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As Fathers Day 2015 approaches, I am thinking about Fathers Day 2008. That’s when my son Alex came to live with me in Manhattan. I am thinking that Alex (age 9 in 2008) on his first day in the city would walk down the streets and in the parks holding my hand as I showed him around. I would often get nice comments from folks who thought it cute that a son would be holding hands at age 9.
Back to 2015 and Alex (now age 17) is still holding my hand as we cruise the city, shop and even during a recently attended dance at his school (see photo). Now I get smiles but no more comments. But I think it’s cute!
You see Alex has autism, is presently non-verbal, communicating primarily with an iPad, has had autoimmune issues (ulcerative colitis), behavioral issues, and sensory issues. He currently attends public school in Manhattan, and previously attended a private autism school in Manhattan. It’s been an amazing journey so far, with highs and lows but all on an overall positive slope. I would like to share a few of lessons that I have learned on this journey.
Lessons Learned
First is to take ownership of all aspects of treatment, education, therapy and organization and view yourself as a CEO. I am the CEO of Team Alex. To do this you will need to speak out and be prepared to fight for the rights of your child. The “squeaky wheel gets oiled” may not be fair, but that is the way to handle the many bureaucratic organizations and mindsets you will encounter.
Secondly is that to have the desired impact on your child and accept and acclimate to a life that one cannot be prepared for you will experience stress. Stress unimagined by those not in our autism universe. How much stress? There was a study done, (several actually) where parents of children with autism were stress tested and compared to various professions, the closest equivalent, combat soldier. Not just a soldier mind you, but one in combat. Basically we autism parents are under fire 24/7.
Everyone, especially autism parents, have gone through challenging times. And we all get through these times. Some though seem to come through easier and emerge stronger than before. The secret lies in staying present and maintaining a balanced mind-set. Below are some things to remember for the next challenge to get you to that balanced state.
“Weather you think your can or can’t – you’re right.” Mostly attributed to Henry Ford, many versions of this quote exist, but all have the same meaning. It’s a problem if you think it’s a problem. It all depends on your mind-set. If you allow your mind to see challenges as problems you are creating negative thoughts and emotions, which are not beneficial and have a way of leading to negative outcomes. If you view the challenge as something you can learn from the problem dissipates.
“It is what it is”. Not sure where this exact version is from, but it traveled around in my Wall Street days. A version is attributed to Buddha though and from here we lean that resistance leads to suffering. So suffering only occurs when we resist how things are. This does not imply non-action. In fact, the remainder of the Buddha version is to take action if you can change something. However, if you cannot change something then you can either obsess and create negativity, or accept what is and let go of the negative.
“If you want things to change in your life, YOU have to change things in your life.” There are other versions of this but all point toward the backwardness of thinking in regards to change we frequently have. If we want circumstances to change, things to be different than they are, then we need to change ourselves first. Take responsibility for change.
Bad things don’t happen to you, likewise, people don’t “do things” to you. You are a victim only in your mind. It is you who create your own reality, experience and viewpoint. You have total responsibility for your mentality, how you label things. So put aside the idea of being a pawn or victim during challenging times and change your viewpoint.
When things get tough, and they will again, remember, “Even when the sky is heavily overcast, the sun hasn’t disappeared. It’s still there on the other side of the clouds.” – Eckhart Tolle. Just know that anything, including miracles, are possible and happen every day. I am sure you know of someone who overcame a tremendously challenging obstacle in life, if they can, you can. You just need to believe you can. Once you do, you will.
Ken Siri, author, advocate, and entrepreneur, is the single father of a 17-year-old boy with autism. He has authored several books on autism, is the subject of the documentary film Big Daddy Autism and is active in the autism community in New York City where he and his son reside.
