My seven-year-old daughter, Madeline, has Type 1 Diabetes, an autoimmune disorder that has destroyed her pancreas’ ability to produce insulin. She also has Sensory Processing Disorder, which mainly affects her ability to register and respond to vestibular and tactile input. The marriage of these two conditions is nothing short of a horror show, a fact that is difficult for most people to comprehend.
The best tool available for managing T1D is an insulin pump, and Madeline began to use one about one year ago. It is a medical necessity and has made a significant positive impact on her quality of life in nearly every way but one. In relation to the use of the pump, Madeline’s tactile processing difficulties have worsened. Why? The insulin pump involves three pieces of equipment that essentially allow it to attach to her body, so insulin can be delivered every moment of every day. One piece inserts into her skin—usually on her hips or bum—by way of a thin tube called a cannula, and it is held in place using a strong adhesive. A long flexible tube bridges the cannula and insulin pump, tickling her skin constantly. The pump itself is about the size and weight of an old-school cell phone, and has to be “worn” somewhere on her clothing or body.
Now, when you consider the impact of Madeline’s sensitivity to the fit and feel of her clothing, you might begin to imagine the difficulties she faces in getting dressed every day. In particular, her galant reflex has not integrated properly, causing extra sensitivity in her—go figure—waist and hip areas. So, wearing her insulin pump is truly a nightmare for Madeline. Although she’s adapted well to the sticky infusion set and tickly tubing, the drag effect of the heavy insulin pump clipped to the waistband of her clothing is something she simply cannot tolerate. Because of her tactile sensitivity, she needs her clothing to fit her either very tightly or very loosely—nothing in between. The fit and feel of socks, underwear, pants, dresses and sleeves is a nagging irritant to Madeline. Socks rub her toes the wrong way, even the seamless ones. Pant legs are not tight enough. Sleeves tickle her wrists to the point of pain. The waistband of her clothes also has to hit her waist near her belly button, no lower, and the waistband has to be thick and snug, not thin and wimpy, so it can hold her pump well.
Oh, we’ve tried so many strategies I can’t even keep track of them anymore. She receives regular occupational therapy services to help (hopefully) integrate that reflex, build her tolerance and improve her coping skills for handling her discomfort. I’ve dropped a small fortune in search of brands and types of clothing that she can tolerate; it’s been quite frustrating to me to know what she needs but not be able to find it easily—or usually, at all. Dresses with tights underneath have been our savior, but in the warmer weather her undies are not strong enough to hold her pump well. We’ve tried various kinds of pump belts and pouches designed to hold a child’s insulin pump so that it does not need to be clipped to clothing. None of these has worked: they have been too tight, too lose or just plain old not right for her sensory system. The latest compression sportswear might seem like an option, but it’s difficult to find for young girls. As a result, Madeline’s wardrobe is quite limited, and frankly I could care less about whether her clothes match or keep her in the latest styles. She doesn’t care either: she just wants to feel good, to feel normal.
I’m fairly isolated as far as living with T1D goes; there are no local children or families dealing with this dreadful disease, and so the contacts we’ve made—as wonderful as they are and as grateful as I am—are scattered and exist primarily online. Even worse, I’ve encountered only one person whose child has T1D and SPD. When I try to explain the nasty impact of Madeline’s sensory struggles on her insulin pump usage to her medical team, I have gotten the distinct vibe that they believe that I indulge her preferences too much and that she can’t possibly need so many accommodations to use an insulin pump. Does anyone truly believe that any child would choose such a sensory nightmare? That any child wants to be so poorly regulated at the wrong rub of a waistband or sock? Madeline’s sensory difficulties are heartbreaking for me. The combination of her needs related to T1D and SPD makes her feel like a pariah.
As any parent with a child with any kind of special need knows, you keep searching, experimenting and consulting in the hope that solutions will be found to make your child’s life a little easier. That’s what we’ll keep doing, and I hope that you do as well.