Extraordinary motherhood: Why special needs parents have something special

Award-winning poet Heather Lanier recently wrote about the pressure the society puts on parents with special needs children ‘to perform happiness’.

In an article, she explores the challenges of a friend whose child has a chromosomal disorder.

As soon as she mentioned her son in her counselor’s office, she began to cry. So the therapist asked, “Why do you always cry when you talk about him in here?”

The friend looked up at the ceiling and wondered: “Why do I always cry when I talk about him in here?” When she finally got an answer, she explained it in between sobs: “Because out there … when I’m talking … about him … I have to smile.”

Heather had been in a similar position. She had smiled at the nurse that called her child’s name in the hospital waiting room, and as she led them around for X-rays. She smiled at people who stared at her daughter and her, when, as she unfolded her little one’s walker, it clicked loudly.

She also smiled while her daughter’s teacher talked her through her low report card scores, because she had to look happy, or else people would say that her child made her miserable.

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My baby, my life, my everything

Monicah Sunguna, 36, has not only faked smiles at people who looked weirdly at her daughter, she has cried her tear ducts dry. For two years, she refused to meet friends or welcome visitors. Each morning, she would get out of bed, take her breakfast, and then just sit on the couch till evening. She even stopped making and/or answering calls.

Some unannounced visitors avoided holding her baby, others blamed the child’s condition on witchcraft. Relatives flaunted the ‘clean’ family tree and, one by one, avoided her. None of them ever questioned why and how the baby’s condition came to be. The stress took a heavy toll on her, and her breast milk dried up.

While her pregnancy was uneventful – she attended all antenatal clinics and did everything that her gynaecologist asked her to – her birth wasn’t.

“My baby was overdue and I was due for an induction. On my way to the hospital, the contractions began and continued during the process of admission to the labour ward. When I felt the baby was descending, I alerted a nurse, and she set me up in preparation for delivery,” says Ms Sunguna.

“When the baby finally came out, she did not cry, and had no heartbeat. The nurses called a doctor to resuscitate her, then she was rushed to the ICU,” she offers.

The baby never cried for two months. Even when the doctor’s needles pricked her skin, she didn’t. When she felt hungry, or soiled her diaper, she kept quiet. Not even when she was bored or sleepy.

She fed through tubes, the only noise coming from the beeping sound from the ventilator. At birth, she had suffered shoulder dystocia that caused a temporary loss of oxygen to her brain. Medically, this can happen in a number of ways, including prolonged pressure, compression of the umbilical cord and excessive trauma.

“When I asked to hold my baby, I was told I could not. The only constant response I heard was, “mtoto ako na shida” (there’s a problem with the baby). When they finally released her to come home, they told my husband and I that our baby would perpetually drool, and would regress in her milestones. They never told us that she had cerebral palsy,” recalls Ms Sunguna, adding that they would find out about their child’s condition when a friend referred her to a neurologist.

They took their baby home and her siblings began asking questions. They wanted to know if their baby sister would sit, eat on her own, walk, run and play. They wanted to know why she was different from others and the cause of the convulsions.

They asked if their sister would ever get better. The common answer, their mother knew, was a definite ‘No’, and each time she had to respond, her eyes brimmed with tears.

The baby needed round-the-clock attention, including therapy sessions twice a week. Ms Sunguna was a teacher in a private school then, and her baby’s life and care outweighed her job. Her boss would never allow her to be off duty two days a week, so she quit.

“Quitting my job was tough, but it offered a relief because then I could focus on my baby. I also did not trust anyone apart from my other daughter to take good care of her baby sister. When we finally hired a house-help, it took a while before she could adjust, especially with the convulsions that would scare her. Eventually, she got used to it and she now treats her as her own,” says Sunguna.

Her daughter is now four, and she is thinking of home schooling her.

“Lorna has needs that would be exhausting to take care of if she goes to a school. I am a teacher, so I will home-school her. Her needs range from feeding, to cleaning her up. She cannot chew, so we have to blend her food. She also eats slowly; we can take two hours feeding her a single meal. She still uses diapers, so I have to always be around,” she offers.

The family has accepted that there are things that Lorna may never get to do, such as crawling, or walking, or running.

“When she turns five, we will get her a wheelchair that she can move around in. As she grows, we expect anything. The drugs she is using make her grow so fast; she is already tall for her age,” says Ms Sunguna.

Moving around is a challenge because her baby’s low immunity means she’s vulnerable to infections.

“We rarely travel up country, because the weather there is hostile. If she develops an infection, it would be hard to meet a neurologist, and even if we were to find one, the hospital would be far away. We also do not take her to church, even pre-Covid-19. Some family members go to the first service, then return home to look after Lorna for the others to attend church,” says Ms Sunguna.

Lorna has been on medication since the third month, when she got out of hospital. They started with syrup, now she takes three crushed tablets a day, which cost Sh16, 000 a month.

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35 years of pain and suffering

In Eldoret, Rosemary Birir’s son is epileptic. Her pregnancy was also uneventful, and the delivery successful. Her son began exhibiting symptoms of the disease when he turned four.

“He had just joined pre-school, says Mrs Birir, when he fell and fainted while playing with his friends. We rushed him to Mercy Hospital in Eldama Ravine, but the doctors told us to return home because he was, apparently, just asleep.

The next day, he convulsed, taking about 10-15 minutes before the next convulsion. They rushed back to hospital. From then on, it became a routine, sometimes spending almost half of each month in hospital.

Somewhere along the way, they gave up.

“We got discouraged because he was not getting better. The doctors never found out what exactly was causing the convulsions, and we got the same drug over and over. The medication was also expensive, and NHIF only covered him until he got to 18 years. He is now 35, and takes two tablets daily. Each costs Sh40. If he doesn’t take the drugs, he gets worse,” says Mrs Birir.

“When he got to his ‘20s, the convulsions stopped. However, when he is unwell, even with a common cold, it triggers convulsions. Usually, when he is about to, he will make loud noises. Then you will hear a thud, followed by rapid movements. If he is in bed, you will hear it squeaking,” says Mrs Birir.

What follows, for any caregiver who is with him, is to make sure he lies on his side to avoid blocking his airway. If he has food in his mouth, the caregiver must ensure it is picked out to avoid choking.

The condition has paralysed one of his hands and legs, and sometimes needs help to feed himself.

“Even though he can do some things for himself, we still need to care for him. The problem is that people tend to hide these children,” she offers.

She recalls the stigma she faced while her son was growing up.

“We were thrown out of many houses that we had rented because my son broke windows or was rough on our neighbours’ children. We moved houses at least four times. Sometimes people stopped their children from playing with him, thinking that his condition was contagious. There are times I cried a lot, asking God what I could do to make my son calm down to reduce the stigma,” says Mrs Birir.

He couldn’t attend school because he needed a caregiver with him. House-helps came and left, scared of his convulsions. As a teacher, she was always at home checking up on him when not in class.

Her other son, Kiplagat, says his brother’s illness has deeply affected him. It is always difficult to see his brother in pain, especially at night, due to insomnia or convulsions.

“When we were young, people would say he was possessed, or crazy. I didn’t like it, so I used to hide him when friends came over. I was guilty about it for a long time, before accepting his condition,” he recalls.

His parents tried different medicines and ‘faith healers’, which shook his faith in God.

“I have cursed at God so many times. I decided not to believe in his existence because he let down my brother,” says Kiplagat.

“My brother has never had a social life. I know he would love to go out and try his luck at courtship, but it would be a task. He has never spoken about it, but I think it does eat him up.”

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Neighbours were hostile to us

As far as social life is concerned, Telvin Mwania, 10, has none. He has no friends and the only thing he offers when he sees other children play, is a beautiful, pure smile.

When his family moved to their current neighbourhood, some of the neighbours were hostile towards him.

“He would be walking around outside, then sees his favourite cartoon on our neighbour’s television. Because he can’t get in, he would peep through the window. Some neighbour once slapped him and chased him away. When they understood his condition, they stopped harassing him,” says Maryanne Njung’e, his mother.

They are always in the house during celebrations, because none of her friends, except one, invited Mwania for their children’s birthday parties.

“My own friends talk about my son behind my back. They say, ‘sasa huyo utamualika aje na hakai poa’ (you can’t invite him because he has special needs). When we invite other children during his birthday, only one friend comes. She is the only one who gets along with him,” says Njunge.

Mwania was delivered after a two-day labour and while at the throes of joy, she never understood what the nurse meant when she said the baby, due to the prolonged labour, would be slow.

Like a prophecy fulfilled, Mwania was painfully slow at achieving his milestones.

At 18 months, he had not started walking, let alone grasp at chairs or his mother’s legs at an attempt to stand on his little feet. At two years, he could not speak, or blabber like babies do from four to six months.

“I got worried and took him to an integrated school for a test. We were referred to a hospital, and the doctor told us to wait until he turned five, because there was a possibility that he had delayed speech. He was two then, and he had eventually started walking,” recalls Njung’e.

When he turned five, she took him back, and the doctor diagnosed him with autism. He then referred them to an occupational therapist, who worked with the child until he could speak a few words.

Maryanne got a job, and hired a house-help.

“The first one was good, but she left to get married. The next one would leave him alone for up to five hours in the house without food. He cannot talk, and doesn’t know what to eat and what not. If he found stale food, he would eat it. He could even eat his own poop if he was hungry and alone. It took the neighbours’ intervention for me to find out,” says Maryanne.

At school, the teachers did not know how to deal with him.

“He has a very short concentration span, and cannot stay in one location for more than five minutes. The teachers would let him roam around while the others studied,” says the mother of two, adding that she eventually had to pull him out of the school.

She’s now on her maternity leave after delivering her second baby, and during this time, she has realised one thing about her son.

“Such kids usually love just one thing. Mine is into SpongeBob cartoons. There is a specific one that he likes, a very short clip of about 15 seconds, but he will stay at it, watching it, replaying, forwarding and reversing it even for an hour,” says Njung’e.

Taking care of Mwania’s financial needs has been a challenge, because the man she’s married to isn’t his biological father and doesn’t support him.

“You will be married, but feel as if you are single because you are the only one who supports the child,” she concludes.

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Don’t wallow in self-pity

The three mothers are united in the sense that they have vowed to confront their challenges head-on rather than wallow in self-pity.

“For those who understand us and seek to know more, we open up to them. The rest we ignore because it would be emotionally draining,” notes Ms Sunguna.

The sentiments echo Heather’s comment that many of such parents have to play happy in public, yet they are drowning in sorrow.

“For bodies that don’t fit into a certain mould, for bodies we call disabled, out there: can be a treacherous space, it has steps where you need a ramp and strobe lighting that could make you seize. Out there writes stories over your body (she’s sad, broken, wrong) when you just need toilet paper,” she writes.

“It tosses questions at your feet like it’s throwing you something between flowers and rotten fruit. Why’s she so small? What happened? What’s wrong? You answer with a smile, or you answer with fatigue, or you turn your head because none of your business.”

Out there is inconvenient, she says, explaining that most of the times, the doorway isn’t wide enough for a special child’s adaptive stroller, and that the wood chips of the town’s only playground are terrible for wheelchairs.  In simple terms, Out there is not exactly designed for special needs children.

Ms Sunguna mentions something that Heather notes in the article. That while the birth of a child is a cause of celebration for parents, it is different when she/he comes with a serious disability, and that some may even regret giving birth to that baby.

“People tend to hide these children. If a special needs child is a person’s firstborn, a person or a couple can dread having another child, out of fear that the new baby will also be a special needs child,” offers Ms Sunguma.

According to the 2019 census, 2.2 per cent (0.9 million people) of Kenyans live with some form of disability. The census indicated that 1.9 per cent of men have a disability compared with 2.5 per cent of women, as compared to 3.4 per cent for men and 3.5 per cent for women in the 2009 census.

The 2019 census also reported that there are more people with disabilities living in rural than urban areas. Analysis of prevalence rates by residence shows 2.6 per cent (0.7 million) of people in rural areas and 1.4 per cent (0.2 million) of people in urban areas have a disability.

Analysis of disability by domain reveals that mobility is the most commonly reported difficulty, experienced by 0.4 million Kenyans and representing 42 per cent of people with disabilities. The other domains of disability – seeing, hearing, cognition, self-care and communication – are experienced by between 36 per cent and 12 per cent of people with disabilities. Albinism is a condition experienced by 0.02 per cent of Kenya’s population.

Some of the reasons include Stigma associated with acknowledging disability might have prevented accurate reporting and the translation of disability questions into local languages which may have been hindered by issues of contextualisation and cultural nuances

However, as far as generating statistics on disability is concerned, the main challenge is the lack of universally accepted standards for categorising disabilities, and finding a method of data collection that navigates potential issues of stigma.

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