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?
If you’ve followed the Lauren’s Hope blog for a while, you know that sometimes I write about my kids and their medical needs. Julia, 7, wears her Lauren’s Hope medical ID bracelet for her chocolate allergy and for the simple fact that I know she would completely freak out and forget our phone number in an emergency. Will, 9, wears his Lauren’s Hope medical ID bracelet because he has severe autism and is nonverbal. He’s had the same one for quite a while now, but last week, I had to order Will a new medical ID tag. The reason? Will just spent 11 days in the hospital and got a G-Tube.
Whether you're cheering or groaning over the end of the school year, it's here, and for parents of children with chronic health conditions or special needs (as, let's face it, with everything else for us), there's extra work to do. As the mom of a third grader with severe, nonverbal autism and the mom of a first grader with a chocolate allergy, I'm not just wrapping up the year and looking forward to summer vacation. I'm doing year-end IEP meetings and coordinating with summer camp personnel to make appropriate arrangements for their care all summer long. Don't get me wrong. We have a healthy dose of FUN planned for the summer, but making that happen ... well, it just takes a bit more planning when you're a special-needs parent.
In April 2011, I had been a Lauren’s Hope customer for a while already, and I was excited to share my family’s story on the LH blog. Jenna White interviewed me about my little family, my son’s autism, and why I believe so strongly that children with autism need to wear medical ID jewelry at all times.
The winter holidays are traditionally a time of peace, love, compassion, and good will. They're also a time for celebrations, special meals, family gatherings, excitement, travel, bright lights, voices raised in song, and so many other happy events and treats. When living with autism and related challenges, however, the holidays can be more stressful than anything else. With some good planning, however, the holidays will likely never be stress-free, but they can be more manageable. To that end, we've gatethered some parent-tested tips for making the holidays a bit smoother for families with autism other special needs.
Lately, we've talked a bit here on the Lauren's Hope blog about creating an allergy-friendly or chocolate-free Halloween: wearing medical alert jewelry while trick-or-treating, talking with teachers and caregivers, planning special food and non-food treats, and so on. For kids with food allergies, epilepsy, type one diabetes, special needs, and chronic health conditions, there are a lot of considerations this time of year, however, there are lots of things we can also do to keep everyone -- those with medical conditions and not -- safe this Halloween.