Simaton Mpaayei : Helping special needs children

Simaton Mpaayei is the managing director of Therapy for Kids (T4K), a centre that provides occupational, speech and language, physiotherapy, sensory integration and nutrition therapies that address children and young adults’ developmental and behavioral challenges. Being a parent of a child with special needs, she knows too well the struggles of such parents as she shares with MWAURA MUIGANA.

 When I visited Therapies for Kids (T4K) located on the first floor of Greenhouse on Ngong Road in Nairobi, I was impressed by the ambience. The centre is set immaculately with six beautifully designed cubicles called PediaSuits. I didn’t wait to be asked to remove my shoes. I placed them on a rack as I saw everyone do and was then escorted in.

I could hear soft music from the PediaSuits. I peeked in one of the suites and saw a child seated on what looked like a complex machine and there was a therapist attending to him. I noticed similar activities in all the other suits as we walked through. Amazed at how different this place looked compared to most hospitals with physiotherapy or occupational therapy departments, I complemented Simaton on her effort.

“The choice of this kind of atmosphere is very deliberate,” she says as we settle down for the interview.

Simaton recalls the challenges she faced caring for her child who has special needs. “For a long time, I was gloomy and meeting other parents wearing long faces at Kenyatta National Hospital’s (KNH) physiotherapy department didn’t make things any better. I resolved to change things and give the care of special children a positive outlook in a conducive healing environment through T4K,” she explains.

T4K works with children who are impaired using planned programmes that involve parents and caregivers. The impairments include cerebral palsy, Down syndrome and autism. There are also children who don’t seem to have any physical problem but have issues coping with life or catching up with schoolwork such as dyslexics. Through the help of special education teachers at the centre, these children with special needs eventually learn to cope in school and life in general.

The centre also has psychologists who offer therapy to children involved in traumatic events in their lives. The centre aims to help such children get well enough to be integrated back to school and the community.

T4k came about as a result of Simaton’s painful journey in search of medical care for her son who was born with special needs. “When I got pregnant with our first baby in 2001, my husband, George, and I were very excited. However, six months into the pregnancy my baby stopped kicking. I became anxious and shared my concern with my doctor. He reasoned that I was being fussy like most first time mothers,” she explains, adding that the doctor told her that babies’ movements in the womb reduce as they grow.

Dissatisfied by the doctor’s explanation, Simaton requested for a scan to confirm that her baby was okay but the doctor declined and instead recommended that she gets some bed rest.  “I couldn’t just go home and so I checked myself into the Nairobi Hospital and asked for a medical review,” she says. Initial tests pointed to a deeply distressed baby who wasn’t moving and whose oxygen supply to the brain seemed non-existent. A scan was done and the results necessitated an emergency operation to save the life of the baby. Her son, Mayian, was born weighing only 900 grams.

Seeking treatment for my child…

Mayian remained in the intensive care unit for three weeks and was transferred to an incubator for another three months. “We assumed the hospital stay was only for our tiny baby to gain weight. And so at four months and weighing 2.5 kilograms and without a word on anything we needed to look out for, we were told he was fine and discharged from hospital. His growth was painstakingly slow and we shared our fears with a doctor who attributed it to the traumatic birth and assured us that Mayian would catch up. But at nine months he couldn’t sit on his own, had no head control and wasn’t active like other babies. We knew our baby was not okay but we didn’t know what the problem was,” Simaton explains.

“We sought the opinion of another doctor on my mother’s recommendation. After examining Mayian, this doctor disclosed to us that our baby suffered from cerebral palsy due to a brain damage. This news hit us like a bombshell and totally devastated us because we didn’t even know what cerebral palsy was,” she continues to explain.

This doctor referred the baby to KNH for physiotherapy – another strange terminology to Simaton and her husband. They felt bitter and betrayed not just by their personal doctor, but the many other doctors they had consulted in search of help for their son. They had been thrown into the deep end to figure things out for themselves. They wished they knew a parent with a special needs child they could share experiences with.

“Many people painted a hopeless picture on the future of our son. One woman summarised the stigmatising negative voices in the society when she walked up to me in a supermarket and offered advice that a child like mine should be confined at home and not let outside. In church, people turned and stared at Mayian strangely and kept asking me what was wrong with him and this really put me down. I stopped attending church and other public places to avoid such scenarios,” says Simaton.

Desperate search for a solution…

The pain of seeing Mayian in that terrible condition – completely immobile and often staring at one spot – made his mother go far and wide in search of solutions. She moved from one hospital to another in search of physiotherapy and occupational therapy services hoping to find a place that could make her son better. She was shocked by the reality that these services are rare in this country. For instance, today there are only eight speech therapists in the country and are all in the private sector. Most of them are foreign trained.

“I needed someone to give me a solution, to tell me it can be done, and that our son would make it through life. I witnessed the agony and desperation of parents with special needs children and resolved not to look sad or cry again. I was going to find a solution no matter what it took, ” says Simaton.

After intense research from books, the Internet and any other available sources of information about her son’s condition, she learnt that cerebral palsy is the paralysis of the mind and its severity depended on the part of the brain that was affected. Although the condition is not curable, it can be managed by therapy.

“I noticed my son getting irritable whenever I took him to hospital and decided to employ a therapist to be coming home. Though it was comforting to know I didn’t have to take my son to hospital, the drawback was that the therapist was not supervised and I couldn’t tell if he was doing the right thing. It also didn’t help that house helps came and left quickly as they found it difficult to care for Mayian. Nothing seemed to work but I wasn’t going to give up,” says Simaton.

Help comes via the Internet …

In 2008, Simaton connected with a couple in Florida, USA, through the Internet who had rehabilitated their special child through a therapy called PediaSuit coupled with intensive physical therapy. The PediaSuit machine aligns the body as close to normal as possible and therefore plays a crucial role in normalising muscle tone, sensory and other stalled bodily functions.

This universal exercise unit is used to train a child to gain the ability to isolate the desired movements and strengthen the muscle groups responsible for that movement. One gains a range of motion, muscle and joint flexibility, as well as functional skills. Use of the machine combined with intensive physical therapy results in improvements being achieved sooner than with traditional physical therapy.

The couple had established a PediaSuit centre in Florida, USA, to help more special needs children after they achieved good results with their child. They later opened similar centres in other parts of America, Europe and the only one in Africa at the time was located in Egypt. Simaton was convinced therapy at the centre in Florida was the solution she sought for her son but needed over Ksh1.5 million to facilitate travel and therapy for six weeks. With assistance from friends and her employer at the time, she was able to take her son to the US.

“Despite therapy at the centre being very intensive, Mayian’s condition didn’t improve in the first week. By the middle of the second week, I contemplated returning home then one day I put my son on the floor with his toys hoping for a miracle. Unbelievably, I saw him turn to reach out for the toys and he turned again and again.  That was the sign I had prayed for, for a long time. There was no turning back. With continued therapy, Mayian improved gradually and was much stronger,” says Simaton.

Although Mayian wasn’t walking by the time they were scheduled to return home, he could roll over. Simaton’s next goal was to buy the therapy equipment to take back home. It made sense to do so, as she could use the equipment to help other children besides using it on her son, as she could not afford continued therapy in Miami.

Establishing therapy for kids…

“On returning home and seeing how well my son was doing I negotiated with the Florida centre to help me open a centre in Kenya and train physiotherapists for me. One PediaSuit and equipment to go with it at the time cost Ksh 380,000. A suite serves one child at a time hence more than one suit were needed if I was going to help more children. Additionally, I needed to get two professionals to fly to the US to train as therapists and I had to meet their airfare and accommodation for a month. It was a gigantic financial project,” recalls Simaton.

The Florida company agreed to help but needed money to buy the equipment paid first. They also agreed to come to Kenya to help her set up the centre and also train therapists. In May 2011, Simaton and her husband made a decision to sell their house in Nairobi’s South C estate to raise the money. They paid the money required and the Florida company sent people to Kenya to help Simaton set up T4K in their property in Lang’ata.

“Word got out that we had this facility and no sooner that the equipment had been installed than a mother from Kibera knocked on our door carrying her son, Sammy, who had cerebral palsy. Seeing how desperate she was, I allowed her son to get the therapy for free. She walked into our compound every day with her son strapped on her back. Not only did we give her son the therapy, we also fed him and provided clothes as the mother was very poor,” says Simaton.

“With time, his condition improved and Sammy started walking unaided. His speech also improved. He did so well that he was able to join a normal school. His happy mother returned to their rural home in Meru where she had previously been rejected for giving birth to a special needs child. She was accepted back in the community. Inspired by Sammy’s improvement many parents from Kibera streamed in our premises with their mentally and physically challenged children seeking help. My staff was under instructions not to turn away anybody,” she says.

“T4K, to most people, became a free place for therapy. We started getting very busy and I was very happy because the interaction between these children provided a therapeutic environment for them, my son included. Well-to-do parents who could afford to pay for therapy also brought in their children and what they paid helped those children from poor backgrounds get free treatment,” adds Simaton.

From a humble beginning T4K started to grow with many people seeking help for their children. Good Samaritans today help sponsor needy kids for therapy at the centre. Any amount of money is always welcome as it goes a long way to helping children from poor families. T4K encourages anyone who knows a child in need to bring them to the centre regardless of whether they can afford to pay or not. Many children have been rehabilitated back to school and community after therapy.

T4K has developed its flagship initiative called ‘Adopt a child.’ This initiative encourages individuals and corporate organisations to commit to facilitate therapeutic care of a specific child for a determined period of time. The needs vary depending on each child and the severity of their impairment. On average, each child needs daily therapy to recover well. At an average cost of Ksh 2,000 per session, the basic monthly package per child is Ksh 45,000. For many families this is a daunting amount of money and they need help to meet these costs.

Build a kitty for a child…

The second initiative started by T4K is called ‘help build a kitty for a child’. This initiative solicits for donations regardless of size and all the money received goes into a common kitty, which is allocated to different children. The centre has reached out to children beyond Kibera and Lang’ata to as far as Umoja, Embakasi, Dandora and Kwangware. Currently there are 93 children attending regular therapy, the oldest being 28. There are more than 110 profiled children who need to begin urgent treatment. Due to the growing demand of their services, T4K relocated to their current facility in December 2012, which is more spacious and easier to access.

The therapists at the centre are trained to handle children and adults as well as do rehabilitation for people recovering from strokes and other debilitating diseases as well as accident injuries. The centre is in dire need of a van to pick children from their homes as most of the parents don’t have personal transport and many public transport operators refuse to carry children who are on a wheelchair. Many mothers are forced to carry their children on their backs and walk to the centre.

Mayian is now 12. He can draw, sit and is quite a chatterbox. He attends school and is a much more independent boy and a very happy one too. He and his father share a very special bond, while his two younger siblings are ambassadors of the disabled and can’t stand anyone who stares at their brother. They will defensively tell the person on their face that Mayian is okay and has no problem.

You can contact T4K on:

Mobile: 0725 366 441

Email [email protected] 

 

Website: http://www.therapiesforkids.org

 

 Published in July 2013