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Tuesday, July 26, 2011

The Walls Are Coming Down.

I didn't want to have sympathy for those who railed against their child's ASD diagnosis (dx). Who talk about their experiences as parents, and their childs suffering in such honest and brutal ways. I wanted to soothe myself by listening to stories of hope, of happy endings, of triumphs over seemingly insurmountable obstacles. That's what I wanted to hear because that's the story I wanted to live also. It was easy to go there because I was still processing Harri's dx, and the full impact and realisation of what this may mean for my son had not completely sunk in. But it's starting to. As he approaches his third birthday and I see more clearly with the marching of time how his brain is so differently wired to my other children, and his peers.

I find myself going back through the pregnancy to consider what environmental 'insult', may have led to his developmental detour. Was it all those stressful episodes? Lack of sunshine? Too many pre natal vitamins? Old ovaries? I find myself experiencing waves of guilty and depressive thoughts about the futility of life. About the selfishness of even choosing to have children, and the legacy my son must now bare because of .....what? I don't know what. At least when it comes to causation. I don't know what when it comes to contemplating my sons future either. What I know right now is the slow dawning of reality. A waking up process that gently moves me away from my overly optimistic space, and one that had no room for others pain and negativity, to a more balanced view that allows compassion for the many children, adults and their families, for whom ASD is taking a great toll. An Autism that is far more devastating in it's impact than that my child lives with.

My son is incredible, both because of and despite his disability. I remain optimistic about his future.  I know how incredibly fortunate we are to have an early dx, to be participating in a wonderful program, that he is verbal, that self harm is rare, and his learning rate is good. So much to be thankful for. Yet no walk in the park. Do I have days of self pity? Hell yeah. Do I worry about my child's future? Constantly.

But there has also been a shift that has allowed me to be honest with myself about my fears, and that has given me permission to let down the defenses that prevented an opening of my heart to the pain of other parents. I can now allow myself to accept their struggles and suffering more mindfully rather than reject them because it challenged the narrative I was desperate to hold on to. I suppose this is part of the journey towards acceptance.


  1. We all follow this path. We fight, we fall, we cry. Then we pick ourselves up again, dust ourselves off, and keep putting one foot in front of the other with their small hands clasped tightly within our own.


    Madmother who is too damn tired to log in and out to post this comment.

  2. Powerful post Sharon, really tugged at my heart-strings, and rang true for a lot of the rollercoaster of emotions I often go through too.

    Some days I don't want to see and hear about the horrors, I want the beautiful future on offer from the best stories, but I can't afford to lose sight of my son's and my own reality either. It's a fine line sometimes between perception and reality; to a degree the perceptions we have can shape and change our reality so we try to make them as positive as possible, but there is always a "core of unchangable reality" (I can't think of a better term at this point) that we must keep in sight, for our own good.

    Being aware of others' good and bad stories is valuable for perspective and ideas and understanding, but there are some days when I just want to not tease myself with those who have it better, or depress myself with those who have it worse. On the days I can cope with that, I actively engage with those others and their experiences, but some days it's just too much and I bunker down until I'm in the right mind frame again.

  3. Wow. Incredibly honest and thought provoking.

    Of course, as Aut & Ought has said, our perspective shapes our experience. Suffering is indeed a part of the autism experience for many people on the spectrum as well as their family members. But a lot of the suffering can be spared by handling the hard stuff with grace and accepting people who are different, and not treating those who are different like second class citizens. This does not readily solve the developmental delays or the physical pain of sensory overstimulation (etc, etc), but being positive and accepting builds a solid foundation in which progress can more easily be made.

    How are you processing this paradigm shift? Are you in a good place, mentally?

  4. Hi Sunshine, that's an interesting question about my headspace. I find I fluctuate or cycle through different spaces mentally during the course of a day. I'll be travelling along nicely, then the reality of our situation hits me followed by a wave of anxiety, which is then followed by a mental reminder of how fortunate we are, then calm returns. As I said in the post I think it's another phase in the process towards a deeper level of acceptance.
    Thanks for your insightful words.

  5. Our posts for Tuesday would almost make me believe in synchronicity.

    The longer I parent my very special children, the more I realize that acceptance is a continual process, that expectations are often not realized (both for the good and the bad--look how far Bobby has come--so much more than any professional ever gave him a chance of), that flexibility is vitally important and that some days are about nursing our own wounded hearts.

  6. Have to tell you KIm, the stories you write about Bobby are the ones that give me the most hope for Harri.

  7. What you're going through is something I don't understand but you have my congratulations for being so strong

  8. shinkendelfenix, thank you for your most kind words.

  9. Sharon,

    I'm so glad to know that! He's so very different than he was even a year ago in functional skills that I want to pinch myself. He's going to be working with kids in the kids session of the Beat the Back-to-School Jitters event I'm hosting, and I'm looking forward to seeing him talk and work with them. Who would have thought that could happen? :-)

    Don't ever give up hope that effort matters, that progress, even when seemingly glacial, does happen.