Championing Hope: Raising Adam, a Journey with Coffin-Siris Syndrome

In my world, there's a 12-year-old boy named Adam. He's not just my son; he's the inspiration behind every word I write today, and in almost every word I have ever written in my adult life. Adam has Coffin-Siris Syndrome, a genetic condition so rare that there are only around 200 confirmed cases in the entire world. As his parent, I've witnessed the unique challenges that come with raising a special needs child. However, in this article, I'm not to complain or seek help. Instead, I want to reach out and offer help to others who may be facing similar trials.

Raising a special needs child, like my beloved Adam, is undoubtedly one of the most enduring and life-altering challenges a parent can face. But what I've learned along the way is that it's not just the challenges themselves that define our journey; it's the community, support, and shared experiences that truly make a difference. Today, I want to share some of the challenges we've faced while raising Adam, not as complaints, but as a testament to the strength and love that drives us forward

Part-1: The journey begins

I always say that nobody can truly understand the challenges of a family with a special needs member except those who've walked a similar path. Our story, like many others, begins with the moment Adam first saw the light of the world. I held him in my arms, and in that instant, I sensed something was different. His facial features were not quite what we had expected, but we dismissed it, hoping it was just our imagination playing tricks on us.

As the days turned into weeks, we began to notice more subtle signs that something might be amiss. Adam's attention span was remarkably short, his voice tone was unusually low, and he rarely cried, even in moments that would make another infant wail. It was as if he possessed a high pain tolerance that defied explanation. Deep down, we knew something wasn't right, but we couldn't bring ourselves to admit it.

With hope in our hearts, we took Adam to a specialist for the first time. We described our concerns, the unique characteristics we'd observed, and the nagging feeling that something was amiss. The specialist, with a reassuring tone, told us not to worry, suggesting that Adam needed more exposure to other children to learn how to play and communicate. Hope surged through us, and we followed his advice, eager for change.

However, as time passed, we watched Adam grow older while remaining in that same isolated corner of his world. At 18 months, he still hadn't taken his first steps. Our unease grew, and we decided to seek a second opinion from another specialist. This time, the confirmation was not what we had hoped for. He gently told us that Adam was indeed a special needs child, and we would need to provide him with special care. Further tests were needed to pinpoint the specific syndrome he might be living with.

I tried to be brave in that moment, but my emotions overwhelmed me. Tears streamed down my face but I resisted and tried to hide them, I couldn't hold back the torrent of grief and fear that had been building up inside me. I wanted to shout, to scream out the injustice of it all. But I knew that being strong was not just for myself; it was for my wife, who stood beside me, equally shattered by this news.

Then a strange feeling hit me. I felt an overwhelming need for my mother, a deep longing to have her by my side. In my heart, I believed that she could fix everything. I just needed to sit in her lap and cry until I was out of tears. I was convinced that her comforting presence would miraculously make all our problems disappear, and my son would become "normal" again. The following day, I sent a ticket to my mother, inviting her to come and visit me. At that time, my mother's illness was slowly revealing itself, although nobody knew the full extent of it. When she arrived, her health had deteriorated significantly, and she had little to offer in terms of support. I couldn't burden her with my problems, as her own health problems were significant and demanding. And so, I made a conscious decision to put on a facade of strength, to show her that I was resilient and capable.

Looking back, I realize that was a mistake. I've learned the hard way that you should never hide your emotions or pretend to be strong when you need to lean on someone. Just cry when you need to cry and laugh your heart out when you need to laugh. Pretending only leads to self-destruction. My mother, God bless her soul, passed away a few years later, and to this very moment, I carry the regret of not being able to lay my head in her lap and cry until I had no tears left.

Part-2: A Beacon of Hope

In the midst of our shared pain, my wife and I found strength in each other. Our love for each other and for ?Adam, and our determination to give him the best possible life became the driving force behind our journey. We knew that the path ahead would be challenging, but we were ready to face it together as a family. “We were both engineers, and engineers fix things, or even make them better", I used to say to myself. It was a mantra I clung to, a reminder that our love and determination had the power to shape Adam's future, to help him overcome the obstacles that lay ahead.

Then a sequence of questions started to play in my head, like an unending reel of uncertainty. Would he be able to walk someday? Would he be able to talk, and if he did, would he be able to communicate effectively? Could he go to school, or were there other hidden challenges awaiting us on this journey? Would he ever achieve independence, be able to support himself, and live a fulfilling life?

And then, more complex questions emerged. Could he get married? Could he have children of his own? What would happen to him if I passed away? Would his mother be able to take care of him alone, and if the unimaginable occurred, if we both passed away, who would assume the responsibility of caring for him?. ?I can't count the nights I kept awake, shuffling inside my bed right and left, thinking about these things. They were long and lonely nights. I just felt abandoned by the universe, with only my wife, Adam, and me in this battle, while the rest of the world seemed to be living happily in their own Utopia. This burden felt like chains on both my hands and legs, making it even more challenging for a newlywed couple to comprehend. We were still very young to handle this level of challenge. I still remember those days and nights when I would sit by Adam's bedside, praying to God, asking for one simple thing: for Adam to walk. I couldn't bear the thought of having to carry him throughout his life, and the desire for him to experience the simple joy of taking his own steps was a keen hope in my heart.

Then, on his second birthday, as if our prayers had been heard, Adam took his first steps. It was a moment of indescribable happiness, a triumph that filled our hearts with uncontainable joy. His tiny feet moved tentatively, but with each step, he was defying the odds and making his own mark on the world. The happiness we felt that day is imprinted in our memories forever. It was a reminder that even in the face of immense challenges, there is hope, there is progress, and there is the unbreakable spirit of a child who refuses to be defined by his condition. That moment marked the beginning of a remarkable journey, one filled with ups and downs, victories and setbacks, mountains and valleys, but always guided by our unwavering love for Adam and our determination to give him the best possible life. In him, we found a beacon of hope, a source of inspiration that continues to light our path forward.

Part-3: A Gift from God

The journey with Adam led us through a maze of expensive medical tests, genetic examinations, and consultations with different specialists, each offering their unique perspective and opinion. It felt like everyone had an answer, yet there was no consensus, and we found ourselves caught in the frustrating middle of this mess. There was no final diagnosis, no clear path forward, and the uncertainty was agonizing. It was a testament to the rarity of Adam's condition that made it exceptionally challenging to pinpoint.

During this chaotic period, life had a way of balancing itself. We were blessed with our second child, a healthy newborn named Layla. She was a gift from God, a shining light in the midst of our uncertainty. But, initially, our joy was marked with fear. Throughout her mother's pregnancy, an unsettling worry crept into our minds, that our genes might carry a hidden burden, and we were terrified at the thought of our children suffering the consequences.

To ease our anxieties, we sought the counsel of even more specialists. We needed reassurance, not just for our own peace of mind but for the well-being of our growing family. We needed to ensure that we wouldn't pass on any inherited problems to our children. Once again, we were caught in the whirlwind of predictions and assumptions, searching for clarity in a world of uncertainty.

Then, Layla came into our lives. When I held her for the first time, I couldn't help but think she was the most beautiful baby I had ever seen. Tears streamed down my face, but this time they were tears of profound gratitude. I cried, cried, and cried, thanking God for the precious gift of a healthy child. In that moment, our fears and uncertainties faded into the background, replaced by an overwhelming sense of love and joy. Layla's arrival brought a sense of completeness to our family. She was a reminder that, despite the challenges and unknowns we faced with Adam, there was also immense beauty and hope in our lives. We were ready to embrace whatever lay ahead, armed with the love and support of our growing family.

Part-4: Embracing the Challenges

When Adam was between 3 and 4 years old, he was incredibly energetic and spirited. He had a consuming curiosity and a kinetic energy that seemed boundless. He played with everything he could get his hands on, leaping and bounding like a yoyo, and darting around as if he had an endless reservoir of energy. Keeping up with him became a daily adventure, both inside and outside our home.

His boundless energy often led to challenging situations, making it difficult for us to maintain connections with friends and family. The constant activity made it nearly impossible for us to visit family members or have guests over. At this point, we still hadn't received a definitive medical diagnosis for Adam's condition, but we made a thoughtful decision, my wife and I, to shift our focus away from seeking that diagnosis and instead channel our energy into Adam's education and providing the support he needed.

During this period, our world felt quite small. We couldn't venture far, and we couldn't contribute to the simple joys of visiting loved ones, or going to a mall or a restaurant like a normal family. We became isolated and felt alone. Specialists had advised us that TV could worsen Adam's restlessness, so we made the choice to stop watching it altogether. Instead, my wife abandoned her career pursuit as a civil engineer and focused on helping Adam. She took Adam to the park daily to let him burn off his boundless energy. It was our way of helping him cope with his spirited nature and providing an outlet for his endless movement.

The park outings became a routine that we maintained daily for two years, and they were not without their challenges. We often faced curious looks from strangers and felt the weight of their pity. In the beginning, we were sensitive to these glances and judgements, but with time, our skin grew thicker. We realized that our priority was Adam's well-being and development, not the perceptions of others. As the years passed, our perspective shifted, and we began to feel a sense of pride in the unique journey we were on with Adam. We learned to embrace his spirited nature and celebrate his quirks. The challenges we faced became opportunities for growth and resilience, both for us as parents and for Adam as he navigated the world with his boundless enthusiasm.

Part-5: Navigating the World of Autism

During that time, my wife connected with a circle of special needs parents, each with their own unique experiences and challenges. From one parent to another, recommendations led us to a specialist who eventually diagnosed Adam with autism. With this new diagnosis came an outpouring of well-intentioned but conflicting advice: discussions about autism and vaccines, concerns about heavy metals, suggestions of detoxification, and offers of various Oxygen therapies and pills. It was a whirlwind of information, and we found ourselves at a crossroads.

Amidst all these recommendations, once again we made a conscious choice. Instead of delving into uncharted territories, we decided to focus on Adam's education and behavior. It was a decision that reflected our belief in the importance of fostering his potential and helping him navigate the world, one step at a time.

We held a dream close to our hearts: Adam would attend mainstream school by the first grade. Achieving this dream required unwavering dedication and relentless effort. His mother, in particular, went above and beyond anything we could have imagined. She would spend hours holding Adam in her arms, tirelessly attempting to communicate with him through songs and storytelling. We even hired an expensive special needs teacher who worked diligently to teach him words, letters, writing, and anything that would prepare him for school.

With tremendous effort and dedication, we thought we were ready to take the next step in Adam's education journey. However, we soon realized that the world outside our home was not always as accommodating as we had hoped. Schools, despite our best efforts, were hesitant to accept Adam without the presence of a shadow teacher to provide additional support. Determined to give Adam the best possible chance at mainstream education, we hired an expensive shadow teacher, believing it was the key to unlocking his potential in a typical classroom. But after just one week, the school informed us that the arrangement was not working as expected.

Part-6: Sacrifice and Determination

In 2016, Adam was 5 years old, and I was approaching 35. I had once been presented with opportunities to pursue a Ph.D. degree at prestigious universities, but I had chosen to waive them. My primary focus was on Adam's support; I believed that I needed to be available for him at all times. My world revolved around ensuring that he received the care and attention he needed, so I kept all my dreams in the freezer waiting for the right time.

However, there came a day when something shifted within me. I realized that I couldn't postpone my dreams indefinitely. I had to get my Ph.D. degree, even if it felt like it was too late. This was a significant step forward, not just for me, but for my family as well. It was a decision driven by the belief that education could open doors to a better future for all of us.

In 2016, I embarked on this challenging journey. I continued to work full-time in my job while pursuing my Ph.D. part-time. It was an exhausting and demanding schedule, and I found myself struggling financially. Adam began attending a special needs center, which, as many parents of special needs children can attest, can be excessively expensive.

To finance my education, I obtained a partial university scholarship, which helped with the costs but did not cover everything. The financial burden weighed heavily on me, and I had to make difficult decisions. I sold my brand new SUV, and replaced it with an old, cheap car. It was so old that I hardly recognized its original color when I first purchased it. I just needed a metal box with wheels and seats. I also worked extra hours to earn more, and tried to balance the demands of work, family, and my studies. It became routine for us to run out of money halfway through the month and rely on the coins we had just cracked open from the piggy bank. There were even times when our mobile and internet service, and other utilities were temporarily disconnected due to unpaid bills. Our life became a chaotic juggling act, unlike anything you’ve ever seen, not even in circus shows.

There were moments when I was on the brink of giving up on my academic pursuits. The stress was overwhelming, and I felt like I couldn't handle it all. But it was the very challenge I faced, the need to secure a better future for Adam and my family, that kept me going. I pressed on, determined to overcome the obstacles in my path. In those trying times, I owe an immeasurable debt of gratitude to my late father, may his soul rest in peace. He supported me both financially and emotionally. He was the bedrock, the very concrete that held my world together. During those windy nights, his enduring love and presence were my anchor, my unwavering shore amid the stormy seas of life.

Then, against all odds, I reached the culmination of my academic journey. I graduated with a Ph.D. in Architecture and Sustainable Built Environment from The British University in Dubai . If you were to ask me how I managed to achieve this feat, my honest answer would be, "I don't know." But what I do know is that I received an abundance of support; from my loving wife, from the memory of my late father (may his soul rest in peace), and from my brother Waleed AlHamad and my sisters Nancy AL Hamad , Maisoon, Alia, and Rasha. Moreover, I had the best Ph.D. supervisor any student could have, Prof. Riad Saraiji , a great researcher, educator, and mentor. The support he gave me knows no bounds and exceeded any expectations I could have imagined. I also had a great teacher, Professor Dr. Hanan Taleb , and a remarkable dean, Professor Bassam Abu-Hijleh . Moreover, I got plenty of support from my colleagues at United Arab Emirates University , Professor Emad Elnajjar , Professor Salah Omari , and my best friend and brother, Dr. Waleed Ahmed . With all that support pouring on me from different streams, I was able to achieve what I once considered impossible.

Part 7: Mohammad Al Zubi

Then we met Mohammad Alzubi, Adam's hero; a dedicated, young, and charming special needs teacher. The timing was challenging, and we needed to bring a teacher into our home to provide support for Adam. Mohammad stepped into this role with incredible dedication.

Mohammad had a plan, a structured approach to helping Adam achieve his potential. We would sit together weekly to discuss Adam's progress and achievements. It became evident that Mohammad was not just a teacher; he was a catalyst for transformation in Adam's life.

Two individuals, in particular, played pivotal roles in shaping Adam into the incredible young boy he was becoming; his mother and Mohammad Al Zubi. Adam adored Mohammad. He would eagerly wait for him outside our home when it was time for his class. Their bond was heartwarming, and Mohammad's patience and belief in Adam mirrored the faith I had always held in my son.

Under Mohammad's guidance, Adam accomplished remarkable milestones. Mohammad taught him practical life skills, from brushing his teeth to kicking a ball, from mastering a proper handshake to holding a pen and writing more letters. Their bond extended to teaching Adam the importance of handwashing during the pandemic. Mohammad would accompany him to the wash basin, patiently showing him how to wash his hands thoroughly with soap, instilling vital hygiene habits

I have always believed in Adam and his potential, and Mohammad shared that belief wholeheartedly. Together, they forged a powerful partnership, and I was confident that Adam could achieve more than anyone had ever expected. As Adam loved Mohammad, I found myself holding deep admiration and gratitude for him as well. I was profoundly aware of the debt our family owed to Mohammad for his unwavering support, dedication, and the remarkable impact he had on our lives.

Mohammad Al Zubi became not just Adam's teacher but also a cherished member of our family. He exemplified the profound impact that dedicated educators can have on the lives of their students, particularly those with special needs. Mohammad's unwavering support and his genuine care for Adam were invaluable, and we would forever be grateful for his presence in our lives.

Part-8: Zayn

A time came when our family was ready to expand. Adam was 9 years old, and the persistent fear of passing on a genetic condition to another child still haunted us. We couldn't take the risk of having another baby until we were certain that our genes were in the clear. So, we embarked on another journey with specialists, but this time, it was different. We had grown more mature and gained valuable experience. We were older, wiser, and less emotional. We had transformed into independent decision-makers, capable of approaching our challenges with a rational mindset.

In our quest for answers, we found ourselves in the care of a remarkable specialist, Dr. Aisha AlShamsi from SEHA Tawam Hospital . She was an understanding healthcare provider and a role model for all medical doctors. For parents of special needs children, a doctor is akin to a lifebuoy, a lifeline of hope in the sea of uncertainty. Unfortunately, not all doctors understand the depth of this need. When I visit a specialist, I need assurance. I need to know that the doctor was knowledgeable about my case, had dealt with similar situations before, had thoroughly reviewed my medical history, and would diligently follow up on my case. Most importantly, I need to leave their office feeling better, not worse. Dr. Aisha provided all of that and more.

I want to express my heartfelt gratitude to Dr. Aisha for her invaluable help. She understood our situation, ordered the appropriate medical tests, and provided us with the result we had long awaited; a diagnosis for Adam. It turned out to be a de novo genetic mutation in the ARID1B gene, which translates to Coffin-Siris syndrome. This discovery brought both clarity and relief. Importantly, it meant that our genes as parents were free from any concerns. We could confidently consider expanding our family without the fear of passing on a genetic condition.

And so, with newfound hope and reassurance, we welcomed Zayn, my third child and son, into our lives.

Part-9: Adam the independent

The pandemic had finally retreated, and Adam had reached the age of 10. It was a milestone we had longed for, a time when he was no longer a burden but had blossomed into a much more self-assured and independent individual. The days of relentless naughtiness were behind us, replaced by a newfound calmness. He could now sit still, and occupy his time with a variety of activities, from watching TV to playing, and even singing. Although he couldn't engage with other children outside in the typical way, he had learned to enjoy being around them. The transformation was remarkable, and Adam was no longer the restless child we once knew. He had found his own rhythm and ways to express himself.

With the arrival of Zayn, our youngest family member, we had a few concerns that Adam might be jealous or unintentionally hurt his younger brother. However, our worries proved unfounded. Adam surprised us with his gentleness and affection. He was brimming with emotions, and he expressed his love and joy by showering his siblings with kisses and hugs. He adored his sister and brother, and we could see the deep connection they shared.

When I pick Adam up from his special needs school, he eagerly asks for Zayn as soon as he enters the car. He relishes going with me wherever I go, and I make sure to take him along whenever possible. He had become an active participant in household chores, readily tidying up his room, taking out the trash, and eagerly responding when I asked him to bring me a glass of water. He had also made significant strides in his independence. He could read and write a few words, navigate his way through the mall on his own, and maintain focus and attention outside. He’s a responsive listener, readily following orders, eating and drinking independently, and even making sandwiches and grilling them. Perhaps one of the most significant achievements was his ability to use the toilet without any assistance. These were milestones we had once only dreamed of, and witnessing his progress filled us with immeasurable pride.

I am proud of Adam, proud of his mother, and proud of myself. We had come a long way as a family, and though we understood that there were still challenges ahead, we had learned to celebrate every achievement, no matter how small. I genuinely feel that if God has chosen me and blessed me with this extraordinary child amidst billions of people on Earth, it can’t be without a greater cause. I am proud of you, Adam, and I will always be.

Part-10: Reflections on Our Journey

When I used to look back and assess how we handled Adam's case, I would often ponder whether we had made the right decisions or if we had made mistakes along the way. Questions would arise: What if we had taken a different path? What if he had tried a different medication or sent him to a different school? Would he be in a different place now? But my perspective has evolved over time. Today, I no longer dwell on the idea of right or wrong in facing these challenges. Instead, I believe that in such situations, what truly matters is doing your best and being passionately convinced of it. It's about making conscious decisions through open discussions and knowledge-sharing with your long-life partner. And above all, it's about the power of unconditional love; for Adam and for my wife, as we both face the same challenges together. It's a love that remains unwavering no matter what challenges or uncertainties come our way.

Then comes the expectations, it's not about lowering them. Instead, it's about cherishing every small achievement. When facing these challenges, making giant leaps is not the solution. Rather, it's about taking tiny, measured steps, similar to the tiny steps Adam took when he first walked. I won't sugarcoat it; it will be tough and filled with challenges. However, it will also bring immense rewards. What's crucial is not to place undue pressure on your child. Understand that these are the achievements within their current capabilities. Pushing for more may not benefit them; in fact, it might cause undue stress, and your child will be the first one to suffer, and you will be next. The road is long, full of twists and turns, and you have to remain in control.

Then comes the community around you. Throughout the past 12 years of dealing with Adam's case, we've encountered various kinds of people. There is the curious, who seems insatiably nosy and needs to know everything about everything related to Adam. There is the pitying, who continuously reminds you of your challenges, and projects how impossible they might become in the future. The indifferent, who offers no excuses or understanding of your situation. The fearful, who keeps his children away from you and your son, fearing he might cause harm, despite Adam's gentle nature; he wouldn't hurt a fly. And then, there is the gloating, who sometimes assume that you must have done something bad in your life to deserve it, as if your challenges were a form of divine punishment. Then, there is the surprised, often caught off guard by the behavior, or the way your son communicates. The evaluator, who tends to measure him against other better-performing special needs children, and sometimes even compares him to a healthy child. And then comes the meddler, who consistently criticizes your approach to handling the situation, offering needless do's and don'ts for your life, and citing what he saw on TV or on Instagram shorts. There is also the envious, who thinks you are lucky for parking in the special needs spot, overlooking the countless difficulties and sacrifices that you endure on a daily basis. And finally, there are those who may like you but prefer to keep their distance. These are the type of people you should distance yourself from.

On the other hand, there is the supportive; those who go out of their way to assist you and become your pillars of strength during your darkest hours. There is the loving, who genuinely cares for you and your son, embracing him warmly into their lives. And there is the considerate, who appreciates your challenges and extends his understanding, offering excuses when needed and never adding unnecessary pressure. These are the kind of people you need to keep in your life. ?

Furthermore, our journey has helped us gain a deep understanding of what truly matters in life: family. Family is the cornerstone of our existence, comprising fathers, mothers, sisters, brothers, sons, and daughters. It's this tightly woven fabric of relationships that provides unwavering support in times of need, extending a helping hand whenever required. Through our experiences, we've also come to realize that the material possessions we once placed great value on are ultimately insignificant. Whether it's the car we drive, as long as it decently moves, the clothes we wear, as long as they are clean, or the food we eat, as long as we enjoy it together, what truly counts is the joy and satisfaction we find in the simple pleasures of our life.

On a personal level, Adam has profoundly changed me and transformed his mother's personality as well. The journey with Adam showed us that you don't need to master a language to teach something. You don't need to be comprehensive and confound either. You just have to be honest, with the few words that Adam can say, and with his weakly-structured sentences, he has taught us a lot. Thankfully, he has brought us closer to God. We've come to the conclusion that having a special needs child is not a matter of choice, nor is it anyone's fault. It's a test from God, one that assesses our patience and endurance. In this test, God provides us with closed doors and the keys to open them, but only one at a time. Moreover, Adam has imparted wisdom and calmness upon us. We haven't become insensitive, but rather, we view life with a clearer perspective, ready to make decisions. We cherish the small moments and patiently anticipate the next one. We set goals and diligently work towards achieving them. We deeply appreciate the people who've offered their support. We've learned not to dwell on regrets but instead to look forward with unwavering focus. Through the hardships and struggles, we've learned the art of balance in our lives alongside this challenge. Above all, we've discovered the profound power of unconditional love. Love is what has sustained us, and it's love that propels us forward.

?

Part-11: Living in the UAE

"Disability is, in fact, the inability to make progress and achievements. The achievements that people of determination have made in various spheres over the past years are proof that determination and strong will can do the impossible and encourage people to counter challenges and difficult circumstances while firmly achieving their goals." These profound words by the visionary leader; Sheikh Mohammed bin Rashid Al Maktoum, Vice President of the UAE and Ruler of Dubai, resonate with the essence of the term 'people of determination,' which he introduced in 2017. The introduction of 'people of determination,' in UAE sends a powerful message to the world: that the true measure of a society's progress and humanity lies in how it treats its most vulnerable members. It serves as an inspiration and a testament to the nation's commitment to fostering an environment where everyone, regardless of their abilities, can lead fulfilling lives and contribute to the betterment of society.

In our personal journey alongside Adam, we have borne witness to the immense support provided by UAE governmental institutions, including the Ministry of Community Development , the Zayed Higher Organization for People of Determination ????? ???? ?????? ?????? ????? , and Department of Health Abu Dhabi . These organizations have played a pivotal role in enhancing the lives of People of Determination across the UAE. One such invaluable service bestowed upon us was the POD card for Adam. This card serves as official recognition of his distinctive needs and opens the door to a range of essential services. The process of obtaining the card was seamless, and it came at no cost, all thanks to the compassionate guidance and unwavering assistance of dedicated individuals who walked beside us every step of the way. What's even more remarkable is the card's ability to unlock discounts for a multitude of services, easing the financial burden that families like ours often bear.

But it doesn't stop there; what truly touched our hearts was the UAE government's commitment to the cause. They've gone the extra mile by ensuring the automatic renewal of the POD card, displaying an enduring dedication to the ongoing support of individuals with special needs. They've even gone so far as to personally deliver the renewed card to our doorstep, epitomizing the UAE's dedication to its people. Additionally, the Zayed Higher Organization for People of Determination gifted us with a special needs parking pass. This seemingly small gesture has had a monumental impact on our daily lives, simplifying our routines and vastly improving our family's overall quality of life. The pass can be used at any Emirate not only Abu Dhabi.

Moreover, the Department of Health in Abu Dhabi has introduced a service of immeasurable value. It's aimed at enhancing the lives of residents falling under the categories of People of Determination and orphans below the age of 18. This service makes it effortless for eligible individuals to apply for an Aounak card, which can be conveniently obtained from their website or through the TAMM Abu Dhabi Government Services platform. We are in the process of getting this card to our beloved Adam.

In Dubai, the Road & Transport Authority - RTA offers a range of benefits for families with special needs members, including a free SALIK tag and SALIK toll exemption. However, as residents of Al Ain, we chose to take advantage of the Free DARB program, which grants us an exemption from the Abu Dhabi toll gate systems from the Abu Dhabi Mobility . This initiative exemplifies the UAE's commitment to easing the daily lives of families with special needs members, ensuring that transportation is not a burden but a convenience for all its residents.

e& UAE , our personal favourite telecommunications company in the UAE, has demonstrated a remarkable commitment to supporting families with People of Determination. Their dedication goes beyond mere words, as they have taken concrete steps to make a difference in the lives of those facing unique challenges. Upon presenting our POD card, Etisalat extended to us a generous 50% discount on both our eLife subscription and mobile plans. This gesture has been invaluable, significantly reducing our monthly expenses and helping to alleviate the financial burdens often experienced by families in similar situations.

Then we were gifted "FAZAA HEMAM" card. This initiative is dedicated to the well-being of People of Determination, an exclusive e-card accessible through the Fazaa L.L.C program. The "FAZAA HEMAM" Card offers various discounts at numerous stores, pharmacies, and service providers, contributing to the enhanced quality of life for People of Determination across the nation. This initiative reflects the UAE's commitment to providing exceptional support and services to this important segment of society.

Every year, UAE continues to demonstrate its unwavering commitment to supporting People of Determination by introducing an array of new services and initiatives. These initiatives extend far beyond mere words, showcasing the nation's dedication to fostering inclusivity and compassion. One such remarkable provision includes free passes of POD children to various recreational facilities, including playgrounds, swimming pools, and play courts. These passes not only provide access to these venues but also create opportunities for individuals with unique abilities to engage in physical activities, socialize, and lead active lives.

The UAE's consistent efforts to expand these services and initiatives demonstrate a profound understanding of the diverse needs and interests of the POD community. It reflects the nation's commitment to ensuring that every individual, regardless of their abilities, has access to essential services that enhance their quality of life.

Part-12: Future Projections

The future remains uncertain, a vast horizon of possibilities that we cannot predict. However, we are committed to doing our best to prepare for it. Our journey with Adam is far from over. Adam, now 12 years old, has already shown us his remarkable resilience and strength, and we hope and pray that God grants him many more years filled with life's joys and experiences. In many ways, we are still at the beginning of this road. The next few years will be pivotal, as they will significantly influence Adam's life and shape his future. We are about to embark on the journey of dealing with puberty, and the challenges that come with teenage years. It's a new phase, one that brings its own unique set of experiences and hurdles. However, we are ready and prepared to face this new challenge head-on.

In addition to my personal journey with Adam, I have dedicated a significant portion of my efforts to raising awareness among my students about special needs. As the advisor of the ASME (The American Society of Mechanical Engineers) at UAEU, ASME UAEU Chapter , I have spared no effort in introducing my students to the challenges faced by individuals with special needs and the critical importance of early intervention. I believe that although these students are the engineers of the future, they will also become the parents of the future. Moreover, I strive to show them that the engineering science we are teaching them can be used for higher causes, bridging the gap between technical knowledge and humanitarian values.

I vibrantly recall a heartwarming experience when I took some of my female students to visit a special needs center. Our purpose was not only to bring gifts for the children and make them happy, but also to instill awareness in them as future mothers. Similarly, I organized a field visit for some of my male students to the workshops of Zayed Higher Organization for People of Determination ????? ???? ?????? ?????? ????? . During this visit, they had the opportunity to witness the remarkable workshops where students with special needs were engaged in activities such as carpentry, garment manufacturing, and candle and soap production, among others.

Furthermore, I have a well-defined plan to allocate a significant portion of my research endeavors to address critical issues within the realm of special needs. Beginning with an emphasis on special needs architecture, I aim to enhance the design of spaces and environments to make them more inclusive and accommodating. Currently, I am engaged in a collaborative effort with Dr. Saeed AlNuaimi to integrate cutting-edge technologies into special needs education. Our mission is to harness the power of innovation to create tailored solutions that optimize the learning experience for individuals with special needs. By linking engineering with empathy, I am dedicated to paving the way for a brighter future for those who deserve equal opportunities and support. It’s all about giving back. When you receive generous support from your surrounding community, it becomes a moral obligation to give back in return

This is our story with Adam. In the early stages of his life, it was just my wife and me, learning and growing alongside our remarkable son. But now, we have grown to five; myself, my wife, Layla, Zayn, and we eagerly anticipate the arrival of Salma, our newest addition. Not to mention the people who love and support us. As we expand our family, our journey with Adam continues to evolve, and we remain committed to providing the love, support, and understanding that he and all our children need to flourish. With each new day, we learn, adapt, and grow as a family, finding strength in the love we share and the unwavering determination to provide the best possible future for our beloved Adam and all our children. The future may hold uncertainties, but with faith, love, and resilience, we are prepared to face whatever challenges and joys it brings our way.

Issah M. Alhamad

A proud parent of a special needs boy