“The statement that really hurt me came from two doctors (a pediatrician & a gynecologist). They said, ‘It’s such a shame that you did not find out during pregnancy that you were carrying a Down Syndrome child otherwise, you must have aborted it!’ “
Huma’s second daughter, Xunairah was born with Down Syndrome in Lahore. Moreover, It was discovered later that she had a tiny hole in her heart.
It was hard for Huma to hear the news. It was even harder for her to hear the pediatrician say that Xunairah wouldn’t be able to attend school, would have serious health issues and had very little chances to live a long life. Huma was despondent but decided to face the tragedy.
“When Xunairah was diagnosed with Down Syndrome, I was shattered. After her test results came I cried for the first & last time in the clinic. I told the doctor that I couldn’t love her any less because she has Down Syndrome.
Instead of saying ‘Why me?’ I said ‘Why not me?’“
A Blessing In Disguise
She took the adversity as a challenge. She told her husband that this was the last time they had cried over Xunairah’s diagnosis. Down Syndrome was not going to hold back their little angel from living a happy life.
“Alhamdulillah I am blessed to have such an understanding and cooperative husband, who would go to any length to support me for our daughter’s cause.
Khadijah is Xunairah’s elder sister. When Xunairah was a few months old Khadijah would often come up to me asking why Xunairah was unable to do certain things, which other children of her age can. When she kept on asking such questions persistently, I decided to tell her about her sister’s diagnosis and how we have to look after her well being together. From then on, khadijah took up the role of a caring and a responsible sister.”
In Search Of A Good School
Huma began to surf the internet relentlessly. She talked to anyone that might be able to help and got Xunairah assessed from the Children Hospital Lahore.
The family decided to relocate to Karachi in June 2011 when Xunairah was two and a half years old. Aiding her search for a good school, the NGO Humqadam, provided her with a list of schools that were inclusive.
Huma called each school on the list. They refused Xunairah admission since the date for enrollment had passed. Huma’s friend recommended Milestone Charitable Trust. She approached Fauzia Hussain the director of the trust. Fauzia told Huma that Xunairah belonged in a mainstream school, however, upon Huma’s insistence, Xunairah was enrolled at MCT.
“Initially when Xunairah was going to Milestone Charitable Trust (special school) whenever I went to pick her up after school, the hunger in her eyes to learn more than what was offered made me feel guilty. That kept me going and fighting for her right to get admission in a mainstream school.
It is the right of every differently-abled child to get admission in a mainstream school to feel accepted by the school and society as a whole. There is so much typically developing children can learn from them and vice versa.
Road To Healing
Taking into heed the school’s recommendation for an occupational and speech therapist, Huma set out to find someone reputable. That was easier said than done. Being from a middle-class background it proved difficult to find someone in her range.
Her prayers were soon answered in the form of Hafsa Iftikhar. Hafsa became Xunairah’s first speech and remedial therapist. Hafsa was a special educator and student herself and Huma saw her daughter flourish during the sessions she had with her.
Negative Evaluation
A few years later, Huma decided to take Xunairah to a psychologist for evaluation. This was required by various schools for the enrollment process.
The psychologist told Huma that children like Xunairah belonged at a special school. She further said that Huma shouldn’t have high hopes in regards to her child. Huma countered the psychologist’s bias by quoting the numerous research that had been done in the West. To that the psychologist said. “I don’t believe in Western theories”.
Moreover, she gave Xunairah a negative evaluation that could prove detrimental for her enrollment in school. Upon Huma’s persuasion, she changed a few words. However, Huma felt very depressed afterwards.
A Happy Ending
However, no amount of negativity could hinder Huma’s pursuit of a better life for Xunairah. She soon found a “mainstream” school that was willing to take Xunairah in.
The Cornerstones school had an inclusive setup. The principal, Miss Tayyaba Malik was very accommodating and eased them into the transition. Thus, Xunairah began attending classes in August of 2013.
Xunairah is now in her 6th year at school. Huma continues to share their story to inspire other parents to never give up hope for their child with special needs.
“Her class fellows at Cornerstones are very cooperative and supportive. They play with her and communicate with her (since Xunairah’s speech is not fully developed). I don’t remember any birthday where Xunairah waa not invited for being differently-abled. “
To no one’s surprise, Xunairah continues to thrive. She’s a member of Special Olympics Pakistan and the Karachi Down Syndrome Programme. She loves to swim and participates regularly in swimming camps. Her charming personality has made her many friends and her cheerful presence brings a smile on everyone’s faces.
How Can We Become A More Inclusive Society?
“As a society, we can all play a very significant role. We can invite differently-abled children in mainstream schools to spend a day with typically developing kids and vice versa.
They can also volunteer for different events and make friends with them. Children can play a very vital role in changing the general mindset.
I often encourage my cousins to talk to their kids about Xunairah and include her in their play.I have a page on facebook called ‘Xunairah’s journey‘.
The main purpose of the page is to encourage and motivate parents who are blessed with Down Syndrome kids. To tell them never to give up.
I would love to help moms by helping them in every possible way, by connecting them with other moms who are also blessed with Down Syndrome kids.”
We wish Xunairah and Huma the very best. Keep on defying the odds and making us proud!
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*Parts of this story initially appeared in Down Syndrome Magazine. You can read it here.
