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Navigate Life Texas: Resources for kids with disabilities and special needs
Navigate Life Texas: Resources for kids with disabilities and special needs
June 11, 2019 | By: Marty Barnes
Categories: Diagnosis & Health Care
When my husband and I first brought our daughter Casey home from the Neonatal Intensive Care Unit (NICU) we did not have any help lined up at all. We were terrified. Luckily, one of the NICU nurses reached out to us and offered to come by once or twice a month to take care of Casey so that we could go out to a movie or dinner. She was amazing. For nearly 2 years, this was all we knew for home health.
After our family moved back to Texas, we had to get a day nurse to help. We started with a single 12-hour shift each week. Our first nurse was wonderful. She loved Casey and she was on top of everything. When she went back to school to get her masters and had to cut her hours back, we were devastated.
Our initial home health experiences were great, so we added more shifts. When Casey passed away in 2016, we had over 130 hours a week that we could use. Sadly, we never filled all of our hours, but we tried.
We had some nurses who stayed with us for years. Others who were only with us for a few months. For the most part, we had fantastic nurses who made our life so much better. They really did care about our sweet girl. Every time we had a shift to fill, however, night or day coverage, we could go through a handful of nightmare nurses.
We always started with a meet and greet. I was able to filter out a lot of the nurses who wouldn’t be the right fit for our family before we even let them touch Casey. There were a few that got past my initial screening that were awful! I won’t go into details on all of the stories, but trust me, I have a ton. All of us who rely on home health have many of these stories.
I want to point out that while the horror stories are the ones that get told, there are far more good nurses than there are disappointing ones for our children. A great nurse for my child may be a horrible nurse for yours. There is no “one size fits all” standard for nurses. If you hear stories like these or have your own and are worried about having nurses to help with your child, I promise that there are really good ones out there.
Helpful Information can be found in this section on Hiring Caregivers for Children with Disabilities.
The last time my son was in the hospital, it was a children’s hospital. But recently, after he fell out of bed and broke his leg, he was taken to an adult hospital and needed surgery. I’m forever grateful to the doctors and nurses caring for him through it all.
Categories: Diagnosis & Health Care, Transition to Adulthood
Brushing your child’s teeth from an early age can keep them healthy and their teeth strong. Children with disabilities often need extra help with oral hygiene.
Categories: Diagnosis & Health Care
Healthcare decisions should be based on the needs of patients, not their age. Pediatric patients are treated based on their size. The right dose of medicine is determined using their height and weight. Equipment is sized for their safety and comfort.
Categories: Diagnosis & Health Care