Getting Out of the Hole
I recently wrote an article for Exceptional Parent magazine about making connections when your child has a rare disorder. Over the years, I’ve found that you can truly rely on other special needs parents for advice, friendship and support.
Recently, there was a meme circulating around the special needs community about what happens when a special needs parent falls in a hole. The theme of the meme is that when you have a child with special needs, the only person who you can truly count on to help you is another special needs parent. The meme implies that others, such as family, doctors, bosses and charities, don’t truly understand and aren’t very helpful.
The first time I read it, I found myself nodding in agreement. But, after reading it again and thinking about it for a while, I wasn’t so sure how I felt about it. While I agree 100% that there are times that only another parent who’s shared similar experiences can provide the support you need, I’ve also learned that it’s important to be able to rely on others in your life as well.
I know that the point of a meme is to provide some humor because it strikes a chord of truth with us, and many of us have run into unnecessary roadblocks because others are out of touch with the reality of raising a child with special needs. But, I would argue that when we believe that only other special needs parents can really help us get out of the hole, we may inadvertently alienate the very people who are a critical part of our support network.
When it comes to running into bureaucratic brick walls, I completely understand how frustrating it can be to try and break through over and over unsuccessfully. But, I’ve also seen friends, family and complete strangers go above and beyond to support me and my family.
For example, we’ve had many doctors on Julia’s team who have helped us navigate extremely complex medical challenges. They’ve listened to our concerns, expressed empathy, and offered options that we never would have uncovered on our own. They’ve helped us get out of the hole, and together we’ve made attempts to fill the hole so we don’t keep falling back into it.
Our family was also fortunate to be able to take a trip to Disney World through the Make-a-Wish Foundation. The Make-a-Wish organization, the Give Kids the World Village and scores of volunteers gave their time, talent and resources to provide us with a week-long vacation that made us feel like VIPs at every opportunity. For that amazing week, we were far, far away from the hole.
I recently shared the story of how my dad showed up for me, day after day, when Julia was a baby. My family has continued to support our family, providing love and helping hands when we’ve fallen back into the hole.
Our county case manager has worked hard to help us obtain equipment that makes day-to-day life more meaningful for Julia and easier for her caregivers, so we can climb out of the hole more quickly.
Often, the encounters we have with people who lack empathy or understanding are what stand out to us. But, I challenge you to think about all of the amazing support you and your family have gotten from your family, medical professionals, charities, government agencies and more.
Don’t let the day-to-day frustrations completely overshadow the people in your life who are providing the love, services, funding, resources and expertise that improve the quality of life for our kids and help to make our lives easier.
Because, when it comes to getting out of the hole, we need all of the help we can get.
