From the moment that Ben entered our lives 25 years ago, we have always felt a tinge of fear. By far, it is the number one issue we deal with on a regular basis … along with just about every family we’ve met who have been impacted by a disability.
It is the most common obstacle that holds people back and prevents them from living the life they dream of living, disability or not.
Fear has this knack for never really going away, simmering just below the surface.
No matter how strong you think you are, fear will take you down. It has a way of surrounding you and waging war with your mind.
It will cloud your view of the world and control your thoughts and behaviour.
By its very nature, it is designed to paralyze, attacking your confidence, your competence, your self-worth, and your energy.
Some families have shared with us that their biggest fear is that they will fail their children in some way.
Somewhere along the line it...
We’ve hired a lot of caregivers over the years. I guess when you’re looking at a 25-year run, that’s pretty much how things go.
Some have stayed with us a long time. Some too long. And some haven’t lasted 6 months. Unfortunately, turnover is unavoidable despite best efforts mainly because caregiving is a tough job.
Looking back, I would say that each of Ben’s caregivers brought a slightly different set of skills to the role. They, also, portrayed different levels of confidence, and brought a different feel to the role.
Some have had a really strong work ethic. These are the keepers. They anticipate what needs to be done and just do it without being asked.
Some have brought a high level of positive energy that is contagious. These people can pick up anyone’s spirits.
Others have faked their way through it. They are good at looking good but they aren’t really engaged or interested in making a difference. They excel at doing the bare...
Whenever any one of us get sick, we rely on our body’s immune system to combat whatever virus or bacteria we have contracted. Sometimes we need an extra boost, like an antibiotic, an anti-viral, or a flu shot, to complement our immune system so we can get better more easily.
A person’s physical fitness level also plays a big role in how well he/she can fight off the infection. But I’m sure you already know that.
When we are faced with adversity, such as the sudden loss of our job or learning that our child has a disability or health issues, our immune system really can’t help us much. Our physical fitness level can keep us moving but it is our emotional strength and coping mechanisms that allow us to combat this adversity and “get better”.
Put another way, our “coping fitness” determines how much stress, anxiety, and emotional trauma we can handle and how well we will recover. If it’s in good shape, we can...
I admit, this is a strange title, but I wanted to get your attention.
It seems obvious that the reason you bring a caregiver into your life is to help with the care of your child. And that can take on many forms – physical care, personal care, or medical care.
No question, all of those are important tasks that need to be done every single day. And relieving you of these hands-on responsibilities, if only for part of the day, is one of the reasons you should definitely bring a caregiver into your life.
But the “care” part is only part of the equation … and the need. Life is way more than just “care”.
Here’s the thing. Your child is not his body (or her body). He HAS a body. He is not his personality. He HAS a personality. And, he is not his disability. He HAS a disability.
What he IS, is a life force who purpose and dreams need to be realized. We all are!
Maybe that sounds a bit over-the-top, even unrealistic. But consider this: the way we...
Tomorrow, I get to present to a large assembly of high school students – actually at the same high school that Ben attended. The topic is about how to build an inclusive world.
It’s part of the school’s “Saints in Action” programme which gives students the opportunity to serve their community in different ways and give back. It’s a great programme to help them develop more holistically.
I’m going to show the short film of Ben’s Story as a shining example of the power of an inclusive community. If you haven’t watched it yet, click here and prepare to be inspired :)
Following the film, I’ll be talking about 3 ways the students can help build an inclusive world.
The first is to change their worldview. That’s because how they see the world and the language they use will determine how they will live their lives. We all live in the language we speak.
Second way is to develop a belief system that every life is of equal value...
When I look back on some of the decisions we made concerning Ben’s caregivers, I have to shake my head and say, “Wow, were we ever stupid!”
With each decision, I was sure what we were doing would be the best for Ben and us. But the problem was that we were totally immersed in the grind of Ben's support, and all the stress and confusion that came along with it.
We were too close to each situation to really assess things objectively. Sometimes I wonder if we had asked for help earlier, would the outcome have been better.
The first, big, mistake we made was thinking we didn’t need much caregiving help at all. We were fairly young when Ben was young and believed we had the energy and drive to do all of it (or most of it) ourselves.
If I had to rely on someone else and give up that responsibility, it would be admitting defeat. That I would have somehow failed in my role as his dad.
It was really pride and a weakened self-confidence that got in my way. But...
Being a caregiver is one of the most important and honourable roles in the world. To be entrusted with the responsibility of supporting the care and development of a person who may be completely dependent or not have a voice should be cherished and respected.
But make no mistake. Being a caregiver is hard work. Whether it’s you, a family member or someone you hire, it doesn’t matter.
The role is often stressful, monotonous, physically and emotionally taxing, and any rewards are sometimes slow in coming.
In our experience of hiring caregivers for Ben, the three-year mark seems to be the time when the person needs a break – either some extended time off or a new set of responsibilities.
We try to be sensitive to burnout and making sure they are supported themselves so they can keep bringing their best every day.
This last point is the key. Ben (or your child) deserves to have the right person supporting him every day, someone with the right mindset and energy level....
I have to tell you a story.
It happened nearly 8 years ago but I still remember it well. It was a Thursday, about 7:45pm, when the phone rang. It was Ben’s caregiver, Lisa (not her real name), calling. I rushed to swallow the last bit of food from dinner before answering.
“I’m looking for Mike,” the male caller said.
“This is Mike,” I responded.
“Mike, this is John (not his real name), Lisa’s husband. I’m calling to let you know that Lisa has worked her last day with you. After the way you have treated her over the last few years, she just can’t take it anymore.”
If you can picture my jaw dropping to the floor, eyes popping, and getting short of breath, that was about how I looked. Lisa had just left our house 30 minutes before, in a good mood, telling me and Ben she’d see us tomorrow.
I wasn’t quite sure what to say but responded with, “What are you talking about? Can I talk to...
Figuring out how to bring a caregiver into your life, even for a few hours per day, can feel like a daunting task. Wondering where the money will come from to pay for a caregiver can create a lot of stress, on top of wrapping your head around how you will ever find a way to trust them with your child.
On the flip side, once you’ve come to terms that you can’t do it all yourself, no matter how Herculean you think you are, and you realize that handing off caregiving responsibilities can actually improve your health, you will start to see past all those barriers.
The key here, though, is to find the right person. And that’s not always easy. Whether you try hiring a caregiver yourself or rely on an agency to handle this, there are some really important questions you need to ask before you bring them into your home. It doesn’t matter if this is your first hire or not. These questions still apply.
I’m willing to bet that as a parent of child impacted by a disability, you have had to navigate your way through many unplanned events and crises. Some of them may even have been life threatening or serious enough to warrant calling 9-1-1.
It’s safe to say that during the stress of an actual emergency is NOT the time to figure out your response. Most of us under pressure often make poor decisions if we haven’t prepared ourselves. And if it can happen to you, it can happen to your Caregiver, too, which can lead to some unwanted outcomes that no one wants. Helping your Caregiver prepare for an emergency is really part of the training you should provide after hiring the person.
To help you help them, here are some simple rules of thumb (RT):
DO NOT expect or assume your Caregiver knows what to do. Even though they may have lots of experience in emergency situations, I expect there are specific aspects about your home or your child’s situation that they...