Sunday afternoon. The sweltering sun lowly hangs over the white tents that have been mounted to shield the audience. Up on stage are children from the Sapling Trust Foundation charming guests.
Today’s occasion is part of an annual event in which parents and children in Nyali, Mombasa, participate in preparation for Christmas. It marks early Christmas for the excited children.
We arrive at the venue to find that most of the day’s activities have been concluded. One of the foundation’s trustees explains that they had to hasten their schedule because the children lose concentration fast and become restless.
“With special children, we have to engage them in activities as fast as we can, to jog and ease their memory and prevent them from becoming edgy before performing,” Peter Gitiha explained.
The fete is usually organised for children with disability who go to the centre for therapy. It is a bid to demystify disability.
Winnie Gitiha, also a trustee of the foundation, and her husband are a couple who know precisely what it means to bring up a child born with disability. And not one, but two.
When their second-born daughter came, it marked a fulfilled prayer for a family that desired to grow the home. Their hearts were filled with joy.
Although Victoria Kanini was born prematurely, at seven months, her parents were optimistic that her growth would not be deterred. And in her first months, Vicky, as she is fondly known by family and friends, was a normal child.
What her parents did not know or prepare for, however, was that her complete development would not happen without the aid of a therapist. And for nearly 17 years they moved from one hospital to another trying to get solutions to their daughter’s disability.
“When we got our daughter, we did not immediately know why she was different — until when she was 13,” said Mrs Gitiha. “She had hitched development, which was flagged by poor reading abilities.”
When Vicky was five, her parents started getting concerned about her development, especially when they noticed that she could not perform simple tasks such as unlocking a door. She was also unable to comb her hair, and when it came to writing, she would be slower than a normal child.
“Within a short time in a child’s development, a parent expects the child to grasp basic instructions — such as combing their hair and helping around in the house,” said Mrs Gitiha. “However, this was not the case for Vicky, whom I tried to teach how to wash dishes.
“Her milestones were delayed.”
At that point, the couple decided to seek medical advice from paediatricians in Nairobi where they lived before moving to Mombasa, where they sought further advice.
However, news that Vicky had dyslexia was not something that the family was prepared for.
“After so many years of wondering what was ailing our young daughter, we got to know about her condition after her remedial teacher hinted that she suspected Vicky had dyslexia,” Mr Gitiha recalled.
The information came after Vicky had joined a new school.
“We swapped schools because we felt that, possibly, Vicky could not just cope in a public school,” said Mrs Gitiha.
“Although we noticed that she had started retaining what she learnt, the news about her being dyslexic was crushing for us.”
Then, Vicky was 13. Heartbroken and confused, the couple sought help.
“Immediately after her teacher shared her suspicion with me, I decided to Google the condition” Mrs Gitiha added. “The results that I got were spot-on because the symptoms mentioned there were what my daughter was presenting.”
Dyslexia is a learning disability characterised by difficulty in learning to read. A dyslexic individual will also present problematic comprehension of language despite them having normal intelligence.
Because dyslexia affects some people more severely than others, symptoms may vary from one child to another.
Some children have trouble with reading and spelling while others may struggle to write or to tell left from right.
Dyslexia can also make it difficult for some people to structure their thoughts during conversation.
Having been advised that with therapy their daughter would slowly grasp content, the couple made appointments with an occupational therapist, who assisted Vicky to do hand-eye co-ordination exercises, muscle strengthening exercises and mind maps to help her remember what she learnt. Eventually, Vicky developed her cognitive abilities.
Script almost the same
“I was excited to see her read, memorise and use her hands” said Mr Gitiha with a gleaming face. “We bought many children’s storybooks for her to read.”
As if in a test of resilience, Mr Gitiha and his wife had their third-born child, Richard Mburu, also born with disability.
Richard, fondly referred to as Richie by his parents, was diagnosed with a brain condition known as floppy cerebral palsy, which causes forms of muscle and movement difficulties.
Floppy or hypotonic cerebral palsy is caused by brain damage or malformations in the brain structure.
“We realised that Richie’s neck was not stabilising when he was six months old,” said Mrs Gitiha.
Just as in Vicky’s case, doctors told the Gitihas that their son simply had delayed development and would eventually achieve his milestones.
“The script was almost the same,” says Mrs Gitiha, who decided to get a second opinion from a different paediatrician.
“I thought Richie would soon attain his milestone — until one day when, to our dismay, a doctor told us that he would never walk until much later in life,” a gloomy Mrs Gitiha said with tears clouding her eyes.
“We had not realised the gravity of Richie’s situation.”
Told that patience would be a catalyst to handling her children, Mrs Gitiha decided to exercise the virtue, which she says was not easy. Her first step was to quit her job as a banker, albeit against her wish. But she reasoned that her children’s welfare was superior to a job.
“I loved my job and the decision to quit was very difficult a pill to swallow, but I did it anyway since my children needed my undivided attention,” she said.
Just when she had gathered the will to care for her children, Mrs Gitiha and her family lost Vicky to a short stint of illness which was caused by digestion issues that led to her developing a distended stomach.
“To rectify the problem, we were told that our 16-year-old daughter had to undergo a colon surgery,” Mrs Gitiha recalled of her daughter. “Unfortunately, she never got back from the theatre alive.
Established centre for disability
“I really could not understand why Vicky had to die. She had already started picking up in school and was excelling….”
However, their loss did not deter them from giving their son full attention. To help Richie, his parents had to juggle a physiotherapist and speech and occupational therapists.
“It was cumbersome for us to co-ordinate the therapists and therefore thought of bringing them together under one roof,” Mrs Gitiha explained.
Despite the challenges they went through to raise their two disabled children, the Gitihas had the desire to have more children. Only this time, Mrs Gitiha was more worried than excited, for the fear of bearing another disabled child engulfed her thoughts.
“I was really upset with the challenges we were facing with Vicky and Richie that I never wanted to have another child,” she said. “When I learnt that I was pregnant, I wished to terminate it.
“However, I eventually accepted it when the pregnancy had progressed to three and a half months.”
In 2010, Mrs Gitiha and her husband partnered with two other parents who had children with disability and established a centre where such children could go for therapy.
“If we had difficulty coping yet we could afford the therapists, what about those families which could not afford it?” Mrs Gitiha asked.
At a cost of Sh500 per therapy session, Sapling Trust Foundation has seen the number of its clients rise from an initial 10 to 51, according to Mr Gitiha, who added that hospitals normally charge Sh1,200 for the same service.
Most of the money to run the centre, Mrs Gitiha said, comes from sponsors, who are willing to support the children.
“Most of our clients come to the centre after being referred to us by hospitals while we meet others during our children’s therapy sessions,” said Mr Gitiha. “Others hear about us through word of mouth.”
In addition to children, the centre also takes in disabled adults.
“We noticed a lot of improvement in the children when we brought the therapists under one roof,” added Mrs Gitiha. “They include an occupational therapist, a physiotherapist, a speech therapist, a sensory integration therapist and individualised education programmes coaches.
“This centre has since become a success because of the state-of-the-art therapy equipment donated by Safaricom Foundation.”
Mrs Gitiha observed that it is very difficult for a mother when she does not know what her child is suffering from, especially when the thought of the child’s suffering is inevitable.
“I would really scold my daughter when she forgot what I had just taught her and I used to yearn for the day my son would talk to me,” she said.
As if dealing with her agony was not enough, getting a live-in househelp was a nightmare.
“Househelps were hard to come by, and those who applied for the job would soon leave, believing that my children were bewitched,” Mrs Gitiha recalled.
She said it was not easy to care for both disabled and able children equally, as she would learn from her now 22-year-old first-born daughter, who felt neglected.
“Many parents who have special children tend to concentrate more on them while subconsciously sidelining the able ones,” said the mother of four.
“I remember when my eldest daughter was in high school, she once wrote me a bitter letter complaining that I never loved her enough.”
To handle the situation, Mrs Gitiha decided to involve her children in taking care of their brother. She also learnt how to distribute her time for them.
“Richie’s younger siblings are always happy to help him learn,” she said. “Whenever I am cooking they will always repeat what I was previously doing with him.
“We have also involved them in the activities at the centre, such as plays.”
Strike a balance
She said it is important for parents who have disabled children to embrace, love and care for them and similarly exercise patience with them without forgetting their other children.
“No parent would want to sideline her child but it happens subconsciously, and it is imperative to learn how to strike a balance,” she said.
Mrs Gitiha asked parents to learn that their children have different abilities and that they should tap into that potential instead of solely concentrating on school performance.
She recalled that Vicky was good with animals, adding that the girl loved pets and we could organise trips with a veterinarian during weekends.
“It is difficult to see parents who come to the centre who have not accepted the situation of their children,” said Mrs Gitiha. “Some have separated with their husbands because they have special children.”
She added with a smile: “My husband stood by me and encouraged me through every step.”