Welcome to My World(s)

kaleidoscope: "the beautiful form watcher"

There’s nothing I’ve experienced like autism to infinitely change the way I think about everything in any direction possible.  Politics, Religion, Love, and Family are just a few subjects on which my perspectives have changed.  But nothing shapes the way we love and live like our experiences in families.  And nothing affects families more than something like autism.

Families have forged together since In The Beginning.  Each member’s perspectives swirl into a recipe for defining family.  We pour our passions and fears to flavor.

Today I lost my equilibrium and yelled at my eldest child.  He woke up and reported in his deep, booming monotone he didn’t think it was a bad day or a good day; it just needed to be organized.  I took that as a cue for him needing his schedule in order to reduce anxiety.  I told him to bring his clipboard.  I helped him make a schedule for his morning.  When he saw it was finished, he started to lash out using an old script of his.  “I don’t want to eat now I want to have a relaxing day I don’t need workers stop telling me what to do…”  He wound up and pitched a fit.  Instead of using a cool-mom Kung Fu side-step, I took the emotional hit and struck back with my own tired script.

Sustaining and nourishing the family are jobs that require getting out of my own way.  When I can do that, I sometimes get a glimmer of what the children see.  The sense of time passing is different from mine.  They seem to experience moments as loosely strung, at perilous angles on diaphanous chains.  Their perceptions morph and crystallize into one-of-a-kind hanging gems, sometimes beautiful, and sometimes terrifyingly raw.

I keep trying to glance through this trinity of soul-clutched kaleidoscopes; I become pliable and shape-shift through their moments.  I am a translator.

Somehow I think if I can keep looking to understand, I will figure out how to break down the barriers in them and then also in me.  The strongholds of autism are social, communication, and restricted behavior.  My own strongholds are far less well-defined and not as pervasive, but perhaps more insidious.

To struggle in a world that cannot understand you fully and you cannot fully understand is maddeningly frustrating!  Even with the glimpses I’ve been given, I will never know what that feels like.  My desire for my children’s healing now races with a new desire for my family to be made whole.

I ask Forgiveness.  I forgive.

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15 Responses

  1. Wouldn’t it be great if there was a forgiveness button somewhere to push, but with all the people needing forgiveness I’m sure the line would be too long for me, I get so impatient having to wait.

    • I miss my mom. She never knew my three boys that well or that we would be living with autism. But, when she was in the process of dying, she said something I’ll always remember: “The things I have been searching for, waiting for, have been closer than the tip of my nose all this time.”

  2. I love the part about trying to find a glimmer of what they see. Sooo Culture of Autism! http://www.autismuk.com/index3sub1.htm
    When I give the structured teaching talk I talk about trying to put on our autism glasses to try to see what they are seeing and start the translation from there…but you said it much more beautifully than I ever could.
    And forgiveness…That is a nice reminder…so many areas that I try to….but the ones that strike me reading this, are the ones I so conviently busy myself to avoid addressing. Your the best Alison…I get to see you in action and still don’t know how you do it!

  3. Autism’s indeed challenging in many aspects, but can also be favorable in some ways! Guess it depends on the individual’s level of functioning too.
    I think it’s always better to look @ the bright & positive sides of the spectrum.

    • Only the highest of the high-functioning autistic children will ever see their autism as “favorable in some ways.” This is quite simply not the experience of the vast majority of autism parents. Those of us with extremely high-functioning children can easily tell everyone else to focus on the “bright and postive” sides of autism, and quite simply don’t have a clue what it’s like for those not as fortunate.

  4. …Give us this day our daily bread and forgive us our tresspasses as we forgive those who tresspass against us…I can never pray that one too much.

    You write so beautifully Alison…have you thought of writing a book? As if you don’t have enough on your plate…but your words go straight to the reader’s heart.

    I wonder, “How does she do it day after day after day? And I am bowled over by the power of a mother’s love.

    • Thank you, Debbie. I’ll get to writing that book after I lie on the sofa and throw some cheese doodles at Martha Stewart’s head.

      • just on a cute note…my friend was just telling me about a kid in sunday school saying “why is tresspassing the biggest sin” -cute

  5. This is my life as well! I can relate so much!

    When I fall into that negative scripting (it’s not just for the autism spectrum!), I am reminded of all the supports that God has built into my life to keep me on the right journey! I am so thankful that I can claim you as one of those people in my life!

    You really need to think about writing a book (in all that spare time that you have).

  6. Love adds a precious seeing to the eye – W. Shakespeare

    It is through undying and unparralleled love and forgiveness that I am able to move forward everyday through this beautiful minefield.

    Well said Alison….now let’s get hot on that book!

    Hugs….

  7. D.I.T.T.O!

    • Just a short update: More than a few people have emailed me privately and told me they forgive me. This is most welcome, of course, but I had no idea there were so many cans of worms out there…

  8. Forgiveness is the highest form of love!!!

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