Please Mind the Gap

It’s cute and picture worthy the first time your 1-year-old dumps the cereal box. Right?  

Matty, age one, becoming a professional cereal box dumper.

When the cereal box is still getting dumped a dozen years later, let me tell you, it’s no longer cute or funny.  And I’ve stopped taking pictures.

As a parent to a child with autism and intellectual disabilities, in many ways I am still living in those toddler years. A constant state of motion and emotion.  My 14-year-old is not capable of using reason when making decisions, and has no impulse control. If you were to look in my purse right now, you’d find a small container of cereal for moments when Matty needs a snack to keep him busy during church or the doctor’s waiting room. The cereal is right next to the extra pair of underwear and shorts in my bag for a “just in case” moment.  

The playlist on Matty’s iPad today, at age 14, is very similar to what 3-year-old Matty listened to. Twinkle Twinkle Little Star. If You’re Happy and You Know It.

Last year when our family went on vacation to a fun resort, Matty and I went to the Elmo breakfast and the Sesame Street parade. He happily hung out with the Sesame Street characters among all the toddlers.
(Can you spot him sitting between Elmo and Abby Cadabby?)

The games we play are the same games a toddler enjoys.  “Mommy, tell Daddy I’m not here!” Matty tells me as he so obviously hides under a blanket on the sofa.  He is waiting for Daddy to say, “Where is Matty? I can’t find him anywhere.”  Next, Daddy lightly sits on the moving, giggling blanket and discovers him as he pulls back the blanket, “Oh THERE he is!” 

“Again!” Matty pleads as we play the Where Is Matthew Game till we run out of energy. 

When I observe what typical kids his age are able to do, there are moments my heart hurts so much, it feels like physical pain. When Matty was in elementary school, watching his classmates effortlessly use a pencil to write their names or even speak clearly could bring me to tears. I so desperately wanted these things for Matty, too.

I witnessed as the gap became wider between Matty and his peers.  At back to school night in third grade, parents took out their child's journals to read some of what they had written so far. The moms and dads on either side of us began reading and smiling and laughing. Matthew's notebook had blank pages. My tears were held back till we made it to the car. Matty doesn't write with a pencil.  He writes on a keyboard with prompting. The gap grew wider still.  

Today, he is the same age as some of his incredible camp volunteers. Kids just a year or two older than him are taking driver’s ed., babysitting for him, studying for the SAT’s and going to school dances. They are preparing for a future of independence. The gap is widening.  Again.  

Matty has learned a lot since he first dumped the Cheerios.  He is a great problem solver (“Daddy, are you tired? Just stay home from work, like Papa does, and take a nap.”) He even runs his own neighborhood business taking out neighbors’ recycling bins each week. He’s almost as tall as me and he knows how to negotiate like only a teenager can.  

Parenting a 14-year-old who has retained some of his toddler tendencies does have some benefits:

He still fits on my lap

• Being Matthew’s mom keeps me grounded. He teaches me what is truly important in life.
• I have the honor of living with someone who will always view the world through the eyes of a child – with innocence and honesty.
• He calls me Mommy instead of Mom (which I love).
• He asks to sit on my lap. (Luckily, he is small for 14)
• The Tooth Fairy and Santa Claus will always come to our house. 
• I can expect that a box of cereal will be dumped only three times per month on average (which is a decrease in frequency from toddler days). That’s a WIN!

Amy McCoy is the author of Little Big Sister, an elementary school novel told from the sibling's perspective of what life is like to grow up with an older brother who has autism.  

  www.littlebigsisterbook.com