I Know Why He Has Autism
Hi.
My name is Carrie Cariello. I am forty-two years old.
I am married to a man named Joe and we have five children.
Twelve years ago, I gave birth to a baby boy with a neurological disorder called autism. It impacts the way he eats, sleeps, talks, and thinks.
He is considered special needs, because his needs are special.
For example, he needs to ask me thirty-six thousand times what the plan for the day is, even if it’s just a regular old Monday and we’ve had the same plan every Monday since the beginning of September.
He needs to sleep with six pillows every night or he flips out at bedtime.
He needs medicine to cope with his overwhelming feeling of fear and anxiety.
He needs to roll all of his food between his fingers before he eats it, even meatballs.
I have a child with special needs. Sometimes, I can’t believe it myself.
I mean, it’s easy to understand the who and the what and the where and the how of it all.
My child has autism and it is in his brain and his heart and his soul and his body. It is the result of a complicated mutation in genetics and DNA.
Also, my in-laws.
(I mention my in-laws here because I usually try to blame my husband’s side of the family for the autism gene. As you can imagine, this only helps to strengthen our relationship.)
And yet there are times when I don’t understand the why.
Why did I, of all people, have a boy who needs medicine every night just to sleep and has to touch all of the food on his plate at the dinner table—a boy I hurt for and hope for and love so much that my heart squeezes together?
I have to admit I don’t spend a whole lot of time trying to answer this question because frankly, it’s pretty pointless. It doesn’t change anything.
But every once in a while, when I’m feeling particularly pensive or sad or nervous, it flashes across my subconscious like a lightning bolt. It is bright, and hot, and I don’t want to reach out and touch it because I’m afraid I’ll get burned.
Why me?
Why did God or the universe or the complicated twist of genetics give me a child with special needs?
Why do I have to think about the long-term effects of medication and wipe greasy meatball fingerprints off the counter every single day?
Why do lie awake at night, worrying about what will happen when I’m not here anymore?
Maybe it was so I would stay married.
Oh, don’t get me wrong, I love my husband. I have loved him for twenty-three years. I love that I know his favorite band is Rush and I love the way he stands at the sink in the morning and brushes his hair. I love sound of his laugh when he hears a good joke, and I love that whenever we sit down in a restaurant and open the menu and there is calamari, I know that’s what he’s going to order.
There is no good way to explain the way autism has affected our marriage except to say that it should have broken us. I mean, I don’t know how it hasn’t broken us already. It should have broken us, and we are somehow still standing. Perhaps the very thing that is trying to tear us apart has actually kept us together all this time.
I am a much different mother than I expected to be.
I am the kind of mother who cares less about grades on a report card and more about teaching my kids how to load the dishwasher. I worry less about trophies on the mantle and more about kindness on the bus.
Perhaps God/the universe/genetics/my in-laws decided to give me a child with special needs so I would learn how to wait. The best things in my life so far are the ones I have waited for; an unexpected sentence, a surprise smile, a quick one-armed hug in the hallway.
The thing is, I will probably never know why I gave birth to a baby with autism, any more than I know why six is the magic number of pillows at bedtime. Some things in life are simply meant to remain a mystery.
But I do know that matter how hard I think it is to have a child with special needs, it is a million times harder for him.
On the days my heart is squeezing, this child’s heart is shattering.
When I am gasping for air amidst autism’s rising tide, this child is nearly drowning.
Underneath it all–the tantrums about a missing pillow and the small orange vial with the little white pills and hundreds of questions about the schedule, I know he’s trying to tell me something else entirely.
Make room for me. I am here.
The thing is, once in a lifetime, you get the chance to meet a person who is unlike any other person you have ever met.
A person who is complicated, and honest, and tenacious, and pure.
This person, well, he changes who you thought you were.
And who you planned to become.
He is traveling a lonesome journey of one, yet changing the lives of many.
He is a boy named Jack. He is my child. He is my son.
March 13, 2017 @ 10:54 am
This is breathtakingly beautiful…and I feel confident your in-laws would agree 😉 Thank you for sharing this.
March 13, 2017 @ 11:09 am
Beautiful post. I wait for them every Monday and they always touch my soul. Thank you.
March 13, 2017 @ 11:42 am
Enjoyed reading this. Very cute photo of Jack.
March 13, 2017 @ 12:21 pm
Dear Carrie, I know one more thing your son is trying to tell you every day: “I love you.” You may interpret correctly his need, “Make room for me. I am here,” but there is another need which not only he but everyone else tries to express to some degree with greater or less success and this makes us all equal before the greatest need of what it means to be human. Your son has autism, but autism does not define him as a human being, any more than autism defines you as his mother. Ironically, it proves beyond all question the tenacity and power of your love and that extends into every element of your family. I am sure you have said this to yourself and your readers already and I am not bringing a new message, but I do re-iterate it for you today. You and your son and your family demonstrate not simply what it means to live with autism, but what it means to live triumphantly with love.
March 13, 2017 @ 12:31 pm
Best moment: The thing is, once in a lifetime, you get the chance to meet a person who is unlike any other person you have ever met.
March 13, 2017 @ 12:43 pm
Long ago, my sister who was dealing with tough cancer at the time, said, “This sucks, but if it has to land somewhere, I’m glad it’s me and not someone else I love.” No one seems to know why autism lands where it lands. But if it had to land in some parents’ lives, it seems as if you and Joe are extraordinarily determined and able to accompany Jack through this diagnosis and these long-short years.
March 13, 2017 @ 4:33 pm
I work in a school that also has autistic children. Plus I have a grandson who is autistic. And I must confess my heart goes out to them all. I have also learned what works and what doesn’t in communicating with them and my grandson. Sometimes all it takes is a back rub…wish that would work on some of the mean kids that I run across these days.
March 13, 2017 @ 6:14 pm
Hello,
Thank you, for sharing your story.
As a mother of an adult, 34 years old man with Autisme, I surely can relate to your post.
I too, used to spend many nights awake thinking, why me.
Now I think I know why.
He was given to me, because . . .
God never put a bigger load on our shoulders, than we can cope.
And my husband and I, did cope, we did survive, we did have another child, and another and another,
and all 4 of them suffer from Autism or Autisme like syndromes.
When I was 48 years old, even I was diagnosed with the Autisme spekter.
And looking back into history, my grandmother, had a brother, that was placed in an institution.
They thought he was plain stupid, as he couldn´t learn to talk – back in 1920.
My kids are all grown up now, still learning how to cope with the world, still having problems finding friends.
They have left home, and manage to live on their own. I´m still very much in the background, helping them.
I won´t have grand kids, though at some point I hoped, I would, but, I´ve actually told my kids about the risk they might take, having children, as Autisme lays in the Genes.
I love my kids, to the moon and back, and even beyond that.
My husband and I, celebrated our 36th marriage annerversary last December.
We fought together, and we believe the difficulties we had with our kids, made our marriage better and even stronger.
Lots of best wishes,
Kirsten
March 13, 2017 @ 8:11 pm
Carrie…you are an amazing mother, author, person/being….you make me strive to be a better person! Thank you so much for sharing you life with us! (((((Hugs to you, Jack, and all of the rest of your family)))))
March 16, 2017 @ 7:22 pm
You were given Jack because no one else in the world matched his needs like you as a mother. Just as you were given your other 4 in the same way. Keep on keeping on Momma, and keep a closet full of pillows on reserve :).
March 17, 2017 @ 2:49 pm
Carrie – amazing article. You are such an inspiration and Jack is definitely a special person. Thank you for sharing your journey, the good times and the trying times. Hugs to all.
March 18, 2017 @ 9:38 pm
As a father to 3 boys with Autism, I can relate to much of what you spoke of. I’ve never put focus on the why’s but instead focused on the how’s. I don’t care why my kids have Autism, I care about how I’m going to help them prepare for the world and the world for them.
In my experience, every single day with my kids is a new adventure. Sometimes that adventure is absolutely overwhelming, especially when it comes to the sensory side of things. Things are rarely ever the same thing twice and at the end of the day, I feel like I’ve learned more from my kids than they’ve learned from me.
Great post.. I’ve added you to my blogroll.. 🙂
March 19, 2017 @ 1:22 am
I’m an autistic adult and I’m disgusted by this whole article. Do you even understand your child? Being autistic makes the world very intense for us. We need to feel in control of some aspect of our sensory experiences throughout the day. That’s why so many of us like rigid routines and could be why he constantly asks you about what’s going to happen.
He could be searching to see if something is going to change suddenly. He could be seeking the reassurance that plans aren’t going to change. Maybe if you told him you’ll let him know immediately if anything changes, it will ease his mind.
Freaking out about a pillow missing? The symmetry of his environment is disturbed. A lot of autistic people like symmetry and predictability, and when that goes out the window so do our ability to cope. Some things cause a little frustration, others cause a complete meltdown.
Make more of an effort to understand your boy and you’ll realize his brain works perfectly as it should for him. Just because his “perfect” is not your “perfect” doesn’t make it a defect.
We don’t get a choice in being autistic, but you have a choice to be accepting and accommodating. Try it sometime and you won’t be so frustrated.
If this comment makes you angry, I’ll take it as a hint that I’ve hit a nerve and that I’m right. People don’t like the truth presented to them in such a stark manner, but the autistic community is tired of being ignored or talked over by people who tear our narrative away from us.
So, for once in your life, *listen* to your boy.
March 19, 2017 @ 1:22 pm
Thank you. Thank you. Thank you.
April 4, 2017 @ 3:01 pm
Thank you Carrie. My daughter does not have autism, she has Turner Syndrome which involves a host of issues. I cried when I read this post as it really hit home. Thank you for being so real.
April 4, 2017 @ 3:05 pm
I should specify…that was a response to “I know why my son has autism” post I saw on facebook.
April 26, 2019 @ 5:00 pm
I just found your articles on InspireMore. I really love everything I’ve read so far. It’s putting things into perspective today. Thank you.