The Hardest Part of Autism
Hi.
My name is Carrie.
I have five kids.
My second son has autism.
His name is Jack.
People ask me what I find the hardest when it comes to raising a child with autism.
Is it the repetitive behavior—the way he asks the same question 17,395 times, even when he already knows the answer?
Or is it the long IEP meetings in a room full of specialists?
Maybe it’s the time it takes away from my other four children, or the strain on my marriage, or trying to defend why we use medication to soothe his crushing anxiety.
I picture autism a few different ways.
I picture it as long strands of DNA, twisting and turning within a tender baby yet born.
I picture it as a Cheshire cat, smiling from every corner of the room.
It is an idea, a diagnosis, and a concept without a cure.
Mostly, though, I picture it as a living, breathing being who has wrapped himself around my child’s soul—a nagging vine twisting through his vertebrae, up through his heart, and into his mind.
Some days I think about who have might have been, without the slippery spectrum disorder.
A doctor, racing around in a white coat?
A park ranger, walking trails late into the night?
Maybe a mail carrier, or a franchise manager, or a teacher.
The funny thing is, I never thought of this stuff before he was diagnosed. I never pictured him as an adult at all, to tell you the truth.
It’s amazing the dreams you have once they are stolen from you.
Jack sweeps floors at the local Food Bank. Twice a week, he visits with his aide and he takes a large broom and shuffles it around the building for an hour or so.
When I tell people this, their eyes light up and they smile and they say oh how great he is doing something productive and good for him, good for him.
So I smile back and maybe the smile doesn’t quite touch my eyes, because the whole time I am good for him-ing, I am thinking there is not one person in this world who hoped their child would one day sweep floors.
I can’t help it. I want to be better than this. I am not.
But it is good for him. I know it is.
He shows up, and he sweeps, and afterward they get fried chicken at a place around the corner. This makes him happy.
And the truth is, if he wasn’t out sweeping and carefully ordering his chicken from the counter, he would be home, on my couch. Or arranging DVD’s in long, neat rows. Or wringing his hands and screeching because I told him to get off the couch, and stop messing around with the DVD’s.
So, it’s good for him.
It’s good for me.
Still, I feel uncertain about it.
I don’t know why.
That’s the thing about autism. The heartbreak is not one big wound, but rather death by a thousand paper cuts.
It’s not as depressing as it sounds, I promise. I mean, I do other things.
I get my car inspected and I buy almond butter for my oldest son.
I go out to dinner with my husband, and order books on my Kindle, and grill chicken for dinner.
Most days, I do all of this without at pit in my stomach. These are the good days.
Other days, well, they are not as good.
I think about how Jack may never have a car and he hates almonds and he hardly ever reads.
I think about the way he carefully sets the table for dinner, waiting—always waiting—for everyone else to come home.
You see, I am trying to examine autism from every possible angle—to hold it up to the light and try to see the color, and at the same time understand the darkness.
I guess you could say I am engaged in a great big game of tug-of-war. I stand on one side of the rope pulling, and straining, and sweating.
While I am pulling, I have to fight off the fear that swarms my head like a bunch of angry bees.
What am I so afraid of, you ask?
Well, the obvious stuff, of course.
I’m afraid he’ll shout a bad word in church.
I’m afraid he’ll never make friends.
I’m afraid someone will hurt him.
Mostly, though, I am afraid of what every single mother and father is afraid of—I am afraid I will fail him.
I am afraid I will leave the proverbial stone unturned. And beneath this stone lies all the answers to the very questions I have struggled to understand.
How do I motivate my son?
How do I connect him with others?
How do I provide for him when he is an adult?
How, for the love of all things good and holy, do I get him to stop swearing?
On the other side of the rope is my silent opponent—the twisting vine, the Cheshire cat, the thief in the womb.
Autism barely even breaks a sweat. I have a feeling there is little, if any, exertion.
I pull.
Autism stands strong.
I scream.
Silence.
Where is my son in all of this?
Jack-a-boo.
Jack-attack.
Autism wants this boy of mine. I can feel it.
Autism wants my son to repeat himself over and over again and worry about the weather and check Rotten Tomatoes and feel twisted up lonely scared all the time.
I want him, too.
I want him to be the best person he can be.
I want him to have choices.
If he wants to clean floors and stock shelves, fine.
If he wants to be a teacher, or a manager, or a park ranger, I will try to get him there.
I want him to know he is whole, and loved, and good.
What does Jack want?
Well, the simplest things, really.
Fried chicken in a red plastic basket.
A neat row of DVD’s standing upright on the shelf.
The hardest part of all of this for me?
I have to love them both. I have to love my boy, and his autism.
I love the boy. I love this boy the way the moon lights the earth during an eclipse.
To love autism? Well, I am trying.
I am trying to give the rope some slack, slowly and gently, until our fingertips touch.
July 22, 2019 @ 8:54 am
I used to love your blog. The negativity has really taken a turn and every post seems to be about how hopeless you feel and how you don’t want him to sweep the floor and you’re trying to love his autism. At the same time, you say it is a strand of his DNA. As a mother you love your children with your whole heart. You should not have to try to love the autistic part.
Yes, I have a son with autism. He is 16. He is at ESY at this very moment where he is working in the garden and the bee keeper is coming today. Later this week they are going bowling and HE IS HAPPY. Before my kids were born, I didn’t know if they were boys or girls, shy or outgoing, athletic or a klutz like me. I did not know if they had autism or not and to be honest, it matters not. The only wish I have is to make life a bit easier for him.
I wish the sentiment that you put out was not so negative. Not all parents of children with autism are miserable.
July 22, 2019 @ 10:25 am
I am sorry to hear this, Laura. Perhaps we are at different places on our journey with autism. I wish you all the best with your son and your family.
July 29, 2019 @ 9:14 am
I feel exactly like you Carrie, and am glad someone can finally say ” Yes, I love my son, but Autism sucks and I would truly love a cure!!
July 22, 2019 @ 10:38 am
I love your writing! Life is full of ups and downs and positives and negatives–sometimes at the same time! I like that you share your feelings whether they are perceived as positive or negative, it is just feelings put into writing…
July 22, 2019 @ 12:00 pm
I also love your writing; I can very much relate to your blog. I don’t find your writing negative. I find it real, raw, and beautiful. Thanks for having the courage to put yourself out there for the world to judge.
July 22, 2019 @ 12:08 pm
I love reading your blogs. Somehow you have always managed to put into words my feelings about my own son and my own family & marriage. I don’t see your writings as negative, but as REAL. Keep on writing. Thank you!
July 22, 2019 @ 12:17 pm
It’s funny, mostly, I read both struggle (which I suppose can be seen as negative) and hope in your words. Here and on facebook. Some days, it is almost impossibly hard, you are telling us. And some days, it’s great. And some days, it’s just your life. I don’t have kids with autism. Or kids at all for that matter. But I work at a nature center and work with school groups, and families, and kids of all types every day. And reading your words each week helps me to better understand what our families are going through. To try to help make triumphs happen and offer support during the troughs. I appreciate how willing you all to put it all out there, and know that it is helping us learn!
July 22, 2019 @ 12:29 pm
I have followed your blog for several years, and through my tears – thank you. I feel less alone. This is a difficult journey. One that we never planned on, but will travel for the rest of our lives. Thank you from the bottom of my heart for putting what I feel into words.You are beyond a blessing.
July 22, 2019 @ 1:16 pm
Carrie…..I have not read a post in a while but I do love your writing and your honesty about the struggles and the wondering about what will be the future for your child. We wonder about that for all of our children but it is different for our children on the spectrum because as you said there is player involved, called autism. My son was diagnosed on the spectrum when he was 3 years old. It seems so long ago and yet the scared feelings and worry are not hard to recall. They come right back and I read your post and I know how blessed we are and how far my son has come. He is packing his bags and completing his new student checklist as he prepares to leave for Syracuse University…….I cannot even believe it but he did it. Of course all the worries come back because this is a whole new level of challenges and I won’t be there since he will be so far from North Carolina. He is the sweetest, most charming boy and we will work on doing the laundry and cooking a few things and I pray he continues to self advocate and I hope that a career in broadcasting becomes a reality and that he does well at school. Thinking about you and Jack and your family and praying for my Trey. I think that he would like Jack.
July 22, 2019 @ 1:47 pm
You write what you feel, dear Carrie. You don’t hold back and we love you for it, and you help most of us put in words what we cannot. I’ve been struggling with this for over 30 years, and I don’t know if it gets easier, or I have just become numb from all the hats I’ve worn over the years, and without a mate for most of it. Every week when I read your blogs, I feel better, sometimes cry, and laugh and worry. But I know what we go through, who go through together. God bless you and your family.
July 22, 2019 @ 6:06 pm
Carrie. I have been an avid reader of your blog for years. I love your candid thoughts and views. I think when people sugarcoat nuanced feelings and situations like yours it is actually patronizing. This blog is a lifeline for people. Keep going
July 24, 2019 @ 1:12 pm
Carrie – I have been a devoted reader of your blogs for many years. My daughter works with adults with disabilities in Indianapolis and I often talk to her about the things you write in your blog. I’ve noticed that your writings have focused more on the struggles lately. I think it makes sense as Jack gets older. My cousin has a daughter with an intellectual disability and as she got older, my cousin and her husband became more serious in their discussions of her future. Where does she fit in? Who will take care of her when her parents are gone? Here in Illinois, you have to go before a judge and declare that you want to live with your parents if you’re an adult with a disability. This can be very upsetting. I like that you do not turn away from the hard truths. Keep writing and we’ll keep reading.