Nigerian Mum, Rafatu Salami Narrates How Her Son Suffered Autism, Cerebral Palsy And ADHD Over Delayed Transfusion
Ahmed Salami is an 18-year-old YouTuber living with autism, cerebral palsy and Attention Deficit Hyperactivity Disorder.
ADHD is a condition that affects people’s behaviour. People with ADHD can seem restless, may have trouble concentrating and may act on impulse.
He has become a social media sensation since videos of his YouTube sessions with his mother, Rafatu Salami went viral.
Ahmed was unable to talk until he was six years old. Due to his condition, he was ridiculed by people who told him he would never be great.
Shortly after he started speaking, Ahmed began creating videos weekly which he posted on YouTube. In the videos, Ahmed speaks on his personal journey and tries to inspire people like him who are battling with disabilities.
“I see myself on a big stage and many people screaming my name Ahmed Salami. I’m living with autism, cerebral palsy and ADHD. When I was little, I was literally written off. They wanted to take me away. They said I didn’t have any talents. But look at them now”,
Ahmed told BBC Africa.
In a recent chat with PUNCH, Ahmed’s mum shares how her son developed the disorder as well as her experience raising him amid lack.
Please, introduce yourself.
My name is Rafatu Salami. I am a journalist based in Abuja, and I am from Kogi State. I am the mother of Ahmed Salami, an 18-year-old autistic YouTuber. His name is Ahmed Salami.
Was he born with the disorder?
Ahmed was not born the way he is. He developed autism, cerebral palsy and Attention Deficit Hyperactivity Disorder, commonly known as ADHD, along the line. His birth was normal like that of any other child. He was not my first child, so there was nothing really spectacular about the delivery process.
The only thing was that I noticed at birth that he didn’t look like my other children. The colour of his skin was different. There was something worrisome about it. I drew the attention of the doctors and nurses to it. But they told me not to worry; that it was physiological and would clear off after a few days.
Four days later, his skin didn’t become normal as they had assured me; it got thicker. So, I had to take him to another hospital in Lagos. The doctors there recommended that I put him under fluorescence bulb. But when we got home that evening, my neighbour, who is a doctor, saw the condition and said it might not be as simple as we were taking it. He advised I brought him to the hospital the following morning. Surprisingly, an hour after he left the house, the child went into a coma.
How did you deal with that?
We rushed him back to the hospital with our neighbour, Dr. Cole, who took us to Mercy Children’s Hospital, Lagos, where interventions were done. We had two blood transfusions and he was placed on life support. He was only four days old then.
By the time we left the hospital, the doctors were already certain that he had some brain damage but they didn’t know how it was going to work out for him. In fact, at some point, some of the doctors suggested I ended it there.
They asked me to allow him to go, but I told them I would not. I couldn’t get myself to let him pass on. I told them I wanted my child alive and that I would accept any outcome from the process.
What did you do next?
We looked for an ambulance to move him from there to another hospital. But because we didn’t get an ambulance that had a neonatal facility that can give him life support, things got worse. It was a terrible thing. It was really terrible, but I thank God now. We were looking for blood but didn’t get blood until Dr. Cole got to call people that knew people in the blood bank before we were able to get blood. That is why, today, I am a blood donor.
I have a group of voluntary blood donors. Anywhere people call me that they need blood, I go out of my way to get them blood because I know that, without blood, one could lose a life and could have brain damage. I didn’t lose my son, Ahmed, but he had brain damage.
My child didn’t get blood on time. He didn’t. If he did, I am sure it wouldn’t have been this worse. But we thank God. We took him to another hospital and since then, we have been battling with the conditions. So, he wasn’t born with the condition. It was caused by brain damage.
What has your experience been as a mother raising this special child?
I have to be honest with you, it has not been easy; it has not been a bed of roses. It has been a rose full of thorns, but I am grateful to God for strength because I know it would have been worse.
Did you seek other interventions after then?
Because we were kind of forewarned that he had brain damage from jaundice, we were constantly looking out for what exactly the damage was since no MRI scan could detect anything at that time. He couldn’t hold his neck; he had no neck control till he was around eight months. He didn’t behave like any neurotypical child.
He never smiled as a child like other babies would. He would not look at anyone. He was just lost in his world. He would not play. Even to laugh, he wouldn’t. He just sat. He didn’t crawl until he was around one year and a half.
He didn’t walk till he was around 20 months old. Even at that, he would stand, take a step or two and sit back down. We had to carry him up and about everywhere. All the interventions we took for him were physiotherapy, massages and others so he could have muscle control.
SEE ALSO: Nigerian Parents Share On Their Journey To Helping Their Children With Autism Rise Above The Spectrum
What kept you going at these times?
I cannot even tell. I think the only thing that kept me going was the fact that I saw possibilities in him. I also read one of the world’s famous neurosurgeons, Ben Carson, where he noted that when he explained the possibilities of the brain and what it could achieve if tasked. He noted that if one part of the brain stops functioning, another part would take over.
I was very hopeful that if I listened to the doctors’ instructions and followed them, perhaps, he would turn out well and receive favour from God. This is because, when he was young, no one believed he could hear anything. We did an audiology test for him at Yaba Military Hospital, Lagos.
We did two of the test. We were to do the third one but I refused to go back. This is because each time they did those tests and gave him the anaesthesia, he wouldn’t wake up for three days. It happened both times. The third time, I was afraid and I ran away.
Where was his dad at this time?
I don’t want to talk about it. We already mentioned that we were alone. I really wouldn’t want to give him (father) any space. We are just grateful for what God has done for us.
Was Ahmed in school at any point?
Well, he went to school but he wasn’t learning anything. Before he went to school, we went to Lagos State University Teaching Hospital and saw a doctor who told us that the two audiology tests had confirmed that his hearing was very little and that we should expose Ahmed to sound.
He advised that we got him an MP3 headphone and give him only things we wanted him to talk about and to hear. We got a monthly educational audio material for children from the United States and that was all we exposed him to. I asked my people abroad to send more of those educational materials to me.
By the time Ahmed began to speak, he began to speak with an American accent. That was how he acquired that accent and can pronounce words properly because those materials taught one how to pronounce words properly. I recommend it to all parents, whether the child is special or not. If you want your child to learn how to pronounce words, put them on and you’d discover that your child would learn pronunciation.
Unfortunately, it affected the entire family because we couldn’t speak any other language in the house except English, so he would understand us and we would understand him.
When did he turn 18?
July 29, 2022.
How did it feel watching your baby boy become an adult?
Hmmm…In fact, I thank God. We have done things we didn’t believe we could do. We have seen things we didn’t believe would be possible. We are enjoying things we didn’t think we would ever enjoy (laughs). We are grateful to God and we are thankful.
When did he start his YouTube channel?
He started in January 2022. I don’t even know how he got to know about YouTube. He had been telling me that he wanted to be a YouTuber, but I didn’t take it seriously. I also didn’t think he should be on the internet with all the things that go on on the Internet. I had to call my friend, Desola.
She advised me to let him do what he wants to do. She was the one who sent me materials and PDFs of statistics on how many teenagers want to be on YouTube and all that. It opened my eyes that he could be on YouTube. That was how we started putting out content on YouTube, and I stand behind the camera.
ALSO SEE: “I PRAYED FOR HIM TO DIE… Dont judge me” Excited Mum Celebrates Son’s 18th Birthday after Recounting His Battle with Autism
When you look back at this and the progress that he has made, what hopes do you have for him in the near future?
As it stands now, with all the progress we have made, he is still heavily reliant on support. We still have to support him to do nearly everything. I am hoping that one day, he won’t need me anymore. I hope he would be able to do things just like other teenagers his age.
He cannot go out on his own except he has company. He cannot do the things other 18-year-olds are doing. We are actually hopeful that he is going to get there. That is our hope for the future, by God’s grace.
What sacrifices have you had to make?
(I have made) a lot (of sacrifices) for him. I dropped out of a Master’s degree programme because I registered and discovered that there was no way I was going to care for him and continue the programme. I have refused travel opportunities because I would not be able to do it while raising him. His bill is three times the rest of us combined. So, all of our resources go to him.
How have you been able to raise the funds to care for him?
I have relied on support systems. A lot of people support me in different ways. Many times, I go borrowing. Other times, I run into heavy debts. But it is worth it. We have to do it for him. As we speak now, I should return him to the school where he goes for therapy but we don’t have money. I have told him already; he knows.
Many times, we have had to skip therapy sessions because we just couldn’t afford it. I have told him that once we are able to raise money, probably by January 2023, he would go back again. There was a time he was at home for nearly one year.
I couldn’t afford to take him to therapy, so I had to do everything for him. I had to do the therapy myself. I do it myself most time. If I have an opportunity to take him abroad, I would take it because we know that there are more facilities and opportunities but we don’t have the opportunity here.
What advice do you have for mothers who have kids like yours?
I would advise women and mothers to know that God has a purpose for every child, and they have to be grateful for the opportunity they have to raise any child given to them by God regardless of the challenges the child is facing.
When one loves a child unconditionally, one would be consistent and deliberate about their welfare. Whatever the outcome is, you’d go to bed in peace, knowing that you put in everything you could possibly have done and that there was nothing you could have done that you didn’t do. That was what kept me going.