Yemi Ogunfeitimi is a motivational speaker, advocate for children with special needs and business woman in healthcare services. She is always eager to share the story of her son’s autism spectrum disorder, in order to motivate parents facing similar challenges. Ogunfeitimi’s son was diagnosed with the disorder at age two. She was initially baffled, depressed and overwhelmed. With help coming from pediatricians, family, friends and support groups, her confusion and profound struggles in knowing how to best address her son’s needs are allayed. Ogunfeitimi overcame her fears and her son rose measurably above the perceived stigma. In this chat with Adedayo Adejobi, she shares her son’s watershed moment, how she joyfully dedicated herself to caring for and protecting him like a lioness, its impact on her family, the joys and challenges
OF RAISING A SON WITH AUTISTIC SPECTRUM DISORDER
At 37, you said you were done with child bearing. How did you welcome the surprise and coming of another child at a time you thought you were shooting blank?
At that age, many adults are shooting blank and getting done with child-bearing. In my case, nature happened. Imagine the surprise on knowing that a child is on the way at 37. I was so certain I was done with child bearing, and then, I found out I was pregnant! I already had three beautiful children and I was ready to focus on raising my three children. So, imagine my surprise when I found out I was pregnant with a fourth child! Although at first, I was not too excited about the news, my husband and I decided to count this as a blessing as we proceeded with the pregnancy. I went to my entire doctor’s appointments, took all my prenatal vitamins, and kept a healthy diet and exercise. Although I was considered a high risk because of my age, I did not believe them because, after all, I am an African woman and my mother had her last child at 45!
So, what point in the child’s life, marked a watershed and how did you handle the transition?
Welcoming my handsome and healthy son in April 2006, I fell in love with him at first sight and without a doubt that was the happiest moment of my life! He was healthy at birth, met all his milestones on time: at age one, he was walking and talking. Everything was great until he turned two years old.
I started noticing a regression in my son. All the milestones and developmental skills he had developed were disappearing. He stopped making eye contact, stopped talking, he stopped responding when you spoke to him, stopped interacting with his siblings, he became antisocial, and he began playing only with himself. These behaviours prompted me to visit his pediatrician to seek help. We visited his pediatrician and discussed these new changes. We were reassured that everything was good and that our son will grow out of this. We visited the doctor on numerous occasions. We were unrelenting in our quest to get a proper evaluation of our son. The nurse at the doctor’s office never believed my story until I demanded to speak to the doctor alone. Finally, the doctor paid attention to my child and then referred us to a developmental pediatrician. My persistence and intuition enabled us to get the help our son needed in a timely manner.
Finally, we scheduled an appointment and met with the developmental pediatrician. Our deepest fear was confirmed when he told us, ‘your son has autism’. I was overwhelmed with a flood of emotions. It felt as though time stopped and my whole world turned upside down. I was devastated, sad, mad at myself, with a billion questions: what went wrong with my child? What did I do wrong? Is this like a form of punishment? The pediatrician was patient, compassionate, and understanding. He explained everything and answered our questions.
How did your husband and children react to the news?
There is no gainsaying in the fact that the road to understanding autism is unfinished, zig-zagging and punctuated by speed bumps, the first of which is the question that transformed my life as a mother in 2006. The pediatrician informed us of community resources, gave us a lot of information that I could not possibly absorb everything at that time, and refereed us to some support groups. At the end of our visit, she told us that her only child was diagnosed with Autism, and that she put in all her effort to make her son successful. That was my only take away from the doctor’s visit. I cried all the way home. My husband, on the other hand, was so calm! He simply said, ‘she just told us the problem, few solutions but not all solutions, we need to go home and look for all solutions that will help our child succeed.’ I thought to myself, ‘why are men so strong.’ So, we got home and told the rest of our children the news. To my greatest surprise, they handled the news much better than me; they went to their rooms and did not ask any question.
What did it feel like as a mother when you couldn’t fully understand your child’s needs and how to help him? And how did the journey to his healing begin?
We began our journey in autism treatment to ensure that our son is as successful as possible. He began occupational therapy and speech therapy right away. We went to the school district for an assessment to ensure he could start school right away. Luckily my son was accepted to begin school at age three. We hired a private teacher at home, I went to a lot of trainings to help my child, bought so many books and read them, and spent several hours daily on google. Google became my best friend at that time. I was hungry for as much information as I possibly could get on autism. At age three, he started the school district programme called PPCD. He was provided with Speech and Occupational therapy at school. At age four, we hired an applied behavioural therapist that was at our home, he had therapy two times a week. We worked with our child with all our strength, teaching him how to maintain eye contact, how to read and how to communicate with us. With all the resources together, he started talking again, he began speaking a few words but not enough to communicate with people. For example, he could not communicate when he wanted something, when he was hungry, or when he wanted to use the bathroom, so he would soil his underwear. Many times, I got called from school to pick him up because of his soiled underwear/clothing. We continued with all the therapies both at school and at home. The Occupational therapy helped him develop skills for handwriting, play skills and daily living skills; speech therapy addressed challenges with languages and communication; and applied behavioural therapy focuses problematic behaviours related to Autism. At age five, we hired a special education advocate to be with him at school and help him navigate through the school systems. She has been a great help with our son up to this point, she fought for my child too, and helped with available resources that could help him.
Early diagnosis of autism is extremely important in ensuring that the child gets the necessary treatment as early as possible. Early intervention and treatment through behaviour and communication techniques can boost an autistic child’s development.
As a mother battling with inner struggles of your child’s diagnosis, where did you draw strength from this long, especially in this challenging and sometimes tortuous road?
I struggled to accept my son’s diagnosis. My entire life revolved around him. All of a sudden, my life was put on hold. These feelings were worse when I saw other children about my child’s age communicating and having good social skills. It hurts and I always wished my son could do the same thing. However, I made sure that neither my internal feelings nor my son’s diagnosis stopped my family from leading normal lives. We took my son everywhere, we never left him at home out of fear that he may “misbehave” like running around, jumping and yelling at times. Although some people may have been embarrassed by this, we were not. Furthermore, I became more involved in everything I did. I became very popular at my church, at his school, and in my community because my son and I are always together, going places, and doing things together.
How did the community treat you and your child?
I was always amazed at how people treated us differently. My son was not invited to most birthday parties because some see him as different; and when I invited kids to his birthday, most of the typical kids did not show up. I could remember one day that I broke down crying during the night, I was inconsolable, overwhelmed with the stress of raising my son and my three other kids, my husband thought I was depressed, so he called my big sister, Grace Komolafe, in Nigeria to talk to me. She counselled me and prayed with me. From then on, I never did care on what some parents and their kids think of my son. I will remain forever grateful to those parents who were nice enough to invite him to their children’s parties. It has been a hard, long road. I held on to God, praying and believing. My source of strength was God. I am grateful to my strong support system: my friends and family who have been and continue to be so supportive, calling and praying with me daily. Above all is my heavenly father who remains my strength in my times of human weakness. By the Grace of God and diligent use of therapy, my son improved! He communicates, he is fairly independent-he can bath, eat, and cloth himself. He now has friends, he is improving daily, and although his social skills may not be the best, God is working on him. Although it looked like there was no hope for him back then, I can confidently say that he has come a really long way.
What has the journey and your son’s Autism taught you?
My son’s autism has thought me a lot of lessons in this life, made me see the world in a different way, made me a nicer and more compassionate person to people. Most importantly, my son’s diagnosis has made us a much stronger family. Furthermore, this journey has also given me the opportunity to learn and perfect different skills such as patience, to be caring, to love; my son is giving me so much love, always around me and checking to make sure I’m doing okay. Having a child with Autism is an opportunity for continuous learning. It has changed my perspective entirely from regrets and feeling sorry about his diagnosis to helping my son achieve all the milestones. I honestly believe that it is time for us as a society to change our perspective of autistic children. It is time for us to collectively join our forces together to ensure that all of our children are successful regardless of whatever medical diagnosis they have.
At what point did you come to the realisation that you needed to speak out?
Although I have over the years, been giving presentations on Autism to groups and teaching caregivers how to cope with their special needs children, until now, I have kept it very quiet because I wasn’t ready to share my story on a global stage. I was forced to face my fears of exposing my problem to the world when I was asked to give a presentation that was recorded and posted on YouTube and Facebook last year. On that day, when my friend and a mother of a child with Autism requested if I could be recorded, I asked myself if I was truly ready to make my story public. Upon speaking to my husband and my older kids, I was encouraged and finally ready to share my Autism story with the world. That was how I began this journey of spreading awareness about autism. My goal is to encourage other parents who are raising children with special needs. I hold a firm belief that special children are not raised by strong men or women but by ordinary, normal people like me and you. Raising that Autistic child is what makes each of us and our families special. It might be a strain on one’s resources, but never give up. Raising children with autism comes with no manual, but rather just years of trial and error by people who never give up.
What advice would you give to mothers and fathers who have a child that is on the autism spectrum?
I stand with parents of kids with autism. Your story may or may not even be similar to mine, but I encourage you to continue to look for new ways to address whatever challenges we face and making our problems work out for us, getting answers, looking for ways to solve the problem. If we do not make any effort to resolve problems, nothing will change. Taking care of a child with Autism may be very challenging, energy draining, and requires a lot of help. Put in all your best effort to help your child succeed, take them out, and do not be ashamed of them. Please do not let fear of what other people will say prevent you from leading your life like any other family. Please do not keep your child locked up in the house, they need to see the world, dress them well and show your special need child much love. After all God created all of us. Taking them out helps them to develop social skills that they need to function properly in the community. Be involved in your child’s education, be your child’s advocate, do not let people bully your child, stand up for your child, do everything you can to make your child successful, and above all, trust in God! Autism’s symptoms vary widely from person to person, and change over time. My evergreen message is simple: “Hurry! Early intervention is crucial! Save your child from autism before it’s too late.