The following narrative blends stories from our real Abram’s Bed families to fictionally capture the trials and successes we experience as special needs families. None of the names or situations is meant to resemble a specific reality, but the universal difficulties are intended to enlighten and endear.
People tend to “feel sorry” for families with special needs. I’m guessing that comes from some sort of belief they’ve made up for themselves in their own mind. A belief that was made without any real knowledge or experience. Unexperienced people tend to focus on the negative aspects–the extra work and struggle that is part of everyday life for families like ours.
Having a “special needs sibling” has its struggles, sure—just like any family does. My family can’t enjoy certain activities due to limitations specific to Jacob’s situation.
What activities we can enjoy take an extra amount of planning and consideration to pull off. And when we finally are able to enjoy a “normal activity” as a family, we still can’t escape the looks and murmurs constantly coming from society.
And by living this way my entire life, here’s what I have learned:
- These circumstances can make you wish that your life was easier—and that is OK.
- These circumstances may make you feel like you HATE disabilities at times—and that is OK.
- And these circumstances can make you feel jealous and resentful at times, which can also create an added layer of guilt—and that is OK.
Humans were never meant to be defined by a diagnosis. Your brother or sister is a person with a diagnosis and it is OK to want to be defined by something other than your relationship to your sibling with special needs; however, it is important to understand that because of your life experiences, you have a unique outlook on what it really means to live with a sibling that has special needs.
I encourage you to let your unique outlook empower you.
We know that we are already “spokesperson” or “translator” for our brothers and sisters, so it’s also our duty to help others understand the positives of living through these challenges that we live with as well.
- When you have a family member with special needs, all of a sudden, what other people call “recreation” is actually considered “therapy” in our family.
- People with special needs generally have no concept of demeaning others, and are the source of some of the most genuine love this world knows.
- Wherever we go and whatever we do, we are always remembered, and are sometimes given the “celebrity treatment.”
Living with a brother or sister that has special needs can tough, but there are also many gifts that come with living through these circumstances as well. We can change the way the world sees families with special needs, we only need to change our focus.