A Magnificent Boy

He runs like a gust of wind, fast and brisk. Every now and then, he looks back to see if I’m still following. Of course I am, I’ve been chasing him for years. At last his hand is within my reach and I grab it, hold on tight. Any other time I would put the brakes to his elopement but I see his face and it radiates such pure joy, I allow him to pull me along.

And so we run.

We run hand in hand as the wind whips through our hair. Even though it is night and even though we are surrounded by crowds at a football game, I feel everything still into this perfect moment: me and my boy flying through space. I am part of his world in this moment. When he looks up at me, it’s as if in slow motion, his face a breathtaking picture of contentment, mischief and love. His face tells me more about what he’s feeling than any words could.

I feel the same desperate love lurch from my body as I did the day he was born and they gave him and his brother to me to hold. It’s so brutal and exquisite all at the same time.

I think of this as I read the results of his neuropsych evaluation, a report so stark, so black and white, I throw it across the room. I am knocked down by its coldness and surprised that my grief lies dormant so close to the surface. The sobs I hear, the sobs I cry are so violent — am I still grieving?

Expressive and receptive language skills roughly equivalent to those of a 2-year-old child; daily living skills…a 1-year, 10-month to 2-year, 5-month-old child; socialization skills…an 8-month-old to 1-year, 4-month-old child.

The gap widens the older he becomes.

I remind myself this is just another moment in time, a day in which John was at the tail-end of a strep infection. I remind myself that it is hard to test someone with John’s unique verbal challenges and that just like receiving that first diagnosis, he is still the same boy. I tell myself that I’m not a failure as his mom, as his primary teacher. It is what it is. And he’s a happy child, an amazing boy with abilities to be discovered over time. He is not this report. My grief lies in seeing anyone dare sum him up this way. Why oh why must he be summed up at all?

I remember chasing him across the football field and then how we ran together. I think of all the moments he reveals himself to us, moments of stunning technicolor, his soul bare for all to witness. What if I could gather all these moments, like a cup of jewels, and write my own report. I would start with: A gust of wind, a magnificent boy.

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  • And so you do. We moms get to write reports based in love, in the reality that our children are multi-dimensional. That there is more to these children than what the test scores show, and that all of it matters to us. He is your magnificent boy. One of your magnificent boys.

    love.

  • I’m right there with ya Kal. As I prepare myself for the results that the behaviorist will read from the Functional Behavioral Assessment currently being done on Andrew, I know that no matter what she tells me, what she believes to be “triggering the behaviors”, there is so much more that she does not know. I have learned so much from moments like you describe, looking into his eyes, being right there with him. I get exactly how you feel, be it grief, or just knowing that others may never see our kids how we do. We have to cling to those moments though, I think. Thanks for reminding me to do so!

  • I’m SO with you on this one. I seem to be mourning all over again the last few days. Peaks and valleys..and I’ve been in a valley. What mysterious, wonderful children we have…and that’s what keeps us going! 🙂

  • You write so beautifully! You know the reports are useless. Our kids are not even in the same event as their typical peers. The only measure of distance, is to see how far we have come.

    Or to simply look in their eyes, and see that there is not a race at all.

  • I love this post. It captures so much of what it is like to parent our boys. I hate the tests and reports because they try to fit our kids into shapes that don’t suit them. And Magnificent? Holy Hell, YES!!

  • Oh, boy, I don’t even know what to say. We have our three year re-evals coming up, and it’ll be similar. But I know there’s so much more to them than those approximate age levels. So many beautiful moments and heart-wrenchingly wonderful interactions. I guess the evaluations will always be a jolt, or maybe we’ll get tougher over time.

  • I hate reading the reports and try to avoid them after the initial perusal. No one sees my kids the way I do. Even when I have to report, it feels so clinical. John is not a set of numbers. He’s a CHILD. He will have good days and bad days. The growth you’ve described over the last few months is amazing. You seem to have more and more of those moments where you see more than testing can measure. And, to remind you of something you’ve said to me before, he’s still that same child that you held in your arms over 6 years ago — and you love him with all your heart. Don’t let the reports discourage you!!!!

  • Kim, this is utterly breathtaking. Having so recently been in the exact spot, reading our own damning report, I love how you capture the essence of your glorious boy.

    Keep capturing those moments until that cup of jewels is overflowing. Thank you so much for your beautiful perspective and your expressions of love.

  • These reports may define what level the boys should be at, but they cannot define the beautiful person they are or the secret of what amazing men they will become.

    Faith Always. That’s how I live my life with my two sons with autism. My sons might not fit in this world, but they will make it in their own way.

    Much Love!

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