When my sons were in 2nd grade, they attended a small parochial school which had two classrooms per grade. One day, Michael brought home a paper in his backpack saying he had been chosen to represent his class in a school-wide student council celebration. He had not actively run for student council; in fact he didn’t even fully understand the concept. His teacher had selected him for the honor.
I was pleased he had been chosen. The day of the event came. My husband was out of town, so I planned to take the 3 kids myself. Gracie was having a tough week, throwing lots of tantrums. The event wasn’t scheduled to begin until mid-evening, which meant we wouldn’t get home until well past the kids’ normal bedtime. Like Gracie, Michael also needed a regular schedule with ample sleep, or else he too could get unpleasantly out of sorts.
These were the days before either Gracie or Michael had any diagnoses. Even then, I sensed it was harder for my family to do things and go places than it seemed to be for other families, although I had no clue as to why.
I had a strong feeling that attending this event would create a more difficult rest of the week for Michael, Gracie, and me. I was already tired and it was only mid-week. Michael seemed to be indifferent about it. About an hour before we were supposed to leave, I decided we weren’t going.
The next day, the principal of the school called me.
“Where were you last night?” she asked, “All the other school families were there. Michael was the only class representative missing last night.”
Feeling embarrassed and chagrined, I feebly stammered an explanation about how important it was for my children to get their sleep. The principal was incredulous. In all her years at the school, no family had ever skipped that event because the children would lose some sleep.
That was the first time I remember making a decision to forego expectations that didn’t match what I sensed was best for my family. It certainly wasn’t the last. After the principal’s call, as a proud mother who valued family, school and community, I felt I had somehow shirked my duty. Yet, deep down, I knew the cost of attending that event would have been too high for us.
Parents of special needs children must constantly make decisions about how to best fit the lovely round peg of their child into the quite different square holes of our societal norms.
Occasionally, when the hole is large and flexible enough, the peg fits nicely and there is benefit for everyone. Much of the time, the peg fits with some pushing and prodding, which leaves slight but visible wear-n-tear along the edges. Some of the time, in order to fit, that peg must be hammered into those holes so forcefully it damages the top plus splinters off the sides.
No loving parent wants their beautiful little round peg to be inadvertently damaged. Yet the square holes are everywhere, even in the seemingly most trivial details of daily life. Pressure to use them in the form of expectations or outright advice is pervasive.
Society is used to its square holes. Through no fault of their own, most people never have reason to question the square holes. They simply don’t know any differently. They cannot fathom how a certain square hole might cause difficulty for a round peg because they have never before encountered such a unique, lovely round peg. Even if it’s explained to them, they still might be unable to comprehend.
So what is a parent to do when they have an uneasy, subtle, nagging feeling deep down that a square hole unquestioned by everyone else might actually have adverse effects for their little round peg? Or, even more unsettling, when that uneasy feeling is caused by a professional’s recommendation, a professional whom they actually sought out and paid money to be advised to put their peg in that square hole? What is a parent to do when that uneasy feeling tells them the potential negative effects of putting that peg into that hole far outweigh the benefits of being in the hole?
It’s not just about the one little round peg either. Any adverse effects on the peg will inevitably ripple out in small or large waves to negative effects for all the other pegs in the family.
In situations like this, it’s easy for parents to override their subtle intuition for all kinds of reasons, most of them related to wanting them and their child to be able to better fit into the square holes and uncertainty about the validity of their feelings. In short, parents, who like their children are learning as they go, often don’t trust themselves enough to make the tough choices to go against others’ advice or expectations.
If you are a parent of a special needs child, you know your beautiful, lovely, unique round peg better than anyone else. YOU are the true expert on that little round peg, no one else.
If you get a strong feeling, don’t ignore it despite what other people or your logic are telling you. Follow your heart; follow your gut; follow your instinct; follow your intuition.
Do what it takes to avoid placing your precious round peg in a square hole that was never designed for him or her or is clearly inappropriate.
It takes courage, strength, and faith in yourself to resist common convention and societal norms in order to do what you know deep down is right for your child and your family.
You can do it! You are your child’s biggest ally and advocate. Give yourself a pat on the back for that and know that you are doing the best you possibly can.