By Funmi Ajumobi & Esther Oyengbula

Trinity House, a church headed by Pastor Itua Ighodalo, early this year, launched a group called ‘The Focused Group’ as part of its corporate social responsibility, CSR, to look into how children with special needs can be educated and integrated into the society as well as looking into how their parents can be encouraged and get the right information for their upkeep.

This interview with Mrs Delphine Misan-Arenyeka, the co-ordinator of the group, is an eye opener to parents seeking answers to questions about their children with special needs. Excerpts:

What gave birth to this initiative?

I have a child with special need and some how my pastor, Pastor Itua, felt it was necessary for us to enlighten people on how to deal with children with special needs, how to educate children with special needs because, in my interactions with him, I had spoken to him about what I do with my child who has down syndrome.

How did you discover that your child has down syndrome?

When he was born, we didn’t know he had down syndrome, it didn’t show because it didn’t present the typical symptoms; so we didn’t know until I went to the UK with my family on vacation where a family member had arranged for us to do routine medicals that had nothing to do with him. When I was having my checks, one of the doctors was just looking at me and the child wondering what was going on.

*Trinity

‘Does this woman not know that something was amiss with her child?’  I had that child through Caesarean section in Nigeria in a fantastic private hospital with a pediatrician in attendance but nobody said anything to me. If I hadn’t gone to do medical check, that means I would have been in the dark. A child that was already two years!

And as a mother, you don’t go looking for signs or symptoms of illness, though he had a little delay in milestones and every time I went to this same pediatrician, she kept telling me that children are different and every child develops at his pace. Before that time, I had my first son who was already six years old. When he was barely eight months, he was walking about; by the time he was a year old, his vocabulary was superb, so wide that everyone kept saying that this one is going to be a professor and truly till date he is a fantastic child.

How was the experience like at the beginning of the journey as a parent with a special need child?

Coming back from the UK with that kind of report at a time for my second son who was almost two years old was like my life actually stopped. But thank God for the support of my husband, family and people around me, they helped us and we began to grow. We found out that there wasn’t really anywhere we could go for information. The experience was like flying blind, which is the simplest translation of the experience.

Not knowing where to get help from, how to source for therapist and where to get medical support was a big issue for me. Thank God we could afford to go to different places to access quality medical services, what about people who are unable to access information or medicals for their children with special needs?

Why were you selected to coordinate the initiative?

The initiative is of Trinity House, it just happens that because I have been in this journey, Pastor said I should coordinate it because you can only do what you have experienced. This is because I feel the pain, and I know the challenges. It is just like grieving, if you have not lost a child or a spouse, you cannot grieve in the same way a person who has.  You can only sympathize, you cannot empathize with the person.

In the course of doing these over the years, we found out that we (my husband and I) have become a reference point, in that, when new parents who have special needs children have issues, we get called and we talk to them with the little we know. We can only guide with information, but we need to have a data bank, where people can access information, where to go for medicals, what kind of medicals the child needs.

Having traveled this road for ten years, Pastor Itua felt that there are so many people who are in the same situation but don’t know what to do, where to go. In this part of the world, because of lack of information, parents of special needs children often grope in the dark, looking for answers, to the many questions, solutions and information.

What is the aim of the initiative?

The aim is to synergise all stakeholders involved in the care of children with special needs for better management and to seek better ways to educate special needs children such that they can live, to a large extent, independent lives and not become a burden to family members all through their lives. We cannot continue to wait for government.

So, in June this year,  we decided to have a meeting with the stakeholders.  It was a forum that brought stakeholders together under one umbrella to synergize our efforts. We had people from foundations and non governmental organisations dealing with special needs children, like: cerebral palsy, autism, and Down syndrome.

What are the major issues?

Apart from seeking better ways to educate special need children, we also have plans to ensure that states who have special centers have enough information  and we also want to seek ways to help parents of special needs children unwind for at least two hours.

How often does your son go for medical checks?

My son does certain test yearly to know if his endocrine glands are functioning well.  At some point, we had to check his spinal cord, not because he had cerebral palsy but because children with down syndrome have issue between the sixth and seventh vertebral. So parents need to check ahead of what ever challenges that might crop up. People need to know these things because a child that is not healthy, how can that child learn, how can you put that child in school?

As a mother who has traveled this road for about a decade, what are the best methods to educate a special need child?

When you teach a child with special needs, you teach him with visuals to make learning effective, using physical materials and objects to enable the child to recognize and learn.

We have parents who have special needs children who have locked them up because of  shame and reproach and sometimes purely because they don’t know what to do. We have cases where parents just drop their children in special needs schools or care centers and expect magic to happen; unfortunately, it doesn’t happen that way.

Parents must take responsibility for their child. Anyone who has a child with special need will tell you it is the most difficult thing that can happen to you. But at the same time the children are amazing and we needed to get to a point whereby we can have a forum of some sort, a place where people who need information can go to and get the right information.

It helps to know the challenge of a special need child, because we have children who have been tagged dimwit, halfwit, dullard because they don’t understand mathematics or can’t recognizes letters and therefore can’t put words together to spell properly and teacher who lack adequate training will just condemn such children. But if you know the need of a particular child, you can educate the child. Just like every child, you don’t teach children at the same pace, likewise children with special needs. You need to know where they have strength and where they have weakness and teach them along the paths of strength.

Medically, is there an explanation on what causes of down syndrome?

Medically there has been no explanation, although it has been attributed to dietary, people need to recognize the fact that there is just something that is happenstance or natural. If my husband and I were not enlightened enough to know that this is not my fault or his fault, we would have been at each other’s throat and sadly that is what happens in most families.

Many women have been ostracized, called demeaning names because they had children with special needs. In Nigeria it is the mother that suffers. We actually need a paradigm shift in our way of thinking. There was a case where one of the caregivers in my son’s former center alleged that she had to resign from her place of work because her relatives said she would have children with special needs which is not true.

For the case of down syndrome, how does one explain the fact that during the course of multiplication one particular chromosome just breaks off and attaches to another and becomes 47 instead of 46? How does a man or woman have control over something that is happening inside, that you will begin to blame your partner?

How successful has it been educating your special need child?

When we came back from the UK after all the assessment, we were told specifically not to put him in a special need school because they understood that he had a mild down syndrome. So he has intellect capacity like any other child but it has to be done at his own pace.

Right now he is in year five, in a regular class and he is coping well. He has a different time-table, he won’t take subject like French or NTS, instead we incorporate things like swimming, one on one guided reading so that he can take advantage of the fact that he is in a regular school.

My son for example is very good in mathematics because he doesn’t need to read but when it comes to literacy skills he is a bit slower because he needs to process those words first before writing. Because of the experience that we have had, since he was two, first of all we, had to find a school that will accept him with school support unit.

An educational psychologist has to carry out periodic assessment, draw an educational program for him and that educational psychologist is not even here in Nigeria, so we had to do it in the UK. We had to draw what we call an IEP (Individual Educational Program) for him with the help of a learning support unit and then chart out milestones; so every month we check the milestone to know what he has been able to achieve and what he has not been able to before moving to the next.

Is the forum open to everyone?

It is open to everybody irrespective of tribe, religion, race or whatever because everybody needs help one way or the other