Caring for children with special needs

Children with special needs are part of our society and they need love and care just like other children. Parents and caregivers of these children sometimes have to give up their careers and social lives. NJOKI CHEGE caught up with three women who told of the taxing task of raising children with special needs.

The birth of a baby is generally expected to be great news, but when the bouncing bundle of joy turns out to be a child with a special need, the joy turns to disappointment, fear and even anger.

Some parents of children with special needs blame themselves for how their child has turned out.

Susan Mwelu Mutisya who is 24 years old

In certain communities, such parents bear the pain and rejection from extended family members who believe these children are cursed.

Parents who don’t know how to treat these children or feel they do not have the time to care for them feel compelled to chain them to beds, trees and other immovable objects so that they can get time to work and do other duties.

Whatever handicap it is, whether mental or physical, often the caregivers of children with special needs make lots of sacrifice to ensure they are protected and cared for.

SARAH WANGECHI: mother to EDWIN KABECEKI (SIX YEARS) — AUTISTIC.

I discovered my son was autistic when he was two years old. I had to quit my small-scale business because nobody could take care of him. You see, when you have a child with Edwin’s condition, you need to keep him close, almost as if you are joined to the hip because he can harm himself and those around him.

It is very expensive to have a child like Edwin because he needs to always be on pampers and on a special diet. You also need to be very alert, with a constant eye always on him. I cannot leave him with his younger siblings because he might hurt them. He keeps rolling on the ground and kicking, so I need to always have an extra set of clothes for him. Just the other day, we were denied access into to a matatu because they said he was ‘too stubborn’.

Often, when we use public transport, I have to pay for an extra seat (his), because he will keep staring or disturbing the person next to us.

I am aware there are schools out there with facilities for children with special needs, but the fees (Sh15,000 per term) is too expensive for me. I have two other children to cater for and it is too overwhelming. My social life is practically dead. Whenever I attend a function and he behaves the way he does, people look at me badly and ask me why I can’t manage my child. I understand them, really, because they don’t know what I have to go through on a daily basis. They don’t understand his condition, so I don’t really bother explaining to them. I just leave it to God.

However, Edwin is the most joyful child I know. His lively laugh keeps me going through this tough journey.

MILKA NYAMBURA WAITHIMA: mother to EMMANUEL KINGORI WAITHIMA

(12 YRS) — special needs.

Whenever we walk around with my son, other children point at him, saying that he salivates too much. Others ask me why I neglect my child because his clothes are always wet with spittle. However, what they see is just the tip of the iceberg… a drop in the ocean of what Kingori and I go through together.

When he turned four, I excitedly took him to school, despite the fact that he could barely construct a sentence without salivating. I was hopeful school would change him, but I was in for a shock. He couldn’t read or write, let alone understand anything the teacher taught. A fellow parent confided in me that the school had long stopped including my son in the class register because he bogged down the class to a low mean grade.

On another day, when my mother went to pay his fees at school, she found him doing odd jobs such as collecting litter around the school. Apparently, the school resorted to making him do odd jobs during class hours because he couldn’t do anything in class anyway. That is when the teachers advised me to take him to another school as he was disabled.

My next stop was Githurai Special Unit. They certified that indeed he had a serious problem and we admitted him to that school. However, we did not keep him there for long due to lack of funds and we had to move him to a normal school. He is now in class one, but things are not all rosy.

Just the other week, his teachers called to ask me what my plans for him were since he was not progressing. They have given me two years to decide what to do with my son since he will have turned 14 then. I’m hoping that something good comes up by then.

REGINA NDULU MUTISYA: mother to three AUTISTIC children

Everyone agrees one thing about my daughter — that she looks much younger than her real age. But I have more serious things to worry about. For instance, I have three children with special needs. Susan Mwelu, 24, and her two younger brothers aged 19 and 12 are autistic.

When you have three autistic children, you automatically dedicate your life to them. You take care of them and bear the pain, embarrassment and curious stares.

When I gave birth to Mwelu, she was a normal child, just like those around her. But when she clocked nine months, we realised something was awfully wrong with her. She couldn’t stand on her own. She just crawled timidly while her peers were busy taking their first steps.

When she finally began walking at the age of three, we sighed in relief, but it was not long before we discovered she was autistic, along with her two brothers who were born later. These three children require a lot of attention and persistence, and that is why many househelps leave after a short while because they cannot take it.

We took them to different schools such as Mathare Special Needs School and St Mary’s Rehabilitation Centre (Mbiuni), but after a while, we decided it was best we take care of them at home as we did not find the conditions of the schools favourable for them.