Houston, we have a (sensory) problem…

Madeline has a sensory integration disorder affecting her oral, tactile and vestibular systems. When I pay attention to her development, I can see clearly that it emerged during her infancy. She loved to be “thrown” backward while seated on my lap, leaving her hanging upside down. When I would not accommodate this need, she figured out how to maneuver herself to “throw and hang” her body on her own. When she began to crawl, she did so with vigor—so that she could reach objects that she could then climb. Maddy touched and mouthed everything—and still does. As she began to develop her voice, her protests and demands about the fit of her clothing and shoes took center stage and have since remained there. Currently, she has a strong need to feel input on her skin either very deeply or hardly at all. There is no in-between for her. Her clothing, socks and shoes must either be tourniquet-tight or so loose that they practically fall off her little self.

There are many times, though thankfully occurring less frequently now, when Maddy’s body feels so not-right to her that she dissolves into a full-blown meltdown. I have had to reach deeply for patience on many occasions, such as when we are in a hurry and she determines that her clothing is all wrong, or her shoes are not tied tight enough, or some other such thing. It’s sometimes difficult to see through the tantrum and understand that it comes from a very primitive place, triggered by conditions that she cannot control. I admit that I don’t always show her the patience that she deserves in these situations. We’ve reached out to occupational therapists who have helped us, and Maddy, to understand her needs, learn how to articulate them in-the-moment, and develop solutions to help her feel as good in her body as possible.

Because of Maddy’s tactile defensiveness, I have been quietly doubtful that insulin pumping would work for her. Before officially making my plea for the pump with her endocrinologist, I thought long and hard about the sensory challenges that each kind of pump would impose on her. Ultimately, her blood glucose control remained so poor that I had to put my concerns about her sensory needs on the shelf and accept that insulin pumping was something that she **had** to try. So, we chose the Animas Ping—Hazel.

In preparation for Hazel’s arrival, I searched high and low for pump-wear options that I thought would help Maddy adapt to wearing Hazel while meeting (or at least not exacerbating) those prickly sensory needs. Knowing that she would not likely tolerate the floppy hanging-ness of Hazel, I was delighted to find the Tummietote, figuring that it would provide her with the compression she craves while keeping everything “in.” I let her pick the fabrics and ordered two. When they arrived, Maddy wore them around for a while and deemed them to be acceptable. Phew!

We started the saline trial on August 4. Since then, it’s been one sensory challenge after another. To my amazement and relief, Maddy’s been fine with the infusion set and even with the tickle of the tubing hanging about her mid-section. She’s even been able to sleep with it nestled around her under the blankets without any fuss. However, Maddy has proclaimed that she cannot secure the Tummietote tightly enough around her waist–trust me, it is plenty tight enough–and therefore will not wear it. So here we are, struggling all day long with how to wear Hazel. One day, Maddy proclaimed that she would just hold Hazel all day in her hand; when I informed her that this arrangement would not really be practical for, say, recess time or journal writing, she threw me an ugly scowl and ran off to her room to cry.

I’ll give Maddy credit—as frustrated as she’s been, she’s been experimenting with various strategies: clipping it to her shirt neckline, to her waistband, to her pocket, to her underwear. None of these options has really worked for her, though she has managed to tolerate one or the other for periods of time in order to free up her hands for playing and swimming. I’ve decided that I’ve given her all the options I can think of, and now it’s her responsibility to determine what works best for her. I just hope she figures it out before school starts in t-minus 15 days…