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Fate tests a mother’s commitment after discovering the child has cerebral palsy

Readers Lounge By GARDY CHACHA

When we arrive at Malindi Cerebral Palsy Centre (MCPC) we are welcomed by Israa Fahmy, 9. The young girl is clearly excited to see us.

“Let me see this,” she says, tagging at the camera hanging from my neck. “What is this? Can I see?”

We are told Israa easily makes friends. She has a way of walking past social norms; charming her way into the hearts of those who meet her.

She is the girl who gives hi-fives. Her smile is radiant and genuine. She has an all-around nice personality – save for high levels of curiosity and impatience.

Israa is not your normal 9 years old. She was born with autism spectrum disorders; something that has made the last 9 years a rollercoaster for her mother, Saniya Bijad.

Some would argue, last weekend’s Mother’s Day, celebrated every second Sunday in May, was created for mothers like Saniya.

Yet, she is gracious in her experience. “I am just doing what any mother would do: taking care of my child,” she says.

But it isn’t always that automatic, is it? Some mothers take off. Some may even get rid of the baby at the earliest sign of trouble. But Saniya embraced her daughter with everything the girl arrived on earth with.

Carrying Israa’s pregnancy Saniya was ecstatic about her impending birth. Her previous attempt at motherhood had ended tragically.

“The first time I was pregnant I carried the baby to term but the baby died at birth,” she says. “It was painful considering that I had literally made it through 9 months.”

Once bitten twice shy. And so she guarded her second pregnancy. She did make it to the expected date of delivery. Then one day went by without a hint of labor. So did the second and the third until two weeks passed without Saniya going into labor.

“I went to the hospital and labor was induced,” she says.

Twenty-four hours later the baby hadn’t come and she was in immense pain. An emergency Caesarean Section was then done and to Saniya’s relief, both her and the baby looked fine.

That was until her doctor asked Saniya: ‘Do you see any difference between your baby and other children?’

The question spooked her. She did not know how to react. Was it a trick question? Was the doctor just trying to start a conversation? Was he suggesting that something was wrong with her baby?

Indeed the doctor was trying to draw her attention to something. Three months since her birth Israa wasn’t moving her neck. Her eyes didn’t follow objects, “like other children her age,” Saniya says.

“I knew something was not right: I just didn’t know what, and to what extent it would affect our lives,” Saniya says.

What followed were visits to specialists: a pediatrician, an ophthalmologist, a general physician, an infection specialist and so on and so forth.

“But no one ever offered conclusive diagnosis,” she says.

By month seven, unlike her peers, Israa hadn’t crawled. She was falling back on crucial development milestones. Saniya was getting worried.

Eventually, a year or so later, Israa crawled. But her development, at best, was at a snail’s pace.

As a result, Israa didn’t go to school until she was five. She didn’t have language skills and hadn’t looked ready to go to school at a time her age mates had joined formal learning at age 3.

And even when she went to school things did not turn out so well.

“First, there weren’t special schools for children like her. I took her to a school not far from home. I explained to the teachers that they may need to give her extra attention and even attend to her more private needs,” Saniya says.

Before the term could elapse Saniya had pulled her daughter out.

Israa, she learned, had become a target of mistreatment – even from the teachers who her mother had trusted.

“She soiled her clothes and pooped on herself and no one attended to her,” Saniya recalls. One time she made an impromptu visit and found her daughter sitting outside; isolated and still in her soiled clothes.

“That was it,” she says. “The pain I felt, seeing her soiled, left alone and crying, cannot be quantified.”

Israa suffered infections which Saniya says resulted from being left with faeces and urine for long periods of time while in school.

“I told myself I will care for her at home.”

Saniya could not hold a job as a result. Later she tried another school. While in the second school Israa was attended to with dignity, the head teacher was honest with Saniya and told her that Israa could only be helped in a school for children with special needs.

“The problem was that there weren’t such schools around here,” she says.

Saniya, who at the time was back to her parents’ home, had to shelve all other plans she may have had to squarely focus on raising Israa at home.

“I concluded that I will probably need to watch over her for the rest of my life. I accepted that she may never fit into a normal school.”

Saniya’s story is one shared by many parents of children with special needs.

Saniya is extra grateful to MCPC because the center would never have existed without well-wishers and humanitarian goodwill.

MCPC cost Sh2.2 million to set up. It is run by a community organization: Malindi Education Development Association Foundation (MEDA-F).

“The center is not a government institution. I don’t know of any special school the government has set up here for children like Israa,” she says.

Saniya is today dedicated to Israel's growth and development. “I may quit other things but not the wellbeing of the only child God has given me.”

Importance of a special needs school for a special needs child

Taking a special needs child to a normal school does not only waste time it is also an injustice to the welfare of that child, says Karima Naya, an administrator at MCPC.

“Teachers in a normal school have no skills to attend to a special needs child,” Karima says. “They are likely to do more harm than help.”

Karima draws attention to the fact that special needs children require special diets and daily physical therapy, unlike normal children.

“Diet alone is crucial. If you get it wrong at diet you will get it wrong with the learning process,” Karima says.

Before signing Israa for admission at the special needs center (which functions like a school) Saniya fed her daughter more or less like any other child.

“I would buy her ice cream and yogurt and other sweet treats,” Saniya says. Sugary foods, Karima says, work them up and disrupt the learning process.

Saniya took her daughter to MCPC in 2016. The school had just been set up with money donated by Kenya Community Development Foundation (KCDF) through their Pamoja for Change Initiative.

The building that houses MCPC was also donated by a well-wisher.

“The grant we applied for was a matching grant: MEDA-F provided Sh1.1 million and KCDF matched it; hence the total Sh2.2 million,” Attas Shariff, the founder of MEDA-F says.

For seven years Saniya could not find a school like MCPC. And she empathizes with mothers who have no special needs school close by.

At MCP Israa (and another 20 children) undergo physical therapy and sit through specially designed lessons on language and speech development, listening, art, computer lessons, environment science, motor skills, and life skills.

“At MCPC Israa has improved remarkably. She can now brush her teeth. She can speak a coherent language and communicate when she needs something. She can take herself to the toilet. It is only now that I understand how much she needed a school with personnel who understand her needs,” Saniya says.

She admits that while Israa would have been safe with her at home the young girl wouldn’t have achieved even half of the milestones she has surmounted at the special school.

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