“Congratulations! When is the bundle of joy set to arrive?” is the usual inquiry Sara was faced with sixteen years ago just before the birth of her second son. Little did she realize her son Hilal would be a special child – he was afflicted with autism.
Most parents are apprehensive to hear the news that their child might be disabled. Usually, they go through the steps of denial, blaming each other, bargaining with Allah, rationalizing, and finally arriving to acceptance. They have feelings of inadequacy, helplessness, and anger. Why them? How will they manage? Will they be able to adjust? Sara recalls being haunted by all these questions. She would read the Quran for inspiration. “Allah burdens not a person beyond his scope. He gets reward for that (good) which he has earned, and he is punished for that (evil) which he has earned. ‘Our Lord! Punish us not if we forget or fall into error, our Lord! Lay not on us a burden like that which You did lay on those before us; our Lord! Put not on us burden greater than we have strength to bear. Pardon us and grant us forgiveness. Have mercy on us. You are our Maula (Protector) and give us victory over the disbelieving people.’” (Al-Baqarah 2:286)
When parents finally accept that their child might need extra help, they are at a loss of where to turn to. A student pursuing her Masters in this field recommends that the child get his IQ tested. In Karachi, the most reliable place to have this done is the Aga Khan Medical Center.
Once the psychologist has determined the cause of child’s limitations, the hunt for the proper institute begins. Just as there are numerous handicaps a child can face, there also are many institutes that specialize in some or all of them. Following is a list of institutes that are tried and tested by various parents and professionals. Special education professionals recommend that you personally visit the institute, get familiar with its policies, and inform the entire staff, from the van driver to the child’s teachers, of your particular situation. As with any child, each case is special and each child has his own learning curve. One important point to remember is that parents should not be discouraged by the slow learning rate of their child. It has been known for a child to take four years to learn the English alphabet.
There are several obstacles parents usually face, while caring for a special child:
Parents of disabled children face three times the costs of parents of non-disabled children. It is usually the little things that add to the expenses, such as extra bed sheets, special food, medical attention, and supplies.
In the 21st century, we are slowly moving from single working parent to a two working parent family. With the arrival of a disabled child, special attention is required for his care. One or both parents have to compromise their careers, in order to provide adequate around the clock attention for their child.
Special children have special needs. Take the example of a blind child, the house he lives in should be designed to suit his needs, making it easy for him to lead as normal life as possible. However, parents can hardly afford such drastic changes to their homes.
There are numerous foundations in Karachi that work for and with the disabled. However, most parents cannot afford the high cost of these institutions. In fact, most of the institutions have limited space and hundreds of children have to wait or suffer with inadequate care. The fees of some such institutions begin from Rs.9500 monthly.
Several parents have showed their concern that there are not enough support groups sponsored by NGO’s or foundations dedicated to help the disabled children. A special education graduate said that the institutions usually do not want to get closely involved with the parents. They let the parents form their own network and support groups. There is no counselling available for these parents either.
The most important thing a parent should realize is that they must make their child as self sufficient as possible. Vocational skills, such as carpentry or weaving, will help the child to earn a living. Handling of money, managing critical household chores, and not losing confidence about him are the essential basics a special child should be taught.
Make sure your child feels important – if you give your child attention, so will everyone else. Train everyone around your child to deal with any difficult situations that might arise. One parent claims that her child is not socially very adept, so she works on developing his social skills by inviting the neighbourhood kids over to play. She entices them with pizza, burgers, and a play station. As always, a sense of humor is paramount to leading a stress free life.
Often, a question comes to mind: “What helps?” Several things can be implemented to help parents to make the transition for taking care of a special needs infant and adult. Parents are not the only ones who require help and counselling. The extended family should also be involved, so the child has a healthy environment to grow in. If anybody else takes care of the special child for an hour or so, parents can get away and have some time for rejuvenating themselves. Extended family members can also help by spending the time with the parents and the child as well as by taking care of the normal siblings. It is an opportunity to create stronger family bonds.
It is not easy to bring up a child; bringing up a special needs child is ten times more energy consuming and mentally draining. However, the reward of a smile, a hint of understanding, and a new skill developed makes it all worthwhile. This is your opportunity to create and strengthen the family ties. Encourage your other children to help a sibling in need. The single most important virtue is patience, depend on it, and you will emerge triumphant with a socially integrated, confident, and self-sufficient child, Insha’Allah.