Discovering that one’s child would require special attention for as long as he lived can be distressing. And that is the situation Fidelis Muigai found herself in 26 years ago when she learnt that her son was autistic. However, her love for her son has enabled her to weather the storms. She tells her remarkable and uplifting story to HENRY KAHARA.
“My son, Alex Mungai, took a little longer to talk and walk, as well as achieving other childhood developmental milestones. As a parent, I was not very concerned as I thought it was normal. After all, he was a boy and there is a notion that baby boys usually take a little bit longer to grow up,” Fidelis Muigai starts off our interview.
When Alex was five years old, Fidelis realised that he was very violent to the extent that his age mates feared playing with him. Little did she know that her son was suffering from autism – a mental condition, present from early childhood, characterised by difficulty in communicating and forming relationships with other people.
Alex seemed to grow more violent by the day and Fidelis had to keep off social functions as people avoided her and her son. “Some people advised me to take him for prayers because he was possessed; I told myself God can answer my prayers too,” she says.
When he was of school going age, Alex was enrolled to school but teachers couldn’t manage him.
“The school’s head teacher advised me to take him to Kenya Institute of Special Education (KISE). When I took him there, they assessed him and referred me to Mathari Mental Hospital.
Here, the doctor who attended him gave me a letter to take back to KISE and an appointment later. At KISE, I was told my child was mentally retarded and therefore he could not attend a regular school. It was distressing but I had to come to terms with the news to enable me take good care of him,” she recalls.
Luckily for her, KISE started an integrated programme at a nearby school. “I took him to the school but the programme was short-lived as it was later stopped since only two pupils responded. At the time, parents were shy to take children with special needs to school due to stigma,” notes Fidelis.
She was thus forced to keep Alex at home but not for long as St Joseph the Worker, a special needs school at Kangemi, was started. It was here that Alex learnt important life skills.
But Alex’s condition was not the only thing bothering Fidelis. Her in-laws saw her as the cause of Alex’s affliction. They thus mistreated her and made it clear she was not welcome in their family.
Fidelis did not let the strained relationship with her in-laws dampen her spirits and she resolved to give her son the best there was in life and within her ability.
With her husband’s support, she managed to raise Alex, providing him with whatever he needed to make life as smooth as possible.
However, in a sad twist of fate, Fidelis lost her husband in 2014. Her in-laws took advantage of the situation and took away almost everything they had. She has however gone to court to seek justice for her family.
“I came to learn that Alex was suffering from autism when he was 19 years old after the formation of Kenya Autism Society,” she says.
Alex gets married…
True to her vows, Fidelis raised her son in the best way a mother would, allowing him to lead a normal life such as going through the Agikuyu rite of passage.
“I prepared him psychologically while going for circumcision and we didn’t have trouble when the time came,” she says.
So it passed that Alex marked many of life’s milestones albeit late and not without its fair share of challenges.
To crown it all, early this year, Alex, 31, got married to the love of his life – Rahab Njeri – who hails from Murang’a County.
According to Fidelis, Alex started longing for marriage in 2013 after attending his younger sister’s wedding. Since that time, he started pestering his mother on when his wedding will be held. And Fidelis could have given him the wedding of his dream only that there was no bride.
“I just told him to wait for God to give him a spouse,” recalls Fidelis. Apparently, Alex didn’t have to wait for long.
During a regular visit to his maternal grandmother, Alex met Njeri and a friendship developed. At the time, Njeri was working as a domestic worker at a nearby homestead. The friendship grew into love and Alex told his mother of his intentions to marry Njeri, 25.
“I played no part in the two becoming an item. He did it for himself. We went to Njeri’s home to ask for her hand in marriage. We were given the go ahead and wedding preparations started in earnest. I received a lot of help from my friends,” she says.
She notes that people who knew Alex were shocked by the bold step. Others forthrightly disapproved the union considering Njeri is also autistic although hers is milder than Alex’s.
“I found it not right to bar the two from marrying since they loved each other and they were in agreement to settle down. Some people argued that Alex and Njeri would bear children with the condition but I figured it was not in my place to determine that. After all, neither Alex’s father nor I are autistic yet our son is,” she says.
Since the couple is yet to fly on their own, Fidelis has taken them in. “They are still in the honeymoon period so we are yet to experience any challenges but I believe God will help them to live together and build their family. My joy is to see them fulfilling their dreams,” she says.
Fidelis believes that all children are equal despite their challenges and each and every one of them is special in their own way. She remarks that Alex could easily work with the intelligence service as he has a very good memory and his sense of smell is high. Furthermore, he easily notices small things that others are not able to.
“I taught my other children from a very early age to accept Alex the way he is since he is their brother and that’s how God has created him. My nuclear family is close knit.
Nonetheless, I have tried my best to make Alex self-reliant so that when my time comes to exit the world, he wouldn’t be a bother to anyone,” she says, noting that Alex is good at manual work and carpentry.
Alex has worked with different companies albeit temporarily. When his work involves crossing busy roads, Fidelis has taken it upon herself to drop him at work and organise for someone to pick him up once his shift is over.
She acknowledges that getting him employment sometimes proves to be a hard nut to crack.
“I know he can work in places like supermarkets to help in wrapping goods and in construction work but you find most people don’t want to employ people with special needs even when their case is not extreme,” she says.
She adds that people with special needs deserve to be integrated in the society in order for them to feel as part of the society. She points out that the society also needs to be educated about special children as this will help to embrace them.
Parents’ role to their children…
Fidelis notes that parents ought to love their children unconditionally despite their challenges. She urges parents with special needs children not to allow people to write their children off since they too have potential to be great.
Fidelis has partnered with New Horizon International Foundation to create awareness about autism and to provide psychological support for mothers and caregivers.
“You don’t have to feel embarrassed about your child’s condition. You are the one to protect him from any person who doesn’t understand their condition,” she says.
As such, Fidelis admits that her son determines the kind of people she allows in her space.
“If we have to be friends, you have to accept my son. I am working towards buying Alex and Njeri a farm where they will settle down,” concludes the mother of three.
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