A special kind of mother

• Mother’s Day is a day to celebrate selfless love, gentle tenacity and unending inspiration. These are the stories of four women who have risen above the odds for the sake of their special needs children.

When a woman becomes a mother, she learns to navigate the novel experience on the job. Most mothers agree that all they want is the best for their children, but motherhood comes with challenges, moreso when it involves a child with special needs.

The lessons women pick up from observing their own mothers may not fully equip them to handle such a child. Many sometimes blame themselves and feel guilty for the anger they feel towards their situation.

Four mothers shared their experiences of raising their children in the face of challenges that they initially felt unprepared for.

Belinda Okotsi, 34, programme assistant, mother of three.

When Belinda had her second child, her first-born was nine, so she thought she was sufficiently prepared to become a mother again.

However, this confidence was shaken somewhat when she found out that her second-born, Xavier, had cerebral palsy.

At eight months, he had not achieved key milestones like sitting on his own, prompting Belinda to move from doctor to doctor seeking answers.

“As a mother you want fix your children’s problems. When I could not fix it, I felt like a failed mother and resented myself and the child,” Belinda says.

“Unlike with other children where you readily seek out other mothers, having a child with special needs makes you want to seclude yourself. You do not know how to deal with the reactions of people who do not understand your child. Children are bundles of joy, but in this case, it can be a painful experience.

“At some point I realised I was in a very dark room, but I had to rescue myself so that I could rescue my son, too.

“I have no illusions about Xavier and I know he will depend on me longer than my other children, but that does not stop me from wanting the best for him. I would love for Xavier to walk, go to a regular school and interact with other children and make something of himself.

“It is difficult to balance between my instinct to protect him and exposing him to the world, while making sure that he grows with a healthy self-esteem and confidence. I worry about not being able to protect him enough.

“Xavier has taught me to push myself beyond what I imagined a mother could do. If I need something to make his life better, I pray and pursue it until I get it, but my patience is tested because not everyone has the same zeal for my children.

“When I feel alone and overwhelmed, I draw strength from praying and meditating on Bible verses. Sharing with other parents in the same situation also helps me be a better mother to Xavier and my other children.

“It is exhausting trying to balance between my four-month-old son and Xavier, who is now six. I have learned to ask for help; there are many things I cannot do alone.

“I see myself as a special mother, with more responsibility and strength than an ordinary mother."

Edith Masika, 30s, human resource officer, mother of two.

When he was eight months old, Edith’s son, Emmanuel, had a seizure that saw him retrogress. He could no longer sit by himself and he struggled to achieve other milestones in his development. When he turned three, Manu was diagnosed with autism.

“Every mother has known the turmoil of having a sick child, but with a special needs child it is more intense and more frequent.

“There are seasons that I feel I cannot handle this situation, but surprisingly I always get through. Mothers have this amazing bond with their children that makes it difficult to give up.

“Initially I wondered ‘why me’. I could not always afford treatment for the seizures that occurred almost every week, but it got better. Moreover, it is one of those things for which I could not draw on my mum’s experience.

“I have learned to do what works for him – to make sure he eats the right foods and avoids those that trigger bad reactions, to make sure he does not play too much and that he gets enough rest. Mothering Manu is not easy but it stretches my patience and brings out the best in me. He is now nine years old and I am proud of him.

“I was scared when I was pregnant with my second child, Gabrielle, but she turned out fine. Manu needs more time and attention than his little sister but she has adjusted to the situation. She has had to grow up faster than other four-year-olds and as a mother I worry that she misses some of the joys of childhood because she has this permanent responsibility of looking out for her brother.

“I am not dreaming of Manu becoming a lawyer or anything like that, but I hope he gets to talk, to walk on the street and function on his own. That would be my greatest joy as a mother. Manu is more vulnerable than other children because he does not have the social etiquette that eases interaction with other people, but I do not want him hidden away from view. I want him to be understood and to experience a full life just like other children.

“The best way to appreciate mothers who have children with special needs is to give them the support they need. These children need specialised services that are out of reach for many mothers. Subsidised services would make it so much easier to give all children with special needs a better quality of life.

Karen Kibuchi, early 40s, head of ICT, mother of three.

Before Karen had Daniella, she had never met anyone who had a child with a disability. She already had two boys: Jerry, now 16, and Darlane, 14, and welcomed the thought of a daughter.

Daniella, nine, was born with Cornelia De Lange Syndrome (CDLS), but it took a year of consulting specialists before her condition was diagnosed.

Children with CDLS have multiple disabilities and tend to have slow growth, small stature, a small head, thin eyebrows which meet at midline, and a short upturned nose.

“When she was born, her arms were not fully developed. She had two fingers on both hands and was in and out of hospital for most of her first year,” Karen says.

“Having a child with special needs requires you to have more money for the specialised treatment and care, time, and flexibility. You exhaust all the possible leave days you can get at work and you still need more time for her.

“At first I thought that once her hands were fixed, she would be fine. The search for answers can be very painful, especially when no one can point out what ails your child. It was only after we sought help in the UK that I learnt that her condition was not curable. But it was also there that I learnt that having a daughter with multiple disabilities did not signal the end of the world.

“After Daniella enrolled in school I saw people with more severe disabilities integrated in society. They were visible everywhere I went and had access to buildings and transport and that is what I want for my daughter.

“While many mothers grapple with how other people will treat their disabled children, I have learnt that if you accept your child, it sets the standard for how others relate to her.

“Because of Daniella, I reach out to mothers – I started an organisation that doubles as a support group for mothers with children with multiple disabilities – and I use every opportunity I have to explain to children that Daniella is different but they can be friends with her and help her.

“A mother can easily get burnout if she tries to care for the child all by herself. I tell mothers to involve their family, friends and even neighbours in caring for the child. Support groups are equally important in keeping away depression – they help you realise that you are not alone.

“I would like my children to achieve the best; Daniella has abilities that can be developed. I want her to learn simple things that we take for granted like recognising her friends, picking her toys and daily self-care.

“I take one day at a time, because it can be stressful to think about the future, but I know there is a good purpose for her.

“The best appreciation for a mother with a special child is to recognise her efforts and to support her with free health care, and assistive devices. We do not need pity; we need to be empowered so that we can give the best to our children.

Winnie Odhiambo, 52, events organiser, mother of four.

By the age of eleven months, Cliff, Winnie’s first-born, had already started walking, and there was nothing to show that he was autistic except for his lack of speech.

“Those days autism was shrouded in mystery and I was told that my son was probably deaf, she says. “ When he turned three, I enrolled him in kindergarten but he could not cope because he was hyperactive.

“Being a first-time mother, I did not know what to expect. I kept hoping that he would speak and call me “mummy” but I have since learnt that there are other ways to communicate.

“When I learnt that my son had autism, I was distressed and I lost weight. I did not even want to have other children, but after I went to Jacaranda Special School and found children with more severe disabilities, I vowed to give him the best I could. When you accept your child, it makes it easier for people to support you compared to when you dwell on self-pity.

“After Cliff I got three other children, two of them two years apart. It was not easy having a special child and two little children because they all needed my attention but I got help from my family and I was able to cope.

“We all learnt to centre our lives on him and that made us a close-knit family. The scariest part was dealing with the seizures that occurred almost every week. Amazingly, when we got a dog the seizures stopped then resumed 14 years later after the dog died.

“His condition has made me very observant and alert and I can even sense a seizure before it happens.

“Cliff is very organised and has learnt how to take care of himself; that makes him happy. Now that he is turning 30, we try to involve him in our jobs. I take him to my place of work where we deal with events and catering and he can do simple things like passing things around and putting things in order. I am also teaching him how to put up tents so that he can make use of his skill in organising things.

“A mother’s prayer is to see her children grow, to set them on the right path, and to feel that her efforts have not been in vain. I am overly cautious, and my children tell me not to fuss too much over them, but it is ingrained in me. I do appreciate every little thing I see in them though.

“It is very expensive to bring up a child with special needs. A good mother’s day gift would be to have cheaper therapy and subsidised medicines so that children are not stuck at home because their parents cannot afford these things.