Keeping balance - adaptive parenting equipment

Having cerebral palsy hasn't deterred Shona Milne from having children. With the recent birth of her daughter Chianne, she now has three – the other two are Aiden, aged 10, and Lauren, aged eight.

Shona's main problem is poor balance. She uses a walking stick over longer distances, but at home she often kneels down to perform tasks that require two hands. “You can't fall down if you're already down there, and it is a safer position to hold a baby,” she said.

Strollers and prams

TADNSW first assisted Shona 10 years ago by modifying the stroller she was using for Aiden. This project, which featured in the Autumn 2000 edition of the TADJournal, involved converting the stroller's brakes to hand operation, adding a weight at the front to counteract Shona pushing down on it to keep her balance, and attaching clips to carry her walking stick.

With Chianne's birth approaching, Shona contacted TADNSW for more assistance, and volunteer Chris Scott went to see what was required. The first task was once again to modify the pram that Shona was planning to use.

This time she had selected a pram that was heavier at the front, so it didn't need an extra weight or other anti-tilt mechanism (see TADJournal January 2008 for an example). However the pedal brakes were still a problem, as she couldn't lift her foot to operate them without the risk of falling over.

Chris converted the brakes to hand operation, making sure that the changes didn't interfere with the ability to fold the pram. He adapted two brake handles from a walking frame by heating and flattening them to the right shape to fit the walker, added a cable, and made a new braking mechanism which fits over the wheel assembly.

When the handles are in neutral position the pram travels normally, when they are pushed down this operates a brake lever which squeezes onto the tyres to lock the wheels, and when they are pulled up they operate like normal cable brakes, applying the brake levers to slow or stop the pram.

To simplify the brake operation, the rear wheels are locked in a straight-ahead position, using the locking device supplied with the pram. This stops the wheels rotating and damaging the brake mechanism.

Another issue was that Shona is unable to push down on the back of the pram to raise the front wheels when she needs to go over a kerb. She needs to go around to the front of the pram and lift it from there.

Chris therefore made an extended 650mm strap which goes around Shona and the pram. This enables Shona to go around to the front of the pram while still attached to it, which is also useful if she needs to tend to Chianne. The standard 300mm strap, which is now mandatory for all prams, also remains attached to the pram handlebar. 

“I love that extra lead, and I use it all the time,” Shona said. “I know that if I accidentally trip I can let go of the pram and it won't roll away.”

Cot access

The second task was to modify Chianne's cot so that Shona could lift Chianne in and out from a kneeling position. Shona had an older-style steel cot with sides that slide down for access, but when the side was in the lowest position it was still above mattress height, and Shona couldn't reach over it to pick Chianne up.

It wasn't possible to convert one side into gates, as has been done with other more modern cots, due to the design of the cot. Chris therefore made an entire new side for the cot which is 200mm shallower than the original, which means the side is now flush with the mattress in the lower position.

Chris made the new side to be identical to the originals. The top and bottom rails are made from 20mm steel tube, and the vertical bars from 6mm steel tube which he bent to fit and then tack-welded into place. The final touch was to spray-paint the entire unit with white enamel so it matches the rest of the cot.

Chris made a new side rather than cutting down one of the existing ones so that the original can be re-fitted as soon as it is needed. “This is only an interim measure until the baby can sit up and move,” he said. “Once the baby is more active, Shona will be able to lift her more easily, and the original side will go back on.”

Nappy changing

Shona also wanted a change table to use from her kneeling position. “I found a base that was the right height, and asked Chris to add a table on top, but the volunteers did it better than I pictured,” she said.

Volunteer Allen Pidgeon made the table top from chip-board, with a 75mm-high pine frame around the sides to keep the mattress in position. Two of the four sides are hinged so they can drop down 180°, making it easier for Shona to slide Chianne onto the table. When in the raised position, the sides are held in place by magnetic catches, which are easier for Shona to use than pad bolts.

Chris also added a wooden shelf underneath the table top, which Shona finds very handy for storing her baby paraphernalia. The final touch was a small strap which attaches with Velcro, which Shona can use to keep Chianne in position while she is changing her.

Shona has arranged the cot, change table and pram so that she can move in an arc from one to the other while on her knees, with everything at the same level. She initially thought she would need a lifting device to move Chianne from the pram to the change table, but she found that she was able to manage this without additional equipment.

“Allen and I tore our hair out and did about eight designs,” Chris said, &rlquo;but the only way to do it would be to take the pram apart and fit in a whole new section. But you can take the front of the pram down so it can function later as a stroller, and Shona found she could manage to slide Chianne in and out OK when the front was open.”

Bathing

The last task was to assist Shona to bathe Chianne. She had bought a plastic baby bath, but she couldn't use this in the bottom of the main bath as she couldn't bend over far enough from a kneeling position. 

“I imagined some sort of metal frame,” Shona said, “but what Chris came up with was much better as it is easier to clean, and the home care ladies love it.”

Chris's platform is made from marine-grade plywood which he spray-painted with white enamel to waterproof it. This rests over the main bath, with timber stops underneath to keep it in position. There is a hole in the centre to fit the baby bath, which is in turn kept in position by the lip on the bath. 

Shona's needs will change rapidly as Chianne grows, and TADNSW will continue to provide support as required. In fact, by the time the TADJournal spoke to Shona, Chianne had already begun to roll, and Shona had made an appointment with Chris and her therapist to talk about making the next set of changes.

This article is reproduced with permission from TADJournal, the official journal of TADNSW, Australia. For more information, please visit www.tadnsw.org.au

First published DPPI Journal, Issue 72: Spring 2011