Mrs Angela Emuwa is the President of Autism Parents Association International, APAI, formerly known as Parents Against Autism Initiative, PAAI. She is a passionate mother who believes that every child must be treated equally because he or she has a right whether or not he has physical or intellectual disability. In this chat, she speaks on the reason her group is partnering with the Child Development Centre on her 20th anniversary to host a parents’ summit at her Surulere, Lagos centre.
PARENTS of children with disabilities have suffered in the hands of unqualified people who take advantage of their helplessness and ignorance to strip them of huge amounts of money. As parents who are well informed, on how to take care of children , we have come together under an umbrella called Autism Parents Association International where parents of children with disabilities can get informed and in turn transform their children from what they think is death sentence to better people.
Synergy to speak with one voice: Parents summit, holding under the theme,’Overriding Stigma with Compassion in the Community:Is this the family’s Solution?’ tomorrow, July 6, is organised as part of the celebration of the Child Developmental Centre’s 20th anniversary.
Topics for discussion
It’s a Child Developmental Centre event but APAI is collaborating with the centre owned by Mrs Akindayomi who has decided to start bringing everybody together instead of having different groups of people doing things separately so that parents and caregivers can have a strong voice to advocate for people with disabilities.
Focus of the summit: We are focusing on the parents because in most cases, the focus has always been on disability itself but now we want to bring parents to the fore so they can interact with themselves and people who have experience.
There are various topics on how to handle stigma. A lot of people think that when they have children with disabilities, they can’t bring them out. Parents have to know that children have rights to be out there. Parents should know that the world is for everybody. We want to tell them to do the best they can for their children.
One of the unique things about the summit is a session that is tagged ‘Fathers only’. We will be discussing understanding disabilities from the fathers’ point of view because we have a lot of fathers who find it difficult to accept that their children have disabilities. Though there are some who are involved, like my husband, who is very much involved in our son’s upbringing.
Management of diets
and finances: He takes him out everywhere and he is not worried that he might do something funny. He takes him to restaurants, friends’ houses and everybody knows us with our son, unlike some that hide their children. There is nothing to hide and to be ashamed of. We are very proud of him and that is how everybody should be.
We will also be discussing management of diets and finances because a lot of parents forget they can achieve things for their children because there are lots of people who call themselves therapists who take advantage of people with disabilities and they are just desperate. Many parents use unqualified people who charge them a lot of money without result. So if the parents are informed, they will know what to expect from therapists and in the process also learn how to do things for their children by themselves. In my house for instance, everybody is involved in my son.
Looking at the future
Everybody knows how we are with him and everybody shows him love and that is how it should be in every home with children with any form of disability. So it’s up to the parents to show love to their children so that people outside can also show love to the children as well.
Children with autism: Another key area is the issue of children with autism. They start off as children but they will become adults. So, we have to look at the future. What happens when they grow up to be adults with autism? How do they cope in this ever changing environment? How do they cope in their ever changing body which is something we hardly look at?
For example, my focus for my child has changed. He is 15 years now. My focus now is not in pure academics but more on socialisation, relationship and being independent. I’m thinking of what he is going to be in future. Look at his limitations, how much can I still get him to do. I am being realistic now and I am not saying that I must get him to the university. Though he may still go, I am taking everyday as it comes and that is how it should be for every parent. This forum will help people to start thinking about these things. If your child is 10 years, you start thinking about it because age is in the corner.
Lagos State Special People’s Law is there and a lot of people do not know about it though it’s not being implemented. At the forum, we will talk about how people can take advantage of what is in the law. And doing that with one voice will work more than different groups doing different things with less result.
Lots of children are out there who are rejected in school despite the existence of the Lagos State Special People’s Law. All schools must accommodate every child with disabilities as well as train teachers. As part of teacher’s training, government should involve training on special education. Teachers should learn to adapt to any kind of child. As part of teachers’ qualification, they should have training in special education. Everybody has a right whether he has physical or intellectual disability. People have to learn to accommodate everybody.
Attendance: Lots of parents will be in attendance through our stakeholders in the summit and there are lists of parents who have previously signed up with our association when we had past events.
Patrick speech, The Learning place, CDC and with interviews like this and through our social media platform, we believe will enable lots of parents to become aware and attend. It’s a free event for everyone.
End Goal: To approach government with one voice/ body, and get them to develop policies that will support people with disabilities in every aspect of life -education, health etc. We have different groups but they are not strong enough. So we want everybody to come together. We want to create a forum where parents will come together and help others out there. A lot of people don’t know what is happening, where to go to, but there should be a forum/ body that can be responsible to the needs of the people, no matter where they are coming from, even from the market place. There should be no discrimination; we want to be able to provide a support system.
To the parents out there, we ask them to come to the conference, sign up and expect to learn from the summit. They have opportunity to learn how to maximise their children’s potentials. They should not give up as the forum will encourage them to give their children all the support they need to become the best they can be.