“I was not a church girl,” Kate told me. When they moved to Nairobi from Bungoma, Otido attended church every Saturday and wanted her to accompany him. “ But my Saturdays were for sleeping in and socializing. And I didn’t feel like I belonged in that church anyway. If I had to go to church I wanted one with hype — like Mavuno!” So Saturday mornings became a tug of war but because she couldn’t go one way and he another, she would drag herself to the SDA church like a seaweed on the ocean floor.
Two things changed her perspective. One, Otido started to teach in the sabbath school. “I watched my introverted husband come out of himself to enlighten those children and how they would respond to him. I was awestruck.” The second thing was the sacrifices he made for the family.
Every Friday, on his way from Embu, he would stop on the way to buy groceries and household shopping on his own accord. “I never sent him, he just did it.” Then he would get home and lag all that heavy stuff into the house himself. After he was done, he would sit with Wayne and read him his bedtime stories. Then, take the other kids and read them the stories too. On Saturday morning he was always up before the sun, preparing and packing breakfast with the kids so that we could have it at church. He did this consistently for 7 years.
“I was convinced his strength and consistency had something to do with his faith. And if that was the faith they were teaching in that church, then I wanted to be a part of it.” She stopped complaining and plugged in so much so that she too started to teach the kids at the sabbath school. “I figured I would put my extrovert personality to some good use. You have no idea how fulfilling it was to sing, act and run around with those kids Sue.”
“You keep mentioning the children. When did your other kids join the club?” I ask Kate.
“My second pregnancy was nerve racking.” The thought of having another autistic child gave them so much anxiety they decided not to check the gender; because boys are four times more likely to be diagnosed with autism than girls. Kate dealt with the stress by working herself to the bone and assumed the pregnancy. She would not think of it.
“When the child was born and it was a girl, I felt weighted to a cloud. The first time she looked at me, I froze.”
They celebrated every small milestone. “And when she called me mum for the first time, I cried. I wanted her to keep saying it over and over. I think my healing began when Andrea was born.”
The third time was not any easier. They checked the gender and it was a boy. This time, there was no celebration. No road trip. No name assigned. “Have you ever hated a pregnancy?”
She detested it. And she worked so much ,she even got promoted. “I was at an office function when I went into labour, but I didn’t want to go to hospital. I was terrified of what would come out of me.”
When Lucas was born, she kept wanting to see him. She asked Otido to check him, “How is he? Did he look at you?” then told their paeditrician to re-examine him. “It was ridiculous I know because you can’t tell at birth whether your child has autism or not but I was irrate.” Lucas grew and she kept waiting for the other shoe to drop. He would cling to her and follow her everywhere not wanting to be with anyone else.
“Can you believe I thought this meant he had poor social interaction? I wanted him to play with other kids but all he did was follow me around.”
She finally accepted he was a normal kid when he was one and a half years old!
“Our other child Brenda is actually my sister’s daughter.” They took her in when Kate’s sister was going through a rough patch a few years ago. She blended in so well with their family that what was meant to be a short term arrangement has lasted five years. “She is now one of us.”
Theirs was now a full house, with the most exciting weekend rituals. Sundays, Otido would wake up and make breakfast for the whole family. “I was now allowed to sleep in.” Afterwards they would have a dance fest with the kids. “He would come up with the craziest dance routines and we would mimic him.” Kate’s heart was full.
And then Otido travelled to South Africa for further studies. And everything changed.
The weekend routine, evaporated.
Covid came, schools closed and many of the strides they had made were washed away.
Wayne could no longer go to school anymore so he regressed. He had gotten so much better while in that school. Now, he went back to causing a stir, screaming, hitting and biting. “There is a metal pole by the stairs. He would hit it day and night with his bare knuckles until his skin would come off.”
Kate begun to feel herself unspooling. Every day of her life felt as if she was fighting her way up an escalator that only goes down.
“Wayne and I became separate islands. I would leave him to the nannies and focus on the other 3 kids. I just couldn’t handle him and this time without Otido.”
With time, she developed insomnia and with it came agitation. At work she was able to execute her duties but at home she would snap at the children and spend entire days alone in her room.
“Otido would video call us and I would dress up my frustration with excessive talk and a smile. I did not want to tell him what was going on because he was so far.” But he noticed something was off because each time he called she would be seated against the headboard of their bed.
“Kate why are you always in bed when I call? Are you ok?”
She scrambled around in the back rooms of her brain for a lie then said, “Yeah. I am just on Netflix.”
But it ate at her. So at 3am she sent him a synopsis of what had been going on.
This was his reply.
“Hey, this is really sad to read and at the same time I am glad you have told me. I had suspected something was up. Wayne’s autism has been challenging to us especially for you as a mother. I have seen it burn you overtime, I have seen you overcome it even when I was down and helpless. I dont judge you at all. I know the noises Wayne makes can be overwhelming and makes one sad. I would really like to know what he thinks to help him cope. He is such a lovely boy with the cutest smile (from the video you sent). I accepted we can’t change much with him. I accept him. He is loved by everyone in that house and I would strengthen that. That is our mission. For the kids to love and accept Wayne; but they need to see us do it first to emulate it. I will finish this course and be around full time. In the meantime, ask the kids to call you during meal times; eat with them when you are able to. Have a moment to watch a cartoon with them. Tell them your favourite one. Mine is blaze. Then take a break when you need to. It’s the small simple things that they appreciate. I know our family can be messy and noisy, but its OUR family. I will be your pillar and strength. That’s my promise.”
“I closed my eyes and let his words seep over every doubtful thought I’d ever had when it came to my abilities as a mom.” She started to make changes and strapped herself into a new routine.
“I had to accept that Wayne was never going to be a normal child and that it was not his fault that he was a special needs child. If indeed I was suffering by being his mom, he too was suffering by being himself. I started to hug him any chance I got. Even when he didn’t want to, I did it. I spent time with him and in time developed a personal relationship with him.”
Otido introduced her to strength training so she joined a cross fit gym and started to work out daily. Now they synchronise their workouts and wake up to exercise at the same time. “I am up at 4:20 am every day to head to the gym.” People wonder why I work out so hard. Apart from helping me keep fit,” she points to her head, “it boosted my mental health.” She stopped feeling sluggish and low. “The endorphins I get from that crazy workout last me throughout the day.” By the time she gets home, her energy levels are still so high, she is able to do homework with the kids and engage them.
Wayne’s teacher noticed the instability of her students being in and out of school and the hustle of picking and dropping them daily. So she converted the institution to a weekly boarding school where they come home every weekend. With the increased contact time, she is able to do so much more. They go on trips together, she takes them to the supermarket, for sporting activities; all in an effort to teach them life skills.
The first time Wayne slept consistently through the night was last year. He was 10 years old. He only wakes up to go to the bathroom and back to bed. He feeds himself, cleans up after himself and has not thrown a tantrum in more than a year. Recently, for the first time, Kate was able to drive all her kids long distance, take them for swimming and back home — with Wayne seated still at the front. Their first family holiday was in October last year. “We took the train to Mombasa with all our children. Something I never thought we would do.
Many parents who are raising children with special needs, sometimes feel like they are a burden. I know I did. But hindsight is 20–20. When I look back, I realise I might have never known real love from my in-laws were it not for Wayne. They love him unconditionally.”
Having a special needs child has also forced them to think out of the box in matters finances and they have never lacked. “In fact, our cup is running over.”
Otido has been away for two years and is about to finish school. In the same period, she went back to school and completed her masters in Healthcare Management. She has a great employer and a great work life balance. “I have never had househelp issues. The first one stayed 10 years and only recently left because she retired. The ones who replaced her have been with us 4 years now.
“I never thought that a chance posting to Bungoma would land me an Angel from a wonderful family and a beautiful marriage with beautiful children. Better believe God has a plan.”
As told to me by Dr Kate Mackenzie-Otido
Special thanks to all the friends and family who have walked with them along the way.