He looks like any other healthy child, he walks, smiles, and even giggles, but for no apparent reason, we wake up one day and discover that he is silent and retreating into a spiral of darkness that is kidnapping him from his family and the brightness of life, locking him up in a circle of incomprehension that keeps him out of touch and reach.
Autism is seeping into our families and lives, wrecking havoc and inflicting silent suffering where ever it hits. Recent statistics indicate that one out of fifty children suffers from a manifestation of this epidemic, a recent study published in the Saudi Gazette alarmingly claimed that in Saudi Arabia alone, more than 100,000 children were diagnosed with ASD and their numbers were not exhaustive.
Arab Women Mag met with Jemman Ammary, a mother who experienced first-hand what it is like to raise a son with autism. At the age of one year and eight months, her youngest son Hashem, showed the first symptoms of Autism, he simply didn’t talk. Jemman sought help and advice from doctors and physicians in Jordan, but was shocked by the mixture of varying and inconsistent diagnoses that each doctor gave her. Some blamed allergies for causing the condition, while others spoke of general health problems. One even had the audacity of claiming that her son was mentally retarded. Frustrated of such inadequate and irresponsible medical care, this mother; refusing to surrender, started researching and reading for months on end about the condition of her son to realize that he was suffering from Autism.
With an inadequate infrastructure, dearth of resources, non-existent awareness and understanding in the Arab world regarding Autism, doctors here told Jemman that there is nothing she could do and that she should just learn to accept the condition of her son and live with it, but as a mother following her intuition and maternal instinct she refused to give up and continued her quest to bring her son back. “It was like Chinese to me. I had no clue what I was up against.” She said. Then she came across a book written by M. D. Kenneth Bock. “That book changed my life” she said.
Jemman contacted the author and pleaded for a meeting. “The earliest they could see my son was seven months away. I panicked as time is crucial for autistic children, the sooner they could start therapy, the better chance that their symptoms could be controlled.”
Jemman managed to get her appointment and booked two tickets to New York. “I was supposed to be gone for two weeks, and I ended up staying for four years.” During those four years, Jemman worked closely with doctors, therapists, and trainers, learning from them and gradually watching her son improving, till he started speaking again.
When it was time to return back to Jordan, another battle began. Jemman searched for a school that would accept her first grader, and she realized that it was almost impossible, as local schools lack programs that can accommodate children with Autism. Finally when Jemman thought that all doors were closed, she received a call informing her that her son was accepted, but on the condition that she provides a trained shadow teacher and give full support whenever needed. When asked about his first day in school she said: “I lived in constant fear, waiting for that call telling me to come to take my son and never return him back.”
Jemman discovered that professional and qualified resources in the Arab world for treating children with Autism are scarce and very costly, and this discovery brought Jemman’s initiative and vision: a center that trains people and give them the proper tools and foundation to help children with autism. A vision will create an adequate infrastructure to handle and treat children with Autism in the Arab world.
“I’m not a physician, I’m not a therapist, but I have my own experience that helps me understand the needs of children with Autism and their families.” Commented Jemman. “It is a big struggle for families in our society; there is blame, guilt, shame and misconceptions. There is even resistance for acceptance and seeking out help in the right time. And time is of essence; parents shouldn’t have to go through what I went through and waste valuable time and resources searching for answers and help.”
“We are working with professional experts in the field from the U.S.A. and are in the process to be allied with ivy league universities that will teach our Masters Degree program. The center follows the Applied Behavioral Analysis (ABA) method; that has shown 80% improvement rate. We will also have a pilot nursery to train therapists and shadow teachers. What makes our program unique is that it is the first and one of its kind that uses the Arabic language; we also combined speech therapy and O.T.
(Occupational therapy). We will have all the resources under one roof, coming together to help the child and their parents.” Explained Jemman.
“There are no absolutes in Autism; each case is as individual as each child. The center believes in IEP, Individualized Educational Program and a certified trainer will analyze the child and place the appropriate program for that child, and re-assessment is made every six months and adjustments are made accordingly.”
The biggest obstacle now is funding, the center is non-profit and needs people to come together for this great cause. “We need to raise awareness, we need to realize the suffering of children and families, our
society needs this and now we need help to make this vision become a reality.”
Jemman fought back tears when asked about her own personal and very emotional journey, but one could see that all the pain and suffering she endured was well worth it, the smile on her face when she showed us a video of her son Hashem eating a sandwich all by himself for the very first time, said it all. Such a simple thing that the all of us take for granted was an amazing accomplishment for an autistic child. Whether the ability to go out in public, enjoy a family outing, or even holding a conversation are things that families with autistic children have to work hard to achieve.
Finally Jemman shared with us a very powerful message that we all should embrace, “count the blessing even within a tragedy. There is always hope.”
Facebook page: AutismMena
Every Tuesday there is a live Q&A session with the hashtag #autismmena on Twitter
©ARAB WOMAN MAG