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What I've Learned About Supporting My Grandson With Autism

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I pen this as an observer; I claim no expertise. I’ve never parented a child with autism spectrum disorder (ASD). I don’t go to therapy appointments, I don’t visit the neurologist or the behavioral specialist and I don’t deal with the inevitable daily challenges that a child with a neurological disorder may face.

However, I love a child with ASD. He’s my grandson.

I also don’t have Type 1 diabetes. I don’t prick my finger eight or more times each day to test blood sugar. I don’t position a spring-loaded device on my belly and push the button to insert a cannula to deliver insulin — to literally keep me alive. I’ve never woken from a diabetic coma, surrounded by paramedics and feeling rotten. I’ve never been hospitalized with diabetic ketoacidosis.

But I love a man who does, who has. He’s my hubby.

It’s been a journey. So here I am, 20 years after his diagnosis, still clumsily discovering how to be an encourager and advocate while maintaining my primary role as wife and lover. I avoid being the “diabetes police,” but I’ve said the wrong thing and responded in the worst way when he most needed compassion.

I cannot express the highs and lows (no pun intended) of dealing with diabetes. You can do the same things day in and day out and get wildly different results. Just last Saturday, the excitement of finishing a 5K was clouded within minutes when his blood sugar reading was high. There is big potential damage to vital organs from exercising with high blood glucose. But there are so many factors outside of his control, and virtually none within mine. There were many emotions that surged, from aggravation to fear, but the truth is that you just deal with the present. Adjust, course-correct where possible, and keep living life with this person I love with all of my heart. I wouldn’t want it any other way.

ASD can make everyday things hard for our boy. He has difficulty with waiting. Changes in routine are upsetting; he doesn’t like to share certain toys and he doesn’t usually show affection. Many times he’d rather play alone than with his siblings. Some days are just hard.

He’s learning and developing skills to cope through therapy and the efforts of his parents. They are his champions.

Watching him run and play outside makes my heart soar. He’s brilliant, this little guy. He loves books — he will sit with anyone who is willing to read. When he is having a good day, he is delightful. His joy is pure and wild and unfiltered. I have high hopes for this boy, confident that he will reach his potential because he is surrounded by people committed to building a strong foundation.

So here I am, clumsily discovering how to be an encourager and advocate, while maintaining my role as his grandma and my daughter’s mom. I am not an expert on ASD, and I’ve said and done the wrong thing. I’ve responded with impatience when I should have been compassionate. I’ve already made some monumental blunders with him. Without a doubt, I’ve annoyed his parents by saying the wrong thing or reacting inappropriately to his behavior. I’ve misunderstood and been misunderstood because I didn’t know enough about his challenges. We’ve learned to extend grace to him and each other.

I don’t know what our sweet little grandson’s experience will be. I’ve read lots about autism, pretty much everything I can get my hands on; I listen and ask questions of his parents. And what I’ve learned is to expect the unexpected. The things that worked yesterday (or the last time that we were together) don’t always work today. Regression can occur and expectations have to be adjusted. But at the end of every day, the little boy who lies down and sings himself to sleep is, I believe, a gift from God, fearfully and wonderfully created.

May we ever grow in compassion and joy for every life.

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Originally published: April 19, 2016
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