This post was originally posted on my blog Walking in My Shoes (http://www.walkinginmyshoes.org/2010/07/journey-of-acceptance/),
July 11, 2010
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Each and everyone have a different experience of how they live with someone who is autistic.
My personal experience with my son has been humbling. But maybe that's just me.
I remember when my son was born, my heart exploded, and I welcomed him with innocent eyes, arms and heart. It was magic. I was completely open to him and in heaven whether he would do or not do anything. I had the most precious thing in the world. I was ready to do anything for that poor little innocent and fragile little baby...
I think acceptance was my initial way with him, and is still is today, except there were few (big) adjustments in between. As a typical parent, I started wondering how my child would grow up. I had some expectations about what my son should ‘normally’ be able to do. Though, I was always conscious that all children grow at their own pace, and I quickly avoided the trap of comparing kids. My wife who was with my son 24/7 got more concerned than I was... she was also more regularly confronted with my son's challenges and thus it became hers. So little by little I started believing that something may be ‘wrong’ with him. I always thought that I could never have such thoughts of my son. I think I've been against that feeling, even as it was clearly becoming obvious our son was not doing well.
Then I started getting into the “how can we fix him?” and I got onto the web and search for ‘what’ my son could have and what could be done. Then I came across all sorts of things that can be done, but somehow I failed to read, (or believe) than my son could be autistic and that he would still be until the rest of his life... When I realized that my son may be autistic, I wondered what we were going do about ‘it’? This comes after months, years of intense meltdowns, quirks, increases of challenges of all sorts.
Aparte: Notice the progress since birth where I accepted my baby has god-sent, into ‘ah my son has a problem’ and then, ‘ok let's find out about it and let's fix it’. We live in a society who has zero tolerance for non-normal, illnesses, weaknesses. Any physical or mental discomforts need to be treated and resolved. It’s not surprising to have parents who want to fix their children’s ‘out-of-the-line’ conditions… but that will be for another post.
But then, I got to understand his condition... And I guess I intuitively knew that was an important thing to do, to understand autism from inside out. I met some autistic people on Twitter, who literally opened my eyes. Among them, I'll be eternally thankful to a woman who was open to talk to me about how it was for her. During an exchange, she told me about autism, as being part of who she was, and that by taking that away, she wouldn't be her anymore (or something to that extend).
Wow. These words really hit me. It was a very strong moment, a turning point, an epiphany. It felt like I had been hit by a storm and standing naked on a cliff facing the wide horizon (of humanity) as the sun was shining through the clouds again. It was humbling, but also luminous, warm, and as bright as it can be, surreal (except I was still sitting at my computer, lol). I felt compassion and hope as I could now see the light. It completely knocked me off of the let's fix ‘this’ approach. After all, it wasn't an illness or a problem we had to solve, it was my own son’s whole being we were talking about. I put me in respect of the complexity and legitimacy of being human. There came back the full acceptance of the being and becoming of my son.
It wasn’t just these words who changed my mind set. Her words reminded me of the humanist and phenomenology class I adored when I was in graduate school. The humanist approach has always been part of my philosophy. So, I think this approach, this woman’s words and my son’s condition clicked and created a coherence so powerful, that it woke me up.
It was like a deep realization that how each of us go through a journey, and that all our being, physical and psychological is part of who we are, no matter what our challenges are. It meant that there is a need of humility & acceptance of people in order to be able to help them.
Then naturally, when you open up to how it’s like in some else’s shoes, you are receptive, you can discover the unexpected, the challenges but also see the gifts. I discovered my son had sensory processing issues. Check this video of sensory overload, as an example:
Sensory overload Stimulation by WeirdGirlCyndi
Whether it's exactly like that or not doesn't matter. Whether it's the same for few or many people doesn't matter either. This experience of sensory overload helps us being aware of how it can be to be a human being. This type of example is truly is revealing of the complexity of humans, and truly humbling in regards of what humans need to function.
I realized that we take far too much for granted. Then, I started to relax about what my child could or could not do, because I had sympathy for his struggles, and more over I started looking at the world through his eyes. It truly helped me understand our son’s challenges and how we could help him.
Acceptance in the way I presented it is a fundamental step towards building a respectful and unique approach about his way of being. Then, only then, we were able to provide adequate support to help his development.
Generally speaking, it can be hard for people to understand how it can be for others. We all have our own point of reference. Beyond that, we can only assume how it is for others. People spontaneously project their own standards onto others, and most of the time, it works out just fine. Life is tough, and there are so many people out there who have no clue about how different it can be to be human, and they can be really obnoxious. It's (too) easy to be insensitive with an autistic person…
