Going Blue: Mom and Daughter Face Autism and Type 1 Together
Every November, many of us in the diabetes community post our stories and wear blue to support National Diabetes Awareness month. But this month, I “Go Blue” for a different reason — I support Autism Awareness in April for my 7-year-old daughter Mia who lives with Autism Spectrum Disorder (ASD).
Parenting a child with different needs than others while facing similar challenges with type 1 diabetes (T1D) myself is incredibly difficult. It requires you to be nimble, patient and proactive, all things that after 32 years with T1D I feel I have mastered. This doesn’t make Autism any less difficult emotionally to handle, however, you must do so without losing sight of your own health as well. I had to put my own oxygen mask on, so to speak, before I helped Mia with hers.
On September 22, 2011, I became a parent to beautiful baby girl. She was six weeks early due to severe preeclampsia and HELLP syndrome. From the start, I noticed she was different than the other kids in the NICU. She cried much more than the others and was floppy like a rag doll. While taking her “going home” photo, I couldn’t get her to look at me. Come to think of it, she hadn’t looked right at me yet. I snapped several photos and chose one where she isn’t looking at me or the camera, but staring out the corner of her eye, a look I now know very well. I couldn’t get a photo of her looking at the camera.
By her first-week check-up, Mia continued to show signs of this rag doll-like low muscle tone (sometimes referred to as Floppy Infant Syndrome). Her head appeared to be tilted and she could not look forward or track objects well. By the second-week check-up, her muscle tone had not improved, and we were handed a prescription for physical therapy 3-5 times a week. Without it, Mia would certainly not hit her milestones. We did stretches with our tiny baby several times a day to try to strengthen Mia’s neck muscles. Tummy time felt like I was torturing her, but if I didn’t do it, I wasn’t doing what was best for Mia.
She had also developed a severe case of brachycephaly, or a flattening of the head, from the lack of her movement, and her speech was delayed as well. I did a lot of reading and research to educate myself. Everything I learned was pointing towards an Autism diagnosis, even though she was too young to be officially diagnosed before age 3. Instead, Mia was given a diagnosis of “Global Developmental Delay” so the testing and therapy she needed could be covered by insurance.
Tired but undaunted, I took on the therapy and classes with other parents who were facing similar challenges with their own young children. Over the course of her first few years of life, we worked with Mia to improve her physical strength and help her development along. With the right therapists and the most amazing parents who taught me how to do everything at home too, Mia excelled, and closed gaps on her Global Developmental Delay as we neared her third birthday and her evaluation. The Autism Spectrum Disorder (ASD) diagnosis was looming and would soon be official.
Diabetes Takes a Back Seat During Mia’s First Year
By the time you have your child as a type 1 diabetic, you are very used to perfection in terms of hitting your target. I was a 5.4 HbA1c when she was born. In the very early days, my incredible endocrinologist knew of the extra stress I had on me, driving with a screaming newborn to appointments as well as to my own appointments. He reminded me that I didn’t have to hit those targets anymore and to be prepared to relax a little and give in to the rollercoaster my hormones and blood sugars were taking.
Taking his advice, I was surprised my blood sugars weren’t dropping and bottoming out like I was told to expect. Mine ran high, likely from the stress of being a new mom and one to a child who had a busy schedule and cried all day. My blood sugars started to slip out of my hands, but all that mattered to me was that I was doing perfect for Mia.
I left my office job and an identity I leaned on heavily, as many of us do, to get through that first year with my first child. My mother did the same thing when I was diagnosed with T1D. She took “Mother’s Hours” at a local pharmacy and was always home for me to get off the bus and a quick ride to pick me up. I was dedicated to helping my own daughter “get better,” something my own type 1 taught me over the years.
Facing ASD and T1D
Mia and I were a great team for about 18 months after her diagnosis. We found consistency in our routine, which benefitted us both, and my blood sugars leveled out. Thank goodness we had some solid one-on-one time during these early years in therapy. It enabled us to weather those first few years of her life and after diagnosis. Routine, our common strategy for managing our health challenges, saved us both.
Mia responds to intervention very well, and it’s incredible to watch her learn and master. Like watching your child give themselves a shot or doing their insulin pump site change for the first time, mastering diabetes and owning it is just as a huge of an accomplishment as it is with ASD.
Like many of you probably have as a type 1 diabetic or as the parent of one, I read a lot before and after Mia’s diagnosis. I carried out best practices until I found a pillar we could both relate to and build upon, and that was consistency and routine. I gained so much in this mastery of the perfectly executed dance Mia and I had to do every day to manage our conditions. Having diabetes requires one to constantly dodge the unexpected, adjust and live proudly with confidence to overcome any obstacle. Mia’s Autism also requires a similar mastery of her condition.
In these early childhood years after her diagnosis but before Mia went off to school, I felt it was going to be “all right.” I started to get a grip on my own health as things with both of us were clicking. We got out more, taking longer car rides and doing small-scale activities, for the first time in her life. “I got this,” I thought, knowing of course things would always be hard. But we were going to be okay…the hardest had to be behind us.
Written by Natasha Buconjic Wallace