Diabetes and autism, what happens when you're the caregiver?

I find I often wrestle with feeling unseen living with type 1 diabetes. Then I had an encounter a few days ago with someone for whom I can't imagine what this disease is like.

I took my weekly walk to Trader Joe and as life sometimes serves up unexpected connections I found the woman behind the cash register has a son with type 1 diabetes. She told me that because she read the logo on the jacket I was wearing. I won that jacket 20 years ago doing a JDRF Walk for the Cure.

Her son got diabetes at three and is now fifteen. I felt our immediate bond as she packed my greek yogurt both smiling and looking apprehensive. She told me his A1C,  and her concerns. "How will he ever be able to take care of himself? I worry," she said. I was surprised, why wouldn't he be able to take care of himself? We find our way.

As I swiped my credit card she told me she's heard there should be an artificial pancreas in his lifetime and this would really help. I said with some confidence that I thought probably within ten years. Then she said, "but still I don't know how if he'll be able to take care of himself." As the eggs went into my bag, I heard her say "autism." I had missed it earlier. Yes, her son has type 1 diabetes and autism. My heart heaved for a moment.

There are many times I feel invisible with this disease. No one notices all the work I put in behind the scenes to stay well. Certainly no one knows as I walk along the street, or in Trader Joe that morning, that I have diabetes. The mom now ringing up my sale didn't know until my jacket started a conversation. And I didn't know about her son.

Before lifting my bag of groceries, I took her hands in mine. She said, "I hope he will be OK." I thought what can I say? I said, "I hope so too" and over a shared smile, turned and walked back into my life.

I relayed this story to my husband an hour later over lunch. I said, she must feel the same as me, unseen. How many people know her son has type 1 diabetes and autism? How many people know how hard she works to help him and her worries for his future? I wonder do her co-workers know? I can't imagine. 

In telling my husband this story he said, "Write it." And so I have. This encounter also reminds me that no matter how hard a patch we're going through, we are not alone. And others' patches may be even harder. Whether patient, or caregiver, or just someone standing next to you in Trader Joe or walking down the street, the biggest gift we can extend is kindness.

Views: 134

Tags: autism, diabetes

Comment by Marie B on April 22, 2012 at 9:19am

We have a Group here for those dealing with both

http://www.tudiabetes.org/group/autisticdiabetics

Comment by Trudy on April 22, 2012 at 1:19pm

Hi Riva. This blog hurts. Thanks for reminding us that life could be yet more difficult. We are so lucky, those of us who can deal with diabetes on our own, and with other conditions as well.

Comment by Riva Greenberg on April 23, 2012 at 7:00am

that's great to know Marie. If I see the woman again, I'll let her know

Comment by Jonah on February 1, 2013 at 1:19pm

The average person with Down Syndrome and type 1 diabetes has a lower A1c than the average person without Down Syndrome who has type 1 diabetes.

I am autistic and type 1 and I think they go together just fine.

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