What do you believe about my future?
Updated: Apr 4, 2018
By Leo Hart
Belief would change forever with this child. Our first born.
Autism would come for him at around 18 months of age. Until that time he had been hitting all of his milestones and despite being born with a single kidney, he seemed to be thriving.
But one day around a year and half, he seemed listless. Eye contact dropped off and he became rigid in his behavior. What language he had was now fading away and he began to grunt for all communication and have long unexplained tantrums. My mother had mentioned that we should have his hearing checked because she noticed that he didn't seem to respond even when something fell behind him and made a loud unexpected noise.
I started to have my suspicions that Autism could be involved. Not that I knew much about it at the time, but it just seemed to be showing up in everything I was seeing in my daily life. When it was officially diagnosed a little after his 2nd birthday, it wasn't even really a shock.
But that time would pass and quickly be filled with that of worry. Uncertainty was now the new normal. We waited on therapists and doctors to tell us what to expect and where he would be headed in his life. And the outlook did not seem positive.
And the outlook did not seem positive.
I'll note that our child was relatively calm most of the time. He would get overwhelmed and want to be alone but he wasn't hurting himself or others and it was never very challenging to keep him physically secure. I know many parents live with those circumstances and this was not part of our everyday experience. But even so, he was utterly detached from us. Eye contact continued to weaken, if not gone altogether. And he really just lost the smile and connection to our family dynamic that he once had.
As a father this was particularly difficult. I had these visions of what life would be like bringing my son up? He had a newborn brother around this time as well, and what would this diagnosis mean to the kind of big brother he would be? Would they even have a relationship? Or would we all just be objects in the room with him?
You see, these were potential outcomes. In fact, they were even the outcomes that we were told were most likely. And with these outcomes defined and handed to us by members of the mental health community, a prognosis of difficulties and uncertainty would become the vision of life that we would begin living into.
But something didn't feel right.
But something didn't feel right. Was the maintenance regimen prescribed to him all that we could do. Was learning to live with his diagnosed challenges all we could look forward to?
It seemed that way, in the moment, but to ease our minds my wife and I looked to potentially expand what was possible a little bit at a time.
I will tell you that the Autism world is not short on potential treatments. Initially you are pushed onto a path of one insurance covered therapy type but if you even have your eyes half open, you soon find out that the landscape of potential options is actually quite overwhelming. We hunkered down and started in on some.
We were seeing some slight improvements soon after but the effects seemed short-lived. He seemed to fall back into his patterns when we stopped going to sessions. This was also quite difficult to endure.
My wife would eventually attend a conference about all things Autism and she would get blown away by one particular presenter. His name was Raun Kaufman and although he was in his 40's, he had been diagnosed with severe Autism as a young boy back in the 1970's. His parents would actually end up accidentally inventing a therapy program that would actually recover Raun from his Autism and bring him fully into the world. He eventually graduated from an Ivy League university and holds a room as a presenter much the way someone like Tony Robbins might. The development of this therapy program all happened because of the lack of options available to his parents in the late 70's. They would eventually refine and build this therapy program into one that they would teach to parents and caregivers of special needs children from all over the globe. This training still goes on today at their campus in the countryside of Southwestern Massachusetts, known as the Autism Treatment Center of America.
We would go there and get trained ourselves in December of 2012. I remember not wanting to go because of the cost and also because it would take both of us away from the kids and also take me away from work. But my wife insisted and told me that she wasn't going to go to the training and get all pumped up only to be poo-poo'd by me upon her return. So I went and ended up changing my life in the process.
To make a long story on slightly shorter, I learned some things I didn't expect to learn on that trip. And the best part about it was that I was not ever told what to learn. Only to search for what I believed I had learned. My takeaways were as follows...
I love my son
I want the best for him
He's doing the best he can at all times
I can always be hopeful for his recovery but not tied to any particular outcome
But the biggest revalation was that this all didn't just apply to him. It was actually how I could be with everyone in my life.
It all didn't fully sink in until we came back home, began our in-home therapy program and he began to explode with growth within 6 months.
Looking back on it now it seemed like it happened overnight but it definitely was a process. We ran the program in our basement bedroom for nearly 3 years and trained some 12 to 15 volunteers that would share the task of being there for him in his playroom for 2 to 3 hours at a time. He would sometimes do over 40 hours a week of therapy in that room. And he wouldn't want to leave.
It almost seems unreal to look back on it now. Eye contact returned. Vocabulary returned. Flexibility and attention slowly made their way back. And although there was some specific actions we took within that playroom, the real change was within us at first and not him. It was just this slight shift that more could be possible. Leaving that light on lit us up in a way that connected with him. It was happening in a way that the dim prognosis of modern medicine hadn't done.
We had simply changed our beliefs about what could be possible for our child and that change seemed to open the door for him to do the rest. And in that transformation, we transformed. I can mainly speak to my own experience and I definitely transformed. It was my first taste of really bucking the system and believing something that did not look like the logical thing to do at first.
I'm still reactionary at times but it's in a different way.
Because of that experience, which was almost religious in some ways, I've pushed myself to better understand myself. To better understand why I'm putting information together in the way that I'm putting it together. I'm now present to what is influencing me and how I'm consuming the information coming at me throughout my days. I'm still reactionary at times but it's in a different way. I can see it happening as if I'm watching myself act out a play. I often continue the scene just to understand myself better and how I've created these patterns I participate in.
And I that's what this site and my content is going to be about. Not Autism or even mental health in general. It will be about each one of us understanding ourselves at a deeper level. It will be about seeing the mechanisms we've built and determining if those mechanisms will continue to serve us or need to be replaced for something more useful. In fact, I even invested the time and money to obtain a certification in a mentor/counseling methodology that facilitates this process.
I owe it all to that 18 month old of mine. I wish I could go back in time and tell myself that the answer is in the future. But that wouldn't really of worked for that version of me. He had to do it the way he did. Bumps and all. But I have recently hugged and thanked my 9 year old. You see, he's still breaking through beyond our wildest dreams and inspiring us to reach for more.
Well I'm reachin buddy. And thank you for showing me what we can do with our future if our minds are open to possibility.