Successful wheelchair parenting

Isabella Devani, a wheelchair user from Kent, UK, discusses her experiences of bringing up her active toddler, and the creative methods she has used to bond with her son.

At 16 months old, my son is an unstoppable, toddling force. Running, scrambling, exploring and investigating, his day begins at seven in the morning and ends 12 hours later – if I’m lucky!

As a permanent wheelchair user, I’m often confronted with the question “How do you manage?” Whether spoken in admiration or disbelief, it remains an irritating affront to my disability consciousness. Having become a wheelchair user only four years ago, I still find myself in defensive mode when it comes to other people highlighting my disabilities. Friends who have been wheelchair users since their youth seem to have taken to the challenges of motherhood with greater ease. Yet, on reflection, the best possible answer to the question “How do you manage?” must be that wheelchair parenting is the only style I have ever known. My son and I have been presented with the experience of wheelchair parenting by default. Hence, as a family, we have been responsive to the challenges which have arisen without being nostalgic for an experience of non-disabled parenting.

Finding solutions

Nervous about the practicalities of caring for a toddler, I put a lot of effort into finding suitable equipment and funding long before we had entered the toddler stage. Now that we’re in the toddling zone, equipment is low on the agenda because of the cost and time needed to source and purchase items. In hindsight, the vastly differing needs from one developmental stage to the next would have made much equipment redundant within a short time of its acquisition anyway.

Making adaptations to the way I do things has become my primary focus instead. I have only recently finished breastfeeding since this removed the need for sterilisers and bottles which would have been difficult to prepare and fetch. Some fundamental changes to my wheelchair have been made. Spoke guards were fitted as soon as my son became mobile, to prevent his fingers becoming trapped in the wheels. A backrest which offers increased lumbar support has also been crucial for my comfort while carrying my son around on my lap.

The other persistent concern that I had was about my son’s ability to learn to walk, if I wasn’t able to provide an example for him to copy. Yet I had underestimated the strength of the human instinct to walk. Not only has he been unhindered by my alternative mobility but, possibly in reaction to it,  found himself walking competently within his first year. I can only conclude that children are far more ready to accept the actuality surrounding them and to adapt to it than those of us socially conditioned to respond with caution. As a relative newcomer to impaired mobility, I still carry the former resistances to disability found in anyone inexperienced in disability issues.

Bonding with my son has taken place through song, rhyme and use of mirrors rather than through floor play. To sit my son on my lap in front of a full length mirror allows ample opportunity for sharing eye contact and facial expression. A few choruses of an adapted classic The wheels on mummy go round and round still result in hilarity for us all. We have also learned baby signing over the last six months, giving my son a chance to express himself more fully and giving me the added time to physically meet his signed requests. The closeness of our relationship has been a vital element to making our experience work.

Practical support

In terms of practical support, I have a volunteer provided by Home-Start, a charitable organisation that helps young families through befriending and hands-on or emotional support. The weekly visits are a great chance to offload concerns, ask advice or simply rest while my son is taken care of by someone we have got to know and trust. Not specifically orientated to disabled parents, the volunteer and I have puzzled out the challenges posed by the restrictions to my mobility and enjoyed the journey together.

I have also been able to employ a personal assistant (PA) through the direct payment scheme. The PA helps me take my son out – whether it’s to the supermarket or to feed the ducks. This extra pair of hands has made going out possible since I have continued to rely on an able bodied person to take a pushchair rather than using a wheelchair adapted equivalent. Luckily, the recruiting and accounting side of the scheme has been assisted by a support worker and an upbeat care manager.

Establishing boundaries

If anything, chasing after a toddler is easy work compared to the slow and deliberate passage through my flat that I had got used to over the first nine months. Using one hand at a time to manoeuvre my self-propelling wheelchair, as I supported a little baby’s frame, was exhausting. In contrast, playing hide and seek with a toddler is in fact a lot less draining and a lot more fun.

Growing up with an acute sense of what’s off limits and what’s OK to touch, my son tests the boundaries but rarely crosses them. Establishing the guidelines early on has paid dividends in ensuring a safe but interesting environment for a little boy who is keen to explore everything around him.

Letting go of preconceptions

So how do I manage? Managing for me has been a combination of basic equipment, practical support and continuous innovation. Being a mummy who doesn’t walk has been much easier than I had anticipated. No longer held back by my own preconceptions has paved the way for wider avenues of experience and the discovery of useful techniques for meeting essential developmental goals. Far from struggling to carry out the basics, my fears have been diminished as I grow in confidence in my own abilities and my child’s own instinctual path.

As the saying goes, ‘necessity is the mother of invention’. Not being afraid to try things differently, and maintaining an open-minded approach, I continue to be led by my son’s curiosity and interests in achieving successful wheelchair parenting. More than anything I have learned that fearing the worst can prevent the best from becoming a reality.

Home-Start UK can be contacted at:
Tel: 0116 233 9955
Fax: 0116 233 023
E-mail: info@home-start.org.uk

Website: www.home-start.org.uk

First published DPPI Journal, Issue 59: Autumn 2007

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