Every day, I answer customer calls here at Lauren’s Hope. I love talking with our customers and hearing their stories, learning about their conditions, and helping them find the products that work best for them and their loved ones. Every once in a while, however, I get a very special call. I get a call from a mom just like me.
Last Halloween was my daughter’s first big holiday since being diagnosed with a chocolate allergy. I was more than a little nervous about her school parties, expecting a call from the nurse at any moment. Thankfully, she navigated the events (with the help of her terrific teacher) without incident, and our trick-or-treating went off without a hitch as well.
Much of this is due to the fact that Julia, then 6, was already well aware of her allergy and comfortable self-advocating. She always asks whether foods have chocolate in them and takes the extra step to explain that it’s an important question, as she is allergic. Of course, that’s all well and good when a child self-advocates this way. But many children do not or cannot, which can make Halloween more than a little intimidating for their parents.
When your child has health concerns, special needs, learning challenges, or any other condition or diagnosis that requires special accommodations, assistance, or awareness at school, there’s paperwork involved. And meetings. And then typically more paperwork and more meetings. But when you’re new to the diagnosis, sometimes, you simply don’t even know what to ask for. Here’s a little help getting started, from a mom who’s been there.
In Part 1 and Part 2 of Adventures in Tube Feeding: G-Tubes & Autism, I shared my family’s recent medical emergency. My 9-year-old son, Will, who has severe autism and is nonverbal, went on a hunger strike, and as a result, ended up in the hospital for nearly two weeks, ultimately getting a feeding tube called a microvasive G-Tube. Now, while he is undergoing extensive feeding aversion therapy, Will can get all the nutrients he needs through what is essentially an access port to his stomach.
Recently, I shared the news that my nine-year-old son just spent 11 days in the hospital due to severe feeding aversion issues that resulted in life-threateningly low potassium levels. So, what is a feeding aversion?