By ESTHER ONYEGBULA
The Keera Autism Foundation, (KAF), a not-for-profit organization, is set to embark on a massive awareness campaign to enlighten the general public on the plight of children, living with autism as well as help provide succour for both the children and family members.
Barrister Mrs. Helen Mbakwe, the Executive Director of the Foundation said KAF was set up as a result of her family’s personal experience and the desire to help others with the same problem. She said the campaign’s main focus is provision of information on the condition, with the aim of making more Nigerians understand and appreciate the stress the children and their families go through.
In most cases, children living with autism and their families are victims of a poorly understood condition. In this chat with Esther Onyegbula, the president of the foundation, Barrister Mrs. Helen Mbakwe shares her experience and challenges as a mother with a child living with, how society attach stigma to people living autism and other issues.
The birth of KAF
They say that necessity is the mother of invention, so it the foundation, as it was birthed to create awareness and hope. “It was after my child was diagnosed; I realized that I didn’t understand so much about autism. I also wondered why people were not showing me love and care; it was then it dawned on me that people can’t show love and care if they don’t know or understand what autism is. After all, I didn’t know what autism was until my child had autism” she says.
“The more we tried to tackle it our selves as a family, the more we discovered it was bringing a strain on us. At a point we found out that if we as a family were feeling that way, other parents with children in similar situation are also feeling that way too. So as we reached out to people we realized that a lot of people were concerned as they didn’t really know or understand what autism was. But some where along the line of their lives they have ran into kids living with autism”.
So we felt that if this few who have heard about autism can be this concerned then we should reach out to more people, the more people understand what is autism, the more people will show love and care and the more the society will be able to provide avenues for people living with autism to be able to get help and relief.
Curbing stigmatization associated with autism
Part of what we are doing is creating awareness, you can’t know not to stigmatize if they don’t know what autism is all about. So we are hoping that the campaigns about autism and putting a face to autism will help reduce stigmatization. When people understand what autism is all about, when they see a child, instead of looking, staring and pushing the child away they are likely to show more concern.
Report shows that there seems to be a growing number of people living with autism in Nigeria. This means people should begin to adjust themselves to be able to stay in an environment side by side with someone living with autism. If you can’t assist them, please, don’t add stress to the person living with autism.
Giving autism a face
As we tried to reach out we found like minds who would love to help but we realized that one of the basic difficulties understanding autism is that there is no face to autism. If you don’t have a neigbhour or a child who is living with autism it is quite difficult to assimilate what it is like or what autism is.
It is like an abstract word. That is why we decided to put a face to autism. The foundation board of directors made Keera the face of autism. So that when anyone thinks autism the person will remember her and what autism is all about. It becomes easier to explain that there is this condition called Autism.
So, when we are in an environment, or a place where a child is behaving that way, instead of staring and blaming the parents or the child, you would know at once what the child has – Autism.
Unlike most kids living with autism, Keera wasn’t born with autism; she has done her milestones well up till about three years when everything changed. She began to lose speech and then subsequently no speech and she developed the condition. According to Barrister Helen, “I registered her for a school where she completed a full session in the playgroup and proceeded to nursery one where she completed the first term, it was middle of second term that it began.
Her teacher said she got up in the class and started jumping all around. It was at this point she started to behave differently. That was when they called me in for a meeting to know whether I noticed something too. And just around the same time I noticed that she has started to lose her social skills and she had started to move away from the family.
When, I was first called by the school that my daughter in the middle of a class changed her behavior and started acting funny, my world sort of changed. It is still hurtful to think back to those times when I got the word that my child had autism. I thought it is something I could face head on, devote time and resources, follow all the medical prescription and be prayerful, and once I did that, everything would turn around again and she would become normal as before.
The countless sacrifice
Like every mother, when Helen was first told that her daughter had autism it was like the sky was falling. “When she was first diagnosed with autism, I was working as a solicitor in the bank. I resigned, so that I could devote my time to following it up the best way I could.
There were so many tests to run, we also had to take her abroad to run some tests and go through her therapies. I went with her to all the hospital appointments; never missing a question they asked that will help to get a solution. I did this for a month, a year, and a decade. It was when she clocked ten that I began to realize that it was a condition and I needed to follow it like that, treat it as autism, and adjust my life and that of my family to be able to live with a child with autism.
The several adjustments
As she was the middle child, we needed to have a meeting with her siblings, and explain to them that their sister may behave differently from before, and that they should start accepting her the way she had become. They learnt how to help her in a few things and they understood that when she is playing differently, she is also having fun her own way.
Also I stopped laying plans, and putting off my life till tomorrow; because I kept saying if she gets well today, I will do this tomorrow, if she gets well by the end of this year by next year I should be able to pick up a job. I had many job interviews lined up for next year, next year until she was ten.
After ten years with no solution I realized I had to get a job, I had to start getting things done. And the fact that she had some special foods to eat which were quite expensive made me realize that I needed to pick up a job. I had to rearrange my life to be able to live with her.
I have to be able to earn money to be able to afford living with a child with autism. She had to continue her therapy, which doesn’t come cheap. I didn’t want the entire financial burden left to my husband alone. We had to streamline our travels, I have to be available for her travels, and there’s no way she can travel without me being there. She has to be managed in a particular way. It just changed our lives.