This week I asked several moms to help me write. Why? To help all readers understand the true spectrum of Autism Spectrum Disorders – not only between children, but between children in the same family. Every day this week you will get to meet a new child (or children)…they are very different from Tucker, and yet, so much the same.
Keep reading – on Saturday I will post a ‘wrap-up’ with some final thoughts about the spectrum itself.
Today? Isaac and Noah
What’s it like to be the mom to twin boys who have autism?
It’s a difficult question to answer because I don’t know what it’s like NOT to be the mom to twin boys who have autism. When they were born, I became a mother. It’s all I’ve known. As they grow and life unfolds, they teach me what I need to know.
My sons, Isaac and Noah, were diagnosed with autism a month before their second birthday. A year and a half later, their baby brother Henry was born. (Surprise!) It was a crazy, busy time when I had three children ages three and younger. The twins did not function as “typical” three-year-old toddlers. I consumed a lot of chocolate during those long, stress-filled days.
My hands were full, and my heart was full. I loved these high-needs kids, even though they gave me a run for my money. But I had hope one day it would be easier.
When Noah was an infant he didn’t want to be held for too long. He was content lying on a pillow or in his bouncy seat. When he wanted to be snuggled or fed, he preferred me. Isaac, on the other hand, wanted to move constantly. He would have been happy swinging from the chandelier.
My babies were day and night – complete opposites.
When I took them out in public, Noah was terrified of strangers. (People are drawn to double strollers with babies in them.) He was scared of new sights, sounds, and voices. When a stranger talked to him, he’d cry inconsolably, sometimes for one hour or more. Isaac loved to go anywhere. It was difficult to go somewhere or stay home – one of the twins was usually unhappy with either choice. For a long time they both cried when they rode in the car. There were times when I thought I’d lose my mind.
Noah was a late walker while Isaac could walk backwards.
When I called Isaac’s name repeatedly, he would not look at me or respond, but if he were in another room and heard a Baby Einstein video playing, he sprinted towards the TV. Noah responded to his name once in a while but never consistently.
Noah was a decent sleeper. Isaac didn’t sleep through the night regularly until he was almost four years old. Sleep deprivation is torture. Really.
Isaac had no language, really. Neither of them pointed or gestured. Noah referred to everything as “Daddy” for a long time, but slowly he gained more words. Isaac remained functionally non-verbal.
I quit my full-time job when they were born and soon realized it would be difficult to ever work full-time again. I was desperately needed at home because they required the consistency and comfort that I could provide.
Eleven years have passed since their autism spectrum diagnosis. My guys are now teenagers – they’re 13 years old.
They’ve made amazing progress with the help of teachers, a holistic pediatrician, therapists, and good old fashioned love and acceptance. I’m proud of who they’ve become. Along the way I’ve learned about unconditional love and patience. They’ve taught me to seek out other parents of differently-abled kids because having that social connection is invaluable. They have made me more tolerant and less judgmental because I know everyone has a story. They have taught me about struggle and persistence because I have seen them overcome obstacles.
Isaac goes to a special school for students with disabilities. Noah attends a regular junior high school, where he’s on the honor roll. He was discharged from special education a few years ago, but he still has autism.
Isaac loves to play car wash videos on YouTube. Noah loves to play his trombone.
Isaac has limited speech and uses a speech generating device or his iPad to communicate his wants and needs. (We are working on expanding his typing abilities. I know he has a lot to say.) In the last few years, he has gained many words that are intelligible to listeners. Noah talks all the time and was discharged from speech therapy while in elementary school.
Isaac won medals at Special Olympics in speed skating, roller skating, softball throw, and track. Noah and a classmate won the city-wide trivia contest.
Isaac struggles to spell, although it’s easy for him to recognize whole words. Noah has earned a ribbon in the local spelling bee.
Isaac loves to sing along with country music on the radio. Noah sings at school events and honor choirs – even solos.
Isaac likes to do laundry, take out the garbage, and load the dishwasher. I have to remind Noah to pick up his robe that he tosses on the floor every morning.
Isaac is my shadow when we’re at home. Unless he’s playing a video game, he’s near someone constantly. He enjoys teasing Henry. Noah enjoys quiet time with a good book or a video game. That’s how he recharges.
They enjoy spending time every summer with their grandparents and cousins at an amusement park.
They can spend hours playing the Wii, and they’re both skilled players.
They laugh when they’re driving go-karts or diving into a swimming pool.
In many ways they are like every other kid – in many ways they are different. It’s true of my parenting experience, too. It’s usual and unusual. It is what it is.
What’s it like to be the mom to twin boys who have autism? At times it feels like being in an alternate universe. It feels like being a super hero. It feels wonderful and exhausting and meaningful. It’s like going on an unexpected trip without a map. It’s full of tears and joy. I don’t know what the future holds for my boys, but I take it one day at a time. I don’t wish it away. The experience is part of my life purpose. It’s an honor and an adventure – and sometimes bittersweet, like chocolate.
Tyann Sheldon Rouw is an autism advocate and blogs regularly at http://tyannsheldonrouw.weebly.com. She is a contributor to the Chicken Soup for the Soul series, and her work has been featured in Brain, Child Magazine, The Mighty, and several newspapers. Follow her at @TyannRouw.