Advice on prams/cots for disabled parent

[flowerflo]

I'm currently 21 weeks pregnant. I have a progressive muscle wasting disease so am trying to plan ahead and get the right equipment to suit me. I can walk ok(ish) but really struggle with bending and lifting due to weak core muscles. Does anyone have any ideas on prams and cots which are very high so I don't need to bend. I want to be as independent as possible, but I could never look after my niece alone when she was a baby due to not being able to lift in/out of car/pram/cot etc. The stokke xplory looks high so I wondered if anyone had tried this and had feedback. Thanks x

Hi, Check out my blog as I am a disabled parent and have tried to help others like your self in suggestions of baby equipment but not yet got round to blogging about buggies but boyyyyy do I have so much to say on buggies and car seats so watch this space. Hey if you have any suggestions please feel free to add comments to the blog because if I can get disabled parents on board with this idea of sharing tips, info on accessible high street baby equipment etc then maybe instead of leaving disabled parents like you and I in the wilderness, in the future,there will be a decent resource for other parents like us on daily parenting tasks and without too much mention of the old "I'm a special aid made for a disable person", no need for those type of aids at all,there are lots of easy things to use on the high street that don't scream differently abled! Heck lots of mummies have bad backs after birth so some thought has been put into baby stuff by the high street.

Hope you get something out of the blog, it has only been going a week but I am getting as much info on there as my 8mth old son allows each day!

disabledpositiveparent.blogspot.com/

Cheers

I have the cossato close to me bedside cot, the entire side drops down under the cot making it easier to get baby in and out. Doesn't avoid the bending I admit but at least your never having to try and lift a baby over a high rail which is what absolutely kills me, and now DD is older she's starting to be able to climb in and out by herself thus saving me the trouble.

Forgot to mention, the i-candy cherry pushchair frame is the lightest one I could find (I did a hell of a lot of reasearch), about 5.4kg I think.

Hi flowerflo. Have you been referred to physio yet? If not, get your midwife to refer you. When I was pg with DS1 (6 years ago) my fantastic physio recommended the Stokke Xplory and I have to say it was worth every penny my mother spent on it (I was extremely lucky)!

Although it was heavy to get in and out of the car, it was fantastic all the rest of the time. It was a walking frame for me, very sturdy, but could carry loads of stuff. The pram (baby bag I think they call it) bit was great for the first six months as I'd just wheel the pram into the house and park it in the dining room with DS1 still in. Then I didn't have to try to get a sleeping baby upstairs to his cot. If he was in the car he was in the lie-flat Jane Matix car seat which just stayed there as I couldn't lift it in and out. I'd then just slide him gently from car to pram and he'd often stay asleep. Once we turned it into the pushchair both boys loved being high up and facing me as we could have long chats. In fact the only time I turned it round was when we went to restaurants and they didn't have a good high chair!

The best thing to do is to see if you can 'test drive' it as you will get a feel for whether you think you can manage it.

Re the cot, make sure you get one which can start off high, but can be lowered as once babies are on the move they can get out easily! I know of some which have three height levels. Also make sure it has one side which can drop with one hand.

I would also recommend the Stokke changing unit. It is big and bulky, but it was, again, for me worth every penny. I used it day and night for both my boys and it was just fantastic not to have to get down on the floor.

Do PM me or chat more on here. I know I probably haven't been very clear!

Flowerflo, I'm really sorry, I've just read the date of your first post - sorry it's taken so long to respond.

Thanks for the replies. I did end up getting a Stokke Xplory. Someone very kindly gave me one so I will be eternally grateful! I find it a bit difficult to put down and get in the car, but the height is amazing so it's worth it. It's definitely the only buggy I have a chance of lifting baby out of on my own. Am yet to get a cot but will have a look at the cossato.

I did refer myself to OT (I am an OT myself but have only ever worked in mental health!). Have had my bed raised and got some other bits of equipment and am hoping they can give me some advice and equipment for lifting/carrying baby. I'm desperate not to have to rely on other people.

Hi flowerflo,
i'm also an OT, my little one is 18 months old and i've had to alter the way i do some things due to hypermobility syndrome. (didn't find advice as easy to take as to give!!)
what i found really useful for carrying were slings. i had a very "carry-me-carry-me" baby, and i found that with a sling, i could get her weight centrally, close in to my body, and i would have my hands free to get up from chairs / out of the car / balance myself on the stairs, while still being able to transport her round. i knew that i wouldn't cope with carrying the weight of a car seat with the baby in, but slings felt a bit like an extension of pregnancy. i mainly used a ring sling, then moved on to back carrying when she got bigger, as it's a bit more symetrical and ergonomic.
the challenges keep changing when the get bigger, i used a cot-top changing board until she got wriggly, which was good, no bending, but have had to go to the floor, and using my leg as a restraint as she's got older and more hazardous! did consider a Rabbitt changing mat (has a harness) but have managed without.
would a perching stool help you in any of the tasks you need to do?
i also found that as they learn to crawl/ stand /climb...you can teach them how to do things safely like getting down from the settee feet first, climbing up onto it using a stool, getting up onto settee for you to lift them, which all saves you from having to lift so much. i think babies are very accepting of whatever your situation is, so will adapt to how you need to do things, particularly as you have these problems from the outset.
keep popping back as things arise...!

I completely agree with tatyr's point about babies adapting and accepting the situation. Mine certainly have and it's just normal that I can't do certain things, but that DH does do the running and walking and physical stuff.

One thing I did with both of mine from almost before they could walk was take them to a baby gym class where they could learn to climb safely with help, gaining independence and knowledge of what they were capable of in a safe environment. I can't run after them if they fall at the park, but those sessions (which I actually hated personally because it took so much out of me for the rest of the day) helped them so much.

Once they are mobile, I would also recommend reins when you are out if you can't chase after them. The children have a form of independence, but can't stray too far and also when they fall, which they inevitably do, you can hoik them up without having to bend down too far. Mine (at 6 and almost 4) now know how far they can run and they always stop and wait for me to catch up.

It can't be very long for you now flowerflo - hope you're doing ok?

Thanks for the advice and suggestions. It makes me feel more confident knowing that other people are coping ok. Good point about children adapting. My neice is nearly 4 and she is very accepting of my limitations. She will climb up automatically now as she knows I can't lift her from the floor. She also loves playing with my walking stick, which really helped me to get over my self consciousness when I first got it, as it was all a big game and she liked to copy me :)

Nice to meet another OT tatyr!

Only 8 weeks to go now, so not long!!!! Still feeling fairly good which has been suprise to both myself and the doctors. Am starting to get organised finally and only have 2 days left at work.......HOORRAY :)