T1D Sensory Squad

Welcome to T1D Sensory Squad, a nurse and mom’s perspective on navigating her toddler’s Type 1 Diabetes, Autism Spectrum Disorder and Sensory Seeking behaviors with the associated challenges and triumphs of each. This blog was created to empower newly diagnosed type 1, autism and sensory seeking families that despite the challenges, teach them that they CAN lead a happy, healthy & fun life while confidently managing their toddler’s diabetic & sensory needs.

Hi, I’m Dana. I’m a mom to a 4 year old son, Francesco, who is a Type 1 Diabetic, Sensory Seeker with a recent Autism Spectrum Disorder diagnosis. As his mom, I struggled firsthand with the challenges of navigating both Diabetes and Sensory Processing Disorder, and now ASD, especially trying to navigate them all together. I felt alone, overwhelmed, confused, and like I would never confidently lead a happy, healthy life for my son or myself without fear or worry about his diabetes or sensory needs preventing us from living a typical, every day life. Through social media & the internet, I found a community & support system that made me feel comforted and seen, and most importantly gave me guidance and confidence to effectively manage my son’s care.

When life gives you lemons.. make lemonade, or something like that?

Our story starts soon after my son turned two. Francesco, or Cesco, as we like to call him, was a covid baby born June 2020 and never attended day care. At two years old, we thought it was time he enter a program with other children, and enrolled him in a Mother’s Day Out program to learn and play with peers. By November, I was approached by his teacher with concerns for a sensory processing disorder. The process was extremely overwhelming, difficult and confusing. We started Early Intervention services for “sensory seeking” behaviors which included a Special Instructor and Occupational Therapy. At three years old, Cesco, transitioned from Early Intervention to the 3+ program, which again, was not a smooth transition. Our world then turned upside down two months later in August 2023, when he was diagnosed with Type 1 Diabetes. We learned through EI, Early Intervention, Cesco’s needs were more socially geared, so we pushed to get him right into PreK3, 4 weeks later. More challenges, learning, emotional roller coasters as we dealt with his existing sensory needs, exacerbated by his VERY new Type 1 Diabetes, and the role the two played together, which was extremely difficult to get each member of his team to understand. Our local intermediate unit supported Cesco in the classroom, with myself present as well supporting his Type 1 Diabetes needs. It was one of the most difficult and stressful events we’ve gone through, and ultimately we made the difficult decision to remove him from preschool. It turned out to be the best option for him and we’re so happy we did now looking back.

Since then, we’ve been trying to navigate, or “survive”, our new normal and tackle each obstacle and challenge presented by each which has not come easy. Throughout the process, we decided to see a Developmental Pediatrian to evaluate Cesco’s behavioral concerns further. In April 2024, we received an Autism Spectrum Disorder diagnosis. This world is so new to us, and we have so much to learn. As a parent you do everything you can to help your child, and after a tumultuous year advocating for who my son is and what he is capable of, starting preschool 1 month after his diabetes diagnosis, I think our path could have looked different if I made the decision to hold him from school this year and soley focus on his diabetes. I, even as a nurse, had no idea how much it would consume our world and be our new every day life. I was optimistic and motivated to focus on my son’s social needs instead of focus on his health concerns first. Our first round of testing at the Developmental Pediatrician, he did not score on the Autism scale. They recommended we do another round of testing because despite his score, they could tell he had mild characteristics that could be supported better with an Autism diagnosis. We did the next round of testing, which proved mild characteristics of an Autism Spectrum Diagnosis and impulsivity which they’re concerned for possibly ADD/ADHD in the future when he’s old enough to test. These last few weeks, I have truly been lost and confused as what this means, and worried about his future and the unknown. What I have learned so far, is that despite this diagnosis, it changes nothing about my son. He is still the same silly, funny, smart, sweet and loving Cesco. Everything we have worked on this year, works directly towards supporting Cesco and his needs. We’ve worked on how to support him and he’s grown and come so far from September and I couldn’t be happier.

I can’t change our path now, but attending his first year of preschool, 1 month after a type 1 diabetes diagnosis, proved to be extremely traumatic for me and extremely stressful for Cesco. Our time at preschool was filled with advocating that Cesco’s diabetes is directly correlated to his behavior, which was very difficult to prove to the educational staff supporting him. The amount of pressure put on Cesco to perform as any other student caused him extreme stress. He was 3 years old, not knowing what diabetes is or why it’s making him feel different, and why he had to get 6 shots per day. I really wish I knew what I know now, to have not pushed so hard for preschool to work. He loved going and playing with peers, despite the challenges and stress which was my motivation for advocating for him to attend. Looking back, this year took away his innocence, and time of just being a toddler which is something that truly hurts as a parent. This year was a learning curve for so many reasons, and for me, included grieving what I though Cesco’s future would look like. No parent wants any challenges for their child, and no one expects their path will look different than an average normal life. I’ve learned that this is not a linear path, there will be ups and downs, and that is what this new normal will look like. My goal is to give myself grace and patience as I navigate our new normal, and to find the good, happiness and peace in the chaos.

Although we are less than one year into our T1D diagnosis and ASD, thus far we have learned and found support through so many amazing resources and it’s our goal to share, support, encourage and spread awareness to others experiencing similar challenges to know they are not alone and they can face their new normal with confidence and happiness.

T1D Sensory Squad is a community for newly diagnosed T1D & ASD families experiencing similar challenges to come together for support, guidance, knowledge & empowerment to feel less alone and overwhelmed navigating their new normal. Together we can learn, unite, encourage and spread awareness while finding confidence and happiness through the process.

If you’re a newly diagnosed family in a similar season of life, share your own experiences or challenges related to Type 1 Diabetes and ASD in the comments below! Do you have specific concerns you’re experiencing right now? Let me know 🙂 

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T1D Sensory Squad does not give medical advice and you should always consult your doctor.

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