How to Raise a Health Care Self-Advocate

by jphilo | Jun 26, 2017 | Advocacy, Different Dream, How-Tos, Special Needs Parenting

How to Raise a Health Care Self-Advocate

Once upon a time, my husband and I were our son’s sole health care advocates. For the first 4 years of his life, we faced numerous life and death decisions concerning surgeries, medical tests, and treatment. After those dramatic early years his health stabilized, and our decisions about his health care were more run-of-the-mill.

When he was 15, medical tests showed another major surgery was needed. When our son, who had grown into a strong-willed, intelligent adolescent heard the news, he made clear to us and the surgeons that he expected to be part of the decision-making process. At first my husband and I were taken back by his demand. And then we did the math.

In 3 short years, our son would turn 18, at which time he would be in charge of his own health. Therefore, we made everything regarding his upcoming surgery–the pre-op tests, doctor consultations, even life and death decisions–into a self-advocacy training exercise. Here’s what we learned about raising a health care self-advocate during that experience and as our son entered adulthood.

Write down your child’s medical history. You may remember what treatments (for physical, mental, and emotional ailments) your child received, but your child won’t. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. That medical history equips him to be a health care self-advocate.

To read the rest of this post, visit Key Ministry’s Special Needs Parenting blog.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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Special Needs Vacation Tips and Tricks

School’s out, summer’s here, and it’s time to make vacation plans. Guest blogger Trish Shaeffer is here with field tested tips and tricks for a special needs vacation everyone in the family will enjoy.

Special Needs Vacation Tips and Tricks

Everyday life with a special needs child is full of running around like a chicken with its head cut off, but summer vacation time can bring a whole new meaning to “multi-tasking.” To make vacation time planning a little easier, here are some special needs vacation tips and tricks I have used over the years. Feel free to use one, use them all or even add some of your own in the comment box below.

We usually travel by car which brings its own sense of adventure. It’s good to note that during any car ride for longer than an hour or two, it’s good to pull over, take a break and have everyone stretch their legs. We have had some adventures at truck stops, gas stations, and rest stops along the way to our destination. But the most important tip is to always have fun. With that said, here we go!

Special Needs Vacation Beach Tips

Tired of carrying a heavy umbrella to the beach? You can buy clip-on umbrellas that work great for strollers and, yes, even wheelchairs. I found our umbrella at a beach store. No more heavy umbrella to carry to the beach and it’s adjustable.

Tired of getting sand all over your towel or blanket? Just bring along a fitted crib or bed sheet. Use coolers to hold up the corners for no more buried beach blanket. To remove sand from feet and hands, use baby powder and brush sand away.

Beach not handicapped accessible? Use a wagon or boogie board to pull your child to the water or around the beach. This will work depending on the size and balance of your child. Alex loves going for a ride to the water.

A few other beach tips.

Freeze water bottles or juice bottles before going to beach. By the time you get there, your drinks are just thawing out and cold to drink.
To keep medications cool, place them in a Ziploc or water tight bag, and tape it to the inside lid of an ice cooler. This works for epi pens too. Make sure to follow instructions for temperature storage for medication.

Special Needs Vacation Camping Tips

Need a child-size air mattress for half the cost? Use inflatable pool mats for the kids to sleep on while camping.

Have a wanderer on your hands? Have them wear bright colors so you can easily locate them. You can also hang small bells on tent zippers so you will know when the tent is being opened. Install a buddy system; have siblings pair up to keep each other safe. For extra safety, put a GPS tracker on your child. Many sync right to your cell phone and are small enough to fit on wrists or even shoes.

Too hot outside? Place wet wash cloths in Ziploc bags and place on ice in a cooler until needed. Place the cloths on the back of your child’s neck to cool them down on a hot day.

Want to avoid bathroom disasters? Make sure to get a beach or camping spot close to the bathrooms. Or bring a travel potty seat to make it easier for your child. We found one for our son that adapts nicely and has handles for him to balance.

A few other camping tips.

Get a campsite with electrical outlets for any equipment you bring along such as a nebulizer or feeding pump.
Always have a first aid kit when traveling and extra blankets. Also bring any chargers or car chargers you need.
Nap mats and yoga mats work great if you are out at the campsite and you child needs some tummy time.
Bring a spray bottle with water and mint mixture. Spray on your child to keep them cool and to keep the bugs away.
Test tick guards on small site to check a reaction. Always check with your child’s healthcare provider before using natural remedies and essential oils. Also ask what percentage of DEET should be in your child’s bug spray.
Bring noise-cancelling head phones for loud attractions or hand dryers in the bathroom. If you child is like mine, the headphones are a must against the wicked hand dryer.

Last but least, just in case you forgot….have fun with your family on your special needs vacation adventures!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Trish Shaeffer mom of 3 active boys, a 9-year-old and 5-year-old twins who were born 2 months early and have special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Shaeffer.