One Thousand Things
Mom. Can we take. My autism away.
Oh, buddy.
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.
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?
Why does it do this?
Autism brings out the worst in me—the shouting, frustrated, uncertain worst.
And yet.
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.
September 16, 2019 @ 10:05 am
Carrie, every Monday morning I read your blog and it speaks to a small part of my heart and soul. I have two amazing young boys on the spectrum. They try me, my marriage and my family. But I love them fiercely. They have changed me and they have shaped my view of the world around me.
These children, teenagers, young adults and adults on the spectrum are here. Part of the world yet separate, but they are here to challenge us all to include them in the way that works best for them. Would I change them? No, not really. But I would change the world so they can be included and accepted.
I think that is what I like the most about your blog, is the way you explain autism to the world. Thank you.
September 16, 2019 @ 11:44 am
Autism does change us mothers. I try to remember what i was like before my son was born and diagnosed. But, it doesn’t matter really.
My husband and I still worry about him and his brother who has his own struggles.
And yes, autism has caused strife in our marriage. It’s the one issue that we both feel passionately about, so we don’t talk about it much. Better to brush some things under the rug.
But all in all, our Andrew is happy.
That’s all we can hope for in the end.
Take care Carrie. Let go of those things we can’t control. Embrace your son’s differences and he will thrive from your love and attention.
Hugs
Teri
September 16, 2019 @ 7:55 pm
Have you set up a special needs trust? Do you have life insurance to fund it? Do you have a will? These things can help you feel better about “what will happen” to your child should you die.
September 19, 2019 @ 9:28 am
Carrie, that it the ‘forbidden question: “If I could, would i……”. I can’t even bring myself to finish the sentence. Do we ask ourselves that? Sometimes it starts to form in my brain and I quickly change the mental subject. Just like I never think about where some of my food comes from when I am enjoying a nice meal. Hide the thought. Dont let it fully form in your mind. I remember when we were trying to get services for my son (his name is Jack too…………I called him ‘Jackie Bear’ when he was young) we had a full neuropsych work up done at the Yale Child Study Center. They came back with a full 19 page report. Significant ADHD, severe memory deficits (working, short term, long term, info presented verbal and written), and……….ASD. Back then it was PDD-NOS. As we prepared to go to the PPT, I asked that Yale give me a one-pager specifically noting the ASD diagnosis. They sent me a letter stating that my son was on the Spectrum. I remember going to the fax machine at work and getting the letter. I was immediately thrilled since I knew that when I presented this to the District they would have to provide my son with the services he needed. Then I sat down at my desk and cried…. because my son was diagnosed with autism. But at least now I could get him the services he needed (or at least have another weapon in the fight to do so).
Do I allow myself to ask that question? No (or at least I try not to). Its like trying to stop yourself and your sisters from creeping downstairs on Christmas morning ostensibly to ask your parents a question — but in reality conducting a covert recon mission to see what’s under the tree. It is tempting but forbidden. But at times, in a moment of weakness, the thought creeps into your mind. Do you allow it to stay? Or do you banish is? How does the question even present itself? Do you wonder, what would my son’s life be like without autism….or do you wonder what would your life be like if he did not have autism (if the latter you are then confronted with the shame of considering this selfish rumination). Do you consider what would life be like if your son was ‘typical’, or you think of it in profane terms of what would it be like if your son was ‘normal’? Carrie, I get your blog every Monday and when I feel brave enough I read it. I find that my experiences and thoughts are often like the left rail to your right rail on the train tracks — running parallet into the mist. My wife gave me your book ‘What Color is Monday’ for a Father’s Day present. I read it this summer on vacation. At the end you are discussing how you have become a better person and brush on the topic of change. I dont know what I would do with if given this magic wand. Certainly I love my son with all my heart.Would I chage him? Would it be for me..or for him? Is it changng him or freeing him? Is it chaning him or making him ‘better’? As you mentioned we do things already for them (social skills classes, special schools, medication maybe…etc). Is that changing them or providing them with the tools they need to cope? I don’t know. I can tell you my biggest wish is that my son be ready, able and prepared for when I am not here. I know for sure that this is what I wish for.
September 21, 2019 @ 3:23 am
I would get rid of my son’s autism in an instant if I could! Let’s not be afraid to say it!
Autism doesn’t define my son’s personality, he would still be really good at math, a great swimmer, he would still love chocolate, a cuddle and be the cheekiest boy ever!
But he would also be able to go to our local school with his big sister and he would be able to play with his peers which is something he craves so badly but just doesn’t know how to do!
And we would not love him any more than we already do!