Earlier today, a friend of mine posted on his Facebook page, “Cruise booked!”
I scoffed and rolled my eyes. The only way that would ever happen in my life would be if all the planets and stars aligned.
First, we’d need to book caregivers to cover each day we were away, and that means 24 hours per day, along with a backup plan if one of them couldn’t keep their shift or we got delayed coming home.
Second, we’d need Ben to be healthy leading up to our departure. No seizures. No strange behaviour. Obviously, it would be impossible to predict any of that months in advance.
Third, we’d need a way to get home quickly in an emergency. Floating on the open waters would make cruising just about impossible.
And last but not least, we’d have to be able to afford it. Or rather, is a cruise where we want to spend our money and do we want it bad enough to go through all this prep work?
I have to be honest. My first reaction to reading about his upcoming...
Keeping your child safe is a no-brainer. As parents, this is front and centre especially when our children are young.
Safety is also a trump card. How can you argue about not being safe? But if exploited, it can be used to create fear and uncertainty.
When Ben was in his second year of high school, we pushed to have a structured schedule in place to help him develop his physical skills.
We believed that if we didn’t give him every opportunity to stand and walk, he would never learn how to do either.
I mean, that’s just common sense, right?
How can you learn a skill if you’re never taught and given the opportunity to practice?
But including standing and walking into his daily routine required the expertise of healthcare professionals to assist the school staff.
Unfortunately, most of the therapists we encountered didn’t believe that Ben could ever learn how to do either.
And when it came time to provide any recommendations...
I remember going to our very first appointment to talk about getting a wheelchair for Ben. It was with the Remedial Seating department at the IWK Children’s Hospital in Halifax.
I remember feeling rather unsettled that we had reached that stage with Ben.
The simple Perego stroller and ethafoam insert wasn’t doing the trick for him anymore. The only realistic option was to transition to a paediatric wheelchair.
But I didn’t want to go there since it was an admission that Ben’s physical disabilities were becoming more complex, and we were losing control.
I didn’t mind our weird looking stroller. Sure, some people stared. But having to use a wheelchair took weirdness to a whole other level, and it would mean just about everyone would be staring at Ben and us, no matter where we went.
We were presented with different types of wheelchairs along with a list of add-ons and options and needed to make some decisions.
I don’t know about you but I’ve grown weary of the 24-hour news cycle. It used to give me a rush but not anymore. I include all social media channels in the “news cycle” category, too, since they often bombard us with a lot of useless and distracting information.
Admittedly, my attention to the news cycle was heightened after the 2016 U.S. election. The stories that came out were so absurd and eye catching it was nearly impossible not to notice them.
But a year later, these stories have become almost soap opera-like, where I can skip a whole month of episodes and still know what’s going on.
In reality, the minutiae of the “top story”, of what’s fake and what isn’t, doesn’t really matter. It adds nothing worthwhile to my life and certainly doesn’t contribute to helping me support Ben.
The only thing it does is agitate me and instill a dose of fear. Too much of that negatively affects my mood – I’ve...
From the moment that Ben entered our lives more than 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...