Akhere Aghedo Akran is an educationist and a special needs advocate. She is the founder of Agatha Obiageli Aghwdo Memorial Foundation and, St Agatha’s Special Needs Centre.
In this interview with Daily Sun, the mother of two speaks on why it is important for the society to accept them and give support for their parents. After all, having a child with autism is not a death sentence
How did you come about caring for children with autism?
I started caring for children with autism about seven years ago after undergoing the Applied Behaviour Analysis Para-Professional course.
I got interested when I saw different sides of children. From studies, I found out that they were not different from other children. They are just but special. They could and would progress if we got to understand their own challenges and modify the environment or circumstances to achieve a better result.
Often times, children with special needs rarely get the desired attention in some homes where they are catered for. They are merely used for personal gratification to attract foreign grants and sympathy from the public. Why is it so?
Unfortunately, this is as a result of societal misconception about the diagnosis. Because there have been little or no awareness up until recently, having to expose a child with autism would often attract negative attention.
That they are used to seek grants is what I also would like to question. I do not see why a person should seek to make money out of a person’s vulnerability. If it happens, it should be checked. I am sure organizations that give grants carry out background checks to investigate claims on intervention before awarding grants.
There are a lot of individuals now raising awareness in their space. However, after that there is also the need for acceptance and assistance.
What is your special interest running the Agatha Obiageli Aghedo Memorial Foundation?
Running the foundation is all about empathy. Our programmes are tailored towards intervention to alleviate the suffering of the less privileged and enhance their integrity. We advocate for total inclusion and quality education, irrespective of social status, physical or intellectual presentation and or impairment, gender, tribe and religion.
We believe that inclusion is possible only when there is love. I don’t think that any child should be left behind and that the Sustainable Development Goals will be achieved.
What can you describe as a common denominator among children with special needs?
I would say diagnosis and early intervention remain the common denominators among them. Most of these children, if early diagnosed would have had a better chance. After diagnosing, then, it will be followed with early and aggressive intervention.
But there is usually the confusion of what to do and where to go. Even after getting it, instead of acting on it, there is delay as a result of denial. I tell most parents of these children not to blame themselves for having them. They are special because they bring out the most loving part of you that you never knew had existed. A parent is the best advocate for his or her special child.
What is their physical and behavioural pattern?
There are various levels of autism and the level at which the child is diagnosed will determine his or her social or behavioural pattern. There is mild, moderate, severe and profound level. And different levels have different presentations. There is a misconception that a child with autism cannot function “normally” so I always ask, ‘What is the definition of normal in the context? This is because they have extreme gifts that most of us do not have. For example, if a child can multiply some complicate figures in seconds or can tell you the days of the week of a particular date in seconds, is that not a genius?
Some of them are non-verbal for a couple of years but the day they are able to speak, they let out a dictionary of words. Their diet needs to be monitored as well as their environment because they have extreme behavior. They need constant monitoring. They can be overly sensitive to sound and pain as well as the opposite.
Most of them are often diagnosed with sensory processing disorder or sensory integration disorder. What we perceive as a small sound can be too much for them to take in. So, when we are in a noisy environment or a place where sound is amplified, some of the children would react. It might just be some sensory processing disorder which means the sounds we hear are overly amplified for them. Some react to clothing material or tags, while others would react to just a crowded environment which could lead to a meltdown.
When a parent gives birth to a special needs child, what should she do?
The parent should get the right diagnosis which will determine the right intervention. I always say the 3 A’s should be adhered to. These are:
Awareness – the parent should be aware of the type of special needs his or her child has.
Acceptance – the parent should accept that having such a child does not make him or her less of any parent and does not make the child less of a child. The parent should know that the child’s case is not contagious or a death sentence. It is also not their fault that they have a child with special needs.
Assistance – the parents should assist the child to thrive and be independent to an extent. They should seek assistance from organizations and individuals who know about the condition. Attend checkups and support group meetings to know more ways to support his or her child.
Due to traditional belief, most parents dump their special need children or starve them to death. Should it be so?
This is the saddest part of having to work with special needs children because it does happen but it shouldn’t be so. However, most of these parents do that due to tradition and societal pressure when they cannot help it.
I hope there will be more awareness as well as support to help families with special needs children and persons. It is not enough to pity them as pity has no effect. We should show empathy as much as we can show love to these children and their families.
As specialist, shouldn’t you embark on campaigns to educate the public on how best to take care of these children or where they can get help?
A lot is being done with reference to campaign. Our primary area of focus is Satellite Town and we have had five awareness walks in the last two years. We have organised community programmes where we enlightened the community about special needs children. We encourage the parents to take their children for regular check-ups. We also help with therapy sessions with our occupation therapist. Some of the parents we assist cannot afford the cost of therapy. It has not been easy but it is great seeing the children improve and make progress.
What has been your most interesting and most depressing moments taking care of them?
The most interesting part is finding out more abilities that they possess, irrespective of their impairment. I have learnt over time to presume competence and just go ahead and teach them. They respond. Mastering their “manding” skills lights them up because their needs are met. There is less fuss and crying and their smiles are heavenly.
I find it hard to accept that some parents do not want their children in the same environment as these special children. I have had to argue with some parents that these children live and come from homes too. So if you say that they spit, I ask, has the spit burnt your skin? It is not corrosive either. So, it is hard to see that people do not really understand empathy. The truth is these angels will learn faster from their peers and we have success stories. There is need for more awareness for an inclusive environment.
With the new bill signed into law, I hope there is proper implementation, monitoring and evaluation of the bill.
Is there room for improvement for these children?
There is plenty of room. What parents shouldn’t look out for is a cure. They should celebrate every milestone the child achieves and stop comparing and expectations.
Tell us about the longest staying child in your foundation?
They are more than one. We have watched them develop physically and mentally. They have moved from gaining stronger limbs and muscle tone, to increased communication and manding skills to social interaction. These happened as a result of consistent therapy.
What is your vision for these children?
I hope to see a future free of stigma, isolation and pity for them, knowing that no parent planned to have a child with special needs. Therefore, any child diagnosed with autism or any neurological or developmental impairment is included into the society and assisted appropriately. Their families too, should be giving all the assistance they need to help these children thrive in the system.