The Coordinator of a Non-Governmental Organisation (NGO), Engraced Ones Prayer/Advocacy group, Mrs. Bibora Yinkere has called on the government at all levels to implement policies that would address the issues of children with special need. While expressing her concerns and challenges of parents and children with special needs in an interview with Tobias Lengnan Dapam, she said there is a national policy in place which, if implemented would address some of these challenges. Yinkere also spoke about the various challenges that children and parents are passing through in the country. Excerpts:
You are not a doctor, but little wonder why you are involved in this kind of advocacy?
It is a parent support group, and I am a parent of a child living with special need. This advocacy group for me is a call from God to address certain challenges that parents of children with special needs are passing through in the country. I said it is a call from God because I didn’t start the group when my daughter was three years old, until recently when I am being compelled in my spirit to start something. When the inspiration came to me, I discussed with other parents who have children with special needs and they saw the need for us to come together as a group. When we started, all we do was to pray and encourage each other on how to handle the challenges.
How would you discuss the journey so far?
It is challenging running this programme but God has been faithful to us. Currently, we support one another; The Engraced Ones, care givers and lovers of children with special needs. We are all women and we support one another and share stories on our various challenges. We pray together and encourage each other. Last year, we started the advocacy arm and sensitized (still sensitizing) members of the public and engaging various stakeholders.
The need to involve stakeholders is because there are so many things that people don’t know about this kind of condition. We have gifted children who are classified under this special needs. If you have a child that is a genius in a regular class room, it is a problem because he can’t fit where other children are assembled. There are also children with syndrome, children living with autism, etc are other various conditions we are fighting against.
For instance, autism is a major challenge and most people are not aware. It is a mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.
Autism has been studied extensively and increasing research is indicating that nutrients like Glutathione and Vitamin C could be useful for supporting some of the problems associated with this complex condition.
Children with autism have low levels of glutathione, and often have impaired glutathione detox pathways.
Some of the symptoms of autism include; Delayed learning of language, difficulty in making eye contact and difficulty in holding a conversation.
Others are; Lack of interest in making friendships, poor motor skills, repetitive mannerisms, fixation on objects and lack of spontaneous or make-believe play.
Also, it is a known fact that some children with learning disorder read upside down and cannot compete with other normal children. People call them dullards and all sorts of names, but it is only a learning disorder that can be managed.
There are also others with speech defects, some of them have hearing defects while many others have holes in their hearts. We are advocating for them because we know that most people are not aware of what they are passing through and how to help them out of their current challenges.
What are your activities?
We have prayer meeting in homes where we gather and pray for our children. We also have sensitization programs where we go to the market, schools, churches and various communities to talk to people and tell them how they can identify these children and know the factors responsible.
Unfortunately, some parents have not yet come to terms with certain realities about their children. When I discovered this, I talked to them and ask if they visited the hospital; this is because their issue affects the mental ability of the family. Some parents withdraw when they discover this. They withdraw completely from society, and we try to talk to them and bring them out of the situation. We advice them to go to hospital and accept the child for who he is and also ensure his/her education.
Special needs come with different variance. Some have vocal impairment and they are different in their ways. Their education is different from other children. In most cases, such children are being accessed and organize individualized lesson plan because some of them are slow to learn and cannot cope with other normal children.
Cognitive skills need serious development and teaching is different, some have different pots and it is not easy to cater for them.
How is this challenge being handled in poor and rich homes?
It is a great divide for us. In poor homes, it is a serious challenge while in rich homes, it is only the trauma that people complain about. For those in rich homes, the children are taken to boarding schools, they have special nanny and someone to take care of them in school. But the poor person cannot afford all these for his/her child and it becomes a very big problem.
Most of the mothers in our group are not working, they can’t afford nanny and other things to make life comfortable for the child. The school fees is also too expensive for them to pay.
In my own case, people didn’t know I have a child with special need. This is because we have come to terms with her condition and provide the basic things that she need.
Challenges
The parents are the major challenge we face in this advocacy group. Initially, I thought it would be easy if I identify parents like me who have the same problems. But it is not easy, some are withdrawing and don’t want to talk. They want privacy, and are not ready to talk about it. Even in the WhatsApp group we created for us to share our stories, some never share their problem for the past four years.
Secondly, the group is self funded. The group does not have any source of money. We go to schools to set up clubs and this is challenging because money is required to run the clubs. The will also enable the mainstream children blend with others and see them as normal children.
We also talk to churches to educate them on how to reach out to the children and bring the message down to their level. This is because most churches see them as deliverance cases.
The medical treatment of these children as well as their education is very expensive. Government should provide a scheme or social welfare where these children can go and access affordable healthcare services. Last year we lost a child in our midst because there was no money.
For instance, the problem with cerebral palsy is that it is not a uniform condition. It is like a spectrum because every child living with cerebral palsy has its own peculiarity and that is why the school is expensive. The children have different conditions which they need to manage such that sometimes you have up to 8 therapists taking care of one child.
There are a lot of challenges these children face such as abandonment, rejection as well as illiteracy on the part of the parents who may not know their conditions. The major cause of cerebral palsy is infantile jaundice. We have cases where a woman will give birth today and that same day she is discharged from the hospital. The doctors don’t observe the children. The fact is that most times cerebral palsy is caused by factors that are avoidable.
We also know that the health aspect is important and very expensive. For instance, physiotherapy is 300 to 7000 per hour. If the therapists come and the child is not in the mood the parent will still pay. Some of the children have hole in their hearts and they need constant hospital visit. Government should make speeches therapy free to help many parents who can not afford the bills. We have many of them in our government hospitals and if they can help, we will be grateful. They need to be taught everything and the teacher or the parent needs to be patient with them because they are different from other children.
What is your message to parents
Irrespective of the conditions, parents should know that the children are human beings, they should see it as an avenue to take care of them. The parents should be caring and observant so as to better take care of the children. There is a face of denial, but they need to come out of it. Some went through suicidal stage and blame themselves that probably they didn’t do certain things right during pregnancy, some feel like killing the child while some kill the child eventually.
There is need for this kind of people to join other groups sos s to share their stories. They should not withdraw from the society.
In support group, you will see people worse than you who have passed through the same problem. You will also learn through their experiences and know what to do and how best to handle the situation.
Have you approached National Assembly for legislations
I have my reservations about this approaching them. This is because some of the Members of the National Assembly have children in these schools. The policy makers know about this problem. We have a national policy but the problem is implementation. We don’t want this movement to be meaningless because it is about our children.
However, by the Grace of God, we will try and ensure the move this year.
We want the government to implement the national policy that is already in place.
The children need computers because of the conditions of their hands. They need other working tools which will aid them in their study.