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 Joe’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 the 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 no 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.
What Color Is Monday?” is available on Amazon.com and BarnesandNoble.com. You can also follow Carrie on her weekly blog: www.CarrieCariello.com and Facebook.com/WhatColorIsMonday.
The viewpoints expressed in “The Lighter Side of the Spectrum” do not reflect the opinion of the Autism Spectrum News Editorial Board or the Publisher, Mental Health News Education, Inc. “The Lighter Side of the Spectrum” is intended as a means for self-advocates, family members and others impacted by Autism Spectrum Disorder to share their stories.