Thursday, 10 October 2019

بروتوكول الدمج








بروتوكول الدمج



       تم تأسيس هذا البرنامج من قبل داليا سليمان رئيسة الجمعية المصرية للأوتيزم بالتعاون مع مدرسة الأفق الجديد "نيو هورايزن" في عام 2005 بعد الانتهاء من أطروحة الماجستيرفي التوحد عن "دمج الأطفال التوحديين في مصر"والتي حصلت عليها عام 2002 من كلية التربية في جامعة برمنغهام.
     يبدأ البرنامج بعد أن ينهي الأطفال المستويات الثلاثة من برنامج السلوك اللفظي (VB) والعمل علي المهارات ما قبل الأكاديمية في مركز متخصص.
    في سن الرابعة يبدأ أن يخصص لكل طفل معلم مرافق /معلم دعم بناء علي احتياجات الطفل (انظر الي القسم الخاص بمدرس الظل)، ويقوم هذا المعلم بالعمل علي أدوات KG1 في المركز ويعد الطفل للاستعداد للمقابلة الشخصية ، وينتقل الطفل الي فصل ما قبل المدرسة في المركز والذي يتعلم فيه مهارات جماعية مثل :الجلوس مع مجموعة و رفع اليد للإجابة عن سؤال والنقل من السبورة والوقوف في صف مع زملاءه....

    ثم يبدا الوالدين في بتجهيز "اوراق الدمج " التي تطلبها وزارة التربية والتعليم المصرية ،ثم يسجل الطفل في الادارة التعليمية ويقيد بشكل رسمي في النظام التعليمي.
      ثم يرسل أخصائي نفسي تربوي من المركز المتخصص نموذج إحالة إلى المدرسة ، مع ذكر تفاصيل عن الطفل (العمر والتشخيص ومستوى الصف الموصى به وملاحظات محددة عن الطفل)، ثم يتم ترتيب موعد المقابلة.

    في بعض الأحيان (على حسب كل حالة ، يزور الطفل المدرسة عدة مرات قبل المقابلة لإعداده للمقابلة وتقليل القلق، ويتم ذلك من خلال المركز من خلال ارسال معلم  دعممعه.

مقابلة المدرسة:
  يحضر الطفل الي مقابلة المدرسة"الانترفيو" مع والديه ومعلم الدعم ،في البداية يقوم معلم  الدعمأمام الشخص القائم بالتقييمبالعمل مع الطفل من خلال ادوات مألوفة له (التي يعمل بها في المركز) ،ليري الشخص القائم بالتقييم الطفل يعمل باطمئنان ثم يقوم بمشاركة معلم الدعم والعمل مع الطفل ،مع مراعاة أن يكون المعزز موجود مع الطفل ويعززبالطريقة المعتاد  العمل عليها معه،نحن نحاول نقل "نظام العمل" التي يستخدمه الطفل في المركز الي المدرسة لنسهل عليه عملية الانتقال،بعض الأطفال يستجيبون بشكل أفضل في حالة عدم وجود والديهم في الغرفة ،فنقوم أحيانا بالطلب منهم أن يصلوا متأخرا بعد تقييم الطفل.
تهيئة فريق العمل(المدرسين):
   يتم عقد ورشة عمل للمدرسين لتوضيح ما هو المتوقع من الطفل،يقوم معلم الدعم بتدوين نظام التعزيز الخاص بالطفل وخططه السلوكية وشرح مدي اهمية دورمعلم الدعم والمركز المتخصص للطفل،ونقوم بتشجيع المدرسين علي المشاركة بقدر الامكان مع أطفالنا بدون أن نشعرهم بالضغط ،نحن نحاول أن نوضح لهم أهمية التعليم البصري وأهمية مشاركة الطفل في الأنشطة داخل الفصل الدراسي وكيفية تنمية الثقة بالنفس لدي الطفل.
تهيئة زملاء الفصل:
   يتم اعداد زملاء الفصل في البداية من خلال الحملة السنوية للتوعية بالتوحد التي تعقد في المدرسة لتوضيح مفهوم التوحد ،ثم بعد ذلك يتم  تقديم معلومات أكثر عن الاطفال التوحديين في الفصول التي سيدمج فيها الطفل،كلما كان الاطفال أصغر كلما كانوأكثر تقبل ورغبة في دعم زملائهم ، من المعتاد أن يتم توجيه العديد من الاسئلة مثل"لماذا لا يتحدث مثلنا؟""لماذا تساعده ولا يقوم بفعل الشيء المطلوب بنفسه؟" ويجب أن نجاوب عليهم بوضوح لتقديم الدعم لأطفالنا،يحصل الأطفال الذين يختارون المشاركة في برنامج الأصدقاء (مرافقة الطفل إلى الكانتين أو في فترات الاستراحة) على شارة خاصة وشهادة تكريم.

السنوات الأولي في الدمج:
     يلتحق أربعة أطفال لديهم توحد في كل سنة دراسية ،اثنين منهم في نفس الفصل علي أن لا يتم تواجدهم معا في نفس الوقت (يصاحبهم معلم الدعم)،يتم تقسيم الطفلين علي فترين ،كل طفل منهم يذهب الي المدرسة ثلاثة ساعات ثم يرجع الي المركز مرة أخري لاستكمال العمل مع الطفل،يتمزيادة عدد الساعات سنويا، قد تختلف الزيادة من طفل لآخر،ويجب أن يحضر الأطفال وقت الاستراحة مرة واحدة على الأقل يوميًا وأكبر عدد ممكن من الأنشطة الاجتماعية (تربية رياضية، الدراما ، رسم) بما أن تركيزنا الرئيسي هو المهارات الاجتماعية، كما يحضر المواد الأكاديمية الأساسية فقط.
     معلم الدعم هو المسئول عن جمع المادة العلمية الاكاديمية التي يطلب انجازها مدرس الفصل ويتم العمل عليها في المركز في جلسات فردية 1:1 ،في هذه المرحلة الاوليه ليس متوقعا من الطفل أن يتعلم أي مهارات أكاديمية وسط المجموعة،ولكنه موجود في هذه المرحلة ليتعلم اتباع روتين الفصل (يطبق المهارات الصفية التي تعلمها في المركز في فصل ما قبل المدرسة)ويزيد من مهاراته الاجتماعية.
 في أول أسبوعين من المدرسة نرسل مشرف من المركز لمراقبة وتوجيه كل من الأطفال و معلميالدعم، ومساعدة معلمي الصف إذا لزم الأمر وحل أي مشاكل قد تنشأ، يبقى المشرف بشكل رئيسي في الممرات ويدور بين الفصول، يتم أيضًا إجراء أي تعديلات على جدول زمني (إزالة مواد مثل اللغات الإضافية إذا لزم الأمر).
اجراءات الانسحاب:
   الهدف من برنامجنا هو تمكين الطفل من حضور المدرسة بشكل كامل بدون الحاجة الي معلم دعم،من الضروري أن يتم سحب مدرس الدعم بشكل تدريجي لأن وجوده بشكل طويل سوف يجعل الطفل معتمدا عليه،وعندما يزيد ادراك الطفل وتزيد مهاراته الاجتماعية ،سوف يطلب عدم وجود مدرسم الدعم معه مثل باقي زملاءه.
     سحب مدرس الدعم يتم بشكل تدريجي وشخصي ،في البداية يجلس مدرس الدعم بجانب الطفل في الفصل الدراسي ،لو الطفل أصبح أكثر ثقة في المادة /الغرفة/المجموعة حينها يقوم مدرس الدعم بالجلوس اخر الفصل أو القيام بدور مدرس مساعد لمدرس الفصل ويوجه جميع الأطفال،وفي النهاية يبدا مدرس الدعم بمغادرة الفصل الدراسي بشكل متكرر وترك الطفل في الفصل ويبقي موجودا في الممر.
     يختلف نوع الدعم المقد الي الطفل في كل مرحلة ،قد يؤديالاقتراب من سن البلوغ إلى زيادة القلق والوساوس حول القيود الاجتماعية وأحيانا مشاكل السلوك،يستمر الطفل بالذهاب الي المركز (بعد المدرسة)لمعالجة مثل هذه القضايا ويمكن إرسال متخصصين إلى المدرسة للعمل في البيئة الطبيعية بالتنسيق مع المدرسة.


فيما يلي عرض لخطة  استراتيجية سحب:
------------------------------------------------------------------------------------------------------
الاسم: سيف أحمد(اسم وهمي)
تاريخ الميلاد:
الفصل الدراسي:

                     خطة سحب مدرس الدعم من الطفل سيف أحمد 2019/2020
من سبتمبر 2019إلي ديسمبر 2020
الفصل الدراسي: سوف يجلس مدرس الدعمفي آخر الفصل حيث يمكن للطفل رؤيته إذا كان يحتاج إليه (يمكنه الوصول إليه)، سيتم إخبار الطفل بأنه يكبر الآن ويمكنه الجلوس بمفرده في الفصل، سيف قادر على القيام بذلك في جميع المواد.
    أوقات الراحة: الشيء نفسه سينطبق على أوقات الراحة سوف يجلس مدرس الدعمفي الملعب في مكان يمكن أن يراه سيف. سوف يتم مراقبة الطفل من بعيد وتحديد إذا كان يحتاج إلى مساعدة أو لا في اللعب مع أقرانه ، فسوف يشارك المعلم المساعد إذا احتاجه سيف ومن  الممكن أن يجده بسهولة (يمكنه الوصول إلى المعلم المساعد)، يمكن تقديم نظام الأصدقاء حيث يتم اختيار صديق كل يوم للعمل / اللعب / رعاية سيف في الملعب.
من يناير 2020إلي مارس 2020
الفصل الدراسي: سوف يقوم المدرس المساعد بتوضيح أنه مساعد للمدرس في الفصل وموجود من أجل جميع الأطفال وليس هو بمفرده، وسوف يقوم بمغادرة الفصل الدراسي بشكل متكرر،سيفهم الطفل أنه سيقضي بعض الحصص بمفرده تماما(تدخل جزئي).
الشيء نفسه ينطبق على الاختبارات
أوقات الراحة: قبل كل استراحة ، سوف يذكّر معلم الدعمالطفل بما يجب عليه فعله في الاستراحة مع زملاءه (كيفية التعامل معهم ، والبدء في تفاعل اجتماعي والتراجع بشكل مقبول عن نشاط غير مرغوب فيه)، سوف يراقب معلم الدعمسيف من بعيد لكنه سيعرف مكانه (وصول جزئي)
التواصل مع نظام الأصدقاء.
مارس 2020 إلى يونيو 2020
الفصل الدراسي: سيبقى معلم الدعمخارج الفصل في الممر،الطفل لا يستطيع الوصول إليه،يمكن استيفاء أسئلته واحتياجاته من قبل معلم الفصل كما هو الحال مع زملاءه، يمكن لمدرس الفصل الاتصال بمدرس الدعم اذا احتاج مساعدته ، لكن الطفل لا يعلم أنه موجود بالقرب (ممنوع الدخول).
الشيء نفسه ينطبق على الاختبارات
أوقات الراحة: الطفل وحده في وقت الاستراحة، لا يمكن الوصول إلى معلم الدعمإلا في حالات الطوارئ.،هو موجود ولكن الطفل لا يعرف بذلك .
الابقاء علي التواصل مع نظام الأصدقاء 
        في هذه المرحلة ، سيكون هناك تقدم بشكل طبيعي في تكوين الصداقات ويشجع الطفل على الخروج مع اصدقاءه للعب خارج المدرسة، يتم التحدث بين مشرف المركز ومدرس الفصل كل نصف شهري لضمان أن الخطة تسير بسلاسةأو شرح اي تغيير فيها ،تتمتع معلمة الفصل بالوصول إلى المعلم المساعد عند الحاجة اليها .
     يتم الاحتفاظ بسجل يومي بواسطةمعلم الدعميحدد المدة التي كان فيها الطفل بمفرده ، ونوع المساعدة المطلوبة ، وأي سلوكيات أومشكلات قد تحدث.
---------------------------------------------------------------------------------------------------------

     هذا إطار عام لبرنامج الدمج الذي أسسته الجمعية المصرية للأوتيزم والذي تم تنفيذه مؤخرًا في لانش إيجيبت مع مدرسة نيو هورايزن، كل طفل تختلف عملية إدماجه وأهدافه واحتياجاته ويجب مراعاتها بشكل فردي.
الإصدار 1 - أكتوبر 2019
داليا سليمان ، ماجستيرفي التوحد 

Wednesday, 9 October 2019

Mainstreaming Protocol

Mainstreaming Protocol


This program was established by Dahlia Soliman President of The Egyptian Autistic society with New Horizon school in 2005 following completion of Soliman's Masters thesis on ‘Mainstreaming Children with Autism in Egypt’ for the qualification of Master Degree in Autism, School of Education, The University of Birmingham, 2002.

The program begins in the specialized center. After the children have completed the three levels of the Verbal Behavior Program they start working on pre-academic skills. 

At the age of four each child is allocated a shadow teacher / teacher aide (TA) based on his needs (see section for shadow teachers) .The TA begins to work on KG1 (reception) material at the center and prepares the child for the school interview. The child is placed in a ‘pre-mainstream ‘class at the center where skills such as sitting in a group, raising his hand to ask a question, copying from the board and lining up are taught.
The child’s parent’s begin the process of “mainstreaming papers” required by The Egyptian Ministry of Education. The child is then registered at the education administration office and is now officially in the system.

The Education Psychologist at the specialized center then sends a referral form to the school, stating the child’s details (age, diagnosis, recommended grade level and specific notes on the child). An interview is arranged.

Occasionally (on a case by case basis) the child visits the school grounds several times before the interview to prepare him and reduce anxiety. This is done through the center with his TA. 

School interview

The child attends the school interview with his parents and TA.  The TA starts showing the assessor the child working with her on his familiar material (same work he does at the center) so that the assessor can see the child working comfortably. Then the assessor starts working with both the TA and the child. The child’s rewards are with him and he is rewarded in the usual manner. We try and transfer the ‘work system’ the child is used to at the center to school to facilitate transition. Some children work better if their parents are not in the room, so we occasionally have them arrive later.

Preparation of staff

A staff workshop is held explaining to the teachers what to expect from the child, Teacher aides roll, reward systems, behavior plans and explaining to them that the majority of the work is on the teacher aide and the center. We encourage teachers to be as involved as they can be without making them feel pressured. The importance of visual teaching, encouraging the child to participate in classroom activities and how to promote self-esteem is also discussed.

Preparation of classmates

Class mates are prepared first through the annual autism awareness campaign that happens in school explaining to all students what is autism. Then in their respective classes more specific information is given about the ASD children that will be enrolled in class. The younger the children the more accepting and willing to help they are. Questions such as “why doesn’t he talk like us” and “why does he do that with his hand” are answered clearly and children are taught to accommodate, help and include the ASD child. Children who choose to participate in the buddy program (accompany the child to the canteen or in breaks) get a special badge and a certificate. 

Early years inclusion

Four ASD children are allocated per grade. Two children can be in class at any point in time (accompanied by their TAs). There are two shifts per day. Each child attends 3 hours per day then returns to the center to continue working. Hours are annually increased. The increase may vary from one child to another. Children should attend at least one break per day and as many social classes as possible (PE, Drama, Art) since our main focus is social skills. Academic classes mainly of core subjects are also attended.
The TA is in charge of collecting the academic material required by the class teacher and continues to work on it at the center 1:1. At this stage the child is not expected to learn anything academic in the group. He is there to learn classroom routine (practice the skills he learned in the pre mainstream class at the center) and enhance his social skills.

For the first two weeks of school we send a senior staff member from the center as a supervisor to monitor both the children and the TAs, support class teachers if needed and resolve any issues that may arise. The supervisor mainly remains in the corridors and rotates in between the classes. Any timetable adjustments are also done then (elimination of subjects such as extra languages if needed)

Withdrawal procedure

The goal of our program is to equip the child to attend school full time without the need of a TA. Removal of the TA is gradual and essential as prolonging the TAs presence will lead to dependency by the child. As the child’s cognition and social skills improve, he/she will also want to remove the TA so that he can be more like his peers.

Removal of the TA is gradual and personalized to each child. Initially the TA sits next to the child in class. If a child is confident in a certain subject/room/group the TA can start sitting at the end of the classroom or act as a teacher aide to the class teacher for all the children. The TA eventually begins to leave the class frequently and leaves the child alone but remains in the corridor. This may happen in certain subjects, or all subjects based on the child. Coordination with the school and frequent meetings with school staff is essential at this point. Both the school and center staff monitor the child and agree on the level of supervision needed. Occasionally the child may need more support and the shadow is returned for certain subjects or situations (such as break) . At every stage the type of support required by the child may differ. Approaching puberty may lead to increased anxiety and obsession over social limitations and occasionally behavior issues. The child continues going to the center (after school) to address such issues and specialized staff may be sent to school to work in the natural environment in coordination with the school.











The following is an example of a child’s withdrawal plan:

------------------------------------------------------------------------------------------------------
Name: Seif Ahmed (Factitious name)
DOB:
Grade:

Seif Ahmed Teacher aide withdrawal plan 2019/2020


September 2019- December 2019

Classroom : TA will sit at the back of class where the child can see her if he needs to and call her over (can access TA). Child will be told that he is now getting older and he can sit alone in class. Seif is able to have this done in all subjects.

Same applies for tests

Breaktimes: TA will be sitting in the playground somewhere Seif can see her. She will be monitoring his play from a distance. If he requires assistance or is not playing with peers she will get involved. If he needs her he can easily find her (can access TA). Buddy system can be introduced where each day a peer is chosen to work/play/ look after Seif in the playground.


January 2020-March 2020

Classroom : TA will explain to child that she is a teacher assistant there for all students not him alone. TA will frequently leave the classroom . child will understand that that he will spend some class time completely alone (partial access) 

Same applies for tests

Breaktimes: Before each break TA will remind child what he is required to do in break with his peers (how to approach them, initiate a social interaction and decline politely from an undesirable activity) . TA will monitor Seif from far but he will know where she is (partial access)

Continue with Buddy system.

March 2020-June 2020

Classroom : TA will remain outside class in corridor. The child does not have access to her. His questions and needs can be met by the class teacher as with his peers. In times of needs the class teacher can call in the TA however the child does not know she is close by. (No access)

Same applies for tests


Breaktimes: The child is alone in break. No access to TA except in emergency. TA is present but the child does not know
Continue with buddy system, at this point this will have naturally progressed to friendships and encourage playdates outside of school.


Bi-monthly updates between the center supervisor and class teacher to ensure the plan is running smoothly.
The class teacher has as much access to the TA as she requires.

A daily log book is kept by the TA outlining how long the child was alone, what kind of assistance was required, any behaviors that may have occurred and issues that arise.

---------------------------------------------------------------------------------------------------------





This is a general framework for the mainstreaming program initially established  by The Egyptian Autistic society and recently being implemented at Launch Egypt with New Horizon school. Each child’s inclusion process, goals and needs are different and must be catered for individually. 
Version 1 – October 2019 
Dahlia Soliman, MRSH, MEd










Thursday, 15 November 2018

My personal observations about autism in children

Since The Egyptian Autistic society was established in 1999 I have met and diagnosed thousands and thousands of children. I meet at least 4-5 new families a week coming from all over the world but mainly from Egypt and the Arab world. Without realizing I noticed several patterns and had many observations. Very often I would catch myself asking the parents questions related to the patterns I found. This article is nothing more than my personal observations. It is not supported by any research by me (although some of the patterns after looking at literature seem to have been noticed and researched by others).

-      The most “exciting” and baffling observation in my eyes, is the fact that so many of the children I see are a result of either IVF or at least their mothers had taken hormones to speed up pregnancy. I said “exciting” and baffling because of the implications this observation could have if it is indeed true that there may be a link between hormone imbalance (excessive male hormone) and autistic symptoms. The second observation is that even though it is usually one twin affected, you can always see ‘traces’ of autism or some of the deficits associated with autism (under developed social skill/ delayed communication).  We know for sure that Autism is more common in males than females (4:1), we also know that Autism has previously been associated with elevated prenatal levels of testosterone, which are linked to slower social and language development, autistic traits and attention to detail. Dr Michael Lomardo and Prof Simon Baron -Cohen looked at the amniotic fluid surrounding the babies in the womb. They found that the 128 boys that later developed autism had higher levels of steroid hormone than 217 in control group. This is one of the first studies that points at hormones rather than genetic bio-markers. Steroid Hormones affect how orders in the DNA are translated into important proteins thus possibly altering brain and increasing genetic risk factors related to autism. Recently A study at the university of Strasbourg in France, identified key genes that are regulated by testosterone contributing to the risk of autism. Exposure to androgens during male development alters genes related to autism and thus may explain why males are more susceptible to autism. The androgens increase the spread of cells and prevents them from dying which may lead to excessive brain growth which occurs in people with autism in the early years of life.

This could change the path researchers are taking to discover the cause of autism, it could also one day lead to pre-natal detection (by testing amniotic fluid) of autism. –That’s why its exciting !!



-      Other less exciting observations include that I have noticed that many of the children have parents who have a high IQ and are usually both doctors or a doctor and an engineer. Note that children with autism are usually very good at puzzles, play with blocks (rather than imaginary games) and are very strong visually. I wonder if this is related or affects the wiring of the brains.

-      I have been asked several times by guilt driven parents if their child ‘became autistic’ because they left him for hours in front of the T.V  I usually give the same response, “nothing you did made him autistic “. The thing which caught my attention though, was that the children were all watching the same TV channel.....  Even though I haven’t watched it myself I was told it is an Islamic channel which plays children’s songs which are repetitive in nature. Most probably either the tone, repetitive rhythm etc. attracts them and makes them sit for hours. Similarly, the “azzan” – calling to prayer attracts many children with ASD. Some parents can only feed their children while the azzan is on. Why is it that certain videos, pictures, shots , parts of movies attract them so much?  I can’t begin to count how many times I’ve been with an autistic child who played a particular part of a cartoon over and over again, or froze it or drew it exactly the same.

I cannot deny I am fascinated by the autistic brain and have always believed that they are somehow blessed to not have “the box”. We always say “think outside the box”….. what is the box actually? The box is a bunch of norms, rules , structure learnt from experience or implicitly taught to you by society. What if you were born without this manual? You could not implicitly understand all the social rules and the concept that you now take for granted (such as gravity for example)?   You will then have to discover everything yourself….by throwing things on the floor repeatedly until you understand that things will always go down (gravity). This will appear as odd behavior or perhaps even stereotypical behavior to observers. This exact same “deficit” of not having a box is the same blessing that make some adults with autism the best physicist. There is a certain freedom or blessing in starting off as a clean slate, untainted by society giving you the opportunity to discover everything yourself.


-      The “super powers” or special skills often associated with autism such as superior mathematical skills, memory, sense of direction, art,  and guessing dates correctly.  There used to be a myth that we only use 10 per cent of our brain. This is in fact not true. We use virtually all the parts of our brain but maybe savants somehow use it differently . I also can’t help but notice that many of the skills ASD children are good at are associated with typical “male” skills.


-     

Wednesday, 14 November 2018

Summary of Autism in Egypt from 1995-2018

In 1995 I returned to Egypt after finishing my degree in Australia. I worked in a special needs school for four years as School Psychologist while I finished my Post Graduate Diploma in Dyslexia. I discovered my passion for Autism so I travelled one summer and took the TEACCH training.
I came back and set up a classroom for children with Autism only using the TEACCH method.  By 1998 I realized that there needed to be an entity specifically for Autism (with no other disabilities) so I set up the Egyptian Autistic Society. I started by giving sessions to the children and advising parents on what to do at home. I trained staff and started doing day trips in the community and called it the 'Saturday Social Club'.
Very quickly it became apparent that the children needed more than individual sessions so I set up a classroom and started the 'Head Start' full day program. I hired a Speech and Language Therapist who also started working with the children daily. I was approached by Helwan University through one of my trainees (Samah Kassem) and was asked to host their fourth-year students studying special education for practical work. Most of the students who did training at EAS ended up being hired by us to work in the classrooms.
We started offering home visits to teach the parents what to do at home and to generalize behavior to the home environment. I was receiving a lot of referrals through word of mouth.

Seventy per cent of the children were mis-diagnosed (sadly by the biggest Pediatricians in Egypt). Very few of the children were verbal until we learned and adopted PECS (Picture Exchange Communication System) and started teaching them properly.
I realized that my children needed to play and learn social skills in another environment with neurotypical children. I approached my daughter’s preschool in 2002 and started sending some of our more advanced children with shadow teachers. One day the owner of the preschool called me and asked me to come immediately. I went to find two women supervising from the Ministry of Social Affairs (which is the supervising body of nurseries and associations like EAS) demanding that we “remove these children as they are contagious to the nursery children.”  After weeks and weeks of arguing we were able to put them back in the nursery.

Meanwhile the rest of the children were doing social mainstreaming in the local community, learning how to walk safely in the streets, order food at restaurant and pay for their snacks at supermarkets.
Many of the children were academically very advanced so I wanted to enroll them into mainstream schools. This must have been one of the biggest challenges I ever faced. We were rejected and kicked out of so many schools it was depressing. The parents heard the nastiest comments and we were given the worst excuses as to why we had to leave. One of my 6 year old students touched a peer’s lips with his finger (sensory) and we were kicked out for ‘sexual assault’. Once I was bluntly told by a school owner “each chair you see in this classroom gets me 24000Le a year, so If I give you two chairs (one for my student and one for his shadow) how many 24k am I going to lose by having him in here'.
I had another school owner ask me “well how weird does he look?” before thinking about accepting a child with Autism at her school.

Finally in 2007, I was introduced to a lovely peaceful school owner who agreed to go through this with me one step at a time. We enrolled the children for a few hours each day with one of my shadow teachers. Each class had 4 ASD children, in two shifts (2 at any point in time). The children attended all subjects but were getting confused with the two languages taught at school. The decision to choose which language to teach the children in was a hard one. All literature says use one language, preferably your mother tongue. That would mean Arabic. Arabic in itself was like teaching two languages since spoken Arabic is completely different to written Arabic.
The schools which we were able to mainstream in were usually private language (International) schools. The classes were smaller, the books were more attractive and the curriculum was less demanding. We decided to teach academics in English and try and get an exemption from Arabic for the time being.
Our mainstreaming project went very well. I always knew that more needed to be done to help more children across the nation get early diagnosis, early intervention and eventually access schools. This meant teaching in Arabic, teaching a bigger pool of service providers who can reach a wider population.
I met with Doctors from the General Secretariat of Mental Health a branch from the Ministry of Health. We agreed that they would come to EAS and receive intensive training in Autism, diagnosis, skills assessment and Verbal Behavior (VB) program implementation. We then set up a classroom in Abbaseya hospital to treat families free of charge. The plan was to use the trained staff to train other staff until a unit was opened in every Egyptian Governorate (to date 3 units have been opened). A curriculum was devised, translated and published. It used a combination of several evidence based methods and adapted to our culture. We now had the first Egyptian Curriculum for autism. 

Every time we tried collecting funds for training or therapy we were faced with the same issue which was very apparent in schools; people had no idea what Autism was. We began organizing and having big awareness campaigns in April where we marched, ran marathons, invited celebrities and media, appeared on tv shows released articles everything we could think of to increase awareness.
I became Autism Speaks ambassador in Egypt and joined the international 'Light It Up Blue' campaign where each country lights up a monument blue for autism on April 2nd as a sign of hope for families.
A professional advertising agency, which belongs to one of my close friends helped us pro bono with our campaign. One of the parents came on board to manage the campaigns and PR.
Over the years we lit up in blue the Pyramids, Sphinx, Luxor Temples, Cairo Tower, Citadel, Cairo Opera House, 57357 Cancer Hospital, Stock Exchange, Banks, Shops, Malls, Schools, Universities, The Suez Canal, Bin Ban Solar Panel Plants, Alexandria Library and many more. More and more people were asking about Autism and learning about it. However, in an ideal world children would grow up already knowing what is Autism and having friends on the spectrum. So, we decided to target the awareness bottom up….through schools. We approached several schools and gave the students lectures and activities related to Autism. Inserted 'Autism Awareness Day' in their school calendars where the students had to go in school wearing blue and make up a dance, poster, bake sale any activity that encouraged Autism awareness. We took our ASD children to several schools to spend the day. Finally, we trained senior students to be our ambassadors in schools and they went to all the younger age groups and showed their presentations.

We also approached University Psychology clubs and had them do the same at their Universities in addition to helping by volunteering and having booths in malls, running marathons etc. Shops were making blue cupcakes, cakes, cookies doughnuts etc. McDonald’s made a blue drink and sundae for Autism….. we made Autism fashionable… everybody wanted to be involved, local radio stations, newspapers and social media outlets joined the cause and published stories, held interviews and more. The same companies that were refusing to meet us or fund our campaigns were now calling to be involved. Some companies were even stealing our logos and putting them on their products… but it was all heading in the direction we wanted.
Every year we have a theme with a specific hashtag one year the hashtag went viral on social media it was trending so much that I got a call from Facebook's Head Office in the US informing me they were seeing a positive trend coming from Egypt and they wanted to help. So, they provided us increased exposure both nationally and internationally. NRP a National radio station in the US contacted me and broadcast a live interview over their stations about Autism awareness in Egypt. Following this it became easier to approach Governmental Bodies and advocate for services and rights as most of this was in the public eye covered by media. 
In 2014 we managed to get military exemption for young men with a diagnosis of Autism, laws were changed to facilitate inclusion (which is now a right not a privilege).

Part of EAS's role is to provide training for parents and professionals. A series of training was held for schools, centers and pediatricians. We set up a units for Autism in Ismaleya, Sharjah and Sudan as well as in several schools in Cairo. Students from the American University in Cairo, Helwan University and Institution of Social Work are now regularly training at EAS,  this is an addition to the schools that do their community work with us.
We host professionals from all over the world to teach us the latest most up to date methods and programs.
Teachers working in Ministry of Education special need schools and Ministry of Health units are invited to attend free of charge.  Our mission is not only to spread awareness but more importantly to spread knowledge. I have always believed that sharing knowledge empowers you and people should not be threatened by it.

In 2014 myself and 2 partners began developing a project called 'Kodarat' In May 2015 we were invited to sit with the President and share our project.
The project was a dream of ours. It was envisioned and designed to be a huge piece of land that contained all the services required by this population in one place, free of charge.
This was our gift for Egypt. The buildings were designed by Dr Ibrahim Karim and Raef Fahmy world renowned architects who donated their time and effort.
It was designed using bio-geometry to decrease seizures and promote mental and physical well being . Fatma and Ingy my partners had dreamed of such a place to leave their children in if they were ever no longer able to look after them as they aged.
The project promoted inclusion as it was attached to a sports club and a mall (students were to exercise at the club and work at the mall). It included several levels of supervised living starting from full supervision to complete independent living. It included a mainstream school, special units, vocational workshops and outlets to sell products. A training academy for shadow teachers and staff was also attached to ensure an on-going supply of trained staff.
It was designed to act as a hub of knowledge and quality control, improving the already existing centers and adding to their knowledge. The President was very impressed by the project and sent us to his consultants to work with the Military Architectural Organization to finalize the drawings. He allocated 6 pieces of land all over Egypt to build 6 centers.  We worked for months with the Military Architectural Organization then all of a sudden we received word the project had been stopped.
We soon found out that a certain person in a position of power ignited by jealous competitors pushed to shut it down stating that it does not promote real inclusion and its was like “throwing them in the outskirts  and hiding them“. Until this day an alternative has never been proposed or created. Residential homes exist all over the world to help children whose parents have passed away or those with severe complex needs. Thousands of children were denied the right to free treatment as well as a safe home and therapy due to political issues and jealousy. Unfortunately I learned at an early age that once politics becomes involved many people start opposing you just for their own personal benefit rather than being true to the cause. 

I decided to refocus my energy and in some ways people may think this appears as the smaller picture, but in fact this is the whole picture, the children, I put all of my energy solely into the children, to help there as much as I could. At this time this included working on school mainstreaming policies, they still needed a lot of fine tuning. Schools were still not accepting children with a diagnosis and were using IQ scores as excuses. The law stated that children with autism had to have an IQ score 65 or higher to be mainstreamed. The IQ tests administered were verbal and hence yielded very poor scores. Schools did not have a specific plan to follow or support once they accepted the children. Some schools were charging the parents extra or placing their children in resource rooms all day. More work is still required within the schools.

The children got older, some were able to sit for 12th grade examinations (SAT Level) and some were not. We approached the American University in Cairo and met with their learning support department. This year we have our first student enrolled in university. We are working closely with the learning support department to provide him with the accommodations and assistance he is entitled to and that he needs to succeed.

Last April a job exposure fair was organized to expose our young adults to the various jobs available within their local communities. More than 20 companies joined and were keen to hire people with autism. We are currently in the process of assigning people to jobs and training. 








Monday, 8 February 2016

Venn Diagram

I often see these cases where the children exhibit some Asperger symptoms and some ADD symptoms yet do not meet the criteria for either! These children are the hardest to diagnose and are often misdiagnosed or not diagnosed at all. They are usually floating around in mainstream schools usually struggling socially. Their ability to understand social norms is very poor. It is as if they just landed with a spaceship from another planet but were not given the manual for our society. Parents are often in disbelief at how simple concepts such as not grabbing other peoples food, not standing  so close to people when you talk to them can be so difficult to somehow who is academically quite successful. sadly these children suffer a lot; they suffer for many reasons. Primarily, the education system as a whole forgot them . They are too smart academically to be seen as an issue and too mild to be seen as a problem. however their inability to understand concepts such as making and keeping friends makes their lives miserable. such children have insight that they are different. they will even verbally express that they are very good at spelling at maths but very poor at making friends. they try to make a "formula" like the ones they learned maths with but it usually fails them. I find that role play, drama and structured play dates work wonders with theses children. they often need to see how the other person is seeing them ... "put yourself in his shoes" is one of the hardest thing you can teach a person on the spectrum . however it does work. creating many real life situations and acting them out and swapping roles helps a lot. Puberty is often the time we see most of the melt downs as hormones also get in the way. When you are having a bad day you know you should control your negative urges and even perhaps stay away from people. however such children (the Venn children) are quite impulsive (due to ADD) and do not have the social awareness of what is  an appropriate way to behave in such situations. on the bright side not knowing a lot of the rules makes them keen to experiment and often geniuses in physics; for e.g. "the law of gravity" is not a given. the Venn child will not automatically know it but will figure it out by dropping things to the floor... over and over again. this appears to us to be stereotypical behavior while its actually a learning process.  I learned so much from these children. not just to think outside the box, but that their is actually no box!!! everything is possible and everything is how you perceive it.

Tuesday, 15 September 2015

Politics 101

Wow what a year!

Since March Fatima Mamish, Ingy Mashhour (two parents of children with Autism) and myself have been working on our dream project; establishing multiple comprehensive centers all around Egypt for special needs. On the 23rd of May we finally received a phone calling telling us that President Abdel Fattah El Sisi will meet with us and listen to our project. I was on the beach in Sokhna (outside Cairo when I heard) . I went numb and started to panic quietly. I was surrounded by atleast 15 of my friends and their kids but i saw no one. All i wanted to do was pack my stuff and hurry back to Cairo to revise the project. i also had to call the parents of some of my ASD students as i was informed I needed to take the children with me.  By the time I made it to the car the security check had begun, every two minutes we would receive a call asking for pictures of my ID, my drivers ID my license plate and the IDs of every single staff attending with me. I couldn't tell them that I was still in my bathing suit and had nothing of what they requested so I seriously hurried home.

The meeting was 10 am the following morning so Ibasically only had time to organize which children I would take and which teachers would accompany them . We finally arrived to the itehadeya castle where severe security checks were done at the entrance. Everything was taken from us including phones and USBs. We had snacks and little games to keep the children busy which thankfully we were able to keep.

The castle was shiny and spotless, we were taken to a Salon and asked to wait there. A few minutes later this elegant Salon was covered in popcorn and play dough and the children were running up and down the big room. Every ten minutes somebody either dressed in a black suit and headphones or in military uniform would come and check on us.  It was nice to see how these big scary uniformed men turned into jello as soon as they saw the kids playing. All they kept saying to us was do they need anything, please let them be comfortable. the attitude was surprising and quite frankly lovely.

The head of protocol kept calling me outside the room to discuss what would happen when the President arrived. I asked what the children were needed for and was informed it was for a photo shoot. I asked if after the photoshoot we could have 30 minutes to put them back in the cars and send them back home with their teachers he agreed.
I was ordered to take a step forward , shake the hand of the President then introduce him to every person present then go stand back in my place and pose for the media.
Until that moment i didn't understand what exactly would happen; will we actually get the chance to explain our project or was it just a photo shoot and how much time would we have with him.

The meeting was truly wonderful better than anything I ever expected. he spent three hours with us listening carefully, asking questions and telling us what his research team had already found out. He was very well prepared and made us feel that this was  genuinely a priority. He told us the budget he had already allocated for this project and discussed with us land options for the six centers.

After the meeting we sat with the presidents spokes person who informed us what to say to the press. We then had a small press conference and went home. Within two hours every single network and program were calling us for information about the meeting.


So many things happened in these last three and a half months. I asked my mothers cousin Dr Ibrahim Karim (architect and founder of Biogeometry) to work on the design and if we could do it using biogeometry. He was the perfect person to choose as his passion and dedication is incomparable. He brought on Eng Raef Fahmy who turned out to be another god sent. Raef has an autistic son so was also doing this for the right reasons. The team worked day and night. The design is now nearly finished and a sample classroom has been built and is ready for testing.  Ingy and I started taking classes in strategy (chinese would have been easier) so that we could come up with a complete strategic plan. Our file was handed to a group of wonderful people from the council of societal development they helped us and taught us every step of the way. People started fighting over our file and the project froze for a while until it was settled who should supervise us. The fights were very low in nature and accusations were brutal.

In those three months I learned a lot . Once you reach this level of working with ministries, the army and councils people change. Intentions are not so clear (or honorable) and everybody has a hidden personal agenda. People will do anything to be noticed, take credit for things they haven't done and actively try and destroy projects if they are not involved in them. As much as people like Eng Raef and Dr Ibrahim give me hope in this world that some people are truly decent and selfless as much asI have become very disappointed in the human race over all. I have come to realize that this journey is turning into politics not special needs and that you have to keep up to survive and doubt everyone. My dream was a lot simpler and seemed a lot purer in theory.  Luckily we have a good team made of solid people with the right intentions. Everyone in the team has donated their time and skills free of charge and gladly. The passion and excitement about the project is the glue that keeps us together. we are aware of all the attempts that are made to hinder us but we continue to focus on our work and believe in our dream.