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Living With Cerebral Palsy |The Perfect Child

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Abdullah was a 10-pound baby who was incredibly hard to deliver, but the doctors guiding me through labour advised against performing a C-section. Insisting that a ‘normal’ delivery was the way forward, my son came into the world stillborn, after many hours of struggle.

 

The doctors then broke medical procedure and tried to revive him eight minutes later. Without a thought to the repercussions of this act, they managed to bring Abdullah back, but by this time, his brain was badly damaged due to lack of oxygen. My naivety, and the carelessness of the doctors who took charge changed two lives forever; Abdullah’s, and mine as his mother.

My son was diagnosed with Quadriplegia, the worst kind of CP that affects all four limbs. When I learnt about Abdullah’s condition, I researched all that I could about CP and its associated risks and complications.

I flew my son to Dublin to one of the best hospitals I could find. The doctors there outlined Abdullah’s prognoses and told me he would not live longer than seven years. This, for me, was the hardest news I had ever received, but I decided to take on this reality as a challenge, as pure joy.

I put faith in my child and took it upon myself to give him the best life I possibly could. From the start, I knew I had a choice; either give up and continue to live with an unending sense of despair, or learn to cherish each and every moment I had left with him.

I knew had to keep myself strong for his sake, but in all honesty, the initial period was filled with grief. I wasn’t prepared for any of this, but time, experience and yes, mistakes, taught me how to give Abdullah the care he needed.

The difficulties accompanying CP are far too many to list here, but the affection my child bestowed on me was a constant gift that gave me the courage to overcome the hardest challenges, the most trying moments. In all this, I learnt a lot about myself as well – I learnt that a mother’s love knows no defeat.

Abdullah was my blessing in so many ways. Conventional truth says children who are diagnosed with CP have little understanding of their surroundings. I couldn’t disagree more; Abdullah’s sense of awareness was tremendous. He laughed when he was happy and cried when he was sad. He was quiet when he knew I was feeling down; he was receptive in many ways.

As my love for Abdullah grew, so did the difficulties. The stiffness of his muscles grew worse. His diet was ever complicated. I had to regularly look after his cleanliness and movement since he was incapable of any movement of his own. He loved to eat but that soon became difficult due to regular attacks of bronchitis. A peg tube had to be used to aid his digestion.

These complications are just some of the issues associated with CP babies that one has to be prepared for. Along with this constant care comes the emotional turmoil that neither research nor doctors can fully prepare you for. The only secret to making it through is having a positive outlook; to have hope.

My son’s life expectancy was seven years but I did not give up on his little soul, and with his bravery and help, Abdullah and I shared the best 11 years of my life.

He passed away peacefully two years ago due to heart failure.

In our shared experience, I learnt that medicine has done a lot for us and we should be thankful, but no matter what happens, parents should not lose hope. I know many children with CP who are living fulfilled lives, going to school and hanging out with kids. Every child is special in their own way and CP children are no different.

So here is a prayer to all the CP children, and to their parents who work tirelessly to make life worth living. Don’t lose hope, no matter how bad it gets; our children, like all children, deserve the best.

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Hamza Yaqoob’s tiny toes work steadily on the keyboard. The letters slowly form sentences to a short essay: “Myself”.

 

When Yaqoob first started typing with his feet, his father admonished the school staff at the “degrading” exercise. As days passed, however, the admonishment turned into astonishment and before long Yaqoob had performed tasks on the computer his father would never have imagined his son was capable of.

Diagnosed with Cerebral Palsy (CP), the eight-year-old Yaqoob, who appeared on national television along with his proud father earlier this year, is one of 120 students enrolled at the Al-Umeed Rehabilitation Centre (Aura) in Karachi.

CP is caused by a non-progressive brain injury or malformation before, during, or immediately after birth and affects both the physical and mental state of the child. As a consequence of trauma or damage to the brain, the child’s body movement and balance, vision, hearing and speech are affected. Intellectual impairments and seizures also accompany CP but each case is unique to the individual.

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Yaqoob, who has ‘severe’ CP, suffers from movement dysfunction and speech impairment. His hand functions are very restricted, so communicating in sign language was not a possibility for him. But over the last six months he has been trained to express himself using a foot-level keyboard, touch-typing every single letter using his toes.

His therapists hope, his brain will be ‘trained’ in a way that the undamaged parts take over the functions of some of the affected parts and eventually make him a little independent. And that is essentially what Aura is striving for and something which makes it a one-of-a-kind school in Pakistan for children with special needs.

“Our purpose is not to only focus on academics. The primary goal is to make them self-sufficient so their own families do not think of them as a burden,” says Dr Habiba Hasan, a pediatrician and one of the founders of Aura.

Aura teaches everything that regular schools do but the classroom setting differs considerably.

A classroom typically accommodates 20 to 30 children but at Aura, a single class does not have more than eight children, since individual attention is needed. The study tables run along the wall rather than filling the middle of the room, for extra support.

All of the children are placed on individually tailored seating aids that are adjusted before they leave for their classroom. They are supported by varying equipment; belts, foamed dividers, depending on the muscle spasm.

“We have different pacers for the kids depending on their muscular requirement. They are changed after every three hours to avoid muscle tightening and stiffness,” said Huma Khan, senior therapist at Aura.

Some are seated on a horse-rider, a tool used to separate legs that are crossed together; a spine wedge is used for strengthening the back, and negator for crouched knees that can help a child balance while walking. With their aids on, they are then taught according to their individual curriculum.

Since the injury lies in the brain, the mental capacity to absorb and retain information varies in every child. Those with lower intellectual capability are taught how to ‘perceive’ images and objects through flashcards. Those with better understanding are taught English, Mathematics and Urdu at an advanced level. Children who have a better hand grip are encouraged to write with the aid of a pencil holder to control shaking.

“Most children with CP have speech problems and they usually communicate in sign language. Some of them also have impaired hearing which makes it difficult for us to teach them,” says Safia Sultana, an academic at Aura.

“Understanding them and making them understand us sometimes becomes the biggest hurdle towards progress.”

The beginner class is named ‘searcher debutant’, in which children with the lowest IQ are placed.

“In our most basic class we have children with the ‘mental age’ of four to five months who require the most care,” says Mariam Abu Bakar, also an academic.

“Our focus with these children is to improve their physical impairment. They have to be strapped on to avoid falling because their motor reaction is weak; those who can’t walk are also placed on the tilt table.”

A tilt table is designed to put weight on the legs. The child is strapped on and the table is made to stand straight.

Other than academics and physical therapies, another aspect that is stressed upon is Activities of Daily Life (ADL). As is the case of young Fatima who has minor CP. She could walk, talk and understand. But needed to be trained and retrained on how to manage ADL.

“Our foremost priority is to make the child capable of performing ADL which include basics like getting dressed, washing hands, eating and ‘buttoning’ (a piece cloth with buttons is stitched on a canvas and handed to each kid for this exercise).”

“Learning these basics is a step towards development,” says Shabana Nasar, the principal at Aura.

The lunch hour, too, is a very vital learning session where children are encouraged to eat and chew without help.

“We do have customised cutlery like spoon holders for children with weak grip. Food is added depending on the weight the child can carry which can lessen the tremors in their hands,” she adds.

A popular notion is that children with disability should be gradually taught everything that a normal child can do. The therapists, however, disagree.

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“We do not focus our attention on what the child is incapable of doing, we work on their talents and polish those so they can excel in them,” says Nasar, who has a Masters degree in Neuromuscular Rehabilitation and over two decades of experience at Aura.

“Children who can’t walk at all, we work to make their hands strong enough that they can propel their wheelchair themselves.”

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Kashif Saleem just has one wish: to drive a car “very, very fast.”

 

Saleem’s new found passion is not surprising to his therapists at Aura, after all he is their “star athlete”. The 22-year-old, who was diagnosed with mild CP, competed in the Special Olympics in Karachi and narrowly missed out on winning the top prize in the wheelchair race.

When he first came in to Aura, Saleem could not propel his wheelchair and had short-term memory. Twelve years down the line, he has not only mastered control over his physical ailment but has gone beyond it. But Saleem’s talent is not restricted to the track alone.

After years of perception training, it was discovered Saleem had a keen eye for art and nature as well. He was drawing sceneries and even sketching animals until one day his work was displayed at an art competition, winning him a prize. His therapists at Aura were also of the opinion that art would give the young boy a tool to express himself.

There is one other thing. Saleem is a bit of a mathematics whiz.

His quick mental math coupled with an interest in buying and selling caught the attention of his teachers at Aura who decided to try a novel approach to put this skill to practical use. So now every day in a 10-minute exercise, Saleem handles the ‘finances’ at the school’s little tuck shop which is used by the faculty.

“By making him in charge of the tuck shop the aim is to make him feel that he can be relied on and is self-sufficient,” says Nasar.

“Saleem’s father is a businessman and with step-by-step training he can assist him in the future.”

 

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We would ask her questions in a way that she was able to answer with a ‘yes’ or ‘no’. Three small gentle taps would mean approval and repeated five or more loud taps meant disapproval.” Saima Shafiq, the computer teacher, says proudly of her student Sara Bano.

 

Bano has Athetoid Cerebral Palsy which affects her muscle tone and body movements. With impaired speech and rigid hand muscles, communicating with her was a major challenge.

Her therapist and teachers worked with different ideas to find a way for Bano to be able to express herself and at times a lack of progress dimmed their spirits.

“Teachers do get hopeless and depressed at times when the children are unable to respond or retain the information that is repeatedly taught to them,” principal Nasar says.

“A normal child would learn within days, but this kind of education can take years.”

However, the emotional attachment to the kids means that some teachers are just not willing to give up.

“It has been seven years since I joined and I have seen remarkable progress in children,” says Huma Khan who is a senior therapist.

“We have formed an emotional attachment with them and even a little progress keeps us going.”

And so after devoted attention for two years, therapists were finally able achieve what they did with Bano.

After trying various brain stimulation activities with her, Bano finally responded using her feet.

Recognising this ability, Bano’s computer teachers began using a foot-level keyboard attached to a computer to communicate with the little girl. And just like Hamza Yaqoob, the little girl too has progressed to a level where she can form full sentences to express herself.

It is achievements like these that lift the spirits of faculty at Aura, some of whom have been working at the school for years and do not plan on leaving anytime soon.

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Sadia Siddique was delivered without any complications.

In a society where disability is rarely accommodated, it was a very tough beginning for Siddique, who demonstrated great aptitude for learning.

“I enrolled at Aura in 1989; I was part of their first batch. At that time, they only offered therapy, later it became a school,” said Siddique.

“When I came here, I could not speak at all and I had no confidence. There was a strong feeling inside of me that I lacked something.”

With physical therapy, there was a marked improvement in Sadia’s speech which gave her a confidence boost.

“I can now have entire conversations; my eight years at Aura changed my life.”

For Siddique, the decision to leave Aura came with an aspiration to get further education and build a career. So she decided to prepare herself for Matriculation exams.

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“My tutor opted for rote learning as his teaching style. This did not work out for me at all and that is not the way I had planned to gain knowledge and move ahead. So I decided to give a shot at O levels.”

It took Siddique six years to prepare for the final exams because she could not find a tutor patient enough to teach her entire courses.

“Then I found Sir Moizuddin. He taught me Mathematics, Additional Mathematics, Statistics and Accounting. He also found me an English tutor. His support was endless.”

The preparation for the exams was not the only challenge; putting her case forward to the British Council became the next hurdle. Siddique wanted extra time because her hand movement was slow but she did not want a writer as her aid, nor could she sit in an examination hall.

“I could not trust a helper to understand what I was trying to say since I have speech problems. And I wanted breaks during the exam because it is difficult for me to sit in one position for very long.”

The British Council readily gives 25% extra time to students who have minor disabilities, but Siddique’s case was complex. “I was given 50% extra time the first time I sat for the English exam. But even this was not enough for me because there was a lot of writing involved. I ended up with a U grade. I was extremely disappointed.”

Understanding her impairment then, she was awarded 100% extra time for her re-exam and this time she secured 64% and passed all her subjects. “Throughout the six-hour-long exam, my sister would sit with me inside the room and the rest of my family waited outside. For the eight subjects that I appeared for, all the struggle and leg work was done by my mother and sisters.”

Siddique’s achievement is commendable but since there are no institutes in Pakistan for higher education which can facilitate students with severe disabilities like cerebral palsy she has hit a dead end.

“I do not want to bother my family now any more. I cannot go to an institute because I have to walk with support, and there are many other problems. My family and Aura made the base for me. That is all I need.”

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Dr. Habiba Hasan always advises parents to not hesitate in seeking help for their children when they are diagnosed with CP.

“If they are brought in at one or two years of age, their muscles are considerably relaxed. But usually those who come in are aged eight and above and by that time they are burnt out. Their muscles have stiffened and there isn’t much we can do.”

The best possible treatment for children with CP is early intervention. However, the social stigma in society regarding this impairment prevents many parents from seeking treatment immediately, often confining them to their home.

Even after multiple therapies, training and making these children feel independent, it is still difficult for children to be fully accepted and conduct meaningful interaction with people.

“To integrate them back in society they have to be given exposure to the outside world. Similarly, people need to accept that there are special children who need not be stared at or treated awkwardly,” says Dr Hasan.

Aura organised a number of field trips in the past year to events like the dolphin show and the flower exhibition and took the kids out to the State Bank and the local markets to make the children familiar with social etiquettes.

“They do develop complexes and behavioral problems, which is why we always refer a psychologist after they leave school,” said Dr Hasan.

“Especially during their teenage they have sexual problems leading to aggressive behaviour.”

With criticisms, reproach and unfamiliarity surrounding any disability, it becomes equally important for parents to get counseling.

“I have been a pediatrician for 40 years and quite often I hear that you must have sinned to have such a child. I reassure the parents that no, you have been given a child who cannot commit any sin because he or she cannot do any harm to anybody. You have been given an angel, try to serve this angel and you will be rewarded in this world and the next; just collect your rewards,” she says.

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