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This is a recounting of a true life event and subsequent episode many months later. My son is ventilator dependent. He also relies on five other machines daily to keep him alive. So car travel looks more like an ambulance ride. And I used to be able to handle it as the lone adult in the car, until the day we left the hospital about two years ago, and it was a horrifying, near death experience. My son does not "transition" well anymore. Meaning moving him from one place to another, especially into the wheelchair or carseat. It's one of the main reasons we moved to home nursing exclusively almost five years ago. Trips in the car meant multiple stops...
Picture it. You are casually strolling the aisles of the grocery store racking your brain for that one item you forgot to write down while wrangling your kids to stay nearby when you turn the corner and spot it. This unfamiliar sight is quietly sitting next to a little boy who is holding his mom's hand while she peruses the frozen vegetables. This unicorn of grocery shoppers has big brown eyes, white fluffy hair, and is basically just begging you to come pet him. This sweet fuzzy sight is a service dog for a child with autism. Service dogs are becoming more and more popular for people with disabilities, and it has become blatantly obvious to me that the majority of the population has...

Life with Aides

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You read that right. I have aides. Rather, my son has aides (also known as direct support workers - DSWs.) He has four regular nurses and two regular CNAs who care for him. Daily there are two strangers (minimum) in our home to care for our terminally ill, medically-fragile, technology-dependent son. Weekly we also have teachers, therapists, program coordinators, waiver supervisors, nursing supervisors and more enter our home. {Somebody send us a Roomba!!} I am asked frequently what it's like having so many strangers in our home. Well, it's weird getting used to at first. But when you weigh the alternative which is not having the assistance our son needs to survive -- you learn to deal with this sacrifice....

Unforeseen Gratitude

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I remember it like it was yesterday - the call from the pediatrician informing me that she had referred us to Children's Hospital in New Orleans. When Salem was 9 months old, I noticed that she was sitting strangely. It wasn't a normal slouch, but was more like she was almost sitting on her lower back instead of her bottom. I didn't know if I was overreacting or if it was something worth looking into. We brought it up at her next appointment, and the doctor scheduled X-rays to see for sure. That's when I received the call that it was more severe and we needed to see a specialist in New Orleans. In a moment, something that I had never even...
Let's get real for a second about Handicapped parking spaces. People in wheelchairs (or their caregivers) need several minutes at a time to unload from a vehicle. People with invisible (to you) illnesses may be able to walk without a cane, walker or motorized scooter, but they will pay later for expending all their energy to keep some kind of normalcy in their life. When someone you know, let's call them "a friend," parks in these spaces or blocks them, your friend is preventing someone who needs the space from gaining access. There have been times I have had my son in the car and we needed to park somewhere, and we have had to wait/circle 30 minutes or more until a...
Hey Mommas, I'm just like you. I'm taking care of the kiddos, making sure they get everything they need and tending to my husband. Often that leaves very little time for Momma to take care of herself. Honestly, I get it! Yoga was the last thing I thought I could squeeze in to do for myself. I have a full-time job, a part-time job doing business and digital media consulting, and another part- time job managing the nursing schedule for my son's care and running his personal care attendant agency. There is no time left for ME. But amidst the recent flood relief efforts and the taking care of everyone else, a sweet and wise friend reminded me that I...
To the Pregnant Woman worried about Zika, Days ago I read your comment under a news story on the Zika virus. You wrote, "I can't think of anything worse than having a child born with a horrible brain defect." Your comment was like a dagger to my heart. I can see you now sitting there in the doctor's office waiting for your monthly checkup while reading and commenting on that story. I can see the pregnancy glow you emit, but behind that glow I can see a fear. A fear that women before our generation never had to experience. A fear of the Zika virus--a virus spread by infected mosquitoes throughout South America and southern parts of the USA. A virus that can be spread from a pregnant woman to her fetus...

Please Handle Him with Care

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Dear IEP Team: Please Handle Him with Care. We are finally "restarting" the new school year after the 1000-year flood. The knot in my stomach grows tighter. You see this year you will be blessed by a variety of students and my kiddo is one of them. Students from various backgrounds will walk or roll through your door with an anxious face and an excited heart. These children have exceptional needs and an Individualized Education Plan (IEP). Many parents worry over sending their child to school, however my worry is a bit different. My precious child that I am placing into your hands for eight hours has a communication deficit and cannot tell me what his day consisted of. He cannot...
Disclosure :: May is Better Speech and Hearing Month, and our sponsors, The Emerge Center, want to make sure the kids, moms, dads, and grandparents of Baton Rouge have healthy hearing this summer!  Summer, Swim Plugs and Healthy Hearing A Louisiana summer doesn’t go by without a LOT of time at the pool. And what comes along with a ton of pool time? You guessed it – swimmer’s ear and ear infections. Before diving into the season, now is the best time to get custom swim plugs for your little ones. Why bother with swim plugs? Well, if your child is prone to ear infections or Swimmer’s Ear, swim plugs will keep your kiddo from having to deal with those issues! Also, any...

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