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Parenting a child that is different because of disabilities is a daunting challenge, but there are steps that can help you cope.

Parenting children with disabilities is a lifelong journey of challenges, changes, learning and acceptance. The key to coping is to focus on the positive aspects.

Initial shock when disabilities are diagnosed

Nimoe has cerebral palsy with complications. “Nothing prepares you for hearing it, absolutely nothing, even if you’ve intellectually grasped it,” she says flatly. “On a deep emotional level, your very identity is under attack.”

“It’s all so alienating, so terrifying,’ says Durban photographer Angela Buckland, 48, whose son Nikki was diagnosed as “low-functioning” at three months. “One of the hardest parts is accepting there can be no proper recovery – it’s learning to let go, and just do your best.”

“I wept when the specialist said Tariq had autism,” murmurs Liza Aziz, 41, Durban filmmaker and founder of Action in Autism and its early learning intervention and resource centres. “But I also resolved never to give up on our son. And so began one of the most painfully challengin, but also deeply rewarding journeys of our lives.”

Learning to Cope

No two children with disabilities are alike, even if they have the same condition, says Jenny Head, principal of Pathways special needs centre for children with severe disabilities in Durban. Head is also the mother of a son with cerebral palsy. “So there’s no formula for dealing with a child with disabilities, no magic path. Every parent must find what works best for them and their particular child, family, and social and financial situation. But knowing certain things, and being able to find support, can make a major difference to how you cope.”

Let yourself grieve

When you discover your child has a disability, you go through the same stages as with a death, says Jenny – denial, anger, blame, guilt, questioning why you, and fear you won’t cope. “You’ve lost the child you thought you’d have, your dreams for their future and yours, and your way of life.”

The stages don’t follow the same order for everyone, but it’s vital you let yourself go through them all, says Adi. “Because I’d anticipated what was coming, I didn’t go through denial. I just said ‘Okay, this is what it is, so what can I do to make things better?’ And I didn’t grieve properly – there wasn’t time, with a screaming, very demanding child and work to take care of. Eight years on, I’m still often an emotional wreck.”

Relatives and people in society often don’t know what to do or say when a family has a child with disabilities and the embarrassment they feel often blocks them from offering helpful support to the family, says Stellenbosch psychology professor Leslie Swartz, author of Able-Bodied: Scenes from a Curious Life (Zebra Press) and co-author with researchers Kathleen McDougall and Amelia van der Merwe of a photographic book on disabled children by Angela Buckland, Zip Zip My Brain Harts (HSRC).

Express your emotions

“With other big life challenges, there’s often a beginning and an end to the difficulties, so it’s possible to imagine future closure and acceptance,” he says. “But with a child with a disability, parents have a long journey ahead of them with no end in sight – it’s a lifelong journey, and brings a change to every aspect of family life. At each stage of the child’s development, parents may experience a new sense of loss as they think about what they would have been experiencing had their child not been disabled. But they may also become more conscious of positive aspects.”

It can be hard to get a balance, and parents are often encouraged to focus only on the “specialness” of the child instead of expressing difficult emotions like anger, frustration and disappointment. But bottling emotions is unhealthy – they need to be released.

“Most mothers cope much as I did,” says Liza. “We cry, we shout, we fight and we busy ourselves in action!”

Find support

Unburden with others in a similar situation, advises Swartz. “No-one understands as they do. Parents often feel isolated because of the extra work and financial load, and it can be socially awkward to go out.”

It’s common for relationships to crumble under the strain. “If a marriage has a slight crack, a child like this can destroy it,” says Jenny. Some fathers are involved and supportive, but many men ignore their emotions rather than deal with them, and can’t handle the sense of failure or the demands of parenting a special needs child. Some escape in affairs or walk out.

Getting support from parents on the same journey can be a lifeline not only for coping emotionally, but for negotiating what Adi calls “the minefield” of professional and alternative health practitioners you encounter along the way. “Some are very good, but some are not, and you’re so desperate you’ll try anything,” she says. “Other parents can be invaluable, tipping you off about who is who, and offering practical advice and support.”

The best way to find parents in your area is to ask a medical professional. “Some say they can’t share patients’ contact details for professional reasons, but if you hear that, leave!” says Adi. “Decent doctors will gladly put you in touch.”

You can also contact organisations specialising in your child’s condition (see our 3D guide).

Start intervention early

Get professional help the instant you think there may be a problem with your child, says Jenny. Take them to be assessed at your clinic, local hospital or a children’s assessment centre, and always get a second opinion.

Once you settle on a professional you are comfortable with, do whatever therapy they advise. “It may not cure your child, but it will help them be the best they can be,” she says. Quality of life is not about abilities, but feeling safe, comfortable, well and loveable; being engaged in meaningful activities; learning as much as possible; and having achievements to be proud of, however small – even just being able to tie shoelaces. “Keep reminding yourself of this,” Jenny urges.

Help them be their best

In an age when medical science seems to have answers for so much, it can be hard to accept that there is no cure for your child’s condition. It’s one thing to explore realistic options, but you can unnecessarily prolong your grief and pain – and strain your finances – by following false hopes, say she and Adi.

These hopes don’t always spring from unscrupulous professionals being out to make money. Professor Swartz and his co-researchers report that doctors too can struggle to accept that there is no cure. Some then “heroically try to do more and more investigations to find a cause or cure when they suspect – or even know – this quest is hopeless”. Others try to protect themselves from a sense of helplessness and despair by trying to cut off emotionally.

“What we need to learn from are those encounters where both the parents and the doctor get it right,” they conclude. “Where it’s not about fixing problems, but about working together in a constructive, respectful and helpful way.”

“There comes a point where you must stop looking for an answer and just get on with it,” says Angie. Although each child is different, most respond best to intensive tutoring and stimulation. Depending on the extent of the disability, your child may be able to fit into a mainstream school or have to attend a school for children with special needs.

You can also learn to stimulate your child yourself in different areas of development – physical, sensory and intellectual, says Tammy Greyling, an occupational therapist at Pathways Pretoria. “Show them how to do as much as they can, from dressing to using the toilet – keep showing them over and over if need be.” Break down tasks and ideas, and use short sentences, simple words, gestures and pictures.

Have realistic expectations

Don’t expect too much or too little, and give your child the chance to do things themselves before stepping in, she adds. “Don’t criticise mistakes, encourage them to try again. And be sure to give them the chance to help you, even just sorting socks – everyone likes feeling useful and appreciated.”

Help yourself

Finally, look after yourself – for your child’s sake and your family, but also because you too have rights and needs, says Swartz. “In later life, parents who sacrifice themselves entirely for their children can become a burden to them, relying on them in return.”

Accept any offers of help. Take time for yourself, even if it’s just a relaxing bath while someone else watches your child.

Brothers and sisters can feel neglected or be embarrassed by society’s prejudice, especially when they are adolescents. But some become more emotionally mature and compassionate. One of Jenny’s daughters has become a counsellor and works with children with disabilities. “It’s very hard having a child with a disability,” Jenny says, “but they will always enrich your life.”

If you find you can’t cope, and have signs of stress and depression (problems sleeping and eating, constant irritability, headaches), or still feel angry or guilty, it’s vital you take action, says Swartz. “Talk it over with a trusted friend or doctor or get counselling.”

How to support parents with a child with a learning difference or special needs

Don’t:
  • stare or comment, they notice.
  • look the other way – make eye contact and smile.
  • give advice, they’ve heard it all.
  • offer well-meaning platitudes (“special parents are chosen to parent special children”); it’s patronising and can belittle their loss.
Do:
  • give practical help if you see they need it.
  • offer to do chores like shopping for them.
  • offer to sit with the child while they go out, or simply take a bath or nap.

Glynis Horning

 

Read what this father shares about loving his autistic son.