The ins and outs of the largest piece of medical equipment you will ever buy
By: Cesar Rivera
After Part 1 of my masterpiece (just kidding!) on WAVs last month, my wife pointed out that I assumed everyone is on the same page… I presumed that everyone knows that they need one. So, for those who think they don’t need a WAV, I will now endeavor to lay out the reasons why they may be helpful or even necessary. (Remember that I will abbreviate Wheelchair Accessible Vehicle as WAV for the rest of this post)
Part 2 – Why??
In my experience, there are three main reasons to consider a WAV:
- Health and Safety
- Quality of Life
For those of you who are already convinced, this post will hopefully reiterate many points you have already internalized, and perhaps invoke thought in a few additional areas. However, my real target here is those of you who are still on the fence.
Health and Safety
Rett Syndrome presents many challenges to everyday life. Simple activities like bathing, feeding, medications, and transportation all become difficult as the years progress and the size and weight of your loved one increases. As a caregiver, you are aging as well and may lose some of your ability to meet the physical demands of daily tasks.
Your daughter is going to need transportation that will allow her safety and comfort during transport. In a WAV, you are significantly reducing the chances of injury. Grace does not help us at all, and she is approaching 80 lbs. Combine that with brittle bones (common in Rett Syndrome) and potential scoliosis, and you have the potential for mishaps. You may be lucky the first thousand times you lift your daughter to place her in the car seat, but it only takes one slip to have an accident. Rain, mud, fatigue, or any number of situations could result in injury or hospitalization.
Many of our kids also require additional medical equipment throughout the day, both at home and away. Most WAVs have additional storage and medically-specific modifications that allow you to bring everything she needs when you leave the house. Power inverters, DVD systems, and a place to change her are all things that contribute to health and safety.
As a caregiver, you need to be attentive to your health as well. Reducing the number of lifts will help prevent wear and tear on your joints and body over time. Remember, you are running a marathon; slow and steady wins the race. Don’t evaluate your needs on what you can do now… think to the future and reduce stress now.
Quality of Life
A WAV that allows you to easily leave the house will make both you and your daughter more mobile and improve the quality of her life. Have you ever thought to yourself that you would like to go out and eat, or attend a local event, but declined because the hardship of loading/unloading was too much (for something so “trivial”)?
You would be amazed how many times the word “freedom” is used by people to describe life with a WAV. Transportation becomes a non-issue and inevitably leads to more opportunities outside the home. Doctor appointments, restaurants, events, and daily errands become easier, and everyone will enjoy more opportunities to interact with the outside world. We are social creatures and interaction is necessary to counteract feelings of isolation.
The bottom line: When something is easier, you tend to do it more often, including getting out of the house.
I almost combined this with Quality of Life but decided that it really needs its own section. By increasing the ability to move about your community, you will naturally be more inclusive of your daughter in your friends’ and family’s daily lives. This is something that we all want for our children. Not only will it help to spread awareness of Rett Syndrome in your community, but it will also help siblings and family members to connect. Family support within your community is critical and often necessary for those times when life gets especially challenging.
That wraps up installment #2! Stay tuned for next month when we address the types of WAVs and their individual pros and cons.