By KATE HALIM
Dotun Akande’s perfect world was turned upside down with the birth of her son, Patrick fifteen years ago. She noticed something peculiar about this child who wasn’t as active as other children of his age. The discovery that he was Autistic shook the very core of her being.
Nevertheless, she summoned courage and learnt all there is to know about Autism, and also set up Patrick Speech and Languages Centre in Lagos. Even though some families cannot afford the huge cost of caring for these children, Dotun assists these families from her little resources.
She told Daily Sun in an interview about the many challenges parents of Autistic children go through in Nigeria. Excerpts:
Do you ever question God about having an Autistic child? Yes, I did at the initial stage. I took his diagnosis with shock and denial, but I had to help my son overcome his challenges. When you know what I know now, and the kind of help the PSLC has been to many families. I thank God for making me walk this road. Parents who have just discovered their sons Autism might not share my view and I understand where they are coming from.
How did you find out?
I found out when he was around two years old. That was when he started showing odd behaviour; he was drawing a particular thing all the time. He would also run from one room to the other. I knew something was wrong. I took him to various doctors and they all told me that he was all right and that I was just worried for nothing. It was someone who called me and told me that he might be having Autism. That was when I knew what was really wrong with him. Patrick is 15 years old now and he is doing well.
What are the challenges you faced raising Patrick?
The challenges I faced then ranged from frustration about his condition to acceptance that I needed to help him get better. Although, the journey was rough with different challenges at every stage, but I persevered.
Was that why you set up the centre?
Yes. I started it after treatment for my son was successful. When he started to speak and had improved, I thought there must be a lot of children out there with the same ailment and there was nobody doing anything about it. That was when I took it upon myself to create a home where children who had the condition could be brought to, for recovery.
What signs should parents look out for to determine if their child is autistic?
The first major sign is lack of speech. The child is not talking by age 2, followed by other signs such as: plays in isolation, lacks empathy, appears deaf, odd behavior, hyperactive, covers ears to loud noise, tip toe walking, does not point, does not share joint attention. It is not one of these signs but a combination of these signs tells us that it is indeed Autism.
What measures are in place in PSLC to ensure that the children get integrated into the society?
At PSLC we prepare the children to leave as soon as they come. We are always happy when they progress and eventually leave for the regular school system. When they are with us we plan day out to teach social skills in the real world. Our Adults go out into the community every Friday to enable them learn real life skills in the community.
How often do you face emergency situations working with these children?
Rarely do we face emergency situations. In the seven years we have been operation, we have only had 3 of such emergencies. In a particular situation, one of them was trying to harm herself and we immediately stepped in to arrest the situation.
What are the challenges of raising an Autistic child?
The challenges are enormous. 24 hours is never enough in one day. Because most of them lack communication skills, the use of behavior as a form of communication is very vital. Some of them do not sleep at night and they keep the parents up all night. Challenging behavior is a norm in most homes and this sometimes cause a rift between husband and wife. Some marriages collapse because of lack of understanding and the stress that follows raising a child with Autism.
What lessons have you learnt working with these special children?
I have learnt to be more patient and to love them unconditionally. I now know that God truly gives blessings in all things. I know that individuals with Autism see from a vantage point of view that is unique to them. Their eyes can transform us, working quiet miracles in the lives of all those they touch.
Do you train parents as well?
Yes, we train them to help them cope with their children. It is very important because it is the parents who are closer to the children and not us. We also update our trainings. There is still no cure for Autism, and there are no medications for it. The only case you can use drugs is when the child has Autism and epilepsy.
What advice do you have for parents with autistic children?
I will advise that they take a day at a time and be patient with their child. They are always too busy trying to fix them that they fail to see the uniqueness in them such that even when they are making progress they do not see the change because they are waiting for the big picture. It is baby steps that make up the big picture and when the child sees that they don’t even acknowledge the small changes they sometimes shut down or recoil further into their own world. These parents must never run out of love for this special child.
How do you get funds for the projects you embark on?
We are always looking for funding. It is the hardest part of the job. We have to constantly run awareness programmes and we have to be creative doing this. Also, we support indigent families with finances, and this sometimes grinds us to a halt. We usually approach corporate organizations but the truth is that only very few respond to our clarion call. These children need to be taken care of and some of their families can’t afford the huge cost of caring for them.
In what ways can Nigerians help children living with Autism?
They can help by accepting them into the community. Autism is still viewed as a thing of shame so many families hide these children. When you ask them why, they say when they bring the child out a lot of people keep asking questions and they get tired of explaining that the child has Autism. Fellow Nigerians should not look at being different as being abnormal. When the children are accepted in the society they usually improve better. Because the child with Autism looks normal it is sometimes difficult to understand that there is something – other than spiritual or mental attack wrong.
What should parents of the children with Autism do to assist them?
They should accept that there is something wrong and look for the right place to take the child. First, to their Pediatrician to get a proper diagnosis and if they cannot get a diagnosis they should look for the problem area in their child and get a specialist to work with them at home and in the school. They should be patient and love their child unconditionally. They should also check on the Internet for as much information as they can get. Autism is not a spiritual attack and they should not take the child for unnecessary deliverance. They can pray for God to help but going from one spiritualist to another will not help. They will need tonnes of patience and love. They cannot solve the problem alone; they should seek help at all times.