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 of raising a child with a neurological disorder.
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, twenty 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, but it’s so true) 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 makes normally simple things hard for our boy. He struggles with waiting. Changes in routine are upsetting; he doesn’t like to share certain toys and he’s not especially affectionate. Many times he’d rather play alone than with his siblings. Some days are just hard for him to deal with normal stuff.
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.
Since his diagnosis he has made significant progress. 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 in dealing 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 symptoms and limitations. 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 (possibly after jumping in his bed for a bit) and sings himself to sleep is a gift from God, fearfully and wonderfully created.
I praise you because I am fearfully and wonderfully made; your works are wonderful,
I know that full well. – Psalm 139:14 NIV
May we ever grow in compassion and joy for every life.
April is Autism Awareness month. The Autism Society has issued a challenge of sorts. Awareness has been mostly achieved, so they encourage friends to become partners in the movement toward acceptance and appreciation. During April I’ll share some ways that you can take that next step.
Please visit and “like” the Grace and Graffiti Facebook page here. And remember, it’s nice to share. Thanks!
Holy Saturday – that’s what it’s called. I had to do some research because I’m a Protestant and we don’t formally observe lent. Although I grew up Catholic, it has been a few decades since I observed holy days. And yet I woke on the Saturday before Easter thinking of the disciples and all of the followers of Christ. I pondered their state of mind and heart, realizing that they didn’t know that Sunday morning was coming, as we Christians proclaim. And then I got on with my day.
Honestly, each day had its moments. The beach trip? Traffic on the way home was horrific. Bumper to bumper with my navigator (who would much rather drive than ride) stressing more every mile. We were behind schedule the rest of the day due to the hour delay.
I write one post a week and the most difficult words to write are the four to six in the title. Last weekend, while enjoying a rare theme park date with my husband, the title came first.
The weather was beautiful – perfect for an outdoor event on a December evening in Central Florida. The sun was beginning to disappear and the sky was doing that thing where the horizon glows like the edge of the earth is on fire. Early, as is often the case at this stage of our lives, we pulled into the parking lot of the big First Baptist church. It was already beginning to fill up and we paused to greet friends as we walked from the car toward the center of town. People were already gathering, claiming a spot to view the festivities.
While I would have loved to just pitch a tent and bask in the glow of that all weekend, I had to move along. On Saturday I returned home after running from event to event the entire day to find that my dear hubby had unpacked the brand new Christmas tree, a floor model purchased on clearance last year after Christmas…cause that’s how I roll. There it stood, naked and with a strand of lights refusing to shine. I spent the next hour “fluffing” the branches, changing bulbs and trying to get that dark strand to shine to no avail. I fought the tree and the tree won. I bought a strand of lights. And as I write, I’m staring at that naked tree, and wondering when I will find time to decorate it. If I’m not careful, I’m already over the holidays. I am mad at the tree.
Hope comes over anxiety like a weighted blanket, soothing and reassuring as a hug. Yet hope seems lost in the news, in the doctor’s office waiting room, in the bank balance, in sorrow, in the demands of life.
Grace and Graffiti 