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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.
Halloween is a fun time, filled with treats and crafts and excitement. For adults and children with chronic conditions such as food allergies, type one diabetes, autism, or epilepsy, however, Halloween is sometimes a little scary, and not in the fun way. Protecting our kids and ourselves from the very real dangers of this fun season can be a real challenge, which means planning ahead is essential.
Autism impacts one in every 88 children in the United States, and my son is that one. I’m Tara Cohen, and I’m the voice behind many of the Lauren’s Hope blog articles that (I hope!) you enjoy regularly. Last April, here on the Lauren’s Hope blog, I shared a little glimpse into life as a special-needs parent in honor of Autism Awareness Month. The year before, Lauren’s Hope did an awareness piece on my son, Will, before I joined the Lauren’s Hope team. This year, as the prevalence of autism grows ever more alarming than ever before, I’d like to share some early warning signs to help parents know what to look for in children under age two.
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