I had a moment’s pause recently as I watched my husband Joe pass by me into our family room to hand our daughter her favorite pink blanket. Snuggling with all five kids on the couch, he looked like the same college guy I met when he was twenty and I just nineteen. Yet over the course of more than a decade we’ve built a life together based on love, family, and for the past six years, autism.
Like all parents, Joe and I don’t always see eye-to-eye when it comes to managing our kids. With five little ones under the age of seven, tension is unavoidable. Things can get really fun when you throw a child with autism into the mix.
Statistics show that divorce is on the rise for couples in general, with a higher rate of incidence when parents are raising a child on the spectrum. Trying to navigate a world full of acronyms like of IEP, OT, and PT while managing the daily behavior challenges of a kiddo who throws massive tantrums, stims through the room like a cyclone, and tries to start the family minivan if you don’t hide the keys can wear even the happiest couple down.
Joe and I have been deliberate in keeping our marriage successful in the midst of the demands of five small children, a busy dental practice, and life in general. Soon after our first son was born seven years ago we instituted the weekly date night and have stuck with it ever since. We’ve been very practical about making sure we stay connected, keep open communication, and for the most part respect the other person’s parenting. (This translates to the don’t-ever-contradict-me-in-front-of-the-kids rule.)
Although we’ve matured as a couple from being parents in general, raising our crew still doesn’t always bring out the best in us. There are moments of incredible stress when the baby has a diaper that’s exploding and another kiddo wants to eat his millionth candy bar – all while we’re on display at the annual family reunion. We still butt heads over deciding if Jack’s ready to start attending church, or if he should get a reprieve from eating all of his squash at dinner since, in Jack’s Arnold Schwarzenegger-type intonation, “Squash is bad for me and will make me sick.” Being a parent is never easy, never what we expected, and some days not even what we wanted. Autism simply adds a whole new dimension.
And it’s so easy to vilify our husbands, isn’t it? In most families, the man gets to trot off to work and leave the domestic mess in the rearview mirror for the day. I remember waking up to Jack’s deep nasal whine when we lived in Buffalo and thinking, “I simply cannot get through another day of this.” We nicknamed him Tuggy because his constant whimpering sounded just like the horn of a tugboat driving deep into my soul. There’s no way Joe’s schedule of filling cavities could compare with keeping Jack – and the other small children we had – happy. Never mind that the guy would walk into the equivalent of a bees hive when he got home – with Queen Bee herself in the foulest mood.
But at the end of even the worst day, Joe is my lifelong partner in the long, sometimes lonely road of parenting a spectrum child. In-laws try to be supportive, and friends do their best to understand, but my husband has been with me since the moment this 9 pound, 3 ounce boy made his first appearance. Together we’ve celebrated the highest peaks and the lowest valleys during the bumpy ride of Jack’s early childhood, as we waited with baited breath for a sound to come from this wordless child. Together we felt the icy fingers of fear grip our hearts and heard the persistent voice in our heads chanting, “something is wrong with him, something is wrong with him, something is wrong.” Together we accepted the news of his diagnosis and looked toward our new future with a mix of fear and optimism.
Jack was a fussy baby and sick as an infant. He constantly battled respiratory infections and reflux, and was a terrible sleeper. Night after night Joe rocked him through painful ear infections downstairs on the couch while I rested upstairs. After each feeding he would swaddle him like a burrito and hold him tightly on his lap trying to calm his painful indigestion.
Things have certainly gotten easier in many ways since those early days. He’s communicating very well now, keeps a regular sleeping schedule, and has the services he needs to keep him progressing in the right direction. The focus of our parenting has shifted from keeping him comfortable and happy to balancing how to push him further while still respecting the limitations of his autism.
Last year Joe walked Jack down to the bus each morning, and on the first day of school he started the routine of waving at him through the window and calling, “Bye Jack! I love you!” as the bus pulled away. Every single day, from the first muggy morning in August through a bright crisp fall, and into a dreary spring Joe repeated his farewell with the hope that someday Jack would look out the window and wave back. It wasn’t until the end of May – nearly the end of the year itself – when Joe walked back into the house misty-eyed to tell me Jack had finally peered through the grimy window and mouthed, “Good-bye Daddy. Love you!”
Today, Joe’s voice of logic always steps in just when I’m ready to give in and give up, throwing in the towel on yet another battle to put gloves on or finish the math worksheet.
Over the summer we visited a zoo in Maine with my brother and his family. We created a social story to prepare Jack for this event, chronicling all the animals we might see, the dinner we would have. Jack fooled all of us by being agreeable to the trip, boldly declaring, “I love zoos! Zoos are fun!” His attitude changed radically when the minivan rolled into the parking lot and he started to scream and beat his hands on his head to some mysterious internal rhythm. As we unloaded and shuttled everyone – four adults, five children and a baby – towards to entrance, Jack’s distress increased visibly. Again, it was Joe who calmly sat with Jack for nearly half an hour, methodically explaining that the animals stay in their cages, how safe the zoo is, and suggesting they hold hands as they walked through the exhibits. By the end of our trip, Jack was galloping full-steam ahead to be the first one at the tiger cage.
Now that is a father’s dedication.
We braved our small town’s fireworks display this past Fourth of July, and I will never forget watching the colorful light reflecting off Jack and Joe’s faces as Joe counted down the delay between sound and display, so Jack could better predict when the loud noise would happen. At that precise moment, seeing Joe murmuring softly in Jack’s ear, I knew there was no better father for this boy.
Carrie Cariello lives in New Hampshire with her husband and five children.
