1 in 42. If you have a child, and that child is a boy, you had a 1 in 42 chance of being Jeffrey and Dana Berkowitz. Perhaps you are Jeffrey and Dana Berkowitz if you have a son with Autism Spectrum Disorder. One out of every 42 boys born in the United States today will have Autism Spectrum Disorder, and 1 in 68 children overall according to the National Autism Association. It is a hard statistic to grasp because if 1 in 42 of anything, whether that be disease, mental illness, poverty, starvation, was happening in the United States, there would be an all-out fight, advocacy, and research to find a cure, or tackle the problem. Yet, sadly, in some ways, what has been said about the ASD statistic is “1 in 42 is okay.” It is not……..
On December 7, 2011 when our child, Ethan Benjamin Berkowitz came into this world after a 9-year pregnancy struggle, at 1:41 pm, we never thought our miracle baby would be part of the “1 in 42.” Autism is something that happens to other families, you never imagine it is going to be your child. Why would you want to imagine it when you know this disability is the fastest growing developmental disorder, and you are aware there are no medicines, no cure, very few answers, and it is the most underfunded developmental disorder?
It became evident as early as 6-months-old that Ethan was showing signs of autism; lack of eye contact on the changing table, followed by missed milestones of pointing at a year, waving goodbye at 15 months, and not being engaged, all pointed towards the possibility that Ethan might have autism.
At 22 months, our son had no verbal or non-verbal language, engaged in extreme repetitive behaviors that could last for hours and seemed to be in a trance at times, which we later found out is called “stimming.” (According to Wikipedia, stimming is defined as “Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders”). Shortly thereafter he was diagnosed with moderate to severe autism, among other diagnoses, by Dr. Hugh Bases, a Development and Behavioral pediatrician, and we officially became part of the “1 in 42” statistic.
When you find out your child has autism, the extensive responsibilities of caring for a child with a disability can be overwhelming, and navigating through the cobweb of “how to help your child” is limitless. Everything is now the “unknown.” The book you wrote in your head has to be completely re-written, and because no two children with autism are alike, you are steering your journey with very few resources, help or answers. Just the knowledge that you are now part of the “1 in 42” and wondering how with a statistic so staggering, more isn’t being done, can be unsettling and scary.
More unnerving than finding out Ethan had autism was being told that the number one cause of death for children with autism was drowning. According to the National Autism Association, “Drowning is among the leading causes of death of individuals with autism, and in 2009, 2010, and 2011, accidental drowning accounted for 91% of total U.S. deaths reported in children with Autism Spectrum Disorder ages 14 and younger, subsequent to wandering and elopement. “
When Ethan was diagnosed with autism in June 2014, two of the things we researched were safety issues (at the recommendation of our Developmental pediatrician, Dr. Hugh Bases) and early intervention services (which were later provided Cerebral Palsy of North Jersey). What did we need to do to make our home environment safe and secure for Ethan so we did not have to worry about him opening the front door in the middle of the night, and taking off? Elopement is a harsh and real reality of children who have ASD, where they will depart without warning, run off, and are a flight risk without being able to factor in any dangers or the environment; 20 degrees, no shoes or coat, 1:00am, no problem for children with autism. They see a light in the sky, something they want to follow, and they are off. It does not matter the circumstances.
With the assistance and recommendations of the Woodcliff Lake Police Department, securing the inside of our home with specialized doorknobs, safety gates, locks for the stove, bolts at all the doors, and an all-encompassing alarm system was the easy part. Chief Anthony Jannicelli, Lt. Jimmy Uhl, and Sgt. Dennis DeAngelis, Sgt. C. DeGeorge, and Officer Keith Kalmbach were just some of the law enforcement officers who helped us ensure Ethan was going to be safe and have guided us and assisted us on this journey. Whether it was installing a car seat that Ethan can’t unlatch, or providing resources, they have been informative. Lt. Uhl came to our home to meet Ethan and talked with us in person about safety, and what we could do to minimize risks. Most local police departments are trained in certain areas to deal with children that have ASD, so utilizing them as a resource can be very helpful and we felt grateful for the assistance.
Securing the outside world was going to be more challenging and the task seemed impossible, especially since Ethan took no direction. Since many children with ASD are drawn to water, and given that we knew drowning for a child with autism was the number one cause of death, swimming lessons became a priority for us.
We reached out to CPNJ and our special education teacher with early intervention, Ann Thompson, and it was recommended that individualized swimming lessons for Ethan might work best. Since Ethan could not verbally talk, and he was just starting to learn sign language, I was concerned how he would learn to swim with no communication. Our early intervention staff assured us that language was not a necessary component in teaching a child with autism to swim, and many nonverbal children with ASD are successful swimmers.
Since it was June, I started calling outdoor swimming facilities first, then indoor pools at gyms and hotels that offered lessons to children. Never did I imagine that once we made the commitment to do this, finding a facility that was willing to teach Ethan swim lessons would be a problem. After spending three months on my quest to find lessons for Ethan, I was on the verge of giving up. I remember waiting patiently with my son in his stroller for pool personnel to meet with me, multiple times, being told “we are full” after I disclosed Ethan had autism, and a gamut of other excuses.
Places that happily told me they had swim instructors available, became unavailable once I showed up with Ethan in tow, and it was evident there was a severe disability. Some places were honest, “we just can’t help you, and we don’t have the staff or the capability to teach a child with autism.” One facility said, “Come back when he can talk” as if I had a magic wand to make that happen. I left feeling defeated and sad. I thought 1 in 42 boys have autism and this person does not realize that “my son might not ever talk”. It is quite common that children with ASD never develop language. Some children do not speak one word. I started to realize there was a lack of education and awareness among many.
An educator from CPNJ contacted me and recommended an organization called HEART TO HEART, which has the capability to teach children with disabilities how to swim. At the time, they were providing lesson at the local Y (we later found out that many YMCA locations offer lessons to children with disabilities). They even had staff that is trained properly, which can be very successful in teaching children with autism. While we were still scared about putting Ethan in the water, we were relieved that Ethan was going to be able to have swim lessons, and that Heart to Heart cared about the 1 in 42, and the 1 in 68.
During our first Saturday session in 2014, Ethan’s one-to-one swim instructor slowly worked Ethan into the water using picture prompts and manual aids. She used a motivational system for compliance such as “getting to throw the basketball in the water hoop at the end” which Ethan loved. At the time, we just hoped Ethan would be able to learn enough if, god forbid, he ever needed to swim to save his life.
Along the way we dealt with many sensory issues that took months and (for some) years to break down, but Ethan’s one-to-one and her team got the job done. While Ethan is attracted to water, wearing goggles, getting his face wet, being in water that might not be the desired temperature, were all “triggers” for problem behaviors that would impede his ability to learn how to swim. The trained staff though is just that, trained. They understand how to break down these barriers through desensitizing the child as one example, and as the months went on, we saw progress, we had hope.
We had many challenges to overcome and it would have been easier to quit, but we kept reminding ourselves that the “number one cause of death is drowning” for children with autism. Unlike typical children, who can take direction pretty well at a certain age and start to understand dangers, children with autism usually do not, regardless of age. To Ethan, water is water. Whether that is toilet water, bath water, pool water, it was all water to drink. So it was no surprise that at 6 months into Ethan’s swimming he got very ill from drinking the pool water. We debated never bringing him back to swim, but our conscience told us “bring him.”
A year into the journey we saw progress and two years into the journey we saw Ethan put his head under water, swim with a board, happily wear his goggles and not need to be desensitized. Then it happened. On October 8, 2016, Ethan went from one end of the pool to the other without any support, and then back again. As his long-term instructor kept saying “make it rain, make it rain” his little feet kicked harder. At one point, I thought he was giving up, but each time we all yelled “make it rain” which means kick those feet so hard that water falls like it’s raining, Ethan swam faster and harder, and did it with an impish smile. I am not sure Ethan knew the magnitude of the moment, but he knew we were proud and he was doing it on his own. He was smart enough to know there was no board, no belt holding him up, it was just his arms and legs moving and kicking and doing what they needed to do!
While the kicking wasn’t perfect, and you could only make out at times that it was the crawl stroke, our instructor told us “he can swim.” I looked at her and asked “and save his life?” “Yes” she said followed by “we still have work to do.” My husband and I were overjoyed, I even started to cry as I felt a sense of relief that Ethan could swim. “He did it” I said to my husband, “he has ASD and he did it! He learned how to swim!” My husband looked at me & said “he can do a lot, we just need to give him the chance and have patience.”
I was so grateful for Heart to Heart and New York Sports Club in Ramsey, where Ethan took his swimming lessons after the Y closed down. I was also relieved to know that, despite our son having a disability, he can learn too. It re-affirmed what our two teachers from CPNJ always told us, “Ethan may or may not be able to do everything that the next child can do, but you have to try, give him a chance.”
While we were so happy, the “we still have work to do” part confused us. We were taught that children with autism have a difficult time generalizing, so if Ethan fell into a body of water, and he did not have a bathing suit on, he might not be able to swim. So at some point, Ethan will be swimming with his clothes on so he understands that, with a bathing suit or clothes, swimming is swimming and he can do it. Children with ASD are rarely taught to dive into the pool because they aren’t able to understand the rules of diving, that diving is only in deep water. Children with autism though are taught jumping, and even though it requires close monitoring, Ethan happily jumps into the pool saying “hooray!”
I won’t say it has been an easy journey, but knowing that our son could probably save his life, brings us a lot of comfort. While we try to be with him at all times, even in the best of circumstances with the most responsible parents, things can happen. Children have unlocked gates and wandered off within seconds, and we know children who have done it, including Ethan.
1 in 42 is a difficult statistic to wrap your head around, but to me, 91% of ASD children drowning under age 14 is an even scarier statistic. We don’t have a cure yet for the 1 in 42, but there is a solution for the 91% of accidental deaths from drowning, and that is swimming lessons.
No one wants autism, but I would not trade our “1 in 42”, our happy, sweet, giggly, lovable son Ethan Benjamin for anything in the world. While he is part of the 1 in 42, and with that comes frustrations; for one, that not more is being done to help children with autism, he is a bundle of love. Other challenges are the days when autism is flashing in green neon lights because Ethan is in an unbreakable stimm for hours and we can’t mentally reach him. Whatever it may be, I think most parents of children with ASD would share that the biggest sadness is when the autism takes over and your child is not immersed in the world around him or her, but is in a world unknown to us parents, a world somewhere trapped in his or her brain.
Our son is a whole person, just like every child with ASD. The lives of children with ASD, children like Ethan, are not worth any less than the lives of other children. Somebody having a disability does not mean they are less equal. Parents of ASD children have dreams for their children, just like the next person, just like we do for Ethan. Children with autism deserve to have just as many opportunities; a chance to swim, a chance to learn, a chance to be happy, a chance to play sports, a chance at all the wonders of life. So next time you think of reflexively saying “No, your child can’t come to this gym,” or “No, your child cannot be on the town sports team,” or “No, your child cannot have swimming lessons here,” remember that the only thing that separates you from being Jeffrey and Dana Berkowitz is 1 in 42.
On October 8, 2016, Ethan Berkowitz “made it rain” and he continues to make it rain in the water each week for his lessons. We hope other children with ASD learn how to swim, and we can reduce the statistics of accidental drownings, and increase the number of children with autism that “make it rain.”