A growing problem

Kayleigh has two years left at the Marcia D. Smith School in Gaithersburg, Md., and is eligible for 25 hours of paid help a week through the Autism Waiver, a Maryland Medicaid program.

But when she turns 21, these services will no longer be available. “That’s the scary time for everyone,” Marlene said. “There are big waiting lists for services.” In 1993, the year Kayleigh was diagnosed, there were 260 students in the Maryland Public School System identified as autistic.

Now the system serves approximately 5,764 students with autism, ages 3-21. The Kuwait Center for Autism, which began in 1994 with just a handful of students, now serves 120. According to the World Health Organization, autism affects about 67 million people worldwide.

In the U.S., 1 percent of children ages 3-17 have been diagnosed with an autism spectrum disorder, and autism has been identified as the fastest-growing developmental disability. There are no official statistics in Kuwait, but an estimated 2,500 are afflicted. Autism programs have grown, along with awareness. But as the children of these pioneering families grow up and leave school, organizations and advocacy groups are looking toward the next challenge: “What do you do with the adults?” The McConnells want Kayleigh to be independent. They want her to be able to work and be happy and productive. But the future is a constant worry.

“I don’t know where she’s going to fit in,” Marlene said. “I don’t know what’s out there.” Abdullah's parents also describe the future as their biggest fear. They hope Abdullah will someday have a job; that employers will be able to make use of his many skills. All they want for him, they say, is what families everywhere want for their children. They want him to be happy.

مارلين تستمد القوة من تجربة ابنتها

قررت مارلين مساعدة الأسر التي لديها طفل توحدي، وجدت أنه شيء فعال ورائع أن تقدم لها الدعم، وأن تستمد القوة من تجربتها مع ابنتها في مساعدة الآخرين, وأيضاً من ابنها الذي ولد طبيعياً، وتصف مارلين قرار إنجابها طفل آخر أنه أصعب وأخطر قرار ولم يكن أمراً سهلاً، لكن بعد إنجابها لابنها هنتر, 15 عاماً, أصبحت ممتنة جداً لله ولأسرتها ولأصدقائها من حولها على ترابطهم.


وتتابع: كثير من الأزواج ينفصلون تحت وطأة ضغط وجود طفل توحدي في الأسرة، كثير من أصدقائي وقع الطلاق بينهم، بعض الآباء لم يتقبلوا الأمر، وبعض الأشقاء كانوا في غاية الاهتمام والمشاركة!



مارلين تتقابل مع كثير من الأمهات في مجموعات الدعم من أجل التوحد، وترى أن الأمهات حريصات على دمج الآباء في حياة أطفالهم.


تقول مارلين "أطفال التوحد لا يتواصلون عاطفياً لذلك فهم يحتاجون إلى الحب غير المشروط ، أنت تعطيهم الحب ولكن لا تنتظر المقابل بالمثل منهم!


تقول مارلين "كان عليّ أن أكون متواجدة، هذه كانت الطريقة الوحيدة لحفظ اتزان أسرتنا" ورغم الأعراض الشائعة والمعروفة عن التوحد، إلا أن الأمر يختلف من طفل متوحد لآخر، كيلي يمكنها القراءة وتتبع التعليمات وإجادة الطبخ، كما تنتابها أيضاً نوبات غضب غير متوقعة! وتعاني من الوسواس القهري ومشاكل في النوم، مما استدعى إعطاءها أدوية مساعدة كانت من أعراضها الجانبية زيادة الوزن "وزنها يقارب200 باوند"!


الأسرة استخدمت معها أسلوباً لتخفيف التوتر الذي ينتابها مع نوبات الغضب، التكنيك يعتمد على أن تستلقي على بطنها وتقوم بتمارين التنفس لتهدئة روعها.


لدى أسرة ماكونيل سيارتان، تستعملهما في كل مكان تتوجه إليه بصحبة كيلي، وتبرر لنا مارلين ذلك قائلة "عندما تنتاب كيلي نوبة غضب فهي تبدأ تئن، تصرخ، تعض أصابعها، وتضرب على وجهها، وتكون ميالة لتحطيم الأشياء، إنها تشكل صدمة لمن يراها، لذلك ينصرف بها أحدنا بعيداً قبل أن يلحظ الآخرون".


هؤلاء الآخرون يشكلون مشكلة في حد ذاتها -كما تصف مارلين- لأنهم سريعاً ما يتساءلون ما خطبها ابنتك؟ وأحياناً كثيرة تسمع تعليقات سيئة مثل لا يجب عليك أن تأخذيها للخارج معك؟! وتقول مارلين "كنت في الماضي أحاول تعليم الناس حساسية حالة ابنتي واطلاعهم على ماهية التوحد، إنه أمر حساس عندما يصطدم بعنف طفلك المتوحد بالأشياء في المتجر ليسقطها أرضا"!


عوضاً عن ذلك هي تحاول أن تشرح للناس ماهية التوحد مقدماً، فلن تستطيع أن تفعل ذلك بينما هم يصرخون! وتحمل خطاباً من الطبيب تعرضه للآخرين أثناء شرحها عن حالة كيلي، بل لقد ذهبت مارلين لأبعد من ذلك حيث طبعت الخطاب على تي شيرت ترتديه!

المزيد

Challenge and sacrifice

Amaal stayed home to care for Abdullah and Marlene gave up her career to be on call for Kayleigh. Kayleigh’s father, a veterinarian, sold his business to take a less stressful job with regular hours and Khalid has devoted countless hours to teaching his son.



“I had to be available,” Marlene said. “It was the only way to keep our sanity.” Although there are some common symptoms, autism presents differently in every person. Kayleigh can read and follow written directions and she likes to cook. She also has unpredictable tantrums, sleep issues, some obsessive compulsive disorder issues and self injury.



She takes medication to reduce anxiety and to help her sleep, but a side effect is weight gain, and she is near 200 pounds. The family also use stress relief techniques – such as having her lie on her stomach and do breathing exercises – to calm her. The McConnells take two cars everywhere they go, in case Kayleigh acts out.



At the onset of a tantrum “she whines, screams, bites her fingers and starts hitting her face,” Marlene said. “She can be very destructive if she’s running. It’s very shocking to see.



“If we’re out in public, the community is like, ‘What’s wrong with her? You shouldn’t have her out here.’ We get a lot of bad comments. I’m past trying to teach people about it – it’s difficult to learn about being sensitive when you’ve got this kid in the store knocking things down.” Instead, she tries to inform people about Kayleigh’s autism in advance, “because you can’t explain it when they’re screaming.” She carries a letter from the doctor everywhere she goes: “I’ve read it so many times, I might as well have it on my T-shirt.”

Kayleigh is a strong swimmer and has frightened her family on trips to the beach by swimming straight out into the ocean. Abdullah also is athletic and used to scare his parents by running away – out of the house, into the street. His father began to take him on family trips to the desert so he could run. Once he ran so far he disappeared from sight, over the dusty horizon. But the desert trips seemed to temper his desire to escape.

Abdullah watches cartoons obsessively and learned to speak Arabic that way, so his family addresses him in classical Arabic – the language of cartoons. They also frame questions in many different ways, to help him understand. An avid fan of the Japanese cartoon series Detective Conan, Abdullah also taught himself Japanese by watching 576 episodes, and has met the Japanese ambassador to Kuwait on several occasions.

The ambassador is impressed with his command of the language. During a typical incident at Kuwait’s Video Games Center, Amaal said, Abdullah stood in the middle of the center and shouted: “Dear seller! Do you have new episodes of Conan?” “Most people were startled to hear his loud voice speaking the language of Arabic cartoons, but I didn't pay any attention to that,” she said, explaining that she is no longer ashamed of her son.

“I don’t want to hide Kayleigh away,” Marlene said. “She’s not something to be embarrassed about.” Love and shame At first, Amaal admits, “I asked myself, what did I do in my life to get a child like him? But when the diagnosis came back to us I knew that the time of work and to do something had come, and I threw behind my back the feelings of guilt and shame.

Then I began to accept my responsibility toward Abdullah, which required a lot of time and work.” This often came at the expense of her other sons, she said. She told them that while she loved them all equally, her biggest concern was for Abdullah. When the boys were young, she spent one hour a day with all three of them, helping them interact through play and pictures. She taught her children that “we are a different family” and that they should be proud of their family’s success.

Today, she said, some people envy her family’s closeness, even regarding Abdullah as the cause of this. Amaal also finds strength in her faith. A Sunni Muslim, she has taught her son the Holy Koran with the help of Sheikh Kamal from the Autism Center.

Marlene said she finds purpose in helping other families with autistic children cope.

“Where I’ve found something positive, helpful, I want to share it,” she said.

“I try and extend myself. That’s where I get my strength – that and my son, who is not disabled.” Deciding to have another child was “the biggest risk I’ve ever taken,” she said, but Hunter, 15, was worth it. “I’m incredibly grateful that he is who he is.

I just find a lot of things to be grateful for – my husband, my friends, my family – because it could be so bad.” Many a marriage has come unglued under the stress of coping with an autistic child.

“A lot of my friends have got divorced,” she said. “The dads just can’t take it. And some siblings are very caring and involved, but some just can’t get away fast enough.” Marlene sees mostly mothers in the autism support groups, and said most families that are functioning well have found a way to integrate the father into their child’s life.

“I feel that an autistic child, because of their emotional disconnect – they’re the ultimate definition of unconditional love,” she said. “It’s a very thankless disability because you don’t get that love back from them.”

أبو عبدالله :لا ملل ..لا ملل نصيحتي لكل الآباء

وفي الكويت يقول أبو عبدالله "إذا كان الطفل العادي يتعلم من المرة الأولى والثانية وصولاً للمرة العاشرة، فطفل التوحد يتعلم من المرة المائة والمائتين" وينصح الآباء قائلاً "لا ملل ..لا ملل وحب مستمر" هذا كان مفتاح الأب لعالم ابنه التوحدي ومعه تغيرت كثير من الأمور التي كان يرى الكثيرون من الناس أنها مستحيل أن تتغير في ابنه عبدالله. غرس والد عبدالله في ابنه التعاليم الدينية وحرص على تحفيظه القرآن وعاونه في ذلك كثيراً الشيخ كمال في مركز الكويت للتوحد. تصف أم عبدالله ابنها قائلة "أجمل ما في عبدالله وأبناء التوحد عموماً الصدق والالتزام بالعهد وكرههم للكذب". والد عبدالله يرى ان بعض الاعراض الشائعه عن التوحد تغيرت في ابنه فيقول "لقد تعلم عبدالله أن يأتي لي كل ليلة في سريري ليعانقني، ويفعل الأمر نفسه مرة على الأقل يومياً مع أمه، لم يرغب في ذلك في البداية، لكننا عودناه، وأدرك أن هذا الأمر يسعدنا، فيفعله من أجلنا، وكثير من النظريات الشائعة عن التوحد تؤكد أن المتوحدين لا يتواصلون عاطفياً إلا بالتدريب والتعليم والحب المستمر, إنها تبدلت في ابني عبدالله".

المزيد

“I felt that my son was in jail,”

Khalid Haroun Al-Saleh, Abdullah’s father, works in Kuwait’s telecom industry. His family is originally Lebanese: His grandfather moved to Kuwait in 1956 in search of a better life after oil was discovered in the region.
Today the family consider themselves Kuwaiti, but live in a neighborhood designated for foreign nationals. Khalid and Amaal, a stay-at-home mother, have three sons. Abdullah is the eldest. Muhammad, 20, teaches nursing and Abdel-Rahman, 18, is an engineering student.
When Abdullah was 2, he stopped speaking – the first indication that something was wrong.
The journey to a diagnosis was long and exhausting. Abdullah’s condition was not recognized in Kuwait. A Syrian doctor told Khalid his son had an autism spectrum disorder, but his diagnosis was formally rejected by the Kuwaiti Ministry of Health. The family took Abdullah to a neurosurgeon, and after extensive testing and analysis, the diagnosis of autism was delivered once again.

But that wasn’t the family’s only problem. The Gulf War began in 1990, and they fled Kuwait for the relative safety of Lebanon.

In 1994, after their return to Kuwait, the Health Ministry finally acknowledged that Abdullah had autism: a disorder of neural development, characterized by impaired social interaction and communication and by restricted and repetitive behavior.

But what to do? All his parents could find were a couple of explanatory brochures.

“I felt that my son was in jail,” Khalid said. “And that I was running around everywhere, looking for the key.”

Misunderstanding in Montgomery County




Kayleigh also was 2 when her mother, Marlene, first suspected something was wrong.
Her daughter crawled, walked and met all her developmental milestones. She put puzzles together quickly and repeated everything she heard, a symptom of autism known as echolalia.
“If I look back, she wasn’t talking to me,” Marlene said. “She was just talking to the air.”
Marlene, who trained as an elementary school teacher and has a degree in elementary education and psychology, suspected her daughter might be autistic. But no one in her family believed her.
After Kayleigh’s diagnosis, she contacted the Autism Society of America, which was at the time the only organization of its kind in the United States. The society sent some pamphlets – mostly about diagnosis.
“What I was hoping for was some information on treatment,” she said. “I just wanted information on where to go. There was nowhere to go. You just have to trust your own judgment, and that’s very scary.”
Under federal law, Kayleigh was eligible for help under the Individuals With Disabilities Educational Act (IDEA). The family enrolled her in a preschool program which offered special education and some limited speech therapy, but it didn’t seem to have much effect.
Marlene read everything she could find about autism, and came across a book about a successful new program developed by Dr. O. Ivar Lovaas of the University of Los Angeles.
But the program wasn’t offered locally, and in any case, the school system wouldn’t pay for it. So the McConnells set up their own program, paying for it out of their own pockets.
They turned the basement of their home into a classroom, and, with guidance from Dr. Lovaas, trained college students to work with Kayleigh for two three-hour shifts a day, weekends included. (Behavioral programs like this are now the methodology of choice.)
“We went through 26 students in four years,” Marlene said. “We trained and worked with them.”
Struggling to learn
“Right away, you find out there’s no cure,” Marlene said. “Right away, you find out the confusion in the medical community. Everything’s anecdotal – the things people are trying – and that hasn’t changed.”
With Kayleigh “everything had to be fed to her like you put data into a computer,” Marlene said. “She did not learn from her environment.”
If a normal child learns something the 10th time it is taught to him, a child with autism learns the 100th or 200th time, Abdullah’s father said, offering this advice: “Don’t get discouraged.”
In 1994, Dr. Samira Al-Saad, the Kuwaiti mother of an autistic child, founded the Kuwait Center for Autism, having previously established a center in Jeddah.
Abdullah was one of the first children to enroll in the center’s programs. He also attended regular school until seventh grade. The school was supportive of him, and of his family’s goal to help him integrate, but the other children didn't accept Abdullah and he was harassed and bullied.
For a time, Kayleigh attended an inclusive kindergarten program in her local public school, “but the regular school wasn’t ready,” Marlene said. “Teachers weren’t equipped.”
Kayleigh transferred to the Ivymount School in Rockville, Md., a special needs school with an autism program. The school was a long bus ride away, so in 2000, the family moved closer.
“Truthfully, everything revolves around autism,” Marlene said. “It affects everything she does, so it affects everything we do. You can’t really have a normal life if you have a kid with autism

في الكويت وواشنطن ..معركة واحدة تخوضها أسرتان بتحدي

كتبت:عائشة الجيار- الكويت، لوسي تشمبلي- واشنطن دي سي


بين الكويت وواشنطن .دي. سي، كثير من العلاقات السياسية والاقتصادية، الكويت من أغنى دول العالم، وكذلك واشنطن من أغنى الولايات في الولايات المتحدة الأميركية - طبقاً لأرقام البنك الدولي ومجلة فوربس- لذلك لا عجب أنهما من أكثر الأماكن على الأرض جذباً للأفراد الذين يبحثون عن مستوى معيشة أفضل .

وبينما العالم يخوض حروباً معلنة ومخفية، ساخنة وباردة، من أجل التحكم في سبل الحياة الأفضل والتحكم في الثروات والهيمنة العسكرية وأيضاً دفاعاً عن الحريات والحقوق, في هذا العالم الذي يخوض فيه البشر على اختلاف ألوانهم وألسنتهم معاركهم الخاصة مع صباح كل يوم جديد للاحتفاظ بوظائفهم، أو زيادة دخولهم، أو الوصول لأهدافهم الشخصية، هناك أشخاص آخرون يخوضون معاركهم الخاصة مع عالم مجهول اسمه "التوحد"! معركة لا تكتسب بالمال بل بالحب والحب المتواصل!

في منطقة حولي بالكويت تقطن أسرة الصالح، وفي منطقة مونتجمري بواشنطن دي سي تقطن أسرة ماكونيل وكلتا الأسرتين لديهما ابن مصاب بالتوحد،عبدالله 22 عاماً وكيلي 19 عاماً.

معركة مختلفة خاضتها كلتا الأسرتين في الكويت وواشنطن، ومنذ ما يقرب من 18 عاماً مضت على تشخيص حالة عبدالله وكيلي، لم يكن تشخيص "التوحد" بالأمر السهل، بدأت الأسرتان بتثقيف نفسيهما حول "التوحد"، واعتمدتا على جهودهما في العبور من بوابات كثيرة أثناء نمو ابنيهما.

أقرأ المزيد

Living with autism in Washington and Kuwait

By Lucy Chumbley and Aisha Algaiar
Kuwait City and Washington, D.C., are two of the wealthiest places on earth.
Kuwait’s per capita GDP is the fifth highest in the world, and the country is classified as a high income economy by the World Bank. The United States ranks No. 10, with 11 counties around Washington listed this year as the richest in America by Forbes.com.
Both places are magnets for families seeking financial opportunity and a better standard of living. But two families have found money cannot buy the one thing parents hold most dear.
Their children’s health.
The McConnell family in Montgomery County, Md., and the Al-Saleh family in Kuwait City each have children with autism: Kayleigh, 19, and Abdullah, 22.
Both families have struggled to find a diagnosis, educate themselves, serve as advocates for their children and raise social awareness about autism. Now, with their children on the cusp of adulthood, both families worry: What’s next?