When Your Child is Different

Parenting a child that is different because of disabilities is a daunting challenge. Fortunately, 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

Cecilia* 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 one mother whose son 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 challenging, but also deeply rewarding journeys of our lives.”

Also read about the benefits of floortime for children with developmental problems.

let yourself grieve

Discovering your child has a disability leads to you going through the same stages as with a death – denial, anger, blame, guilt, questioning why and fearing 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.

While these stages don’t follow the same order for everyone, it’s vital you let yourself go through them all.

When a family has a child with disabilities, relatives and society often don’t know what to do or say. 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 (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.

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,” Professor Swartz 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.”

Achieving a balance can be difficult 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.

find support

“Unburden with others in a similar situation,” advises Professor 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.”

Sometimes, relationships crumble under the strain. 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 also for negotiating the minefield of professional and alternative health practitioners you encounter along the way. Ask parents you have connected with for recommendations.

start intervention early

Get professional help the instant you think there may be a problem with your child. 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. 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.

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,.

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.”

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.

Learn to stimulate your child yourself in different areas of development – physical, sensory and intellectual. 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.

Read what this father shares about loving his autistic son.

have realistic expectations

Don’t expect too much or too little. Give your child the chance to do things themselves before stepping in. 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 Professor Swartz. “In later life, parents who sacrifice themselves entirely for their children can become a burden to them, relying on them in return.”

Accept 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. However, some become more emotionally mature and compassionate.

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 Professor 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.