A family friend just died of cancer.  A really good man who was fun and funny, who enjoyed life to its fullest, and whose warmth and generosity will not be forgotten.  I was really sad.  For his daughter, who is a close friend, and for his wife of 45 years…one of the strongest women I know.  We attended the funeral, a full Catholic Mass.  I entered the church with a heavy heart, willing myself not to cry.

So many times people have said to me “Well, at least it’s not cancer.” when talking about Harry’s autism.  I am rarely hot-headed, but I’ve thought a few things to myself that I wouldn’t say out loud to a well-meaning friend who uttered that phrase.  I’ve lost several friends–two under 22 years old–and family members to cancer. But at times, cancer seems like a cakewalk compared to what we live daily. At least someone with cancer can tell us what hurts…for a long time, my son could not. So, I am not minimizing autism when I say today they were right.  At least it’s not cancer. I’ve still got a shot at making him well.

The service started, and I was wrapped in the familiar.  I am not Catholic myself, but I attended an all-girl Catholic academy, and my kids are baptized Catholic.  I took religion classes all through grade school and have been to enough masses to know every song, every response, every prayer.

As we sat there in a packed church mourning our loss, I took comfort in the sameness.  The rituals.  Knowing what to expect, when to kneel, when to stand, repeating prayers I’d uttered hundreds of times growing up.  And maybe for the first time, they weren’t just words.  There is something beautifully reassuring about the deep seated, ages-old rituals of the church.  To sit, to stand, to kneel, to respond with “Lord hear our prayer”.  The repetitiveness was soothing to me.

It struck me that this is how Harry must feel at times, when he tunes everyone around him out, holds his ears, and runs.  Back and forth, back and forth, across the lanai.  He doesn’t stim all day long anymore, but he does run when we have a house full of very loud people (and if you met our super-supportive extended family you would know that loud is a gross understatement).  He takes comfort in the repetition and sameness when his surroundings become unpredictable.  We used to try to stop him from running, but given our deeper understanding it now seems mean to take away what soothes him.

Lately I’ve joined him and he loves it.  He immediately stops running with blinders and engages, turning his head back as he runs, looking at me to make sure I’m running behind him.  The family joins in.  All running behind him, imitating his actions.  He laughs so hard at this, obviously delighted we’ve validated the one thing he uses to keep himself together when he is stressed.  And suddenly, it’s not a stim.  It’s a bridge.  And we are there, connecting with him in a way he truly appreciates and understands.  In the same way that the church and the rituals connect me to something more encompassing than myself.

We are on our way to recovery.  We are not there yet, but our two worlds move closer every day.  We get to watch and wonder as he does things he’s never done before, marveling that he wrote his name, or said Mama five times in one day.  And I feel lucky to be a witness to that.  Perspective.

To those in the depths of it right now, know that perspective will come with healing.  Read everything, research relentlessly, talk to everyone.  Find what works for your child, no matter how long it takes for you to find it.  You CAN do this and you’re not alone. There are many of us here to help you along the way. Just reach out and ask.

xx Goddess

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14 Responses to Perspective

  1. Mik says:

    Thanks for writing this. I soooo needed it today.

  2. k strauss says:

    Beautifully written! I’m so proud of you and how many people you are educating! Way to go Harry!!!

  3. KFuller says:

    Brings back happy memories of when my husband and I and the tow olders would do this with the boy. Every odd move and action. He loved it, and it did connect him to us. Made it easier for us to expect him to do what we were doing to. Nice post.

  4. Poppy TMR says:

    Beautiful. Harry is so lucky to have you as his Momma <3

  5. I think about you often and your daily struggles. I’m on a Guild with Children’s Hospital of Seattle. I was at a presentation of one of the top pediatric neurologists who does so much research on hoping to unlock the mysteries of the brain and one of them being of course, autism. I think of our future, our work force of men in the next 30 years, 1 in 80 with Autism, if not more. What will our world be like? What will our grand children be like? Your post on sounding the alarm is still with me. I hope there’s progress soon. 🙂
    Keep running. xoxo

    • Goddess says:

      It’s a complete travesty…what’s happening to our kids. One day we will look back at this period in absolute horror. Thanks for reading. Keep talking. People are listening.

  6. Kelly S. says:

    I recently did the same thing—looked back to see just how far we have come. Perspective is everything. My daughter too, progressed tremendously with the Brain Balance program. She is 9 now, and we have been healing her for 6 1/2 years now. It has been a wild (and expensive) ride but we are finally getting closer to recovery. And I do thank God it’s not cancer.

  7. aefountain says:

    The most beautifully written line I have EVER read.

    “And suddenly, it’s not a stim. It’s a bridge.”

    We are world that we believe everyone must come to our place. Yet there is such beauty and delight in where our children live and it seems to me their happiest moments are when we cross the bridge to them, not pull them across where we stand.

    Thank you.

  8. Allie says:

    Sometimes, on those REALLY trying days, I make myself physically turn around and REALLY think about the road behind us. Where we were a year ago, or six months ago – sometimes I reread my blog and make myself relive those insanely trying times as Aidan progressed through the Brain Balance Program. Forcing myself to remember what we’ve been through and just how FAR we’ve come helps me get through those really trying days. Those days are fewer and further between, but we still have them. And perspective is my most useful tool. Thanks for the reminder, Goddess, and my deepest sympathy for your loss.

    • Goddess says:

      Thank you Allie :). I do that too. At 18 months he sat in a corner drooling and rocking and we kept testing him for hearing loss because I was convinced he was deaf. He was ‘failure to thrive’ and constipated no matter what we tried. Fast forward to now and all I can do is smile from ear to ear. We’re still working on speech but he just learned to swim and he’s so darn proud of himself! The rest is coming and I can’t wait to watch it all fall into place.

  9. Dana says:

    I needed that this morning!! xoxo

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