We generally tend to be quite unaccommodating of people with special needs because our society preprograms us to snub everything that’s even remotely different from the ordinary. Special Children’s Educational Institute (SCEI) is one such school that not only helps parents of challenged kids deal with the harsh reality of their child’s disability and other common concerns like promoting acceptance in the extended family and the community in general, but also prepares the children for an uncertain future by constantly fine-tuning their routines and expectations to make their life as productive and easy as possible. Saad Zuberi talks to Saima Haq, the woman who, despite having been blessed with four bright children of her own and all discernible comforts of life, chooses to spend her days surrounded by special kids who, according to her, “have now become a part of (her) family!”
How and when did this fondness for special children and their needs develop for you?
I grew up in the US and then moved to Saudi Arabia at the age of 12 for four years. During that time I made frequent visits to Pakistan and was exposed to the severity of disabilities here as well as the lack of facilitates and recourses available. I was already interested in working with special needs at that time so this exposure made me even more committed to the field. I studied Educational Psychology in California and later went on to specialize in Special Education. In the US most public schools are required by the school district to have programs for Special Education which is funded by the federal and state government. I guess my early exposure to these kids made an impression on me.
How did the idea of opening the school come about?
I moved to Pakistan in 1993. I was married, had four small children, and once the youngest started school I started working with these children at home, and before I knew it I was training teachers and taking in more students. I try to maintain a 2:1 ratio of students to teachers so that meant every two new students and I would have to hire and train another teacher. We currently have 32 students of which the youngest is 3 and a half and the eldest is about 25 years old.
How supportive was your family of the school which was sited inside your family home until a few years ago?
My husband was extremely supportive. Without his support I could not have sustained the school for so many years. My children were very young and they enjoyed having a little classroom type setting in the house with all sorts of puzzles and art materials at their disposal. As they got older, they would refer to my students by their names and would participate in many activities with them. It became like an extended family for my kids. Now that the two girls are in college in the US and the boys are also at a stage where they’re starting to apply to colleges, I have all the time in the world and can concentrate on work properly.
What do children mostly suffer from? What are the most common conditions, their side effects, and how do you deal with them on a day to day basis etc.?
All are children have some degree of MR, which is commonly known as Mental Retardation. There are mild, moderate or severe cases which vary from child to child and over the different types of conditions such as downs syndrome, epilepsy, cerebral palsy, autism and neurological disorders, such as birth anoxia (lack of oxygen to the brain at the time of birth)
What percentage chance would you say any of the children enrolled at SCEI have of recovery and ultimately leading a normal, independent life?
Special Needs is not a disease and there is no cure. What we do is help the child develop as much as possible; and learn to become as independent in their capacity as possible.
What kind of programs and activities do you focus most on and how do they help the children?
We basically concentrate on Creative Arts, Vocational Programs, Field Trips and Therapies. We take the older kids on field trips which becomes a part of their vocational and life-skills development program. We take them to restaurants and supermarkets so they can get comfortable going out in public and know how to interact with the outside world. If on a certain day we’re going to make sandwiches in school, we take the children to the supermarket and put one item each on their grocery lists. One kid’s responsible for buying the bread; one for cheese; one for ketchup and so on, so they can all contribute to the whole activity of coming back and making sandwiches! The field trips become a part of the whole independent living curriculum, which is a major part of the Vocational Program also because as the children grow up, they have to learn to take care of themselves. Besides field trips, we often arrange fairs to display and sell the things the children make in class. They get a sense of ownership and a confidence boost when people come up and appreciate things they’ve made. All these activities are important because we also want people to get used to seeing special children on a regular basis as our society is not really exposed to them yet.
The curriculum focuses more on activities and academics?
Yes, our curriculum is mostly activity based because it can’t be academic based. We’re dealing with special children and they all have various limitations. If one kid is on grade 4 level academically, the other is on grade 2 level and the third is still on pre-nursery level. For him to read and write properly even at the age of 40 will be difficult. That’s the severity of Mental Retardation.
We don’t group the children based on their academic ability; we try to group them on their social ability. In some cases the MR is very severe but if you talk to them, they talk to you like a normal person, but when it comes to reading and writing, their retention is almost zero. So, we try not to mix children who can verbalize with those who cannot communicate at all. We’re constantly arranging and re-arranging them in groups based on every task or activity so that each child gets the maximum attention and exposure.
What do the children enjoy doing most?
They enjoy everything that most children enjoy. They love music and art they enjoy going out. You would be amazed at their knowledge of all the cartoons and Xbox and PlayStation games. We throw an end of term party every year where we take them to Pizza Hut or some other restaurant and the children like that very much. They also look forward to the sports day and the Eid Milan parties that the parents help organize every year.
Just an example to show how important the school experience is for special children is that on days of play rehearsals or field trips the children are never absent. This just goes to show how much special children look forward to the same things all children do.
Tell me about the day to day problems faced by you and your staff?
One of the main problems I face is the lack of good teachers. If one of our teachers leaves, it takes us four to six weeks to find a new teacher to replace her. Special education is not a financially lucrative field to go into at all. A lot of conservative families are OK with their daughters becoming regular teachers because it’s culturally acceptable, but special education is a whole different world. Getting access to a proper environment where you can learn to teach and deal with special children is very important and we don’t have such places here.
I’m not saying the teachers we have aren’t committed or good enough, because they are, but after working for two or three years they get extremely frustrated and are likely to move into other fields like nursing, which obviously is a more secure profession. There’s no denying the importance of finances. How much money you make becomes a priority.
To understand special children, you need to relate to them on a personal level. How do you and your teachers manage that?
Well our philosophy is that they are children first and foremost. We have basic expectations of them and we treat them as if they are normal. We give them tasks and expect them to do them, it may be at a much simpler and lower level than children their age but nonetheless we take as much time as they need and we do a lot of repetition so that they can grasp the concepts and we keep them from being distracted by working with only one or two children at a time, thus the small ratio. There is a lot of reinforcement and a lot of encouragement for every stage of a task no matter how simple it is.
Parents with special needs often require counseling too. Do you guys provide any such services?
I am available for parents at any time and for as long as they need. We become very close to the parents as we are an extension of their child’s day to day struggles. Parents are comfortable coming to us since we work with their children, we know first hand what challenges they face and they take us in confidence.
Like you just pointed out, our society isn’t exposed to special needs and people with MR are often circumvented just because they make people ‘uncomfortable’. What do you have to say about that?
I’m always reminding people that they’re regular children first; their disabilities come later on. Treat them like you would treat any other child. Many people stiffen up and get awkward around a special child which is very unfortunate because it disheartens the parents a lot and besides, it not something that’s self inflicted, you know? The disability has been given to them by God. We should remember that they’re as much God’s creation as any other person. We need to change our society and I think the best way to do that would be by educating younger children about special needs and making them interact when these children more. This is important because anything you accept as a child becomes just another part of your life when you’re older.
Many people associate special needs with poverty, we don’t associate it with our lives, so, at the end of the day, the child and the parents are very lonely because of that.
This is all obviously hard, full-time work. What’s the down-side of it all for you?
For me this school has become a part of life. I need this work more than it needs me! The more I do in this field, the more I realize how important it is and what all needs to be done.
My biggest disadvantage is that if I concentrate on the school, then I can’t go out and raise funds. If I go out to raise funds, then the school gets neglected.
There are so many other seemingly more important social problems in our society that special needs are almost considered a bit of a luxury! People tend to ignore it because the amount of money and resources you need to properly cater to special children could be used to provide regular education to a much larger group of normal children, where one teacher can easily teach a class of 50 students. But here, one teacher can only take care of two or three children at a time. 10 years down the line, those 50 students will become doctors and MBAs, but these three special children will remain special and dependable on others all their lives. Just knowing that is quite suffocating sometimes. The lack of teachers, like I said, is also a serious problem. We get a lot of students but we have to keep them on a waiting list because we never have enough teachers. It’s very important for people to come into this field because the need is very much there.
Any memorable stories of achievement and inspiration related to the children?
Every day is a special story, really. We once had a student who couldn’t walk on her own. She was 14-15 years old and so used to somebody helping her walk because she was constantly afraid of falling down. When our annual sports day practices started, she was really excited and took part in all the practice races. We were amazed at her progress but didn’t tell the family because her mother was very protective and we were afraid if she found out that her daughter was preparing to run a race on her own, she wouldn’t allow her to take part at all. On the day of the race, the girl ran the whole length on her own and the mother was literally in tears. She couldn’t believe her daughter was running! That was something heartening for all of us because suddenly the girl had confidence that she could do things on her own…
A school in DHA wouldn’t normally attract people from the lower sects of our society even if they’re desperate for their special child’s education. Would you say your school’s catering to a specific class of people only?
We are actually catering to children from all economic sectors. 30% of our students are on concession and our fees structure is very low in regards to the services we are providing. We provide almost one to one teaching, physiotherapy, occupational therapy and speech therapy for roughly about 100 hours a month all for an average of 5000 Rupees. Most hospitals charge 500 Rupees just for an hour long session of speech or physiotherapy.
How does the school operate? I know your personal contribution to the school is unparalleled, but do you reply on donations to some extent as well?
The school operates out of a rented facility and I pay the rent and amenities as my own personal contribution. The tuition only covers the salary of the teachers. Once in a while we get a donation that we can use toward some type of Physiotherapy Equipment or Program Development such as a Khaddi for our Vocational Center. Right now we’re looking for at least 5-6 new computers as the machines we have right now have become quite outdated, they don’t support any of the new games and children’s software that’s coming out these days.
In what ways can people who want to help but can’t commit time make a contribution to this generous cause?
Anyone who wants to help financially can sponsor a child as we have children who can’t afford to pay their fees. But this kind of commitment has to be long-term because you can’t sponsor a child for a year and then disappear. It would be cruel to deprive a child of the kind of environment he or she has gotten used to. There are other ways one can help too. For instance, bringing a group of school children to visit the school to see how these kids manage would be a nice experience for everyone involved. I want everyone to see that these kids do make an effort and they do have potential. I’m actually arranging a play and putting the students on stage in December. I also want to open a shop sometime in the future where I can sell the things they make. People buy from Behbud not because of its quality, but because they know the money is going to a good cause.
Being surrounded by these children has got to be a humbling, emotionally fulfilling experience at the end of the day?
It most definitely is! There are so many things you learn from special children that you don’t learn from each other. You learn to love unconditionally; you learn gratitude and you also learn patience, which is one of the biggest virtues even in our religion. Allah has created these children as reminders of all the good things He has blessed us with and we should be truly grateful. So, you know, the work is rewarding and frustrating at the same time but I love it at the end of the day. Some parents are constantly on their children’s cases to get straight As, but when I go home from all this to my own children, I’m happy and grateful even if they get a B. I kind of hold myself back because I’ve learned to be thankful for what I have.
What do you think is the future of special education in Pakistan?
Well, I’m a optimist so I think the future is very bright! If the right people work together things are bound to get better sooner or later. And if these children have to have a voice, then I’m more than willing to be that voice!
Any message you’d like to give to parents who’ve given up and don’t send their children to schools?
Please start special education as early as possible. Find a school with a small ratio and caring teachers. Make sure your child is in an environment that is conducive to his needs as well as yours. You should be allowed to observe your child with his teacher for your own satisfaction. Meet other parents with special children so you can have support and your child can have friends.