«التوحد» يدخل منازلنا بلا استئذان Autism Came Into Our Home

«التوحد» يدخل منازلنا بلا استئذان
قبل عشر سنوات, بدأت رحلتي مع المعاناة والوجع الروحي ،بعدما اكتشفت اعراضا سلوكية مختلفة تعاني منها طفلتي خزامة.
ما زاد قلقي وحيرتي هو تأخر نمو الطفلة الحركي والاجتماعي ونطقها للكلمات ، كما تاخرت في البدء بخطواتها الأولى ، وبدأت تميل الى العزلة وتجلس في زوايا المنزل وتمارس حركات نمطية قليلة مكررة . في ذلك الوقت لم اكن ادرك حقيقة معاناة الطفلة المرضية ، خصوصا أن الطبيب كان يخبرني أن الطفل قد يتاخر عن الحركة والنطق، ولكني القلق انتابني تجاه حركة طفلتي وتكرار نفس الكلمة .
عندما اصبحت خزامة في الثالثة من عمرها، راجعت العديد من الأطباء ، ولجأت الى أكثر من مركز خاص لحالات التوحد ، فارهقت جسديا ونفسيا وماليا ، بعدما اكتشف احد الاطباء ، احتمال اصابة ابنتي بالتوحد ، فقررت حينها مراجعة مستشفى البشير الحكومي لمتابعة العلاج . وكنا ننتظر لساعات حتى يرى الطبيب خزامة .
تفيد دائرة الاحصاءات العامة في عمان عدم توفر الارقام الدقيقة حول اعداد المصابين بالتوحد بالذات، ولكن يقدر عددهم بحوالي 8 الالف مصاب . واذا كانت المراكز الحكومية مكتظة بالمرضى والمراجعين ، فهناك المراكز خاصة لعلاج حالات التوحد ولكن المشكلة ان علاج الحالة الواحدة يكلّف الأهل حوالي 450- 700 دينار في الشهر. لذلك اصبحت معاناة اهل المصاب مزدوجة نفسية ومالية معا.
تغيرت حياتنا الاجتماعية والاسرية ، بسبب حالة خزامة. كثير من الأصدقاء ابتعدوا خوفا على أطفالهم ، وكرست حياتي لتلبية احتياجاتها، ولم يعد لدي الوقت لاستقبال الضيوف او الاهل في بيتنا».
لم تكن حيرتي وقلقي بمختلفة عما مرت به معظم الامهات في مثل حالتي . ففي تجربة خزامى العلاجية تم تشخيص إصابتها بالتوحد وهي في الثالثة من عمرها .
حلمي اليوم ان تدخل خزامة المدرسة وتكمل تعليمها وتصبح مهندسة زراعية.
ايناس شافي

Autism Came Into Our Home Uninvited”
“What hurts me is that the community around me is unaware of the extent of our suffering, I was told that my daughter was under the evil eye of envy, and so she’d become ‘tangled’.”

Ten years ago, I began a journey of spiritual suffering and pain, after I found out about the different behavioral symptoms that my daughter Khizama suffered from.

What increased my anxiety was the delayed motor and social development in my child and her difficulty in pronouncing words. She was late to take her first steps, and began tending to sit alone in corners of the house and making a couple of quick movements repeatedly. At that time I did not understand the reason, or the fact that my child was really different, especially since the doctor was telling me that it’s normal for a child to develop movement and speech a little later.

Still I was worried about the strange movements of my child and repeating the same word.

When she was three, I consulted many doctors and resorted to special centers for autism. I was physically and psychologically and financially exhausted.

After one of the doctors discovered that my daughter might be autistic, we decided to go to Al-Bashir government hospital to follow up treatment. We were waiting for hours to see the doctor.

According to the Department of Statistics in Amman, there are no exact figures but the number of people with autism is estimated at about 8 000. The government centers are overcrowded with patients and carers, but are centers especially for the treatment of autism, however the problem is that the treatment of one case costs the parents are about 450-700 dinars a month. So the suffering of the family of the patient is doubled: it’s both a financial and psychological burden.
Our social and family life has changed, due Khizama’s condition. A lot of friends stay clear because they’re worried about their children being around her. I have to spend a lot of time attending to her needs and I have little time to receive guests or parents in our home. “

My anxiety and experience is similar to what most other mothers in my situation went through. My daughter was diagnosed when she was three.
“What hurts me is that the community around me is unaware of the extent of our suffering, I was told that my daughter was under the evil eye of envy, and so she’d become “tangled”.

The sheikhs and religion don’t help. Many people have moved away from us.
My dream today is for her to go to school, complete her education and become an agricultural engineer.

Enas Shafi

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