It was a silly question to ask a group of 300 high school students because the answer was obvious. With over 3 billion smartphone users worldwide, who doesn’t have one?

I was asked to give a presentation to these students on what it takes to build an inclusive world, and as I waited on stage to be introduced, I could see many of them trying to get one last text message sent.

The basis of what I told them about inclusion (naturally) centred on Ben’s achievements, which were a direct result of the inclusive community that supported him.

But since they didn’t know Ben, even though he was a graduate from the same high school, I was unsure what I could leave with them that would be relevant to their lives.

I opened with some background on our life with Ben, and the pain and struggles we constantly faced, especially in the early years.

I showed the film, “Including Me: Ben’s Story” (you can watch it here), which raised a few eyebrows.

And then I talked...

When Jan and I were thrust into Ben’s world of 24-hour care with no preparation and, of course, no training, we struggled a lot … which really isn’t surprising.

We were off-balance nearly all the time and had little confidence on what to do next.

Strangely, we thought we were the exception. An outlier. So different from the rest of the world.

After all, people weren’t lining up at our door to help us figure things out. We were pretty much left on our own.

When it came to providing round-the-clock care, it all fell to us. And I would say, that’s probably how we wanted it.

He was our son, after all. Our responsibility. It was up to us to provide the care needed.

But as Ben got older, his level of care remained high. Needless to say, that just goes with the territory in the world of disabilities.

It took us a long time to figure out that we couldn’t do this on our own (or maybe it took me a long time).

A Worldwide Issue

What we didn’t realize...

Yesterday morning began the same as most.

6:30am alarm.

Hit snooze.

Hit snooze, again.

Get up. Unlock the back door for Ben’s assistants. Turn on the kitchen lights and back to the bedroom to get a shower.

I decide to browse my iPhone while waiting for the water to heat up and find an amusing Facebook post.

I start a sarcastic reply and then … SILENCE.

No power! The house is back in darkness. I’m taken off-guard, not really sure what happened. and feel a small wave of anxiety rise inside.

I find the power company’s website and discover that there are 1,500 customers affected by the outage.

Good! It’s not just me. It’s not the whole world, either (maybe that’s where the panic came from). But it would take at least 2 hours for it to be restored.

That's too long to go without power in the winter. So, I throw on a heavy coat and brave the -20C weather to start our generator … which, by the way, isn’t easy to do with arctic winds...

The statistics¹ are staggering when it comes to unpaid, family caregivers. Whether it’s providing care to your child with a disability, your aging parent, or some other loved one, the numbers are mind-numbing.

Here’s the deal:

• 43% say their loved one’s health is more important than their own.
• 49% experience feelings of depression.
• 51% don’t have time to exercise.
• 70% feel tired most of the time.

On top of that, unpaid family caregivers in the U.S. give up $3 trillion (that’s 12 zeroes) per year in wages, pensions and other benefits.²

The scary thing about this is we fell into most of these categories when Ben was young.

We did everything ourselves. 24/7. 365 days/yr.

We didn’t ask for help. We were his parents. His care was our responsibility.

Whenever it was suggested that we should bring in a caregiver to help, we had a million reasons why that wouldn’t work.

1. We couldn’t afford to pay anyone. Things were extremely tight...