Beyond disability: A chat with fathers raising children with special needs

father and daughter

A father playing with is daughter.

Photo credit: Shutterstock

Most stories we hear of parents’ involvement in lives of children with special abilities revolve around tremendous sacrifices made by moms; but there are extraordinary dads who are giving moms a run for their money.


Stephen Ndegwa Mwangi, 53

 Aaron

Stephen and his 12-year-old son, Aaron who has autism.  They chose to home-school Aaron after regular school failed to adequately cater for his special needs.
 

Photo credit: Pool

“I'm a father of three: Brian, 22, Stephanie, 17, and Aaron, 12.

“I'm a Communications Consultant, columnist and lecturer at the United States International University. My wife, Jane, is a stay-at-home mum. She runs a business on the side, which she juggles with being Aaron’s primary caregiver.”

Stephen says it was a normal pregnancy. However, before Aaron was brought to the nursery, the nurse told them there was a slight complication with his lungs and they had to insert a tube to pull out mucus from his lungs. Although the couple noted this red flag, they soon forgot about it as they happily took their new-born baby home.

The first two years were thoroughly enjoyable. Aaron walked on time and was a happy, healthy baby in general. However, the couple started noticing some delayed developmental milestones shortly after his second birthday.

“I had seen on TV that a child with autism does not make eye contact. This raised my eyebrows. By three years, Aaron could neither speak nor feed himself.

“We took Aaron to specialists who ran different tests. The intention was to rule out other underlying conditions. That was when they confirmed he was autistic.”

Stephen says the news was more of a concern than shock. He immediately became preoccupied with finding solutions rather than processing the diagnosis. He read everything he could lay his hands on that shed light on autism. As a couple, they joined several support groups to learn as much as they could about Aaron’s condition.

They took Aaron to a speech therapist a couple of times. But the cost was too high. It was not sustainable.

“The worst time for us was between the ages of three to seven years. We had not managed to cool Aaron down using diet. He was hyper-active. It was emotionally-draining. It still is. Yet, every day I show up and keep helping him because he’s my son. I can die for him. But then it gets to you. You are tired, but you have to try for him. He wets his bed and soils himself at night. You have to deal with that.”

Aaron is home-schooled. He has no speech yet, and is still unable to do some things by himself. His parents took him to a regular kindergarten, but hygiene demands made them withdraw him.

A situation like this can, at times, split apart some families. But Aaron has brought the family closer. They are all rooting for him. Sometimes Aaron gets hyper, even without provocation, and they have learnt to handle it.

“Aaron is an angel, so are my other kids. As a man, I have to make tough decisions and sacrifices. Raising Aaron has helped me embrace this responsibility. There is a lot of love in our family, which goes all round to every family member.

“I think I have risen up to the challenge to the best of my knowledge and ability. I have done the best for my son. This is a cause I’m passionate about. I started a movement on Facebook called, ‘Special Needs Dads’.

“Aaron has never changed my perception about fatherhood. If anything, my experience pushes me to speak to men and tell them not to abandon their children. Men need to be more proactive and aggressive in the way they take care of their children with special needs.”

There is a learning curve – not mistakes - while raising a child like Aaron. Stephens wishes he had known earlier, and started intervention at an early age. If that had happened – if he knew then what he knows now – they would've outgrown some milestones faster. That's a challenge with many parents. The diagnosis for autism is not well established in Kenya.

“I can't say we goofed. There is a lot of trial and error in autism treatment. But at the end of the day, I think love will conquer all. If my son is not able to outgrow autism, I just ask God to give me a long life and the resources to take care of him.”

Stephanie says his dad is the definition of a dad.

“Not all dads are perfect, but he tries to do his best. He makes mistakes, but they are understandable.

“A dad is a manly figure who mentors you throughout your life, and is there for you throughout your life. He provides for Aaron all that he needs. Dad gives his time to take care of us.”

Brian says his dad is very supportive and tries his best even when things are financially tough to buy everything Aaron needs, like supplements.

“Dad showers and dresses Aaron, takes him swimming and the amusement park. What my father does has made me a better man. Before Aaron, I never knew about autism, but looking at the way my dad has taken care of Aaron I would say it is helping me see fatherhood differently. It has made me see the sacrifices, and even when things are tough.”

Aaron loves cooking. He goes on YouTube and watches cookery videos. This is a gift the family wants to nurture; not for commercial purpose, but to keep him occupied. Who knows, he could be Kenya’s first autistic chef.

 Boniface Chege, 49

“I am a businessman in the ICT sector. I have been married for 17 years to Carol. We have four children: Benaiah, 14, Nancy, 12, Precious, 7 and Jayden, 4 years.”

“It was a normal pregnancy. On the day of delivery, there was some negligence. Precious was quite big. She tipped the scales at 4.3 kilos. When my wife was taken to the theatre, the baby’s head was pressed as the nurse tried to inject her with medication.”

When Precious was brought from the nursery, her head was swollen. A nurse assured her parents the swelling would go away. They tried to inquire from the hospital, but they were taken round in circles. A year-or-so later, they were told if Precious would have been given the right medication at birth and mild therapy, she would have recovered.

Apart from delayed milestones, Precious also developed a strange cry. When her parents inquired, the doctor told them their baby was different because of what she went through at delivery. He told them not to compare her with others. He further assured them her milestones would be late, but she would recover.

This back-and-forth persisted for two years, until someone introduced them to the Cerebral Palsy Society of Kenya (CPSK). It was during a therapy session at CPSK that Precious got diagnosed with cerebral palsy.

“The diagnosis broke my wife’s heart. When we accepted the condition, things became better. We don’t blame anyone. If you keep blaming others, you will not see your baby as a blessing, but as a burden.

“My wife was a businesswoman. We had a house help, but taking care of such a child, unless you have a heart of gold, is tough. Precious would gain some milestone after therapy – like seating posture or neck control – but they would return zero due to mishandling. As a family, we agreed my wife would quit work and take care of Precious full time, and we trusted God to provide for our needs. We have never lacked. She takes care of the baby with all the care and motherly love.”

Precious recognises her dad’s voice. She even responds when she hears him opening the gate. It’s only that her body fails her, but her mind is on his father. There are days Boniface takes care of Precious when his wife is away. Those are precious days where the father and daughter create life-time memories.

“I don’t hide Precious. There are men who have come through for me without mentioning it. They help, but don’t say expressly it’s because of Precious. One paid for therapy, others through prayers and encouragement. A friend recently told me I am an exceptional man. Others bought a special chair for Precious.

“She has shifted my perception of fatherhood, especially the aspect of caring. It has also brought bonding in our family, due to the kind of care she requires.

“Before you have a special needs baby, you don’t think about it. You can even have some assumptions. But when you are blessed with a baby like Precious, you relate to others and become more empathetic. I am not quick to judge. I don’t speak without thinking of the impact of my words. She has taught me to be considerate and gentle.”

When Precious’ siblings noticed she was different, they asked why, for instance, she couldn’t play outside. Boniface and Carol told them the truth. It was not easy for the children, but it helped them come to terms with their sibling’s condition and create a close bond with her. They talk to Precious because she can hear and understand.

In the initial days of occupational therapy, Boniface accompanied Carol and Precious to CPSK. But they both used to cry so much, as Precious’ limbs were turned and twisted. It traumatised Boniface. He requested Carol to excuse him as it was emotionally draining, and he couldn’t concentrate on work afterwards. But now that therapy is done at home, Precious doesn’t cry as much. Therapy has helped in flexibility as her muscles were stiff.

“Providing for Precious and loving her are some things I know I have done well. I protect her jealousy. I will not condone anyone speaking ill of her. We are the ones who understand what happened. Nobody will demean Precious. I am a present father. I am committed to my entire family.”

Nancy says of his father:

“He is a caring father,” Nancy says. “He loves us. He takes care of all our needs. He is God-fearing. He cares for Precious.”

“He is a hard-working father,” Benaiah says. He knows how to solve issues. He helps a lot.”

“If you ask for anything, even if he is tired, he will bring. He takes us to places where we don’t know and we get to experience new things. He is funny. He is forgiving even if punishes you. He loves us all the same, he doesn’t have any favourites. He is God-fearing. He is prayerful. He is encouraging.”

The soft-spoken Jayden says his dad is his best friend.

Godfrey Kimani, 50

Godfrey with his daughter, Matilda.

Godfrey with his daughter, Matilda. She is a deaf -mute and communicates through sign language. 

Photo credit: Pool

“I live in Korogocho with my wife, Irene, and three children; Ian, 23, Matilda, 16 and Roy, 9.”

We meet Godfrey at Light and Hope for Disabled Children, a Korogocho-based NGO. It’s here that Godfrey gets psychosocial support from the organisation’s founder, James Wanjiru, as – even here – men have mostly given this care-giving job a wide berth.

“I do casual work in and around Korogocho, while my wife runs a grocery business. The pregnancy was normal. Matilda was born at home with the aid of a community midwife.

“My wife attended the clinic the following day, and she was giving an okay. She went to the clinic the following day. Matilda was a normal baby to us. We did not notice anything untoward with her.”

It was after one year that they noticed Matilda was unresponsive when they called or spoke to her. She would only respond when touched or spoken to face-to-face.

They took Matilda to a hospital run by a non-governmental organisation. Tests were done, which revealed that Matilda was dumb and deaf. However, they were not told the cause of Matilda’s condition.

“We returned home even more frustrated. We did not know how to communicate with Matilda. We tried our best, but it was challenging because we didn’t know what to do. Nothing prepares you for how to care for a baby who can’t speak or hear.”

“At some point, my wife took Matilda upcountry to my father-in-law to try and help. You see, some people told us that perhaps this condition happened because Matilda’s grandfather was angry. ‘Maybe if her grandfather speaks to her, she will be well,’ we were told. But nothing changed, even after we followed this advice.”

When Matilda reached school-going age, Godfrey hit a snag because there is no school for deaf and dumb children around Korogocho. He got help from a Catholic sister and the Bible Society of Kenya, who referred him to Kenya Institute of Special Education (KISE). At KISE, got a referral and Matilda was admitted to Kambui School for the Deaf in Githunguri.

The family communicates with Matilda through rudimentary sign language, but it’s sometimes a hit-and-miss. Godfrey says communication is by far the biggest issue, as a lot gets lost in translation.

“Ian and Roy love Matilda. We have never explained to them Matilda’s condition. But we have told them they should help her, if the need arises.

“A girl child can be sexually abused and you will not know, especially in a place like Korogocho. For Matilda, because she is deaf and dumb, my fears are compounded. I also fear there are people who may not understand her. If, say, she is lost, because she cannot hear or speak, they may not know how to help her. These are some of the concerns I have.”

“I’ve never been ashamed of Matilda. I’ve been actively involved in her life since she was born. I’ve never met other fathers who have kids with special needs, to share experience and coping skills. Even here in Light Hope when there is a meeting, it’s the women who attend.”

“I feel most fathers are wameondokea hiyo mzigo. When you look at the women caring for children with special needs, a good number are single mothers because, I think, some fathers have shown a clean pair of heels.”

“When Matilda was in the Catholic Preparatory School, I used to drop. Our bond got tighter. Sometimes I had a few coins and would buy her a snack to eat on the way home. I think it made her look forward to our trips back home.”

Godfrey is concerned of what will be of Matilda after she completes school. She wants her to be independent and have the same opportunities as other children. But three things are working against her; she comes from a resource-constrained setting, and she has two disabilities.

“Matilda loves me. We have a great relationship. When she is angry, she seeks solace from me. Raising Matilda has changed my perspective on fatherhood. When I see a child with a disability, I feel for the child and parents. If the child needs help, I don’t wait for them to ask. I know what they are going through. I take the child as mine.”

The process of raising a child with a disability is fraught with faux pas. And Godfrey has had his share of them.

“There were mistakes I inadvertently made. For instance, when she would come to me and ask for something and I do not look her in the eyes.

“I learned that a child with a hearing and speaking disability wants eye contact when you are conversing. Whenever I did not give her eye contact, she would be upset. I know that now.

Godfrey has never been counselled on how to raise Matilda. These are nuggets he is picking on the go, sometimes at a great expense. Which means there is a gap in equipping ready and available fathers to care and support their children who have special abilities.

“When we have visitors, I always tell them they should maintain eye contact with Matilda while conversing. I tell them they should not ignore her. In my own small ways, I would love to help other men raising children like Matilda by sharing what I have learnt so far.”

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