to jump in to. I now understand that sometimes, functioning outside of the proverbial box is not a choice. I now understand that I have been put on assignment to teach others this. I have been put on assignment to help others navigate autism and to use my experience to show them the way. I have the unique opportunity to draw the roadmaps to options that can lead to a better life. I have the opportunity to hold the hands of those who need support, and to wrap my arms around them and lift them up. For this gift, that my boys didn’t know they were giving to me, I am so grateful. ARTC is my assignment. And, it is my intention that I will complete my assignment with the highest of honors…and that will evident by the lives that are changed because of it.
Thank you for joining my journey…and allowing me and ARTC to be a part of yours.
Blog contribution by Love & Autism
In 2014, what began as a local conference has turned into a movement to change how the world views autism. If you have a child with an autism diagnosis, you have probably been surrounded by the negative, doomsday way of thinking that says “there is no hope for your child”. We are here to tell you, that is NOT true. How do we know? Because we listen! We listen to autistic voices. If you really want to know what something is like, go straight to the source. As parents, you are yearning for a deeper understanding of what it means to be autistic. This makes sense. We know you want to better support your child now and want hope for your child’s future.
Sleep. For some of us, there is/was little. And, for all of us, it is/was hard. I haven’t forgotten the many days, weeks, months and (yes) years, without enough because I spent most nights holding my baby, often in the upright position.
We called Luca our “hold me baby” because most often, he refused to be put down. We would swaddle him tight and lay him horizontal for a short period of time…but it didn’t ever last. He simply could not stay asleep when he wasn’t in our arms and in a vertical position, wrapped up tight in a blanket. It was bizarre to me, that he wasn’t overwhelmed with being held so much. But, my little boy needed to be held A LOT, so we held him. And, though I didn’t understand why it was such a challenge, I wasn’t willing to overlook the fact that he needed something different than other babies. It made for very, very long nights and very groggy days.
by Marcia Hinds – Megan and Ryan’s Mom
It is not like I woke up one day and BAM my kid was better. Although Ryan is now an aerospace engineer, his recovery from autism was S-L-O-W. It took years. After two steps forward, he’d take one step back. Sometimes it was two steps forward, three steps back.
In the beginning of our autism nightmare, even I didn’t believe my son could get better or have any kind of life. Ryan had too many strange behaviors. Most times he acted like we weren’t there. I wanted some sign that he understood or heard anything we said. He gave us nothing. When I’d ask a doctor or teacher if kids with autism ever got better, their silence was my answer.