When we brought our first son into this world, we knew that there was a high probability that he would have a genetic disorder called Fragile X which causes profound developmental delays and intellectual disability. In order to cope with the anxiety around the prospect (and eventually the reality) of having a child with special needs, my wife and I worked hard to remember that everyone has strengths and weaknesses.
Now, our son is 4 years old, and we are learning more about his strengths and challenges each day. While I may be further developed than he is, and there is a chance that he will never have the full cognition of a typical adult, he has already bested me in some areas of self-actualization from which we can all learn.
In honor of his 4th birthday, here are four things that my son with Fragile X Syndrome does better than me:
1. He lives in the moment. If you ever drive down the major street in our neighborhood, there is a corner that intersects with our street, and you will probably see me and my son sitting on the sidewalk, watching cars. And while you may only catch a split-second glimpse of us as you zoom past, rest assured that we have been there for a very long time and probably have a lot longer to go. My son could sit there for hours, just watching the cars and observing the traffic patterns.
While he does have an attention deficit (see number 2) he seems to find some inner peace in watching the cars. We usually only leave because I get restless and feel anxious about wasting time watching cars. I have more places to be and things to do than he does, but he just wants to stay in that moment, with me, forever.
I hope one day I can truly find peace in staying to watch the cars for a long time, as he does, recognizing that there is no place in the world more important to me than with my son.
2. He gets over things easily. Here his attention deficit is a benefit. He doesn’t hold grudges. He moves on very easily from uncomfortable situations. Whether it is something that has caused him physical pain or emotional distress, he is easy to redirect toward something more enjoyable. I can’t count how many times he has bumped his head, or tripped, or gotten a finger stuck somewhere and he will cry until we start to sing a Barney song. All of a sudden he is the happiest kid—dancing and singing as if nothing ever happened.
I, on the other hand, replay stressful situations in my head over and over again, wondering if I could have done them differently. I have a tendency to dwell in the past. My son never does that—he doesn’t have the attention to dwell and seems to not have the interest either.
3. He celebrates the small things. A common trait in children with Fragile X is that they seek out admiration and praise. He aims to please and my wife and I are never in short supply of praise and affirmation. But he has evolved from being a boy who seeks praise to being one who gives himself praise as well.
Every time he goes to the bathroom on his own, or even if he brushes his teeth, he can’t wait to tell us how proud he is of himself! His self-satisfaction brims over and he can hardly contain his excitement for his accomplishments.
The unabashed pride he feels in himself, no matter how common or routine the behavior, is infectious and makes us all feel happier to be around him. It is the same concept behind the daily blessings in Jewish life. Every moment, no matter how mundane it may seem, can be made sanctified with appreciation. I wish I were better at that.
4. He never hesitates to show affection. This is another common trait in children with Fragile X that, frankly, makes up for all of the hard aspects of raising a child with special needs. There have been so many times that I have been woken up with a kiss and a hug and a jubilant, “Hi Abba!” It makes being woken up at 2 in the morning a little bit easier. Whenever he sees his baby brother, he can’t control his urge to hug him, which the baby only now is growing to appreciate.
As adults we tend to reserve love and affection for more appropriate moments, maybe a couple of times a day making sure to remind those we care about how we feel. But our son feels love all the time, for a lot of people, and he doesn’t have the inhibitors that regulate how he expresses that love. So while it may be inappropriate for me to hug and kiss people every few minutes, he doesn’t seem to mind and I have learned to admire his passion for his friends and family.
I recognize that these are four ways that most children are better than adults, but often society forces us to grow out of these juvenile, innocent behaviors. Maybe that’s another blessing of our son having developmental delays—it will take him longer to grow out of these extraordinarily sweet and adoring qualities.
We constantly work with him, with the help of teachers and therapists, at growing, advancing, and strengthening his skills. In many ways we try to help him “keep up” and be more typical. My prayer, though, is that he never loses these strengths that make him who he is. I pray that my wife and I will be blessed to celebrate all of these qualities at each of his birthdays.