If you are a parent, or are considering becoming one, you are most likely familiar with the dreaded developmental “milestones” list. You know, the one where a group of scientists (who clearly did not have children of their own), raised a group of robo-super-children in a laboratory, and charted all of the development that occurred as those robo-kids grew older. Then, they published that list and gave it to pediatricians and other developmental specialists.
So, my six-month-old can’t do a backflip while reciting the digits of Pi to a thousand places?
Guess we’d better give up and go live somewhere deserted, so we don’t bother anyone.
Oh, really? Your two-year-old hasn’t painted the ceiling of a famous chapel yet?
That’s ok, I’m sure your child will be great at living in a museum for the hopelessly outdated.
You know, that list.
Enter special needs. Almost by definition, children with special needs are those who cannot meet these milestones. This can seem overwhelming and crushing to parents, because this list is a constant reminder of the challenges your child faces, and makes it seem as if your child is a failure, and by extension you are as well.
But I have great, liberating news: milestones mean NOTHING! That’s right folks, you heard it here first. Milestones mean nothing. Now, that’s not to imply that tracking the development of your child isn’t important, and that you shouldn’t work with your child to give them the richest, fullest life possible, but rather, that a list of activities created by scientists can never define your child, nor the life they lead.
When Tim, my eldest was diagnosed with ACC (see “When They Tell You” for a description), my wife and I knew that his trajectory was going to be quite different than that of his peers. When he was born, I didn’t care if he would become rich or famous or athletic—instead, my goal was that one day, he would be able to look me in the eye and say, “I love you.” I didn’t care if that took until he was thirty or fifty or ninety, I just wanted to help him develop enough for that. It became my goal.
Now, if you ever read a milestone list, saying, “I love you,” isn’t anywhere on it, and three-word phrases are something that we expect two-year-old children to manage. Since this wasn’t a milestone, but it was my goal, my wife coined a phrase that would allow us to celebrate the accomplishment, regardless of timeframe. She called these moments inch-stones.
I cannot tell you how liberating inch-stones have become for my family. When we were told that Timothy might never communicate, we were able to celebrate unabashedly when, at six months old Timothy laughed for the first time. Inch-stone accomplished.
Timothy didn’t begin eating solid food (not baby food) until he was fourteen months old. We celebrated like he’d just won the Superbowl! He could eat food, and (joy of joys) he could bring food to his own mouth!
Most children by about six months, can cross over their midline with their non-dominant hand to reach for objects. But, when Timothy was thirteen months old, for the first time, he used his non-dominant hand to hold an object. We were in awe. The little boy who might not be able to sit or help himself (so we were warned), could use both hands to navigate his environment!
These inch-stones were tiny steps down a long path, but with each one, Tim inched closer to a life where he could one day be independent and make choices about his future. Tim was doing things on his own time frame, but he was doing them!
When we let go of the milestones that were being imposed by others, and instead focused on Tim, and making the progress he could achieve, we found that there was great joy in his journey rather than the pressure to get him doing things at a certain time.
Today, if COVID-19 were not keeping us all at home, Tim would be in his Kindergarten class, playing with his friends and doing math, and reading and writing. Tae Kwon Do is Tim’s sport of choice, and he will be testing for his fourth belt (yellow, if you are interested) at the end of the month (via online classes [COVID-19 social distancing being paramount]).
It took Tim several months longer than his peers to sit up, eat solid food, and to walk, but he did them all, and does them still. By giving ourselves permission to dismiss the “milestone mentality”, Heather and I gave ourselves the gift of enjoying our son’s journey and being proud of every inch.
If you are a parent, whether your child has special needs or not, I strongly suggest that you follow the path set out by my wife. Give yourself permission to celebrate the small things, and enjoy every moment—in the end, lots of tiny steps gets to the same place as a few large ones. Let go of the stress imposed by some impossible standard, and cherish your child. They will only be young once, and you might as well enjoy it!
As the proud father of three children, as well as an MFA graduate and published author, John spends most of his time trying to balance the demands of being a writer and a parent all at once. Most of the time, it’s an uphill battle. As the parent of a child with special needs, John tries to use his talent for writing to bring inspiration and hope to his readers.
For more information about John Will you can visit his website at the Writing Dad, Here and Facebook page Here. For more information on Agenesis of the Corpus Callosum (ACC), please visit National Organization for Rare Disorders.
Cover Photo: Solène Chevaleyre