When dealing with a condition such as Duchenne muscular dystrophy, where muscles regress, it's really important that you look beyond the here and now, and plan with future needs in mind too.
With my son's condition, we're now at a point where we are considering how transportation is going to look for our family, and so we're starting to make enquiries around Dominic getting a more permanent wheelchair and the modified vehicle we'll need to move this around.
On average, people with DMD will generally move to using a wheelchair between the ages of 9 to 11, which means that we're on the cusp of hitting the lower age in that range. The need for a less casual wheelchair will, in an ideal world, happen gradually, but sometimes, they'll need one more suddenly. For example, Dominic is a long-term steroid user, because steroids are the only way of slowing the regression. Long-term steroid use weakens bones, so if he were to fall and break a bone, he will more than likely begin permanent wheelchair use immediately after this incident. As falls are more likely to occur the older they get, it's really important that we ensure there are walking aids in place because we don't know what's around the corner. I don't worry each day that he's going to fall and break a bone, but the reality is, that it could happen.
The Journey Commences
Since the diagnosis, Dominic has been working with a physiotherapist, who is great, and she's suggested that we begin the journey of organising an electric wheelchair (EWC) and a modified vehicle. I've been fairly stoic since we found out about DMD, and I approached this new information in a very similar manner. With Dominic's school camp happening mid-term one, his physio and I thought that it would be a great time to trial these items to start to get a feel for what would work for our family. Being long-term purchases, we need to take time to gather information on the various models of vehicle and wheelchair.
For a long time, I've been a fan of the Kia Carnival, and when Dominic's physio first suggested we begin considering a vehicle, I immediately thought of one of these. They have a good reputation, offer the room I figured we'd require to have it modified to fit the EWC, and just generally look good on the road. But, in January, we took a trip to a business that modifies vehicles for accessibility and I was able to see three different vehicles that had already had the modifications applied to them, and was a little disappointed to see that the modified Carnival was very cramped, in the back, where the wheelchair goes. Another disadvantage of this car is that the windows that Dominic would be looking out of are very small and don't provide a great deal of light. While there's little choice but to wheel the chair into the rear door and have it sit where the back row of seats would have been, in a non-modified vehicle, I don't want him to feel as if he's a piece of luggage in the boot (trunk) of the car, however, in the Carnival, it does give this feel.
Hyundai Staria - I don't think we'll be friends!
The two other options were a VW Caddy, which was way too small (smaller than the Kia) and, in my opinion, not really a viable option, or a Hyundai Staria, which is a very futuristic looking vehicle and by far the biggest of the three. I really liked the room in the back of the modified Staria and the windows in the rear of the car are huge, meaning there's a lot of light and a fantastic view for Dominic. The main drawback, however, is the very thing that makes the car so appealing - it's size.
Harder Than I Thought
Wanting to get this right, we decided it would be a good idea to trial the most appealing of the cars - the Staria. We were also able hire the EWC to test with the car. To give it a bit of a run, the best option was to hire the two items so that we could take them to the camp. It would give us a chance to take a longer trip and test the combination in different settings.
The car was really pleasant to drive and apart from the size of it, there's not a great deal I would complain about. Admittedly, it's not the type of vehicle I'd buy unless in the circumstance in which we find ourselves, but it is still quite nice. A Carnival, I would purchase regardless of circumstance, but the Staria really is quite a bit larger than the Kia. Having said that, the technology that's been packed into it blew my mind. I can't actually believe that it's possible for people to be bad drivers anymore. The car pretty much does all the thinking for you. Imagine my surprise, when stopped at the lights, and the car started to beep at me. I looked at the dash to see a message identifying that the vehicle in front of me was moving. I'd been slightly too slow in following, and the car was letting me know. I didn't really like it. I'm not an idiot! I also didn't like the lane assist - every time the car crossed a lane line, the car beeped at me. Again, not an idiot! If we end up purchasing this vehicle, I'll be turning this feature off. (Assuming I can - hopefully I can!)
Wheelin' into the shopping centre
The crumbling of my usual stoic approach to this condition occurred the day after we returned from camp and I took him to the supermarket in the car and we used the EWC for the first time in public. That part was fine - I'm proud of my son and happy to walk anywhere with him while he's using his chair, but as a part of the rental, we were capturing photographic evidence of his using the wheelchair in various settings and in the car itself so we're able to gauge how much room Dominic has to grow. After we'd finished in the shops, I asked if he'd like to ride in back, in the wheelchair, for the first time, and he agreed that he would. I was unprepared for how difficult it would be to have him in the chair, in the car. I know that it doesn't mean that he needs to do this all the time, but the image that's now seared into my brain isn't budging.
I've determined that no matter how nice the car is, no matter how necessary the EWC is going to be, we will never, ever, be friends. Sure, they'll both be providing practical assistance for my son's future sustained mobility, and I'll appreciate that, but they'll be tolerated and we certainly won't be mates.
Strapped in and ready to roll - this is the bit that really got to me!
Two years ago, we weren't even contemplating buying a car, and I certainly never dreamed that if, or when we finally did, that we'd be making decisions based around whether a wheelchair would fit into the back of the vehicle or not. But here we are.
I don't want to buy a car such as the one you've just been reading about. It feels like if I do I'll be admitting defeat. That this diagnosis will, by the purchase of these things, become really real. And I don't want that. It's like a tipping point of no return where we're say that we understand that he's not going to be able to walk soon, and that we're giving up, and just letting it happen. I'm not ready to do that just yet. The logical part of me says, 'You must.' But the emotional side of me says, 'Once you do, you've thrown in the towel.'
Despite all my misgivings, I know that when the time comes, I'll do the right thing. I have to. But it doesn't mean I don't want to.
That's a rough one, you would almost have to have it modified which I'm sure is expensive...
People can be bad drivers still, especially the intoxicated ones! Cars really do a lot to prevent problems anymore which is a nice feature but can get annoying.
You're a good father for trying to figure that all out for your boy!
It will have to be modified, and yep, it’s expensive, but a few years ago in Australia, the federal government developed an initiative called the NDIS. I think it stands for national disability insurance scheme, or something like that. Essentially, when diagnosed with a disability that qualifies (I know that sounds really bad) the government will fund everything you need assistance with that’s related to the disability. It’s a pretty incredible idea. So the conversion will get funded through that, however, we need to purchase the vehicle.
This is why we hired it - the NDIS is more likely to approve founding if we can show that we’ve researched what will work. They’ll also fund the wheelchair. Again, it’s pretty incredible. I’m not sure if they based it off something similar in another country, or if Australia is unique in this, but regardless, I’m very grateful for the assistance this program provides.
why not?
I’m not going to lie. It took me a little to understand what you meant by your comment. Sometimes the brain doesn’t function as it should! But not to worry, it got there in the end.
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