Experimenting with my post from March

 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 the developmental age gap widened mercilessly each year.  Then we had to move in with my parents, across the country,  in California because Alex was just too sick for me to care for him properly while holding down a job.  We lost our New York City tribe of supportive families; those loving beings and their children 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. You could 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. It means that while his peers were doing all of the same things (the sorts of things I did with my normal mom life with Jackson before Alex was born), we are unable to join. Because a responsible parent of a newborn with a disability is expected to accept all of the early intervention therapy that is made available to her child. So while other parents are taking their two-year-olds to Music Together classes or to mommy gatherings on picnic blankets in the park, the parent of a child with Down Syndrome spends most of her hours at  home. The hours are filled with a relentless schedule of breastfeeding, managing the older sibling’s needs, diaper changes, food preparation and cleanup- all of this is very familiar to any stay at home parent who has two children under three years old. 

But the special needs family also has the added piece: a parade of therapists marching through the apartment, scheduled from the early morning hours right up until dinner time. 

The special educator came at 8am. At that point, I had been awake for about 3 hours because Alex rarely slept past 5am and Jackson was always up by 6. When the knock on our apartment door would come, I had nursed both boys and managed a cup of coffee that was quite cold by the time I choked down the nasty last half of a cup, which would have congealing cream on the surface. But I would swallow it anyway,  out of some sort of defiant determination to do SOMETHING for me before another day escaped. 

So at 8am, the knock would come, and the educator would walk in just as my children’s father would escape our tiny, cluttered, one-bedroom, upper west side prison. He was well fed and showered, freshly shaved and in a rush as he bolted towards the elevator. No time to kiss me goodbye, just a fury of self important busting about… the movement of a man who had so much to do out there in the real world, and so little time to do it.  I would watch him leave with such anxiety in my stomach, so painfully aware of how long it would be before he came home- he rarely returned before the children were down for the night. It wasn’t even that I would long for his return- he generally came home ornery, stressed out, and not exactly interested in connecting with his wife on any level.  It was more that I dreaded the being all on my own with the children in the meantime. No adult conversation. No adult support. No adult relief. Just me and these two innocent beings who needed so damn much all the time. 

He would often catch the elevator down that our special educator had just taken up, and she would enter quickly,  find Alex waiting, and get right to work. I would join them, sitting on the floor in my parenting uniform which was carefully selected to serve as both suitable for pajama wear and playground outings - because there certainly wasn’t time for me to shower and dress properly each day. Jackson was planted in the bedroom with the kindle watching David Attenborough nature shows. I went from wanting to raise screen-free children to locking Jackson in a bedroom 6 hours per day to stare at a 6 inch tablet while I tended to Alex’s needs- and I told myself it wasn't so bad since it was "educational programing” on the screen, and he was learning about nature. 

The special educator was lovely and so caring. But I really had no idea why she was there. The first “service” that my special needs son qualified for was special education. He was nine weeks old at the time and it was all he could do to stay awake long enough to keep my nipple in his mouth for a proper feed. But the state of New York said he needed it, and it was free, and my husband insisted it was important. So, it was on the schedule. 

When she left, I’d scramble to potty train Jackson, diaper change, breastfeed, and prepare snacks. On a really good day, I would sit on the toilet because generally I found myself “holding it” for hours on end, not able to slow down long enough to just go. A luxurious bathroom break usually meant that Alex was on my lap (to protect him from his toddler brother) and Jackson would be sitting at my feet prattling on endlessly, so desperate for my attention. I cannot, this many years later, recall if I was ever really listening to him. I do recall wondering if I would ever again be alone on the toilet.

I would be dumping dishes in to an already growing mound of sink mess just as the OT arrived. She would be soon followed by the PT. And later, around dinner time, the speech therapist. And between each visit, the household tasks and the naps would be squeezed in as well as possible.  And even now, ten years later, I can feel the memory of the perpetual anxiety. The tightness in my chest, the throbbing in my head, and the shallowness of my breath that characterized what it felt like to move through the schedule of those days. My nervous system was preparing for an emergency all day every day. 

Fortunately, I loved his therapists - especially his PTs and OTs. Alex was a very physical child and doing these therapies with him was such a joy because those women saw so much potential in him. They were always amazed at his innate skills, even as an infant and they assured me he would be very strong and likely athletic.  The idea of this tiny peanut being anything was hard for me to get my head around. So their predictions, their confidence, their vision for him was a lifeline that I clung to in those earliest months. 

And it turned out that they were right. He grew to be very strong and athletic. He loves all forms of ball play, movement, running and sport. 

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 that natural physicality and athleticism that often left his therapy team speechless, seemed to defeat the morbid predictions of “hypotonia and general weakness” that I found in all of the medical literature I was exploring upon the time of his diagnosis.

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 even with his special peers- unless I am right next to him, attached at the hip, at all times. He has a mystery autoimmune neuro-inflammatory 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.