"I wondered if sometime you might be able to write something about some of the practical issues around looking after a baby when you're disabled? My wife and I are considering having children soon, but I'm a bit concerned about how I will actually manage a baby with my level of fatigue (I have the same diagnosis as you), and with a wheelchair (how do you even push a pram with a wheelchair?!)."
I really want to answer this, but where to even begin...
Specific questions are easier and the query about pushing a pram with a wheelchair is simple enough to answer. I don't.
Every so often someone will send me a link to a product (which invariably turns out to not be a commercially available product, but a student's one-off engineering project or similar where they're trying to boost their grade on the Helping Those Less Fortunate ticket) that's a sort of pushchair that clamps onto a wheelchair. It's an interesting idea, but I've yet to see one that looks practical for any kind of day to day use.
If we're somewhere like my GP's surgery, where there's parking directly outside, seats inside, and not a lot of walking required, then I walk leaning on the pushchair, but most of the time when I'm out and about with Jamie he's in a sling on my front.
To find out about slings, I googled for my local sling library. The lady who ran it was very welcoming, and we had a very useful consultation session trying on different kinds of sling with a doll, and then with Jamie himself. We considered my ability to put the sling on myself, as well as what it was like once it was on. Then I was able to borrow my preferred type of sling for a fortnight to see how it worked for me "in the real world".
The answer is, it works very well. The time it takes me to sit in the back of the car, fish Jamie out of his car seat, shuffle him into the sling, and be ready to go, is about the same time as it takes Steve or my PA to pull out the ramps and get my powerchair out of the boot and round to the side of the car.
He likes being in the sling, especially while we're moving, and often falls asleep in it. Staff at my local Sainsburys have been known to dash over to say hello to Awake Jamie when we've only just entered the store, because he's almost always dozed off by the time we reach the checkouts.
It was also quite useful at home while Jamie was smaller and sleepier, because it meant he could snooze while upright (reflux issues meant he wasn't always a fan of lying down, especially straight after a feed) and I could use the computer, which among other things allowed me to keep on top of the admin of my Direct Payments.
Drawbacks: reduced upper body mobility is the biggie. I still have use of my arms but not as much reach, and twisting around in the chair to get at stuff in the backpack is right out.
Eating and drinking with a baby strapped to your front can be tricky at best and potentially dangerous at worst. My experience so far is that while the baby is pre-high-chair, you either need to have a pram/pushchair to put him in, or you need to be with someone who's happy to take turns for who gets to eat vs who holds the baby.
It can get a bit heavy after a while. It's very inconvenient if you've gone out intending to try clothes on. And personally, I haven't felt comfortable to try going to the loo while wearing him. So if I'm going to be out for a long time, or as above if I'm planning to try on clothes or stop for food, then I ask my PA to bring the pushchair (which is also useful for stashing shopping). It's really important to me, though, that as a rule we don't have a PA pushing Jamie while Mummy trundles off ahead or behind.
Hopefully this helps someone... more questions welcomed, although I can't guarantee they'll be answered!
8 comments:
If I ever go to the supermarket with someone who can film it; I can make a short vid demo using a trolley of how I push a supermarket trolley. Which is the same technique my mum used to push me when I was in a pram, and how I plan to push a buggy if I manage to have kids.
It wouldn't work for anyone who can't move their legs at all (it involves using your feet to propel your manual chair leaving a hand free to push a buggy), but it works for people like me who can move their legs, just for whatever reason can't really walk.
As I recall, your mum's wheelchair had the larger wheels at the front? I wonder if that made a difference?
With the powerchair I've occasionally moved the pushchair one-handed while operating the joystick, but only very slowly, over the tiniest distances, and in environments with absolutely smooth floors, wide doors, etc. Put me on a pavement with unpredictable cambers, potholes, dropped kerbs that still have an inch, poor traffic visibility due to badly parked cars... I don't think I'd get far.
I have a friend who got a daughter in August, and she uses a power chair when leaving the house. Her husband has made a lifting mechanism out of curtain pole hooks (I think that's what they're called in English? The pieces attached to the wall that the pole rests on) that he has affixed to her foot rests, so she can drive up to the back of the buggy, lift the chair/ foot rests up slightly to catch the buggy and lift its back wheels of the ground, and then she can manoeuvre around quite easily as long as it's more or less flat. The buggy has front wheels that can swing around. It does require a power chair advanced enough that you can control height of seat and angle of foot rests, though.
It's the "more or less flat" that's the kicker, though. Even getting around the estate where I live is an adventure in potholes, cambers, ridges caused by tree roots under the pavement, and dropped kerbs that aren't close to being flush with the road surface.
I also prefer the sling inside shops as it means the "footprint" I'm trying to get round crowded aisles is the square of my wheelchair rather than a rectangle of that square plus a pushchair fixed in front.
I mean, I'd love to try something like that for wandering round the park, perhaps. But for moving around urban/suburban spaces, not so much.
Thanks for doing a post in response to my comment - it was really useful. I'd seen people wearing slings, but I hadn't considered how useful they would be along with a wheelchair (and Google shows that they work well for men too!).
I guess my 'only' other question (which I guess is a pretty big question!), is how you manage caring for a baby with your fatigue? I'm worried that I would be too tired to calm a baby down, to feed them, to play with them etc - particularly with all of the disturbed sleep etc that comes with a baby. There's obviously no 'answer' to this, but I'd be interested to hear your experiences sometime...
Thanks again for all of the useful posts!
Firstly I just wanted to say thank you for everything you've shared about becoming a mum. I too have the same condition and use a wheelchair (a few years ago you also helped me to decide about getting e-motions, so thanks for that too!), so everything has been really useful and helpful and encouraging to read, as I'd love to be a mum too.
I have a couple of specific questions:
1. How do you manage resting during the day? I know you have said that your PAs don't do parenting, so I was wondering how you manage to rest? At the moment I have to rest a couple of times during the day to keep my energy as good as it can be, and I wonder how this will be possible if I had a baby to look after. I know babies have naps, but I worry that my need to nap and a baby's need to nap wouldn't necessarily 'match'!
2. How do you find holding and moving Jamie about? A few of my friends have had babies recently and I've held them, and I wonder how I'll be able to manage moving a baby around at home, especially as they get heavier. Obviously a sling will help, but I'm curious as to whether you have any other thoughts and/or tips about this aspect of caring for a baby.
Thanks again!
The only difference having the big wheels at the front makes is that it's almost impossible to go in a straight line. If you roll any chair down a hill it'll try and spin itself round to go little wheels first.
I can't understand why she preferred it, but she did.
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