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So Much….

May 20, 2013

“We should not judge people by their peak of excellence; but by the distance they have traveled from the point where they started.”
― Henry Ward Beecher

I have taken quite a break from here over the last month. We’ve been busy!

We moved! It is even more perfect than we had hoped it would be. I look out the window, and all I see are trees. I spend afternoons on the front porch swing with a drink in my hand and Mary’s head resting on my lap as she lies across the swing smiling at all the trees- oh how she loves trees. I often wonder what they look like to her. I wonder if she sees a tree, or more likely hundreds of individual leaves, each one dancing individually, delighting her with each twitch and wiggle.

In the midst of all this moving, Mary has had more medical appointments, yielding more confusing results. We will be back to feeding therapy over the summer, as she has started choking more often again. While there is a fair amount of concern over her lack of chewing and trouble with swallowing, our attentions have drifted to her vision. Her eyesight, which had been steadily improving as she grew, has suddenly worsened. While the net effect of this is not a huge overall difference in her current vision, given her still unknown diagnosis, it was enough to raise some red flags. Her eye doctor immediately ordered an ERG to test her retinal function, which can often be affected by mitochondrial disease. We are (of course) still waiting on those results. Her eyesight has always been poor, but it still brings her so much joy – She can stare at a tree for an hour and never grow tired of it. This is not a journey I want her to have to make. Once again, we wait, uncertain of what the future will bring for her. But for right now, there are more leaves in her own yard than she could ever dream of, and so we will spend our afternoons on the swing, watching her leaves dance in the breeze.

During all of this, there has been a strikingly different development taking place in our little family. Little by little, step by step, Troy has been making steady progress. It has been four years since the word autism was first mentioned as a possibility for our family. Four years since we realized that our scared, frustrated, shy little boy wasn’t simply acting out. Last week, he was discharged from all of his therapies. He has mastered all the goals that were set for him. He has learned coping skills. He has learned to recognize when he is reaching his tipping point, and how to ask for help. He has learned how to ask his friends to play and how to have a conversation. He has grown. He has matured. And now, he is a full-fledged self-advocate. He participated in his own meeting. When offered the option of continuing therapy on a very light schedule, he explained calmly and clearly to the professionals in the room why he did not need it, the goals he had accomplished and he showed them just how independent he could be.

We all agreed that it was time. Time to move on. He is still very much my little Aspie. He can still talk about cars for hours at a time. He still has all of the sensory issues he always had. He still needs to have a schedule. He is not “cured,” nor would I ever want him to be. The difference is his confidence. Without ever forcing him to conform to NT standards, we have managed to support him and teach him the skills he needs to manage his sensory needs and his anxiety. He is engaged. He has friends. He has that measure of self-control that seemed unimaginable just a few years ago. He is an intelligent, responsible, caring big brother, amazing young man, and now an official self-advocate, signing his own discharge papers, and taking some control over his own destiny, and his mama couldn’t be more proud.


6 Comments leave one →
  1. May 20, 2013 2:33 pm

    Guh! Tears! Congrats to your son and your family on his steady and beautiful progress! What an accomplishment for him and all of you. He must be so proud of himself, as he should be.

    As for dear Mary… I hope you are able to get answers soon. The waiting is forever the hardest part. 😦 I am glad she has so many beautiful trees to enjoy, especially now as they’ve all gotten their leaves finally.

    • May 23, 2013 3:45 am

      Thanks Nicole. You never do get used to the waiting. That said, doctors are almost always wrong when it comes to Mary. But it does give us pause to appreciate and make the most of what we have right now.

      As for Troy, he is super excited and proud of himself – rightfully so. 🙂

  2. May 22, 2013 4:51 am

    Congrats on the move! What a beautiful picture you paint of you and Mary enjoying the trees. I’m very happy to hear of all Troy’s progress. It gives me hope. (& I love the picture of the two of you!)

    • May 23, 2013 3:48 am

      Thanks! He has worked so hard, it’s great to see it paying off for him. It’s also proving to be a bit of motivation for Joyce. If she can master her goals, then she too can “fire” her helpers. 😉 She tells me they “boss” her, but now she sees how she can get rid of her bossy helpers too.

  3. Life&Ink permalink
    May 22, 2013 5:17 pm

    “we will spend our afternoons on the swing, watching her leaves dance in the breeze.”
    Love this Erin, as I love the image of the two of you on that most awesome porch!!!

    And a heartfelt congratulations to both Troy, oh maturity, it does wonderful things for our kids. It lets them reach heights we sometimes couldn’t imagine ever seeing. There will be more, indeed there will be more.

    Hugs to Mary and to you. Thinking of your little family and sending you huge positive thoughts! 🙂

    • May 23, 2013 3:49 am

      Thanks! I was so excited that the previous owners left us the swing. My husband had it set up for me by our second day here. And Mary is so enjoying her leaves.

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