11 years old

 My son Alex is 11 years old. He has no friends. 

He has never had any friends. 

Well, he has his older brother, and his older brother’s friends have often been kind and sometimes even inclusive when they were all young enough to still have some reasonably overlapping interests and abilities. But as the developmental age gaps widened mercilessly. And we had to leave our home in NYC, which meant losing proximity to our tribe- who had embraced and included Alex from the time of his infancy. And so, Alex is left behind. Alex is left out. Alex is left alone. 

With me. 

His only friend. 

And in a lot of ways, I don’t count. Because I’m a 45 year old woman. And because I’m his mother. And I’m simply not a satisfactory sole playmate for any child. Ask any 11 year old, and they will tell you that this is true. 

My son Alex is 11 years old. He has down syndrome. He has no friends. 

I do not believe that he has no friends simply because he has down syndrome. 

But it certainly doesn’t help. 

My son Alex is 11 years old. 

And he can’t play sports with his peers. 

He’s supposed to have low muscle tone as one of the many features of his developmental disability. But since he was a toddler, he displayed a physicality and athleticism that often left his therapy team speechless. You wouldn’t expect to see his skills and instincts in any child so young- especially a “special” child. 

My son is a  natural-born athlete, but he cannot just join a soccer team or a baseball team. Not with his  Neurotypical peers. And not with his special peers. He has a mystery autoimmune neuroinflammatory condition which essentially means that when his immune system is excited on any level, his brain catches on fire. This manifests in him as loss of already impaired speech, rages, aggression, confusion, and frustration… well, on the good days this is what it looks like. 

My son Alex is 11 years old. 

And he can’t go in to a swimming pool. 

He loves swimming pools so much. We live in southern California right now. And when we first moved here in 2016, we went swimming every single day. I taught him to swim and it was all he could talk about. I could motivate him to do anything if I promised we’d go to the pool later. 

But he can’t go swimming anymore. 

There are swimming pools in nearly every back yard. There are community pools every three blocks in the neighborhoods surrounding our home. Our closest community pool is about 75 yards from our backyard. We pass it several times per day in our car and on our walks. And several times per day, my son asks me, “swimming pool! I go?”  And several times per day, I respond, “I would LOVE to take you to the swimming pool. But we cannot because the chlorine will make you sicky.” 

My son is 11 years old

And he can’t go to school. 

And the reasons for this could fill an entirely different book of a different nature that looks at our educational system through the eyes of special families. But mostly it’s because his immune system is broken, his body attacks his brain in an attempt to attack what it perceives as foreign invaders.