Parenting is hardwork. But nothing prepares one for the profound labour of love needed when you get a child with special needs. Our writer HENRY KAHARA spoke to Naomi Mwangi who has been learning to cope with her autistic child.
When Naomi Nyambura Mwangi learnt that her second born child, Kwame Kiemo, was autistic her heart sank.
The special needs teacher at iLab Africa in Strathmore University knew well what it meant to raise an autistic child having interacted with their parents in her line of work. Despite this she still never imagined being one of them.
According to Naomi things became different when her son, who was then two-years-old, began taking some medication prescribed for a fever.
The once bubbly boy became quiet, then hyperactive and sometimes even aggressive. In addition, he would cry all the time. Worried, she consulted a specialist who diagnosed him with autism.
“Our lives changed drastically and since then my decisions are more or less influenced by my son and a lot of attention is directed at him. I visited doctor after another in search of treatment. At one time, a doctor gave me a long list of dos and don’ts – some of the instructions were not even applicable.
When everything failed, I purposed to get into my son’s world rather than try and bring him into my world,” she explains.
Trixie Pujol, a clinical counselor and executive director at Kipepeo Therapies in Nairobi says the main challenge facing families with children who have special needs is finding the right person to assess and diagnose the problem correctly.
She adds, “Finances, cultural beliefs, stigma and best professionals to provide the intervention and therapies needed are also part of the challenges.”
Determined to give her son the best, Naomi buried herself in the Internet where she learnt more about autism. She came across an autism caregivers facebook group, which she joined.
She admits that at the beginning she was timid to open up about her son’s condition but through some encouragement from the group members she can now speak about Kiemo’s condition without fear.
“I was afraid of what people would think of him. But when I realised he wasn’t making any progress I decided to ask for help. That is when things started to change,” she reveals.
According to Trixie, the society ought to help break down stigma and negative cultural beliefs surrounding people with special needs.
She advises, “When you see a child in public who looks different or behaves differently do not make judgments, but rather offer a smile or a helping hand.”
Naomi admits joining the Facebook group has taught her more things about autism than she knew.
She notes that support is a key need for most parents raising children with special needs. And in her case it has contributed to becoming a better parent.
At the beginning she felt God was unfair to her since she had devoted herself to working with children living with special needs only for her to be given one of her own.
A strong believer, she says she later came to realise that everything works for the good of those who love God. Now she believes God wanted her to understand the parents she serves better through her son’s condition. Raising her son has given her special grace for parents raising children with special needs.
She has learnt to teach her child survival tactics, as this will help him to survive on his own when she may be nowhere near him. She has also taught him sign language.
“Kiemo is very good with images so my house is stocked with lots of images and whenever I need him to do something I just point out to the image,” she says, noting that understanding your child is key.
She has learnt not to compare her son with his age mates or siblings and instead tries to bring out the best out of him. In addition, she has strived to lower people’s expectations of him. Kiemo is now in class two.
Trixie points out that the country has limited resources in terms of special needs schools, speech therapists, behavioural therapists, and developmental paediatricians. Her appeal to the government is to provide more services to help such children as the available resources are overwhelmed.
One of the things Naomi is grateful for is the overwhelming support she receives from her husband.
“Some men run away from home when they realise the huge responsibility of caring for a child with special needs but my husband has been extremely supportive. Even at beginning when he seemed not to understand what was happening,he would support us from behind the scenes. He is now able to talk openly about our son’s condition,” she says.
She adds that her ten-year-old firstborn daughter has not been very comfortable with her brother’s condition but mum and dad have been teaching her to embrace him as he is.
Naomi’s advice to parents with special needs children is to set standards on how they want other people to treat them.
She advises parents not to neglect themselves as they have a life beyond caring for a child with special needs. Trixie agrees with Naomi’s sentiments and states that most parents with special needs children rarely find time for themselves.
“It’s even hard for families to find house helps and when they do, some may abuse the children. Family members too are hesitant to help out with childcare,” she notes.
According to Trixie, the biggest misconception about children with special needs is that they cannot learn and be successful.
“Children with special needs often have special skills and talents and can grow up to use these talents,” she says and insists that if given a chance, these children can be successful like any other person in the society.