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My last post (Hard Core Happiness) left off with adopting transformation over coping as ones mindset. I would like to now continue with (what would have been) my presentation at AutismOne over the next few posts.
Raising a Child on the Spectrum: One Dad’s journey of Transformation.
I am a sole custody dad with full time responsibility of my son, Alex. When presenting, I ask my audience (mostly made up of parents with kids on the spectrum) – how many dads out there have sole custody and or primary care responsibility? I then hear silence. The question is why. Why is this? Surely tradition plays a role, but can I be the only one in a conference of thousands? I have informally asked around for the last few years and the sense I get is that guys just don’t like adjusting “the plan”.
Yes “the plan”. Guys all have a “plan” for how things are to go in life and see no reason for deviating from. When faced with a challenge or roadblock we adopt the mindset of a tank to cope. We try and grind right through. So when faced with the roadblock of autism, psychologists tell us that dads have a difficult time accepting that it will take more than hard work or just grinding it out to cope. Psychologists also say that in general dads take longer to accept that there is a problem. They become defensive with the thought that their child is imperfect. This brings us back to “the plan”.
My take is that we need to TRANSFORM to become a positive force. In order to transform we need to think like a contrarian. This is anathema to many dads, well, actually most anybody, however, there are many benefits of being a contrarian. For example, when I worked on Wall Street as an analyst, being a contrarian led me to discover successful stocks most avoided as they were temporarily “out of favor” or required more work to research. So taking a contrarian view will not make one popular or provide an easy road, but the greatest rewards are there. This is the mindset we dads/parents need to adapt.
In the next few posts I will describe how becoming a contrarian and embracing transformation has helped me. But first, I’d like to give you a taste of the challenges this dad has had to overcome via a speech I gave at City Hall here in New York City a while ago….
A Day in the Life:
I am the proud single parent of a boy with autism.
My son Alex , who is 13 years old, regressed following his 3rd birthday in 2001.
Alex is non-verbal, but that was not always the case. He was once able to speak, in fact he spoke in his native English and even acquired a little Spanish at daycare. He was once able to count to ten in English, Spanish and Japanese. For example, on 9/11 he was able to say “turn that off, that’s scary” in response to television coverage of the attacks on the World Trade Center.
Six months later his speech was gone, and I did not so much as hear a “dad” for years. That too, is scary.
I would like to describe to you a couple of the challenges I have faced being a single parent of a boy with autism in New York City.
Taking a shower. Yes taking a shower can be a challenge. First, I have to worry that Alex will actually remain in the apartment while I am in the shower. You see Alex can now open our front door, and has made it as far as the lobby before I was able to retrieve him.
Should Alex remain in the apartment, I have to worry about our food supply. Once Alex realized he no longer needed me to retrieve his food, he became proactive about feeding himself, which is great, unless you emerge from the shower to find most of your food for the next few days gone, or on the floor, or strategically crushed into the furniture and crevices of the apartment.
A bit more disconcerting is to emerge from the shower and find stool on the floor, walls, or strategically crushed into the furniture and crevices of the apartment.
Having neighbors. Yes having neighbors can be a challenge. Most of the folks who live in our building are great, but acceptance and welcoming comments seem to dissipate with proximity to our unit. You see, to live on our floor means to hear and see Alex occasionally melt down, bang on the walls (occasionally with his head) and in general have to experience or see some of the challenging aspects of autism. Well on the plus side, we usually have the elevator to ourselves as neighbors kindly wait for the next lift.
I have answered the door on more than one occasion to find police officers there with a request to search the apartment as the same kindly neighbors called in suspected child abuse. Thankfully the officers I have met were all trained in responding to autism and our talk turned to their apology for having to ask me to sign papers that I do not in fact abuse my son. I would also like to say that on more than one occasion an officer has confided in me his concern that his child has or is regressing into autism. Quite the coincidence no?
And finally the subway. Of course the subway can be a challenge. Compelled by a sudden storm or other inability to timely hail a cab we have been forced into the tubes for an adventure. One time in particular, Alex who was sitting calmly and taking in accolades from nearby passengers as to how cute he is, decided he had enough and wanted out of the train. Being in-between stations this is of course impossible; thus Alex melted down, with full out screaming, hitting and biting of self and dad. I was forced to pin him to the car floor while our fellow passengers kindly evacuated to the other half of the car. We beat a hasty retreat at the next station and opted to walk in the rain before the possibility of having to explain ourselves to the authorities.
Next Time: Welcome to the Club Nobody Wants to Join.
*If anyone would like a presentation copy or sample spreadsheet (that I reference throughout the presentation, visit my site www.kensiri.com and send me a request).
