The purpose in pain of raising an autistic child - Daily Nation

Raising an autistic child led a mother to start a baking business

Sunday July 22 2018

Alice Nkara Saria at work at her shop Coco's Diet Kitchen located in Ruai on July 14, 2018. PHOTO | FRANCIS NDERITU

Alice Nkara Saria at work at her shop Coco's Diet Kitchen located in Ruai on July 14, 2018. PHOTO | FRANCIS NDERITU 

By MARION MAINA
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Alice Nkako Saria gave birth to her first born child, Evianna Johari,, on March, 24, 2011. She was her miracle baby after having tried to conceive in vain for over 10 years.

Evianna’s birthday coincides with that of her mom’s pastor, Theo, who had been praying for Alice and her husband to be blessed with a child.

Being an answered prayer, the Nigerian pastor was fond of Evianna and nicknamed her Evikoko. Evianna would giggle and mimic the pastor, “Koko, Koko,” seemingly loving the name. It stuck and they later changed it to Coco.

“Being a first time mom, I barely knew what milestones to look out for as I watched Coco grow from an infant into her toddler years. Coco was a beautiful baby who was always peaceful. She was also a great feeder. Her appetite, especially for pancakes and chapati, was nearly insatiable. Everything seemed to be going well. I had no cause to worry until she turned nine months without saying ‘mama’ or ‘papa’ as expected of babies at this age,” narrates Alice.

DIAGNOSIS

Initially, Alice and her husband James Saria thought Coco was having a normal verbal delay and she would later catch up. By the time they were enrolling her to kindergarten at slightly over two years, their daughter was still not able to speak.

At school, teachers raised concern over Coco’s restlessness. She was always up and down, walking on her toes and hanging dangerously off the rails. Unsure of what to do, Alice took Coco to Goodrich Academy in Kileleshwa, where she had been referred to by a renowned specialist in special education. She was then referred to Aga Khan Hospital for Coco’s medical assessment. It was there that she was diagnosed with autism at the age of three.

“I was in shock. The doctor went ahead to explain what this meant while making recommendations on the way forward. I could see his lips moving, but very little of what he said registered in my mind. The next few months were tough. I kept hoping that it would all come to an end and that my baby would speak, wishing away the whole situation,” she recalls.

After the diagnosis, Coco was enrolled to a Montessori school. Alice felt that it would give her all the support she needed to learn. Next, she started shopping for food free of gluten, milk and sugar to meet her new dietary needs as per the doctor’s advice.

Alice Nkara Saria plays with her child Evianna Johari, who is autistic, at her shop Coco's Diet Kitchen located in Ruai on July 14, 2018. PHOTO | FRANCIS NDERITU

Alice Nkara Saria plays with her child Evianna Johari, who is autistic, at her shop Coco's Diet Kitchen located in Ruai on July 14, 2018. PHOTO | FRANCIS NDERITU

She also started consulting with various therapists, who would assist Coco in developing her speech and motor skills. It was not easy for Coco to adjust to the new food. She began losing her appetite and her weight dropped significantly.

In 2014, Alice’s husband, a designer, lost his job. This was a huge blow to their financial status, and they could barely make ends meet. Coco’s special food, which was stocked in specific stores, was quite expensive. Her assessment fee came to about Sh12,000 while the therapy sessions were billed by the hour. It was time to make drastic changes.

They relocated from their Buru Buru apartment to Ruai, and decided to home-school Coco. Alice made some money from her mentorship programme, but that was not enough to even cater for Coco’s needs. They occasionally got support from friends, and Alice remains grateful to her former schoolmates at Alliance Girls for their support.

“With the new changes, I knew that I had to step up efforts to support my daughter. Her needs still had to be met whether or not we could afford it. So, I began chasing after specialists. I consulted with as many therapists as I could to get some guidance and tips since we could not afford to hire them. I read a lot about autism online and joined several support groups. I learnt some basic therapy online such as giving Coco sizeable chunks of meat for her to chew on and exercise her jaws. For her diet, I went with locally available food such as sweet potatoes and arrow roots. I could tell she was bored of eating the same thing all the time but what choice did I have?” She poses.

THE DIET

“We had not yet had any tests done to determine what she could or could not eat. To be safe, we followed general guidelines of eliminating gluten, sugar, dairy and omega 6 from her diet. Around that time, I took a step of faith and approached Dr John Onala, a specialist in early intervention for children with autistic spectrum disorders. I did not have any money so I requested him to do a free bio cellular test on Coco. He agreed. Armed with results and a better understanding of my daughter’s condition, I started experimenting with ingredients such as rice, fruits, oats to spice up Coco’s diet,” she narrates.

Then Alice realised she was expecting her second child. “Getting pregnant the second time was a tough decision. My greatest fear was: What if this child became autistic too? Bearing in mind what we had gone through with Coco, I didn’t know if I was ready to go through a similar experience. We decided, however, to let life take its course and refused to live in fear. My second daughter, Fahari, is now one-and-a-half years old. She is adorable. She gets along with Coco most times, but they have had their fair share of sibling rivalry,” she says.

Coco, due to her condition, was not allowed to eat sweets, biscuits, fries, crisps, cakes or even the chapatis she once enjoyed as a toddler. And this led to the birth of Coco’s Diet Kitchen.

The final push to start the special cooking procedure came when she ordered a birthday cake from a store in Nairobi that claimed to specialise in bakes that were free of milk, gluten and sugar. But when Alice tasted the cake, she immediately knew that something was wrong. She expressed her concern to the store. When she explained that her child had autism and couldn’t risk eating anything that had milk or gluten, they owned up to the misleading information about their cakes.

Shortly after, Alice took out her oven — a gift from her two college friends Anne and Salama — and started baking her own cakes and muffins.

Initially, she sourced recipes from YouTube, but she quickly realised that most of the ingredients used in diet bakes were either unavailable locally or very expensive. She therefore made a list of all the gluten-free ingredients she could think of and coined her own recipes.

Alice Nkara Saria at work at her shop Coco's Diet Kitchen located in Ruai on July 14, 2018.

Alice Nkara Saria at work at her shop Coco's Diet Kitchen located in Ruai on July 14, 2018. PHOTO | FRANCIS NDERITU

Her very first bake was the peanut bread. After getting a heavy endorsement from her husband and a smiling Coco, she decided to venture out and share the bread with Coco’s former teacher, Naomi, who also had an autistic son. They both loved it.

This gave Alice quite a kick, and she began experimenting with lots of vegetable products. She made muffins, pancakes and small breads that were relished by her first consumers – her family.

Confident, Alice decided to go all out and created a Facebook page, ‘Coco’s Diet Kitchen’. When she posted the peanut bread online in March, it attracted 11 orders.

“Coco’s Diet Kitchen did not have baby steps. It hit the ground sprinting. After the 11 orders, I kept getting orders for more breads and muffins. I posted photos of my bakes in the support groups I am in as well, since I knew many parents there could identify with the agony of finding healthy and yummy treats for their children,” she explains.

“I baked tirelessly from dawn till dusk alongside my brother Vincent to meet the orders. Business was booming and there was a need to branch out from baking from home to setting up a shop. In June, 22, we opened our first shop in Ruai. It has been six months of growth and expansion. In a day we bake about 20 to 30 loaves of bread and between 60 to 100 muffins,” she adds.

CHALLENGE

With close to 20 varieties of bread, muffins and cakes, Cocos’s Diet Kitchen promises to revolutionise dietary restrictions for people with conditions such as diabetes, obesity, autism and certain types of cancer. Currently, they deliver the bakes on order from Tuesdays to Saturdays along five major routes around Nairobi. She has five workers.

“One of our biggest challenges has been delivery. We have never missed to deliver on orders but it has been at great pains. However, a friend decided to invest in this business and recently got us a motorbike. This will ease our cost significantly. My vision for Cocos’s Diet Kitchen is to have a franchise of cafes where people can have coffee and enjoy delicious diet friendly pastries,” says Alice.

Her greatest win so far has been customer retention. They have never had an order returned. She has been writing down her recipes and does most of the baking herself. Quality for her is of priority, given the strict needs of most of her clients. Her recipes are written down and she keeps updating them with the hope of publishing a recipe book someday.

“Our customers are mainly online and referrals. There is a school in Parklands where we make deliveries every Friday. Other people without special conditions enjoy our bakes too, as part of promoting their well-being,” she says.

Thanks to Coco’s Diet Kitchen, Alice and James are now able to meet the expenses for Coco’s care. The have a full-time home teacher and they often attend therapy sessions at Dr Onala’s clinic in Karen. James is the sterner parent and has taught Coco how to dress, brush her teeth, feed herself and clean up.

Alice advises parents of special needs children to focus on the positives.

“Focus on who they are, their strengths and celebrate their milestones. A condition like autism comes with a lot of stress as it is both financially and emotionally draining. Marriages suffer and relations get strained. Moms resort to tears and dads remain stuck in denial. Do not project that stress on the child,” she advises.

“In our home, we have learnt to laugh when Coco pulls funny stunts. She is very agile and will sometimes curl up in very awkward positions. We are thinking of enrolling her for ballet. More importantly, find your strength. My husband and I are pastors and we can attest to God’s faithfulness this far. He has been our strength,” adds Alice.


AUTISM: EXPERT OPINION

Kenneth Apopa, the Founder and CEO of the Ready Aiders Foundation, answers questions on autism.

 

What is autism?

Autism is a neuro-developmental disorder that impairs the ability to communicate and interact.

 

What is the earliest age to detect autism on behavioural basis?

Autism can be detected at the age of three years.

 

What are some of the symptoms of autism?

Lack of or delay in spoken language, repetitive use of language and/or motor mannerisms (such as hand-flapping, twirling objects), little or no eye contact, lack of interest in peer relationships, lack of spontaneous or make-believe play and persistent fixation on parts of objects

 

Is there a known cause of autism?

There is no known cause of autism. However, researchers argue that autism might be caused by a combination of environmental, biological and genetic factors. None of this is established as scientific fact.

 

Is there a known permanent cure for autism?

There is no cure for autism. Autism is manageable. Children do not “outgrow” autism, but studies show that early diagnosis and intervention leads to significantly improved outcomes.

 

What does autism treatment entail?

Treatment of autism entails early diagnosis, acceptance as well as behavioural, educational and family therapies. These interventions may reduce symptoms and support development and learning.

 

Does the treatment vary as the child grows?

Yes, treatment varies as the child grows. The variation mostly depends on the child’s abilities and the severity or mildness of their autism.

 

What are some of the strengths of children and adults with autism?

In very many cases, children and adults with autism are known to have the following strengths and abilities among many others: Strong long-term memory skills; math, computer, musical and artistic skills, thinking in a visual wa, and hyperlexia, which is decoding written language at early age.

Some children with autism can decode written language before they can comprehend it. There are also details of punctuality, honesty and being detail-oriented

 

What is the extent of government support in terms of health care in Kenya for children with autism?

Most of the government’s attention has gone towards education — the government is doing very well with building special units in schools. On health, we are yet to see any substantial policies and programmes that cover children and adults with autism.

 

What is the link between gluten and autism?

Gluten is a protein found in grains like wheat, barley, oats and spelt. It is often difficult to digest. Foods containing gluten are hard to digest for such children.

What are the effects of gluten in children with autism?

For the children who are gluten intolerant, they may experience bloating, constipation, diarrhoea, abdominal pains, headaches, anxiety and depression in some cases.

 

Which food items contain gluten?

Bread, mandazi, cake, chapati, noodles and oat meals.

 

What are other dietary restrictions for children with autism?

In the top list of the diets that have been proven to affect children with autism include foods containing gluten and those containing casein. Gluten is found primarily in wheat, barley and rye while casein is found in dairy products.