In TQM’s style of celebration those who deserved to be celebrated within the community of persons with disability, we wish to celebrate PROF who is the Chairman of Star Children Initiative. PROF recently celebrated his 26th birthday and TQM is excited to identify with him based on impact Star Children Initiative which was established due to his disability have made over the years. PROF had disability as seizure occasioned by epilepsy therefore his mother Grace Alexander was interview on his behalf to share with us how the feeling of the whole family was now that PROF is celebrating 26 years old. We used the opportunity to dig and found out how PROF’s disability occurred, how Star Children Development Initiative started, the achievement so far and the way forward.
TQM: How is PROF?
He is fine, he is resting, he doesn’t go to school now because of COVID-19, and you know he is epileptic, so I cannot take that risk
TQM: PROF celebrated his 26th birthday, how is the feeling like?
I feel like the happiest mother on earth for the fact that he was able to make it this far. God has been great, the journey has been challenging. It really opened my eyes to understand that every human being is unique and wonderfully and carefully created. We are not the same, we are different. My son enables me to embrace the differences in human being.
TQM: How did PROF’s disability started?
He was not born with disability; he was okay until when he was five, he started having epilepsy. The Epilepsy was not having much effect, he was having small seizure and then he start having the big one and it started having serious impact in his development. He stopped speaking; he became unaware of what is going on around his environment which was really sad then.
As the mother, I was panicking, afraid and worried. We are from Nigeria, disability is seen as taboo, there is a lot stigma associated to disability and I have never experience that before with my other children and because he was not born with it, I was in denial. I have internalized those taboos, myth, stigma associated with disability, I was afraid to talk about it despite the fact that it affected my overall well-being. Instead of seeking help, I was keeping it to myself.
You know that years back, the awareness was not that much, so when you have a child with disability, there was culture of silence and again, there was brief that someone could be the cause of the problem. I had him in London, I was thinking, Could it be that someone sent something from Nigeria to charm my son, so I was totally confused on what to do. I started having confused emotion and at a time, I started having issues with my mental health. Internalizing disability issues was very difficult for me, I lost confidence, even though we are going to the hospital, I could not summon courage to go and ask questions about what is wrong with my son. I was having panic attack, I was asking God why me but no answers.
TQM: How did you get over these traumatic experiences?
It was a process, it took me 7 years, I went through bereavement because I thought I have lost a son, even though I was seeking help, I was still confused and living in denial. I was not actually doing enough to support my child.
Here, I was talking about my overall well-being and my son’s diagnosis which is global developmental delay caused epilepsy. In a problem, there must be light at the end of the day. After the 7years, acceptance came, I accepted the situation and what next, obviously in taking care of a child with disability, it affects your finances, you face a lot of social isolation and economic isolation, it is either you leave work or you find another work, or you are self-employed or you go back to school, all these things, you would be thinking how do I go about it.
One, I will instruct Parents who are going through what I am going, for you to affect any change, it must be intentional. Intentionality cannot if you don’t accept that there are problems. If you are still in denial, you cannot be intentional on what you want to do.
There was a kind of overhauling of my faith as a Christian, God made ways for me. On accepting the situation, I had started taking care of my well-being because I understood that if I do not take care of myself, I cannot take care of my son. It is important at the stage for one to find a support system, engaging social workers, physiotherapists etc. Look out for other parents who are going through what you are through, you can share information that can be useful for you.
I started speaking with professionals, seeking solution, looking for what works for my son and I had to leave work and went to School to study social work. Then, God started revealing a lot of things to me. I understood that I need to set up an organization after school but I need knowledge on what to do. As a social worker you do needs assessment and when I did my thesis, I worked with those that have stroke, developmental disability and taking care of my son gave me a lot of knowledge. So I took decision looking at what is best for my son and also medication, knowing what works for him and what does not work for him.
I saw a bigger picture which was to set up Star Children Development Initiative, it helped me to resolve everything in my mind, I was thinking about the solution not dwelling more on the problem. I understood my son diagnosis better. Parents should not live in denial about their children situation, don’t be too spiritual about it, speak out, and seek help.
TQM: We want to know more about Star Children Development Initiative, the objectives, achievement so far and what Star Children intend to achieve in future?
Raising my son gave birth to Star Children Initiative. When I started accepting, I saw a bigger picture which is to set up an organization that will support children, youth, women and persons with disabilities and also support their parents especially in Nigeria.
So I started Star Children Development Initiative in Nigeria, before starting the one in UK because that was the mission, a lot of things are still happening in Nigeria, we have not gotten there but there is a lot of awareness now but we still need to do a lot in terms of advocacy, development where people are so disadvantaged especially with this COVID-19. We started with children to age 19 and as my son is getting older. I started adding more age especially youths, so our focus now is youths and women.
We have done a lot in Nigeria, our first event in Nigeria is sensitization of persons with disabilities and our area of strength is advocacy so we started with seven local governments, we were interviewing over 100 of them and their parents and we gave them wheelchairs and foods as the pilot scheme and those parents are still with us doing well with their children. If any of them have problem, they come to our office, we organize meetings for them and try to assist them get over their challenges.
Star Children Development Initiative is not for profit International organization that promotes equality and social justice for persons with disabilities most especially children, their caregivers from poor socio-economic background, youths and women. Our thematic areas are welfare, health and education. Education, we believe every child has capacity, it depends on reasonable accommodation, for example, my child cannot speak but he understands Yoruba and English because I speak them to him. It depends on environment that the child is being raised, with reasonable adjustment, every child can thrive. We are also into inclusive growth; we organized entrepreneurship training for women and men.
Recently, we trained about 40 women and men from different clusters on digital marketing which was relatively new to them but it was done to improve their businesses. We assist with food items, we provide information, we assist in area of health services and education and every other ways to them feel like human beings. If we identify those that have wheelchairs, we provide them with wheelchairs. There was a time we collaborate with a Christian Organization here and container load of wheelchairs were given to us and they also follow us with about 10 professionals, technical people who can fix the wheelchairs, physiotherapists accessing them, we did it in Lagos in November, 2018.
As a trained social work, I train my team to carry out needs assessment; we carry out mentoring classes for youths especially those in school. Mental health associated with disability and poverty and they are intertwined, we are working to change mindsets. We have done a lot on sexual based violence where we did one in Lagos and one in Ede, Osun State where one brigadier sponsored us.
This year, we would be talking about inclusion, people do not have inclusion strategists in their offices, and they do not know how to go about it. People can contact us through our email or phone number for this, we will carry out a needs assessment first and we would work with the organization to understand disability inclusion and they can apply it. We will carry out a lot of advocacy especially on COVID-19 because COVID-19 in Nigeria has exposed a lot of social gaps and carriage of justice in the area of health, education, how disadvantaged PWDs are. Even leaders do strategized when it comes to disability that is why we would be looking into this year because people should view disability from the charity model, all they need is 5kg, some condiments and maybe little money, their problem is solved. If they are supported, their reliance on government would be minimal.
TQM: We are looking at full implementation of Nigeria Disability Act to resolve some of these issues?
Most offices in Nigeria lack disability inclusion strategists so they cannot implement the law effectively, they lack the capacity, knowledge and technicality required to effectively implement the law. How many of them know about the social model and the rights based approach, all they know about is medical model, seeing persons with disabilities like sick people. They do not realize that persons with disabilities are very creative and productive and they can leverage on their skills and talents.
For example, entrepreneurship trainings organized by government agencies such as SMEDAN, how many persons with disabilities have they trained? No statistics on that and even other government program, persons with disabilities were not included, I am of the opinion that if we want to address the issues of disability, it should start from our local communities, local government is the third tier of government and they should have care centres at the local government and they should have data on how many persons with disabilities in their locality. It should be a functioning office where one can get information of persons with disabilities in a click; this would aid seamless outreach to persons with disabilities because you can easily access their information from the centre.
TQM: How have your child PROF been coping with disability after 26 years of age?
PROF is the Chairman of Star Children Development Initiative; I am just managing the NGO for him. Coping with disability depends on environment; you know that a child is having an excellent self-esteem start from the home, the parents being able to support their children right.
My son is very strong, an excellent man; we brought him up to be himself, he is still having learning difficulties but cognitively he is doing well. He uses a lot of his sixth sense, he uses gesture to explain what he wants, we gave me actually when it comes to learning difficulties, I cannot say it is very complex, he can play you up. He is very intelligent, he know a lot that we don’t know, the only problem is difficulty in communicating how he feels but we do watch his body language. He has his own mind. It is unfortunate he cannot go the University, the epilepsy affected a lot of development in him, part of it is his cognition which is improving, but still I train him like his age mates minding his differences and limitations. I don’t treat him like a child, I tell him off when he doesn’t something wrong and I explain the reason.
At times he fought with me when I want to stop him from taking risky, he likes taking risk. There was a day he was doing press up on a chair, I was warned, don’t fall down ooo, which is good. One thing I do is that always ensure that there is no obstruction which he navigate around the house. He cannot move around for a long time and that is why he is using a wheelchair and he has a walking frame that he uses to stand.
Again, he doesn’t relate with children, he sees them as a fun people because I can see his eyes who are they, what are they doing, we can read a lot from his eyes, he has a lot of facial expression. He relates more with adults, he thinks that the adults will understand him. He uses facial expression to communicate and if you spend like half an hour with him, you will found out that he is very intelligent.
Raising a child with additional needs require patience and the ability to seek support.
I think if a child can answer his name or his nickname, the child have capacity to learn. A child can strive if given the necessary reasonable accommodation.
