MEET THE HEROIC MOTHERS WHO RAISE CHILDREN WITH SPECIAL NEEDS

Rabia's rose

There was silence in the maternity ward. Then, nervous whispers.

“The nurses looked scared," says Rabia Aziz, recalling the moment of birth. "I sensed uneasiness behind the screen of the C-section. And then they asked, ‘Would you like to see your baby?’”

Little Aaliya was born with an oddly shaped skull, no fingers and fused toes – clear signs of Apert’s syndrome, an incurable genetic disorder which affects one in 65,000 babies.

“You know one of those nights when you pass out and don’t remember how you slept? I haven’t had one of those in three years,” Rabia says.

Apert’s babies have difficulty breathing, so they could regurgitate or choke if not watched at night. Because of the condition of her hands, Aaliya cannot prop herself up on her bed.

There are physical barriers. Because of the condition of her hands, she is unable to break her fall. She needs help going up and climbing down steps.

And although most Apert’s children can speak, Aaliya hasn’t developed language and speech. Her voice is a soft, pleasant babble and she communicates with her hands and expressions.

“It is quite nerve-wracking and heartbreaking when you cannot understand what your child is saying to you,” says Rabia.

As if the physical challenge was not daunting enough, Rabia also battled public judgment. One local doctor was particularly dismissive about improving Aaliya's condition early on in her journey.

“‘Oh just give her love and affection,’ he said. Of course I was giving her that. But I wanted to do everything in my power to give her the best.”

It was decided: Rabia was going to embrace her challenges.

“Being ridiculed gave me strength,” she says. The stares didn’t discourage her either. “It’s really liberating when you stop thinking about what others think about you,” she adds with a smile.”

So how does this mother — whose daughter's extra need requires every morsel of her energy — find this incredible willpower to soldier on? And how does little Aaliya get by?

Rabia goes back to the watershed moment on the day of birth.

Her husband’s words are etched in her mind. “Our child was born with Apert’s syndrome. It was visibly apparent. And he said to me: ‘We will tell it like it is’.” It was the push she needed.

Rabia began to talk about Aaliya.

“We broke the taboo… the stigma of ‘log kya kahengay?’.”

"Being ridiculed gave me strength. It’s really liberating when you stop thinking about what others think about you"

Rabia faced her challenge with a nearly 800-word post on Facebook about Aaliya’s syndrome. “I felt this sharp pain in my chest as if someone had slipped my heart through a paper shredder,” she wrote, describing the emotional upheaval.

She addressed her visceral insecurities. “I remember nursing you [Aaliya] in the NICU and thinking why her? Why my baby? I prayed to God to fix you in whatever way possible, to make you like me. I was afraid for selfish reasons and mostly because I was afraid of the challenge.”

She drew strength from her daughter and her writing became a means of catharsis.

“Aaliya you are only two months old and you have already taught me so many things. Compassion, selfless love and an amazing will.

“You have taught me to keep digging and researching for more resources. You have shown me that no struggle is meaningless. You have given me purpose and made me more resilient.”

It was an emotional, soul-baring admission. And it met with a magical response. Hundreds of likes, comments and messages flooded Rabia’s timeline.

The support – both online and from family at home – motivated Rabia to share more. Soon, she was blogging about Aaliya’s journey. She shared photos before and after Aaliya’s first major surgery – an hours long procedure where doctors worked on her to have fingers and toes – and people cheered for the little warrior.

There were more photos, of her miraculous recovery, happy mall visits, Halloween costumes and other milestone moments in a child’s life.

Rabia talked about Aaliya candidly, and welcomed her friends into her daughter’s special world. In one early update, she wrote: “My fingerless, fearless beauty is a dynamic personality indeed.”

The posts became viral. “In Karachi people got to know there is a girl named Aaliya who had this syndrome. Before she stepped out, they knew there was a child who does not have fingers.”

“At first sight they are hesitant… scared. [They wonder] what’s going on with her hands, her head and her eyes.”

“But when they see her smile, they instantly go ‘aww!’.”

She calls Aaliya’s wide, heartening smile the ‘Pacman smile’. It reflects her amazing aura.

“Whether she’s in pain, or has been slapped by another child at school, the very next moment she has a big smile on her face.”

“It makes me feel so small in terms of my problems. Her smile is my inspiration. She is a love magnet.”

Research and writing became Rabia’s goals, and she now reaches out to other patients living with Apert’s syndrome in Pakistan.

“I have connected with people in Karachi, Lahore and Multan so far,” she says.

Last year, she launched ‘Special Needs Pakistan’, an online forum on Facebook which has become a platform for parents to indulge in a cathartic soul searching.

"Should siblings bear the responsibility of being care takers of their siblings with extra needs?" Rabia asks the nearly 2,000 members in one post. Parents with varied experiences weighed in.

The opinion was strictly divided for and against sibling caretakers. But despite the polarity of the debate, members at the end comforted each other — after all, they face the same challenge.

Before this, Rabia had big plans of launching a business. But Aaliya changed that. She transformed Rabia’s life.

“She is an amazing child – a godsend. She made me a more compassionate person. She changed my outlook towards life… it is not a rat race. It is not a competition. We live in such an artificial world that we forget about the beauty of simple things.

It has been three years since that first declaration on Facebook, and Rabia continues to lead the race for Aaliya as her biggest cheerleader.

Fortunately, after surgeries conducted in the US, Aaliya now has fingers and is able to hold things. “She can drink her milk on her own. If I put a bite on a fork she can put it in her mouth. She can scribble on the whiteboard, too! After 1.5 years of physiotherapy, she started to walk one day.”

She works incredibly hard with her daughter – a perfect mother-daughter symbiosis.

“The goal is to make her independent. We don’t want her to ask anyone for help; it pains me when she is reaching out to a total stranger to help climb a step. I hope that with the confidence I am working to instill in her, she will be able to get by.”

In many ways, three-year-old Aaliya is an ordinary toddler. She enjoys dressing up as the hysterically popular Princess Elsa from Frozen and will be spotted in the characteristic blue dress if you happen to visit on a regular day. She loves Bollywood music, and dancing in front of the TV as it booms is an undisputed favourite pastime.

And even though Aaliya lives with a challenge that has ordained for her to be an unwitting fighter from the day of her birth, with the unflinching support of her mother — her flag-bearer — at three feet, she stands tall.

Sundus, on fighting for Fatima’s chance to hear

A week after Fatima Raza’s first birthday, her parents discovered she was deaf.

Before that day, they did not have the slightest inkling that she had what doctors say is ‘profound deafness’.

“She was doing baby talk and engaging with toys that have musical sounds like regular kids,” says her mother Sundus Munir.

What they didn’t realise at the time, however, was that Fatima was responding to the visual element of toys – a bright light or eye-catching image – and had no reception of sound at all.

Sundus had her tested.

“The hearing evaluation [brainstem-evoked response audiometry] – revealed that Fatima could not hear anything. So if she stood next to a jet engine, maybe she would hear something very faint,” says Sundus.

The revelation shattered the family. Plunged deep in denial, they went for a second test that confirmed their fears: Fatima was born deaf.

Sundus describes the harrowing course of coming-to-terms with the predicament. “I was unable to speak from shock,” she says.

“I could not even say the word ‘deaf’ when I spoke about Fatima till last year. But one must accept it. You have to use the word and come to terms with it. If I can’t accept that she is deaf, how can she be okay with it?”

Her mind was clouded with dreary thoughts of her daughter’s future: was she ever going to attend a regular school? Would she enjoy going to birthday parties? Would she make friends? What if she got bullied?

“I could not even say the word ‘deaf’ when I spoke about Fatima till last year,” she says. “But one must accept it. You have to use the word and come to terms with it. If I can’t accept that she is deaf, how can she be okay with it?”

In the face of a tremendous test of strength, Sundus made a silent vow to fight back.

The lack of accessible support groups or guidance did not deter her; she rejected a doctor’s theory that Fatima would never be able to speak and immediately launched into researching options.

“We could have spent £40,000 to figure out why this happened to us, but we opted to invest in the path ahead,” she says.

Sundus and her husband decided to get Fatima a cochlear implant, a device that does the work of the damaged part of the ear by providing sound signals to the brain.

“We could have had the surgery in the US or India, but we didn’t want to run back and forth between countries in case something happened. We opted to have it done here [Pakistan] by Dr Sohail Awan who has a 98% success rate with 600 of these surgeries,” Sundus explains.

She describes the moment Fatima heard sound for the first time. “It was very emotional for all of us. The doctor turned on the implant and knocked on the table… Fatima reacted. She started to cry. We were all crying.”

From relying solely on sign language and being unable to talk, three years after her procedure Fatima is able to speak and hear mechanical sound. She has overcome the initial unwillingness to wear the device for very long and now takes it off only to charge it while she sleeps at night.

“She is hearing just fine,” Sundus beams. “My deaf daughter can now sing nursery rhymes. She can say full sentences.”

“She is a very stubborn child. It works for her because she is a fighter. Whatever situation you put her in, she accepts it slowly but eventually she gets there."

Although her speech isn’t very clear, Sundus says it is work in progress. Fatima is a fantastic lip reader, and her mother jokes that she may have a promising career as an FBI agent.

“We all ask, ‘why us?’ But things like this teach us to be compassionate and strong. Why not us?”

As the mother of a daughter who was born with a disability, Sundus understands that parents go through a negative phase. “You cry in your own time. But then you need to stop feeling sorry for yourself. You need to help your child.”

Sundus’ current battle is to fight for educational inclusion for Fatima, as several schools are reluctant to take on hearing-impaired students.

But even with her sight set on that daunting challenge, Sundus works hard with Fatima’s speech and confidence to give her the best shot at competing with other children her age.

Ameera's hero

Four-year-old Ameera likes music. Mehrnaz knows this; when someone sings to her daughter or plays a musical toy, she can tell Ameera is enjoying it.

“Any song at all,” Mehrnaz says, “She listens intently. She listens like she can understand everything.”

When her son plays in the garden, Ameera sits in her wheelchair and watches. She cannot actively participate in anything that requires moving on her own.

“I feel she is imprisoned all day,” Mehrnaz says. When she takes her daughter outside, people look at her like she is a prisoner.

But Mehrnaz doesn’t feel that Ameera’s disability is something to be ashamed of or embarrassed about.

“We shouldn’t hide our children; it’s not their fault. God made them this way and hiding doesn’t help,” she says firmly.

In 2012, when Mehrnaz rushed to the hospital with Ameera— a year and a half old at the time— she was worried, yes, but she didn't think it was anything huge. Ameera had contracted fever and was unwell, but things had just started going wrong. She had a seizure and grew worse; one thing was lead to another.

A week after she fell sick, doctors realised that their initial diagnosis was incorrect. Ameera was rushed to a different hospital, where the root of her illness was instantly detected: her brain was completely damaged.

Mehrnaz remembers being in a state of shock. “I started banging my head against the wall,” she says. “Imagine just sitting there, and suddenly your child gets fever, then she has a seizure… I lost my wits.”

What hit her most was how her normal, functioning daughter had suddenly lost everything. Only a few days before, Ameera had been walking and crawling like any other healthy child. Now, she could no longer move her foot. Mehrnaz could remember her daughter's words and laughters from the previous year, but in its place now were only sounds.

“The shock remains, of course, and it did for months,” Mehrnaz continues her story. “But slowly, as humans, we can adjust to anything.” She realised she would have to keep fighting, and she did. “I had to do whatever I could for her.”

Moving continents

While her husband stayed behind in Karachi, Mehrnaz moved to London the same month with Ameera and her son, who was four years old at the time. Life in London was by no means easy, but it was easier. Mehrnaz had sidewalks, wheelchair ramps on public vehicles, and wide open spaces where she could take her daughter openly and comfortably. At the very least, she could now take her daughter outside.

“I was content that whatever was happening was happening for a reason… for my children," she recalls. For the next year and a half, her days were dedicated only to Ameera’s well-being. She put off her career in medicine to take care of her; nothing else mattered.

Ameera, meanwhile, was getting the best treatment possible: she started intense physiotherapy and speech therapy under the care of doctors Mehrnaz trusted.

Everything was planned for them under England's free healthcare system: the hospital sent reminders for upcoming appointments and medicine replacements, doctors and nurses were accessible, unlike in Karachi, and Mehrnaz had constant access to resources advising her on Ameera's upbringing; what therapist to go to, what school to enroll her into.

Thrice a week, a nurse visited their home to check up on Ameera and her equipment, and to give Mehrnaz a break for five hours. For those five hours, Mehrnaz was free to do her own things, to pause for a while.

Everyday fears

Mehrnaz moved back to Karachi in January last year. Unlike in London, here, there is no moment she can rest. Ameera has improved with time, but she is still completely disabled. She needs assistance to eat, to walk and to move around. Merhnaz has hired a full-time nurse to help out; Ameera has to be fed through a tube, and has medications specified for different times of the day.

Everyday tasks are challenges. There are only a few doctors in the city, and it is a nightmare to coordinate with their packed schedules. In addition to her feeding tube, Ameera needs a special wheelchair, a special bathtub and a standing board.

Mehrnaz brought all her equipment from London, but when something breaks down or needs a new part, she does not know what to do.

The one time Ameera’s feeder tube broke down, Mehrnaz panicked because no doctors or medics knew how to fixed it. She rushed Ameera from one hospital to another; she called up doctors ten times, even twenty times. She even tried to change the tube herself. Finally, she finally found one doctor who agreed to help her figure it out; the rest told her they had never handled such equipment before.

Mehrnaz keeps telling her husband they should move back to London, even if for a little while. It isn’t that Ameera has regressed in Karachi, but the amount of attention and precision required in taking care of her is not made easier by the lack of professionals and resources. “My heart fears for her,” Mehrnaz says.

Learning through love

The difficulty of raising a “normal” child is a task on its own, Mehrnaz feels. Any-four-year-old’s energy is enough to tire a parent out, but here is a special child who is dependent upon her parent for everything. Mehrnaz knows her son can take care of himself, but Ameera's case is entirely different.

“That kind of love can’t be described,” Mehrnaz reflects. “It cannot be experienced with normal children.”

That doesn’t mean she loves her son any less—but the love she feels for Ameera is layered with more. For one, she has realised over the years that she will do anything for her daughter. “I have also realised I am much stronger than I was,” Mehrnaz says. “I have learnt about my own strengths. I have learnt how deep love can be.”

She draws her strength from her commitment to her child. “Yes, I have support from my family, from my husband, from the nurse… but at the end of the day I have to do everything alone.” Even then, Mehrnaz realises she is one of the lucky ones. “Think about all those people who don’t have money and facilities,” she says. “Think about all the other mothers going through these challenges every day.”

Meet Mo's supermom

I remember saying the following sentence very soon after my son was diagnosed with autism:

"I have accepted that Moeez is autistic and I am going to deal with it to the best of my ability".

I was proud of myself for not being in denial even for a short while and wasting no time in strategising and implementing a therapeutic course for my son. Thus, as far the word 'acceptance' in its generic connotations is understood, I had aced the act!

I think that most parents of special needs children will agree that the path of raising their special children is often strewn with extreme emotions.

There is celebration on the one end of the emotional spectrum and heartache on the other.

With stereotypical children this upheaval is not so emphatic, at least that is how I have experienced it. For instance, where my other two (stereotypical) boys are concerned, I am not easily distressed by the ups and downs in their lives just as I am not overly exuberant of their success.

Therefore, it is not hard for me to accept that Murad, who is a very talented sportsman, has not excelled in any sport due to his lack of passion and neither am I heartbroken that Mikail plays no sports at all considering both my husband and I are quite sporty and very fitness conscious.

Am I an awful mother?

I don't think so.

It's just that the challenges that I have faced with Mo have turned me into a 'chilled out mom' as far as my other children.

Anyway going back to 'acceptance', as the years flew by I realised that the act of 'acceptance' in the context of Mo's lifelong challenges was a recurrent theme in my life which replayed every now and then following the latter's developmental trajectory.

As Mo grew in years following an uneven path of successes and setbacks, I constantly had to toggle the barometer of 'acceptance' with relation to him.

Along my journey with Mo I had to 'accept' that:

• Mainstream school for Mo was not a suitable option anymore and that he would have to go to a special school.

• He would probably stimm through his life and standout in public as odd while doing so.

• That Mo would have to opt for a life skills path and not go down the academic route.

• That he would never be able to lead a fully independent life

• That Mo would probably never have a friend in the true sense of the word.

• That he would not grow taller than his 5ft height no matter how many stones I turned. So on and so forth.

Thus, whereas during the very first few weeks of Mo's diagnosis, I was convinced that I had dealt with 'accepting' autism, it kept on piling new challenges on me through the ensuing years to date -- challenges whose reality I had to learn to accept.

'Acceptance' has definitely become easier with time but I know now that it is a continuous process and not a one-time thing. This is just the nature of the unpredictability of autism.

‘What did I do to deserve this child?’

I often ask myself, “What did I do to deserve Mo? Why me? Why?”

Now before you jump to conclusions about my questions and just in case you are thinking, “How can she talk like that about her son, what a #@*%^%$#”, please bite your tongue. Now read the questions again, this time with positive connotations and then proceed to read my answer below:

"I don’t know what I did to deserve Mo. What I do know is that God really loves me for He gave Mo to me"

Still the skeptics amongst you may continue to think “Oh, she is just saying it to fool herself. After all what is the blessing in having a special needs child, a child who will never outgrow his autism, perhaps never be able to live independently? Surely she is still in denial, tsk, tsk”!

Dear skeptics, below are just a few reasons why I am so blessed to be Mo’s mother and I want to talk about them because sometimes, like today, I have this overwhelming need to share my gratitude with others. Hence, the following:

Blessing 1

Through Mo I have learned to look at the glass as half full rather than half empty; to be grateful for the blessings that but for him I probably would have taken for granted such as: the act of spontaneous breathing, deep and unhindered; the ability to tie my shoe laces without thinking; the ease with which I read, write and remember things; the way I can tell instinctively what the other person is thinking or feeling and so much more.

Blessing 2

Because of Mo I continue to experience immense joy in the simplest of things such as: a song sung completely off key, a joke repeated a dozen times with recurrent delight, a cricket ball pitched straight at the batsman, a word used for the first time in a sentence and much much more.

Blessing 3

Thanks to Mo every time I come across someone with a disability or a difference I feel love and respect, a warmth that comes from a vicarious connection that transcends ordinary bonds.

Blessing 4

By means of Mo I have found the purpose of my life through my work. He has taught me how to give without asking, be patient in adversity, believe in miracles and persevere tirelessly.

So when the question that I asked at the beginning begs for attention I simply repeat the answer that makes the most sense to me “God loves me for He gave me Mo”!

This post originally appeared on Huma Durrani’s blog and has been reproduced with permission. To read Huma’s story, grab a copy of her book Wrapped in Blue.

Raising Amaan, then saying goodbye

When we contacted Saira Mobin earlier this year, it had just been over a month since the death of her son, Amaan. But despite the anguish of dealing with the loss of her 13-year-old, who fought a long battle with several genetic diseases, Amaan’s mother said she was ready to talk about him.

“I can always talk about him," she says. "It is never a bad time."

Amaan was born with mitochondrial disease, a rare genetic disorder which opened up a world of difficulties for him and his parents since the day of his birth. Throughout his brief life, he battled a poorly functioning liver, muscle weakness and neurological problems. His illness required immense patience and strength; but the daunting challenge did not keep him from living life fully, or from spreading his characteristic, unbreakable, positive aura.

“I don't really remember any day when he was sad,” his mother recalls. “He was a bubbly child. He'd find happiness in almost anything.”

Saira too has experienced the shared trajectory of mothers who have children with special needs: denial, anger, frustration. “It is not jadoo. It is not our ‘fault’,” she emphasies, dismissing societal misconceptions that attempt to “explain” why a child is born with special needs.

“Parents go through a denial and depression phase," she reasons. "The tears are never ending. But if you give up, your child will suffer.”

Amaan's life taught her something else: people never realise they are gifted with inner strength, until they are hit themselves. "I discovered my power last year," Saira says. "But I never really thought it was extraordinary. I just knew I had to, After all, I am the mom.”

There are some things a mother with a special needs child may have to give up. With a daughter (Aimen) who is now 20 years old, and Amaan, a child with special needs, Saira had her hands full. “I worked as a dress designer for a few years after Amaan was born but couldn't keep up with it as his needs were growing,” she says.

“I also worked for a short while teaching children with special needs but had to quit again because of Amaan.”

But she refocused her energy on Amaan and worked hard with her son. He was enrolled at Bayview High School where he studied for seven years. At home, his mother surrounded him with things that made him happy.

“He could sing and was very fond of music– he knew at least 300 Bollywood songs by heart,” Saira says.

Before the fatal seizures occured, Saira says Amaan would constantly have his headphones plugged in, listening to music. "It helped him tame his hyperactivity.”

In August 2014, things took a turn for the worse. Amaan developed rare epilepsy which was unresponsive to any drug. The seizures were no longer controllable. "It was between Amaan and God," Saira says.

His condition deteriorated rapidly over the next few months, and on December 10 last year, Amaan passed away. The months since have been difficult for Saira—as they would be for any parent—but she comforts herself in the knowledge that he will always be with her.

“I miss him so very much." Saira says. "But his deep, unconditional love will help me survive this."

She cries and grieves, but Amaan has also left her with plenty of memories to smile about.

“I have a treasure trove of fond memories; his naughtiness and silliness that made me laugh out loud so many a times...they keep me going.”

Project director: Atika Rehman

Reporting: Atika Rehman, Sadia Khatri

Video production: Kamran Nafees, Sadia Khatri

Development: Aleem Bawany, Nauman Junaid

Design: Ema Anis, Jahanzaib Haque