HOW TO CATER FOR AUTISTIC KIDS – AN INTERVIEW WITH A MOTHER TO AN AUTISTIC CHILD

To mark World Autism Week, Esbimedia met up with Mrs. Njinchuki Bianca, a mother to an autistic child, to discuss the fundamental aspects of how she cares for her kid in a weekly routine, his education, meal and much more. The mother sheds light on how she got to know her kid was diagnosed with autism, how she had to change his eating plan, education, how she spends money weekly to meet up with the expected needs of her son.  This interview provides crucial information for better understanding on how to care for kids with autism and also for the fact that parents should know it’s within this period their kids really need them to be strong for them.

Esbi Media: When did you discover that your child was Autistic?

My son Keyon, was born in 16th November 2017, and during the first year, we had noticed something weird when he was about 8 months talk-less of his first birthday. By 6 months, he became very aggressive on top some certain type of things and the way he will cry, the whole quarter will show up thinking that there was something wrong with the child. So, by his 8 months, normally you should hear “mama” or “dada”, stuffs like that. He wasn’t speaking, he will only babble and from the babbling now, we started wondering if he will speak and by one year he couldn’t use his fingers, even to hold a knife to cut his cake was a problem. If you place something in his fingers is a problem, he doesn’t answer to his name, he doesn’t respond to orders, he doesn’t respond to one calling his for him, he’s always by the TV, he has some routines where he just runs up and down round the house. So, we discovered that there was something weird by that time, so we sent him to school in our own opinion we were like sending him to school so that maybe when he goes and associates, he will speak English or he will speak of which unfortunately he didn’t. He continued with his routines in school, until teachers and everybody were just annoyed. Eventually when he was about two years old during the Covid period, we went to see a doctor- pediatrician. We first of all went to see a pediatrician, when he started walking, because we noticed he was limping and the pediatrician said there was nothing with him, and that limping was already a sign of Autism. His legs were like “Duckfy”, he moves like his feet out and not in, so we went to see a pediatrician and he assured us that “no there’s no problem with him like everything is ok”. Now maybe that would have struck a chord in the pediatricians’ mind that time but it didn’t. So, by the two years four months during the Covid period, there was no school and we went to see the pediatrician again that’s when he was confirmed Autistic.

Esbi Media: How did the family accept this news?

I don’t think there’s any family that accepts this news. It’s a very difficult thing to go through, every family, my primary family, my husband and I were broken. I think I fell into depression for about a year.  I will struggle and smile outside but I was broken inside. I was in depression for a year. My husband recently even accepted the fact that his son has a problem, let me say as recent as three or two years ago. That’s when he discovered that it’s time to accept that this child has a problem. My siblings were heartbroken and my family members were all heartbroken. It’s difficult to even accept even till today, there are some people that have not heat accepted, there are some people who have not understood what you do with a child who has Autism. I’m not saying prayer is bad oh! Prayer is great, but you have to work and know that this is the situation that you find yourself in and you move forward, if God makes a miracle, then that’s a bonus to you. Some of my family members and others usually say “let’s take him for prayers, let’s take him for prayers” and I’m like yeah that’s good, but right now, it’s to know that we need to accept it. I believe that those people who say “let’s take him for prayers”, which I’m not saying prayers is bad but I strongly won’t accept that, because when God has given you something, it’s how you use or how you deal with it that gives you a level of help or dependence on God. I don’t think family has actually really accepted, but we’re coping with. I only accepted as I said only after a year, because if I didn’t, I will put the child under a lot of stress. So, we’re coping with it.

Esbi Media: Who are the different specialists you have met?

When it regards to specialists, I met a neuro pediatrician, but we worked with him, then they sent us to a Speech Therapist. I worked with a Speech Therapist for about a year, and she’s at Tsinga. My son didn’t really like being there and I tried to change. As I was working with the Speech Therapist, we were paying her 40,000 FCFA per month, then we went to a Special Educator, every Special Educator has their price, some will take 50,000 FRS, others will take 25,000 FRS, some will take 30,000 FRS, or even 35,000 FRS. So, we were working with a Speech Therapist and a Special Educator. We had never seen a Clinical Psychologist, neither had we seen an Occupational Therapist, but I had made consultation with an Occupational Therapist and she asked me to give her 85,000 FRS per month. That was a little bit too high for me already knowing that we’re paying for Speech Therapy, Special Education Therapy. It’s stiff, when you have an autistic child, you have about six therapists to go to, you have a Speech Therapist, an Occupational Therapist, a Clinical Psychologist, a Behavioral Therapist, I’ve forgotten the last two but there are a couple. So, we could afford only what we could afford because it’s really difficult dealing with children with special needs in the country, because you really don’t have much subvention although they say they do but it’s not real.

Esbi Media: How is his schooling going? Does he go to school?

Well regards to schooling, he goes to a Special Education school or a Special needs institution. It’s actually a center, that’s where they teach them the primary things like the alphabet, they teach them functional and life skills, how to use the toilet, how to wash their hands, because a lot of them are not independent. The issue with children with special needs be it autistic children, be it those with Total Cerebral Palsy, be it those with hydrocephalus or microcephaly, be it those with other syndromes, the issue is dependency, but then how are they independent? How do we help them to be independent so that they can live life tomorrow? Some of them will go to school, some of them will not, but the essence is to teach them functional skills so that they will be able to do something tomorrow with their lives and get some money.

Yes, he goes to school, he goes to a Special needs school in Damas, I think that’s the cheapest we have so far because the rest of the schools are super expensive and it’s very bilingual and very good, they have been working so well with him.

Esbi Media: How much does his care cost you per week?

I don’t really know if you can care for him per week and give a particular cost, because costings per week will have to do with nutrition. Frankly speaking I started that and could not continue, because I had to change his meal plan, they are very picky eaters so I had to change his oil, I was not allowed to use Mayor oil, I was not allowed to use anything apart from Soya or Palm oil or which other thing? When you start following a diet it becomes difficult. I’m not saying that it’s bad, but it’s really tough because they’re only allowed to eat certain type of things as I said. Let me say sunflower oil I used to buy is 3,500 or 3,800 FRS per bottle that’s 1 liter, so if I’m supposed to cook only for him how many times will I cook that type of food?  and if I use coconut oil because that’s another good thing that I’m supposed to do. Coconut oil in a week is about how much? I bought two liters of coconut oil for about 25,000 FRS. So, things are a little expensive when it comes to weekly cost on taking care of a child with special needs, because their diet or nutrition is very very costly, here anyways because you have to put them on some sought of diet or protein diet. He never even ate meat, I think he just started meat this year 2024, he started protein this year and vegetables which he doesn’t like so much so you need to look for the best vegetables that he will accept to eat. So, taking care of the nutrition of children special needs is a little bit difficult. I cannot really tell you there’s a cost per week, I had to just cut down on all those costs because I wouldn’t have been able to cope if that was the case, because at the end of the month that when you see that you no longer have money then you know that “ok wow these kids have eaten you up”. I told you at the end of the month, so far what my husband and I spend is close to about 100-200,000 FRS extra because we are paying those small therapies and stuffs like that. Then we had to cut back and chose the priority because we will not be able to continue like that, if I was supposed to tell you the definite amount of money, we’re supposed to spend on him every month it will be about 500,000 FRS.

Esbi Media: Are you made fun of because of his condition? How do you manage this?

My son is 6 years old, so being made fun of I’ve been in that light. If he was 2, I would have said everybody now has become a little bit aware of what is going on. Society is becoming a little bit aware of children who are different and they don’t judge as much but as I’ve said my son is 6 years old so I’ve had my own share of being made fun of. I have been told to tell people where I kept my son, whether it’s money I wanted or I’ve sold my son to the devil, I’ve been told I spoilt him so he’s teaching me exactly what I need to deserve, I have been fun of behind my back, and I hear it like you see people, people who claim that they are so good and so good look at what God gives them. I’ve been made fun of behind my back and Infront of my face. We’ve gone through, I mean I speak for other mothers, we’ve gone through a whole lot when it comes to our children. I think I remember I was told my child is evil, and only that retarded me from moving to places, we hardly go for birthday parties but not because we don’t love to , we love the idea but when he falls into his tantrums, people are quick to judge instead of understanding, so I only go to places where or birthday parties where I know my son will feel safe , and I know that they won’t look at him differently because, they will love him and  understand that it is first of all stressful on the parent as well than for the world  to continue judging you on what happens to the child because it’s nobody’s fault. These things happen to anybody, it can happen to everybody, it can happen to anybody, there is no particular reasons and someone saying a child has Autism because of all what has been said is merely speculations. So, it’s been tough but I’m okay I think, we’re braving through with the society, as they are becoming a little bit aware now because people are coming out. What do I mean by people are coming out, a lot of people lock their children in their rooms and I will say I personally I am a proud mother of a child with Autism , and I’m so proud to say it, yeah it hurts , there are days I break down, there are days I fall into depression, there are days I don’t know whether the cup is easy , it’s above me to carry, but then there are days I know that this guy needs me and I need to be strong for him, so I cannot let myself go. So, either way, it’s difficult and difficult for all mothers who have children with special needs. You will hear all sorts of stories, I have a friend who was insulted in a taxi because the child threw a tantrum, and the taxi man told her that she has sold her son to the devil for money. I was like she’s in a taxi, if she was in her private car and then they said she sold her kid it will be different but then she was in a taxi.

 So, either way let me just conclude, we’ve all been insulted in one way or the other, but we will break through it, and society is becoming a little bit aware, so when you just tell a child that he’s like this, they calm down. They may not like looking after him, they may not like him touching their children, because autism is always associated to witchcraft, or children with special needs are associated to witchcraft, or misfits or freaks of the society, but they are coming to terms with it. The funny thing as I said, people are now coming out, all the children that have been locked up in bedrooms, because society is telling them that they can go to school, they can do something. They have started unlocking them, they have started letting them out. I know many people who used to chain their children to the bed, I know many people who don’t allow their children to come out, I know many children who have grown up in the bedroom, but now they’re coming out. People are becoming proud of who they are, people are becoming proud of their children, and then it’s okay. It gets better. It’s getting better I just pray it gets to its best state.

Interview by Delia Nyadi