I’m giving up. I can’t believe I’m saying it, but it’s true. And it’s time. I’ve put in a lot of effort, a lot of sweat and tears (though thank God, no blood!), and we’re done. Enough! Finished.
My 5-year-old son with Fragile X Syndrome has been enrolled in karate—a regular karate class, with no supports—since September. And now, in March, we’re finally giving up. I can’t force him to put on his karate shirt anymore. I can’t keep pushing him back to sit with his class. And I can’t handle his public meltdowns in the middle of our JCC. Every. Single. Week.
Let me be clear: This is not a critique of the JCC or the wonderful teacher. In fact, the teacher is incredible and he has coached everyone in our family and is one of my husband’s friends. He has been so patient and forgiving with my son, focusing extra attention on him, allowing him to skip the lines that all the kids stand in to take turns kicking and punching, and giving him extra support whenever he could. But it wasn’t enough, and through no fault of anyone, we need to take a step away—far away—from the karate studio.
Every week was painful. I would question our decision to enroll our child in a class with 15 typical peers without providing him the support of a one-on-one aide to guide his every move. I would sit on the side of the studio watching as the teacher explained concepts to the children, and they would respond to him appropriately, and my son would stare into space. Or worse, he’d react to the noise of all of the other kids responding at once. A meltdown would ensue. I’d rush to leave, carrying bags, his shoes and jacket, and a flailing, heavy, and screaming 5-year-old.
Other parents would stare at me as I tried to wrangle him. I could tell by their quiet smiles that they were grateful this wasn’t their child. I felt sad, exhausted, and embarrassed. While most people know us and know our situation, I wanted to scream along with my son: He has Fragile X Syndrome and it’s not his fault!
We wanted our son to have the same opportunities as his neurotypical older brother. We know he loves to mimic his brother and that he learns best when he can watch his peers. We appreciate how a class like karate could teach him more about body control, self-awareness, and discipline. We had high hopes for our little ninja.
What we’ve come to understand, however, is that perhaps our son had different goals. He wanted to be like his brother, and he took the class and had that opportunity. The year isn’t finished, but maybe he is, and maybe I need to accept that that’s OK.
I have realized through this experience that not every situation will work for my child—or for any child for that matter. What I’ve learned about Fragile X Syndrome is that when my son is over-stimulated, it’s as if one person is screaming right at him, another person is touching and hitting him, and another is making strange noises. So much is going on inside his head and he cannot stop the noise or figure out how to respond to the stimuli. So he melts. It’s no wonder he can’t handle situations like a noisy and busy karate class. I can’t blame him.
This is not the first time we have tried something with our son and then had to give it up. Hockey games (watching in the noisy arena) and amusement parks (too many things going on at once, leading to a sensory overload) have failed us in the past. The saddest moments are the ones that are supposed to be special just for him, like the night we went to his school for a pizza dinner and music class and he refused to walk through the school doors. The most challenging are the times his older brother is supposed to shine, but our son can’t handle the stimulation of a crowded room for a school assembly. While most children love to perform and have their siblings in the audience, our older son knows his brother would be so upset by the change in routine and the crowds of people.
This is our reality—at least for now—and we have learned to accept it, even though, as is clear from the karate class, we do not always realize it right away. I am sure that there will be many more moments over his lifetime that my son will not be able to do what we had hoped he could. But my prayer is that there will be even more times that he will surprise us.
Our job as parents is to provide opportunities for our children to learn, to grow, to develop a sense of self, and to take care of themselves. I thought I was doing that by signing my son up for karate. It turns out that when I made the call to take him out of the class, that’s when I was actually doing all of those things. Allowing our son to state a preference gave all of us the opportunity to grow. Instead of focusing on our own goals and expectations, we are learning to read his.