Overcoming challenges

Christie Teki-Reu, a disabled mother from New Zealand, currently living in Australia, discusses how she overcomes the challenges of parenting as a wheelchair user with spina bifida and hydrocephalus.

My parents always encouraged me to participate in normal everyday activities. I attended mainstream schools, worked as a supermarket checkout operator, completed a diploma in business computing, learned to drive my own car (fitted with hand controls and a wheelchair hoist), got married and had a child.

Just like everyone else

After we had been married for a year, I thought “I want to have a baby just like everyone else”. I saw a gynaecologist who told me I could never carry a child for more than 18 weeks, but I then saw a second gynaecologist who was extremely positive and supportive.

My pregnancy was unusual, as the baby lay transverse in the womb, which was logical considering I was sitting in a wheelchair all day. The baby soon found the most comfortable position and lay cradled on my lap for 34 weeks. What a clever baby!

Due to my medical condition, it was better for me to have specialised care, which was not offered in our area. Our son Nathan was born on 4 September 2003 in Wellington Hospital. He was delivered, six weeks early, by caesarean section. Weighing 4lb 10oz, he was the biggest and healthiest baby in the neonatal unit. He was in an incubator for only 12 hours, before being dressed and put into a cot.

Three days later he was ready for discharge. We were flown home to Wanganui Hospital, where we stayed for another two weeks, during which time successful breastfeeding was established.

Adapting equipment

After my husband Kevin returned to work I cared for our newborn baby on my own. We used an adapted changing mat on the floor for Nathan to sleep on during the day, with a sheepskin covered with a cloth nappy for a sheet and a special wrap pinned around to prevent the baby rolling onto his side or tummy. A blanket draped over the baby completed the ‘bed’, which Nathan used until he was about a year old. I sat on the floor beside the mat to tend to Nathan’s needs.

By the time Nathan was three months old, he slept in an adapted single bed. Beside it was a chest of drawers and at its end was a barred cot side, which was hinged from the chest of drawers, across the bed and secured to the wall. I could climb onto the bed, and swing the cot side up out of the way to tend to his needs, such as change his nappy, breastfeed and cuddle him, and settle him back to sleep. I was able to breastfeed for two years and only gave it up because he wanted to help himself at inappropriate times.

We only used the baby bath for a couple of months as Kevin found it easier to take Nathan into the shower with him, which Nathan loved. A bathroom without a bath has its disadvantages. Last summer, we bought a large plastic container, which Nathan was able to sit in and play with bath toys, something he had not experienced before. He loves his baths!

New challenges

As Nathan developed and started to explore his environment, we were presented with new challenges. In my kitchen, I had adapted a bookshelf to hold the pantry items so I could reach them from my wheelchair. Nathan quickly learned what he could and could not touch. We built a barrier out of a playpen, which we screwed to the wall around the fireplace. My brother-in-law built a flat-roofed playhouse strong enough to hold the television and other electronic equipment out of Nathan’s reach.

Between six and nine months, Nathan was strong enough to sit on the footplates of my wheelchair and hold on to the frame. This gave me the ability to move Nathan around the house. This was especially useful when it was his sleep time as we were on our own while Kevin was at work.

When Nathan was about two and a half, I was able to put a safety harness on him, secure it to my wheelchair and we could then go for walks around the block. At about this age, Nathan was big enough to climb into his car seat by himself. All I had to do then was buckle it up, and use my hoist to get my chair on to the car roof, and we had gained our independence. Hoorah!

From 18 months old Nathan attended crèche full time. I would drive Kevin to work and then go to the crèche, where a member of staff would come out and collect Nathan from the car. I was then free to do things on my own. I explored advanced educational opportunities and worked as a volunteer in the Special Needs Unit at Wanganui High School. During the afternoons I would prepare our evening meal before picking up Nathan and Kevin.

Last summer, Kevin dusted off his bicycle and started cycling to work. It wasn’t long before Nathan wanted to ride with his daddy, so Kevin purchased a child seat for the bicycle and took over delivering Nathan to crèche. This left me completely free, except when the weather was wet, when they could not cycle.

‘Can do’ attitude

We usually go to the supermarket as a family, but when I only need a few top-up items, I am now able to take Nathan on my own. He wears a harness, which I tie to my wheelchair and off we go around the aisles of the supermarket. Fellow shoppers are very helpful in fetching items from the higher shelves. My last foray to the supermarket without the harness was a complete disaster with Nathan throwing a tantrum and running for the door. I won’t ever forget the harness again.

Kevin and I are both working in the IT industry. We are currently on a work assignment in Australia until June 2008. In an endeavour to keep my independence, we took the wheelchair hoist with us. We hoped that it would be possible for me to use it to transfer into a car, but found that it would be a very expensive exercise to get hand controls fitted to a second car. I now rely on Kevin to drive us everywhere, which is taking a bit of getting used to after having regained my independence such a short time ago.

I am finding that as Nathan develops, new challenges present themselves. I have to overcome these but with our Kiwi ‘can do’ spirit, my positive attitude, and support from my wonderful husband, family and friends, I am sure we will overcome all these challenges and nurture a well-adjusted young man.

First published DPPI Journal, Issue 60: Winter 2007/2008


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