RAISING A CHILD WITH AUTISM CHANGED OUR LIVES FOREVER
October 29, 2019
“Everyone you meet is fighting a battle you know nothing about. Be kind. Always.” – Brad Meltzer.
Autism & Acceptance
Autism is a complex neurobehavioral condition that includes impairments in social interaction, developmental language and communication skills combined with rigid, repetitive behaviors. Because of the range of symptoms, this condition is now called Autism Spectrum Disorder (ASD). Autism can look different in different people. There’s no single cause for it, and symptoms can be very mild or very severe.
Our son Mahmoud was diagnosed as being on the Autism Spectrum (mild/moderate) in late 2014, when he was three and a half years old. There were no signs or symptoms of autism for the first year and a half of his life. He met all his milestones for his age, made eye contact, was responsive to us and those around him. He sat at four months, crawled at six months and walked at 9 months. He could say mama, dada and a few other words typical for a 12 – 18-month-old. Mahmoud was a very healthy baby and toddler. From the age of 2 until his diagnosis, we started seeing signs of regression. Mahmoud no longer made great eye contact, his speech was delayed and his love for repeating favorite activities such as music and flipping toys significantly increased. These were early indications that something had gone awry. However, some of these signs were attributed to other factors or so we thought. He was the only child at the time and had not developed much social skills because he was not in school /day care full time interacting with other children. Our family spoke multiple languages around him and had recently moved from the United States to Makeni, Sierra Leone. At that time, most of the schools in Makeni only accepted students aged 3 and up. I was able to convince the principal to enroll Mahmoud at the age of 2 to see whether socializing with his peers would help to improve some of the obvious signs of his regression. Unfortunately, that did not help him much.
We are providing you with this background information because when we heard the word “Autism”, we wondered whether his seizure at 13 months and/or his vaccinations had something to do with this diagnosis. Or perhaps it was our move to Sierra Leone – change of environment? We also wondered if our son had had a fall or some kind of an accident, while he was being cared for by his nanny, which she failed to communicate to us. It was hard to accept our reality. How can a healthy child with no family history of Autism or related disorders be diagnosed with one?
This diagnosis was a very hard pill to swallow. As a couple, when you find out you are having a baby, you can’t help but to think of all the things you want to do with your child and who that child would become when they grow up. With our son’s diagnosis, we wondered:
What type of life would he have?
How would he perform in school?
How would he be seen and accepted by his peers?
What would people think or how would they react towards Mahmoud and us?
Will he be bullied or taken advantage of?
Who would protect him if /when we are not around?
Will he be able to stand up for himself?
And more than anything WHY US?
After weeks of weeping, hoping and praying that this was a dream and it would all go away, feeling guilty and wondering what could have possibly caused this problem, we realized none of these approaches would help our son be independent and successful in life. We began to proactively do our own research, asked specialists tons of questions, talked with other parents with autistic children and sought the necessary help that Mahmoud desperately needed.
It was quite imperative that our families understood the uphill and life-long battle we were faced with. This meant discussing and sharing Mahmoud’s struggles and successes with them, the approaches and recommendations from specialists about how to communicate and work with Mahmoud, how sticking to a structured routine would help him and most importantly showing him the love, care and support he would always need.
There have been days when we don’t understand what he needs, sometimes our patience wears thin, many days our hearts break watching him struggle with certain tasks and activities. That feeling of hopelessness and not knowing what to do or say, to teach and help him was always present. Even during those moments of frustration, Mahmoud teaches us to love, support, understand, encourage, remind, guide, motivate, have patience but most of all accept him for all that he is.
In our home we are STILL learning to accept, understand and be thankful for progress, not perfection. We are very thankful for the little things. As with most disorders, lack of understanding and relevant facts allows people to only see negative aspects of the disorder. There are so many positive sides and aspects of autism. There are some famous people who were/are also on the Autism Spectrum. Albert Einstein – Scientist, Bill Gates – Co founder of Microsoft, Steve Jobs – former CEO of Apple, Temple Grandin – Animal Scientist, Emily Dickinson – Poet, to name a few. Some of the positive characteristics and aspects of autism include but are not limited to, strong attention to detail, not conforming to social norms, being unique and different, thinking outside the box, being honest and trustworthy, kinesthetic learning and usually expertise in areas of special interest. These are all characteristics and qualities we see in Mahmoud. I hope and pray that we continue to push him to be himself, continue to instill in him that it’s ok to be unique and different and not try to conform to societal norms. This can be difficult especially for young children who want to make friends, are still growing up and trying to figure out who they really are and what they want in life.
Therapy & Teaching
It is hard to quantify the hours and resources over the years that have been spent at various institutions for therapy, schooling, and at home to get Mahmoud to where he is today. Mahmoud has been enrolled in multiple therapy programs from 2014 until 2018 when we moved back home to Sierra Leone. These included but were not limited to:
Special Needs Pre-K class with the school district
Special needs private school for Kindergarten and 1st Grade
Applied Behavioral therapy (5 days a week)
Speech therapy (Bi-weekly)
Occupational therapy (Bi-weekly)
Tasks and activities suited to assist with the way he learns
We capitalized on Mahmoud’s strengths (memorization and his love for music) to teach him how to spell his name and learn the alphabet and the sounds they make and so much more through singing. I look at my daughter and see how natural and effortless things happen for her. For our son, it wasn’t or isn’t so easy. He needed therapy just to teach him how to do his buttons, wear his socks, clothes, tie his shoelaces, hold a pencil, maintain focus on tasks and communicate his wants and needs. Sometimes its sensory overload, which can be sounds, bright lights, crowds, people touching him, movements, smell and taste of foods. Imagine for a second, that you can hear things more loudly, see things more clearly, smell things more strongly, feel things others can’t and taste things differently and not being able to make it stop and it’s all happening at the same time. Meanwhile, you are asking him a question or asking him to complete a task while he is having all these feelings. These are some of the predicaments people with Autism have.
Over time, we learned from therapists and teachers, some coping mechanisms and techniques to help Mahmoud. For example, taking frequent breaks from academic work and activities, swinging, jumping on a trampoline, stimming, giving him gentle squeezes or pressure on his arms, giving him heavy things to lift or carry and so much more. Lamar Hardwick once said “stimming is like turning down the radio when you smell something burning. It’s a way of turning off the other senses so you can make sure nothing’s burning.” Stimming is a coping mechanism leveraged by Autistic children to calm themselves down and maintain their focus. It can be different for every child. For our son, it’s continuously twisting and watching a toy or any object for that matter that he can get his hands on. It could be a clapper, drumsticks, pencils, straws etc. Mahmoud will stim 24/7 if we let him. As parents and a family, we allow him to stim sometimes. We have learned to use that mechanism as a form of motivation when we want him to do or complete certain activities or tasks. For example, he gets to stim if he can accomplish and complete a non-preferred task or activity, schoolwork or try new foods.
Mahmoud’s autism has taught us so many things especially those most people including us take for granted. It has taught us to celebrate milestones whenever they come, it has taught us that every child is gifted and different, and that they just unwrap their packages at different times. It has also taught us that special education doesn’t mean that a student is incapable of learning. It just means that they may need different types of support in order to succeed. More importantly, it has taught us that the only cure for Autism is UNCONDITIONAL LOVE AND SUPPORT.
We feel the need to share Mahmoud’s story as often as we can. Not because we want attention, but to help increase awareness about the Autism disorder spectrum and because we want those around us (family members, friends and teachers, workers) to know and understand why and how we care for Mahmoud and the level of support and love that he needs when we are not around.
As parents, we shelter Mahmoud sometimes from certain places and people; not because we are ashamed of him, but because we know that some places might be too much for him to handle in terms of his sensory issues. We recall going to dinner one Friday evening at Sierra Light House as a family. The food was great, weather and ambiance were perfect but for Mahmoud it was not a pleasant feeling. They had live music that night and since he loves music so much, we thought he would enjoy it. It was the total opposite. He held his ears the entire time we had dinner and he mentioned it was too loud for him. We rushed through dinner, cut the evening short and got him out of there as quickly as possible, even though that wasn’t our original plan. If this had happened four or five years ago, this scenario would have been a total melt down. So, we are grateful that now he is able to communicate with us when something is bothering him and we are able to work with him to cope through it or if it proves to be too difficult for him, eliminate the triggers and/or remove him completely from the situation.
Sometimes, it’s ok to shelter children that are on the Autism Spectrum from certain places and people, however inclusion whenever possible, is advised, and much better for them in terms of overall development. They get to experience so many beautiful places, things, activities and meet so many people.
In Sierra Leone and amongst Sierra Leoneans worldwide, a lot of parents and families are still afraid and ashamed to share or express that their children or loved ones have Autism and or other conditions for various personal reasons, one of which we believe is stigma. Maybe we have just been lucky, but we have found that by sharing our story, we have made many come to understand and appreciate Autism and more so Mahmoud for who he is. Also, importantly, that there is no need for the societal stigma. We have received so much love and concern from our families and friends and they are all willing to support, provide shoulders to cry on, share articles or stories they feel would benefit Mahmoud and show him unconditional love and support. In reverse, we too have learned so much from others by sharing our story. Mahmoud’s overall development and social skills have improved so much more by us including him in activities and programs than excluding or hiding him from places and people.
We have heard so many horror stories of why people are ashamed of disclosing that their children or loved ones have autism especially in Sierra Leone. Our view or take on that is, the more people speak out, seek help and support, the better it is for the children and their families. There are many families affected by Autism but if there is no awareness and if no one speaks up, nothing will change. The more awareness there is, the more emphasis would be placed on advocacy from the communities and government to put measures in place to help those affected. For example, universities and other institutions of higher learning in Sierra Leone, could begin offering courses and /or Special Needs degree programs for students who are interested in the field. This is turn would mean that there is some knowledge and expertise with new graduate teachers to help children with special needs in schools. More special needs schools are needed all over the country and more jobs would be made available for teachers with those qualifications. It’s a win-win for all parties involved. Sierra Leone could benefit from increased funding and /aid from international organizations for special needs families, programs and schools. The more support and education we can provide to children and adults affected by autism to become more independent and educated, the better it would for their families and our society as a whole.
Sacrifice & Support
Our family has had to make a lot of sacrifices to give our son the best resources possible since his diagnosis five years ago. Just to list a few –
As a young couple, we both agreed for me to stay in the US so Mahmoud could receive therapy services that are not available in Sierra Leone. Early intervention is very critical and important to help with overall development in young children who are on the Autism spectrum. Our family separation put a lot of strain on our marriage, especially, since no doctor, teacher or anyone for that matter could tell us how long it would take before we would see improvements with the therapies and services received. We didn’t know how long our family would be separated and just had to pray and hope that our sacrifices would not go in vain.
Proper financial planning was and is still necessary to be able to provide Mahmoud with the resources he needs to be successful. This means limiting our spending habits at times. Special needs schools and programs come with a heavy price tag as almost everything is individualized and done on a 1:1 basis.
As parents, we have had to and still forego some social events, limit traveling to ensure Mahmoud is always with a caretaker we are comfortable with and one that understands his needs and wants.
Up until last year, all Mahmoud ate besides fruits, smoothies, selected snacks and dry cereal was rice and cassava leaves. Even though he eats and loves his rice and cassava leaves, he refused to eat any fish or meat in the sauce and just ate the plain rice and the sauce. We had to figure out a way for him to get his protein and other nutrients that were necessary. So, we learned to be creative by steaming the fish, chicken and meat, blend it and mix it in the soup/sauce. He has no clue he’s eating them. We also steam and blend spinach, brussels sprouts and carrots to add into the sauce. The seasoning and other ingredients are pretty much the same minus the pepper, so it tastes just like the regular cassava leaves.
Traveling anywhere with a Special Needs’ child that has a limited diet requires a lot of planning and can be quite stressful I hasten to add. We also must proactively check with the hotel to ensure a microwave and refrigerator are available in our room to keep and heat up his food. We always cook, freeze and travel with his food wherever we visit. We always seek help when it’s time to heat up his food whenever we are not in our hotel room and explain he is special needs because the hotels, restaurants, airplanes etc. are always reluctant and afraid of cross contamination with outside foods. No matter where we go or visit, we always ensure there are food and/or snacks for Mahmoud or we make sure he eats well at home if we weren’t going to be out too long, so that he doesn’t go hungry. For us and any other person that doesn’t have a limited diet, it’s simple. We could easily stop at a restaurant or any fast food or family or friend’s house and not have to worry about what to eat if we feel hungry. Some people who don’t understand would simply just say if he is hungry, he would eat whatever is available. Well, we tried that approach and I feel so bad for even admitting that we did that. My son was hungry at a daycare for almost two weeks not because he wasn’t offered food but because he just couldn’t tolerate and eat the food offered due to his sensory issues. Sensory meaning the food smell, texture and taste. He would gag or throw up depending on what he is not comfortable eating. I would pick him up from school and the first thing he would tell me was that he was hungry. The day care at that time did not allow outside food to be brought into the school and we didn’t know Mahmoud was on the Autism Spectrum and did not know that he had sensory issues especially as it relates to food. We all just thought that he was a picky eater and if left with no option he would try new foods. He didn’t last long at that daycare and we found one that accommodated his feeding habits and dietary needs.
We cannot take credit for all of Mahmoud’s progress and accomplishments to date. Mahmoud has a strong support group and system from our families, friends, teachers and therapists. It really does take a village to raise a child. We are not surprised because to know Mahmoud is to love him. He is such a sweet and kind-hearted boy and fun to be around. No matter what school he attends or therapists he interacts or works with, they always speak highly of him. His heart and behavior make it so easy to love him and give him the support he needs.
Autism is indeed a mystery. It is important to state that what works for one child may not work for another. They are all unique. According to Dr. Stephen Shore, “If you’ve met one person with autism, you’ve met one person with autism”.
For our son Mahmoud, he has made tremendous progress since his diagnosis five years ago. His speech and communication have improved tremendously; he also has improved eye contact and is socializing more with his peers. Mahmoud is also making progress academically (reading and writing) and working towards being more independent. He is now in the 3rd grade or class 3, has now added more foods to his diet like pizza, spaghetti, pancakes, chicken nuggets, fish, waffles and is willing to try new ones even if in the end he doesn’t eat them. He has always loved fruits and would eat a variety of those.
Mahmoud enjoys listening to music, swimming, jumping on trampolines, loves taking pictures and videos, has now learned to ride a bike (with training wheels) and driving his electronic car. He enjoys being the best big brother in the whole wide world. He is super protective of his baby sister even when it is at a disadvantage to him.
Despite Mahmoud’s tremendous progress, he still is faced with some struggles and challenges. He requires additional help and time with his some of his academic work. He receives tutoring three days a week and requires individualized support or small groups for some of his core subjects. At times, he still struggles with his speech and communication, especially if it’s on topics that are not of interest to him. He is not afraid to speak his mind and truth and is not a child who lies. He tells it like he sees it.
We are very proud of Mahmoud and we know that he would continue to defy the odds and achieve his goals in the long run if he continues to receive the appropriate support based on his individual needs with God’s help.
Our family reunited last August 2018 in Sierra Leone and that decision was not taken lightly. We worried whether Mahmoud would get the appropriate support he needs at school, we worried about him regressing as special needs resources are very limited in Sierra Leone. To date, we are pleased with the level of support he is getting and that he is being challenged at Brightest Beginnings Charitable and Educational Academy (SL) Ltd. This school has truly been a blessing to Mahmoud and our family. The class sizes are small enough to provide the attention he needs; his individual educational plan is customized – based on his learning style and progress and updated periodically as needed. Most importantly, this school truly works with special needs and non-special needs children and the children feel loved and accepted by all. So far, we feel comfortable that we made the right decision for him.
Our family is in the position to provide Mahmoud with the resources he needs to be successful with God’s help. But what about the many other children in Sierra Leone who are on the Autism Spectrum but do not have the financial means, nor the mental and emotional support from families, schools and society at large to help them achieve their goals and be successful in life? We decided as a family to establish a non-profit organization called ‘Puzzle Pieces SL’. This organization seeks to help raise awareness about Autism and funds to assist schools in Freetown and Sierra Leone that support children with Autism.
We hope that by sharing our story you will be inspired to always think about those children who are on the Autism Spectrum and others with special needs. We hope and pray that you would be able show empathy, understanding, love and support to get them through their struggles and uplift them instead of isolating, making fun of and /or tearing them down.
Please click ; for more information about our nonprofit organization Puzzle Pieces SL and ways you can help raise awareness and donate to help the less fortunate children in Sierra Leone receive the love and support they desperately need.
Nallah Cole holds a bachelor’s degree in Accounting and Information Management from the University of Texas, Dallas and a Master of Business Administration (MBA) from Southern New Hampshire University.
She is also a banking professional with over 15 years’ experience focusing on risk management, compliance, project management and internal auditing. Prior to her move to Sierra Leone a year ago, Nallah worked at Wells Fargo Bank in Charlotte, North Carolina as a Lead Compliance Consultant and as an Audit Leader within the Compliance Group and the Wells Fargo Audit Services Group (WFAS).
Since relocating to Sierra Leone a year ago to join her husband, Nallah has worked hard to establish a non-profit organiza tion called ‘Puzzle Pieces SL’ that seeks to help raise awareness about Autism and funds to assist schools in Freetown and Sierra Leone as a whole that support children with Autism.
As one of the founders of Puzzle Pieces SL, Nallah is working passionately to increase Sierra Leoneans’ awareness, understanding, acceptance and support (emotional, mental and financial) for children on the Autism Spectrum.
Ibrahim Cole is a Civil engineer and an entrepreneur with 15 years of experience at home and abroad. Holding a Civil Engineering bachelors and an MBA from The University of North Carolina at Charlotte and Winthrop University respectively. He is a cooperate member of the Sierra Leone Institute of Engineers.
Ibrahim has held several roles in industries ranging from infrastructure development, greenfield energy generation and oil and gas.
As a Sierra Leonean, the decision to return home after his studies was not easy but the drive to make an impact surpassed his fears and hesitation. As the CEO of Leonoil Company Limited. Ibrahim is committed to growing and cultivating local talent for leadership roles as can be seen with the youthful management team he has put together.
Ibrahim is an avid sportsman that loves all genres of music. As a father of an Autistic child, Ibrahim is passionate about educating and raising awareness about Autism wherever he is.