It is well known that parents with special needs kids face a lot of challenges with their kids; whether with their diagnosis, therapy or with the community itself. Until this day, people are still suffering from such difficulties, all because of the lack of awareness and education are given to people around them.
Therefore, in this article, a group of mothers of special needs kids shared their experiences to show or even inspire other families on how to address and meet such challenges. It is a fact that every journey is different from the other, but the goal is mutual “Raising happy, independent and successful kids”.
Dua Hayek: “The challenges are many. It all began from the diagnostic stage when we found a lack of specialized parties. The journey of diagnosing my son, Saif, was not easy; two years of continuous visits to doctors in various specialties: Pediatrics, ophthalmologists, Neurologists and Otolaryngologists (ENT)! After my child was diagnosed with Autism, I faced other challenges which I consider very important, the inclusion with society and into schools. I think the main reason for this problem is the lack of awareness about Autism, its nature and ways of dealing with an Autistic child. There are no places or schools in Jordan that offer real and effective integrations for Autistic children.
In this sense, I had to give up the help of doctors and schools, because I believed in my child’s abilities, and I worked hard with him to develop his skills in everything he liked. It is true that it is a difficult and arduous journey to overcome challenges and difficulties that lie in acceptance and satisfaction. We have no solutions but to be stronger than everything around us. From my side, I promised Saif to be his eyes, his hands, and his tongue that does not speak. “The world will love my child because I am the one who will spread love and positive feelings around him.”
Tala Rawhi Halaseh: “The biggest challenge was to get our families to accept him the way he is. Teaching them how to talk and behave with our son. Introducing the concepts “sensory overload” and “sensory seeking”. Making them understand that this is a lifelong challenge and cannot be cured by medicine.”
Nancy Kawar: “My journey began after my son, Zaid, was diagnosed at the age of two and nine months, that period was filled with difficult and sweet memories; difficult because I had to deal with him firmly, like forcing him to sit in his seat and follow orders, his weeping, which filled the house. And, sweet because after the exhaustion and tears for a whole year, Zaid managed to call me “Mmm”. After that, Zaid began to improve, accepting other people interacting with him, continued to develop. Sometimes he would succeed in one thing then fail in another, which frustrated me because I believed that whomever can get to this level can reach a higher and a better one. The challenge was at its hardest when his doctor decided to prescribe him medicine that would help him develop and accomplish tasks, I completely refused the idea, but, after my family convinced me that it might be, indeed, useful for Zaid, I agreed.
It is true that I was suffering from the inside whenever I saw him sitting quietly, lacking energy. But, he learned a lot at that time; he learned to read and write in Arabic and English. And after three years, we got rid of drugs–thank God.
Another challenge we faced is the perception of society. I had to have sharp reactions with anyone who tried to interfere with my child’s situation; to either simply talk about him, or give advice. My answers were limited to, “Thanks, I know!” or “Yes, sure!” or “No thanks.” I would not allow anyone to cross those borders. We also had to face the behavior of child caretakers at children’s activity centers, which wasn’t nice. I could see from the very first 5 minutes when I start explaining my son’s case that they won’t accept him or take responsibility.
Based on what we went through, I felt that the most important challenge was to build my son’s self-confidence because I believed in his abilities and successes. I have always said that there are mothers like me, but I have responsibilities that differ slightly from them. Zaid is the hero of this journey, he who lives the pressures and bear them, and tries hard to challenge his problem and record his successes in this uncompassionate society.
Our journey is not easy, I was known for my carefree personality, I loved going out and just having fun. Even my parents did not think I would take my son’s case seriously! I don’t know how I have changed, I became a mother and the first and most important specialist for Zaid. I see that a strong mother is one that does not receive difficulties and negative emotions, but takes the lead and challenges the world all around to reach her goals with her children. The more we overcome the difficulties, the more God gives us greater power.
I always consider myself lucky for having a very strong support system; my husband is my backbone who gives me strength to face whatever comes our way, the tenderness of my father, my mother’s kindness, the encouragement I get from my sister and brother, and Zaid’s aunt lina and his uncles is endless, with their support I am able to challenge the world with Zaid.”
Luma Jamjoum Barakat: “My journey with my son with special needs taught me that there are no magic potions. Patience, satisfaction, and acceptance are the treatment for me and my child. My journey with my son put me under the magnifying glass, being subjected to sentencing and exploitation because we resorted to many trials of treatment. Strength was my only resort; I became the first and last defender of my child’s rights to enjoy a life filled with love and respect.t. To be honest, I went through frustrating days, as if I was facing a dead road, but for some reason – Thank God- things would get easier, and I wake up the next day full with energy to start working again, it’s like I want to challenge these encounters, the harder they get, the harder I work. . My biggest motivation is my son, especially when I see his progress and development. A lot of people have helped me, and I welcomed them with open arms. This is what I have learned from my son, to be patient, work hard, and learn from others. I became a big believer that exchanging experiences between parents has a positive outcome on us and our kids. I don’t feel alone in this world anymore.”
Sanna Aqileh: “I began to feel that my son was having a problem when he was one year and two months old, and I shared my doubts and concerns with the family, but they did not agree with me. However, I followed my intuition five months later, I took him to a center to assess his case.. When he was diagnosed, we started to work with him to train and enhance his skills. The specialists advised me to enroll him in a nursery so that he would interact with other children and stop watching television; and I did, I enrolled him and informed them about the television issue, and then one day, one of the teachers approached me saying that as soon as I drop him off, they put him in front of the Television until I come back to pick him up! I was shocked, they fooled me! .
Since then, our long journey has begun; nights filled with tears and pain, teaching him how to eat by himself, going to therapy sessions all the time, training him at home so he can finally call me MAMA.
It is true we had to delay a whole school year and the challenges were big, but most importantly, I accepted him for who he really is, I am confident in his abilities and happy with his achievements. He is now in second grade, he is still learning Arabic, while English is easier for him. I will always stand by him to help him throughout this journey and beyond.”
Mother of a child with special needs (The name was not mentioned upon her request): “We faced a lot of difficulties. I didn’t know of their existence until we faced them, like when my son began to make strange noises in public and people would stare and start judging, “why does this mother ignore her son’s crying? Why don’t you give him what he wants?”. Or, when some people approach my son to play with him, and then notice that he does not speak, they look at me with the a look that says, “Poor mother, it is clear that her child suffers from some issue. What do we tell her? Do we tell her that children of his age are verbal?” After thinking, they ask me this question, “doesn’t he speak yet?”, well my answer depends on my mood that day, whether I am in the mood to explain his case, or just ignore the question. Some people would say that they might have good intentions, and I know that, but it becomes really annoying with time, especially when it happens every day.
Another challenge is to find the right treatment course for our kids. We have a hard time with this community while we are trying to create the right environment and treatment for our children. Whenever we encounter such consequences, I feel like I am at crossroads; “What should I do? Should I give up all the aid and devote my time, effort, and energy to treating him alone and not take care of myself and my marriage? Even people around me keep encouraging me to take care of myself, find a job, . But, how? I cannot sleep at night worrying about my son’s future.. How can I continue with life as if it’s normal?”
I find myself always in the vortex of my thoughts. I think the hardest challenge is finding balance and harmony between myself, my son, my family, my husband, my dreams, my children whom I am afraid to give birth to, and my son’s treatments, financially and Occupationally. All of these are out of our control, and we try to do the best we can.
*This article was published in collaboration with the Support group for parents with kids with Autism, intellectual disability in Jordan