Back to basics

DPPI Information Service has received a number of calls from parents and prospective parents, with back problems. This article describes some parents’ experiences and provides suggestions for dealing with basic parenting tasks.

Just as no two babies are the same, neither are the experiences of a parent with a back condition. The nature of a parents’ back condition, level of pain and whether or not other parts of the body are affected all impact on a parents’ mobility. Likewise, parenting tasks vary according to the age of child. During any one day there may be many different handling tasks required to meet the needs of a young child for example, bathing, nappy changing, lifting into and out of the cot/bed or the buggy/pushchair, or the high chair, or the car — all a potential nightmare for parents with a back condition!

Many disabled parents find it important to share experiences; often it is the little tips and ideas that can make the most difference. We should like to thank the following parents who have taken the time to share their experiences and the occupational therapists who have added some practical ideas.

Isabelle’s story

Isabelle has a back and knee problem and also experiences episodes of sciatica. She has a daughter, Jodie, who is five and a half months old.

Isabelle said, “After Jodie’s birth, during which I had an epidural, my back pain felt better for a while, but as she has got heavier, the pain got much worse and lifting and carrying has become much more difficult. I use an Ikea changing table for nappy changing which converts to a shelving unit. We assembled it when I was in pain so that I would know if I could use it and whether it was at the right height or not.

“For getting out and about I use a Mamas and Papas ‘Pilco’ pushchair. It’s very light with suspension on all wheels, but it does need two hands to open and close it. The front of the pushchair opens like a gate so it’s easy to pick Jodie out, bringing her close to my body. It’s not always easy to go out many train stations don’t have lifts and in my area there are not many buses with ground level floors.

“We spend a lot of time on the sofa. She eats on the sofa propped up with a V-shaped cushion - I’m trying to take care of her back too. It’s difficult to carry her around the house. I can’t wait till she’s walking and will be able to climb up things herself. I’m looking for a high chair at the moment. Ideally I’d like one that is adjustable with the child seated in it. I’d also like a playpen that is raised off the floor, with a door opening. We’ll be moving house soon and I’m thinking of getting a raised play area built into the corner of a room.”

Joan’s story

Joan has a baby daughter, Katrina, who is eight weeks old. Joan has chronic hack pain and uses crutches when walking.

Joan said, “What I’ve found most difficult since having Katrina is having to be more reliant on others, particularly my husband. I’ve never classed myself ‘disabled’, I’ve just got a bad back. The one thing I definitely can’t alone do is bath her. We put the baby bath on the kitchen table and though I could put her in, it’s impossible to get her out. It would be a problem even if I used a bath that fitted over an ordinary bath.

“I sit down to do everything. Katrina sleeps in a Moses basket on a small table by the side of the sofa. I sit at one side of the sofa to breastfeed so my arm rests on the sofa edge, with Katrina resting on a small pillow. Katrina can feed comfortably as long as she wants. She spends time beside me on the sofa or in a bouncy chair with handles that can be set at different heights. If the handles are on the high setting it’s a lot easier to get to her, it’s also at the right height for me to play with her. As she gets older I’ll be able to feed her in this. We’re also planning to use a highchair that has a table attached. If the chair sits on the floor this will be at a good height for me when I’m sitting and it will be easier for me to retrieve thrown toys, as Katrina gets more active.

“Getting Katrina from the sofa to the changing area is a struggle as I’ve also got arthritis in my knees and hips. At the moment she is still small enough for me to carry a short distance on my shoulder. I have an office chair on wheels with arms rests which I sometimes put beside the sofa and transfer onto to go the short distance to the changing area. My changing area downstairs is a workstation. My husband sawed a few inches off the legs so it’s the right height for me to sit comfortably at. The changing area also doubles as a play area, I have mobiles and small toys for Katrina to look and play with as I sit beside her. Sometimes I find it easier to change her on my knee, she likes that, as she doesn’t get disturbed as much. I keep everything I need in a changing bag beside me.

“Transporting Katrina is difficult and I can’t manage the stairs with her. I tried a front pouch but this was very painful. I use a Mamas and Papas “Romano” pram to take her out, which I’ve found very good. It has an MPX chassis and light aluminium frame. You press a button and it sort of ‘explodes’ open. You don’t have to bend too much and it’s got handles at arms lengths, which are useful when transferring it into the car. We bought quite an expensive car seat, which is well padded, enables Katrina to lie flat and has a handle that turns. But it has turned out to be very difficult to carry as its width and padding mean you can’t carry it close to your body.”

Sarah’s story

Sarah has a daughter, Madelin, who is two years old. Sarah experiences severe back pain. She is eight months pregnant with her second child.

Sarah said, “I’m finding it more and more difficult to get around and each week I am able to do less and less. I’ve recently been stopped from driving and I’m going to be induced soon because I am in so much pain. I have difficulty walking but up until recently have been able to get out pushing my daughter in the pram. It’s difficult to go out just holding her hand because of our height differences. I used to have a travel system with a car seat so I could lift Madelin in and out without disturbing her. But the car seat was very heavy to carry with one hand without twisting my back. Madelin now sits in a booster seat, which sits directly on the back seat and has small arms rests and a five-point harness. She’s now able to use the arm rest and door handle to climb out of car and get into her pushchair but it’s taken her until she is two to be able to do this.

“I’m quite tall so the priority for me was finding a pushchair with the handle at the right height. It has big wheels for extra manoeuvrability but this makes it heavy for getting in and out of the car. I’ve just bought a double three-wheeler buggy that is light and easy to steer, I didn’t want one that has one seat in front of another, as they are too difficult to manoeuvre.

“Bathing Madelin is difficult. She goes in the big bath but it is very difficult getting her out when she is wet and slippery, especially if she doesn’t want to get out! It’s also hard leaning over to wash her. I try to wait until my partner is around.

“I did use a Mamas and Papas changing unit for nappy changing but, although the sides of the changing mat slope up, it is too dangerous now for Madelin. So I change her on the bed or sofa, which is not easy if she struggles, and I do put my back at risk. I’m sure it will help a lot with the new baby; I didn’t have it when Madelin was small. It’s just the right height for me to stand; it includes a bath with an emptying hose and is on wheels so you can push it to a sink to empty it. We’re hoping to start potty training soon. I’m going to use one of those seats that sit over the adult toilet seat and have steps up to it.

“As Madelin’s speech and communication develop things are beginning to get easier. I can now get her to ‘tidy up’ and she’ll even carry her nappy to the bin. We try to tidy up at certain points in the day such as before lunch or before going out. This saves me having to spend an hour at the end of the day on my hands and knees and it’s also safer if I come in from the shops not to have to trip over toys. Madelin has a big flexible toy bin which she can climb in and out of herself to get her toys.

Clare’s story

Clare has mechanical instability and chronic pain syndrome which means she is unable to sit or stand for any length of time. She has two daughters, Poppy, aged six and Ruby, aged three and a half.

Clare said, “I breastfed Poppy and Ruby lying down, even when I was out — lying on my sofa, on the floor, or on park benches! When they were young I would always ask people for help when I was out, for example, with lifting them from a buggy into the car. I used a buggy a lot in the house. They would sit and play in it and moving them into a different room for a ‘change of scene’ worked well.

“My partner was able to change his work routine and work from home so I had a lot of support. Both my children went to nursery part-time from when they were five months old. I used to breastfeed them lying on the nursery floor before I left them.

“When they were small I used to sit on the sofa cross-legged and encourage them to straddle my foot. I would then lift my leg, reach out and grab their arms and sort of flip them up onto my lap. I often got down on the floor to play with them, or I would lie on the sofa while they sat in a bouncy chair or lay on a beanbag so we were at the same height. They both learnt to be good climbers from a young age. I used supported climbing to help them get into the high chair from when they were about one year. As for bathing, I would get in the bath with them when they were young, though this usually meant someone needed to be around to pass them in to me. They learnt to get out themselves with me holding their hands.

“I found the Brio cot brilliant as it’s adjustable and the side goes up and over rather than down, so that the children could get out straight onto the floor. Toilet training was one of the most difficult things. I think they realised they had the power to have me hanging around for ages - “Mummy I haven’t finished yet” meant I spent a lot of time lying on the landing floor waiting for them. I used potties (the sort that looked like a toilet with a pull out drawer) rather than the main toilet.

“My pushchair has been my lifesaver. I’m now on my tenth! I change them as my children’s needs and mine change. I’ve now got a big three wheeler that, at a push, both children can be carried on. If my six-year-old gets tired we can’t just sit down while she has a rest. Both children have learnt to be pushchair kids as I found it difficult to walk with them at their pace. They used to be fed a lot while out in the pushchair so they wouldn’t complain too much! Often we went out around mealtimes so this worked well. I’m also a big fan of reins to stop them running off.

“After Ruby was born we got a live-in au pair which worked well. I’d tried other part-time help but it was too expensive. I just needed someone to be around to help with the odd lift.

“I use some of the techniques I learnt on a pain management course with the children. For example, pacing myself, so I do something for five minutes then I stop and do something else. This meant accepting that the children would adapt and that it’s OK to say “I can’t do that.” Even if they get upset I know that they will find another way of doing it for themselves.”

Lucy’s story

Lucy has a chronic back condition. Her daughter, Megan, is eight weeks old.

Lucy said, “Megan was a planned baby. Before I had her I really tried to think ahead and plan for everything but it’s been a lot harder than I thought. People told me there would be lots of support and help but that’s not my experience. The labour was difficult; looking back I think I’d been too stubborn, wanting to do everything naturally. I’d made a detailed birth plan and assumed people would read my notes and understand, but nobody wanted to take responsibility for looking after me. Also, physically, it was difficult in the hospital. They didn’t even have grab rails by the bath.

“The past two months have been very difficult, made worse because Megan had a lot of feeding problems and had to be hospitalised for a week. I’m now part breast part bottle-feeding her. I have a chair with armrests that is the right height so my knees are at right angles. Megan is supported on three pillows and a V-shaped cushion so I’m not bending forward. But it’s still quite difficult. People say it would be easier just to bottle-feed but I’m not sure I necessarily always want to take the easiest option.

“My back condition means I can’t either stand up or sit down for long so I’ve had to find different ways of doing the same thing, so I’m not always using the same muscles. Most things I’ve had to work out for myself; it would have been good to have more ideas first. We live in a bungalow and I have a pram with high handles, which just stays indoors, that Megan sleeps in. The master plan was that I could just push her from room to room, but that hasn’t worked out as well as I’d hoped. You always see people leaning into prams to lift babies out but I found it much easier to stand by the side of the pram to lift Megan out so that she comes straight into my arms in the horizontal position.

“I bought a Mamas and Papas “Aria” pushchair for outside which is quite light and good for getting in and out of the car. But it’s expensive for what it is. There’s no way I can carry her in her car seat. The seat stays in the car and I can just manage to carry her the four metres from the car to our front door.

“I don’t think professionals have enough training or are willing enough to listen. My occupational therapist was very unhelpful and just said it wasn’t her field. A social worker came just for half an hour. Megan was crying and she said, ‘It’s difficult isn’t it’ and left, leaving me forms to fill in. It seems I’d need to pay £5.50 per hour for extra help via social services but for that I’d rather employ my own person. I visited the baby group at the health centre. I thought health visitors would be more aware of disabled parents’ needs, but they weren’t really. They didn’t even have a bottle warmer. I could have taken one but I was trying to reduce weight/things to take and thought well surely they’ll have one there. Another problem is that often pushchairs aren’t allowed into health centre, which makes its very difficult if you can’t carry.

“People keep telling me I should get out more but its not always easy. I think at first I was being too hard on myself trying to be like everyone else. Now I’m better at accepting that things are different every day. For example, when my husband works shifts and Megan hasn’t had her bath, I’ll give her a wash instead. I used to get upset that I couldn’t bath Megan and wasn’t involved but now I accept that, although I can’t actually do the bathing, I can still watch. For me it’s important to feel involved even if you can’t do something. I am trying now not to give myself a hard time if I haven’t been out with Megan or haven’t bathed her but its taken time to get to that point. When I’m with her I try not to think of all the things that aren’t done, instead I make sure her room is nice and tidy so the time that I spend with her is our time together.”

First published in Disability, Pregnancy & Parenthood international, Issue 37, January 2002.


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