How will my son survive when I am gone?

Beatrice Mgenyi, 58, during an interview with Standard at Strathmore University in Nairobi during the marking of International Day of Persons with Disabilities in Nairobi on Monday, December 03 2018 [David Njaaga, Standard]

Beatrice Mgenyi, 58, has done her best to arm her 34-year-old autistic son with life skills. But is it enough?

A few days after I delivered my first son, I noticed some strange white patches on his cheeks. The patches, which I later came to know as eczema, started appearing on other parts of his body especially under his armpits and around his neck. I applied ointment each time the rashes appeared and they would disappear. I didn’t know that the rash was an indication of a bigger battle ahead.

I suspected that Leone may be autistic when he couldn’t speak at age three. I had made numerous visits to health facilities to manage his eczema and on one such occasion at Kenyatta National Hospital, the doctor confirmed to me that Leone was autistic. The only pointers the doctor gave me at that time was my son’s inability to speak and the eczema. As he grew older, I started to notice how hyperactive he was. His attention span was also very minimal and he lost interest in activities very fast. Even now at 34, I try teaching him to write his name but he leaves everything and walks away to do something else.

The first decision I made when I learnt that Leone was autistic was getting him an expert that would help him speak. I went to many top local hospitals in Kenya in search of a speech therapist but I found none. My final spot was Kenyatta National Hospital where I was booked in for my son’s speech therapy. I was to visit the hospital two days weekly. Unfortunately, the people I was assigned at KNH had no knowledge in speech therapy. It was very difficult to get a speech therapist in Kenya those years. Even now, I haven’t heard of a reputable speech therapist in Kenya.

At six, he still couldn’t talk and I started to hunt for a suitable school for him.

Teaching him self-reliance

After a long search, I finally enrolled Leone at Toi Primary School in Kibera where he studied for 14 years. I was lucky enough to get a trustworthy house manager who cared for Leone as if he was her own son. This was important to me because of the common sexual molestation incidences of such children.  With her help, I taught Leone many basic things such as bathing on his own, laundry and even washing dishes. The only thing he can’t do, perhaps, and which I am afraid of letting him do, is switching on cooking gas as this may be dangerous to him. He has a problem coordinating between switching the gas on and off.

I also tried to enroll him for sign language classes but I was always turned away by teachers who said they couldn’t teach someone who could hear. Leone’s hearing ability is very good. He sometimes hears the screeching of his dad’s car from a distance before any of us and rushes to open the gate.

Leone also acquired hands-on skills in sewing and beadwork when he went to Toi Primary school that has a section for children with disability. I have also approached Orione Community Training Centre in Ongata Rongai that equips people with disability with skills especially in farming.  They graduate with certificates and are aided in opening bank accounts of their own in case they want to run a business.

A mother’s hopelessness

But nothing worries me more than knowing I always have to be there in every aspect of Leone’s life. I am his greatest support in most things that he can’t do on his own. This worries me knowing that I may not always be around. I have other children (a 30-year-old daughter and a 26-year-old son) who are both working but they will have families of their own and may not be fully dedicated to Leone. I keep asking myself what will happen to my son when I am gone.

Sex is a topic that we have always wanted to discuss with Leone but the fact that he can’t speak and he can’t use sign language makes such discussions impossible.

Sometimes I ask myself whether or not he understands what sex means. Now a grown man, does he know that sexual relations exist? Does he know that people get married at some point in life and have children? These are things I long to hear him talk about. I definitely want him to get married and give me grandchildren. It is a day I can’t stop looking forward to.