When did you find out your daughter had Downs’ Syndrome and how did you react?

We were told a day after she was born. It was extremely sad to take this in and I was in tears for very long and questions of all sorts started to flood in my head.

What is Downs’ Syndrome?

Downs syndrome is a genetic condition that is caused by an extra chromosome in the body’s cells. All cells have a nucleus usually the nucleus of each cell contains 23 pairs of chromosomes 23 we inherit from our mother and 23 from our father. In people with downs syndrome the cells contain 47 chromosomes with an extra copy of chromosome 21. This additional genetic material causes downs syndrome. It is not known what causes this to happen.

What were the reactions of your family, friends and community?

My family Alhamdulillah despite feeling for me as it was my first child were extremely supportive in every way. They kept visiting me and my daughter at the hospital and took me out sometimes to give me a change which was very important. My chacha when Khadija was born told me that Allah chose me out of so many to have khadija coz he knew I would be able to do it and till today all my family and friends say what a good job I am doing of it( its not easy being a mom and being a mom of a child with downs is way harder) the encouragement is very important coz it keeps you going. My friends encouraged me to not stay home and start working once my daughter was better and the hospital trips had reduced. Khadija was an extremely cute child but she had a nasal tube as she couldn’t eat orally I used to take her to mosque and some looked but some asked as they were curious but all would say how beautiful she was. There are some very lovable people I know only because I have khadija.

Have those reactions/perspectives changed over the years?

Not at all. Everyone friends and family are ever supporting and accept khadija as she is. They educate their kids of khadija’s behaviour so they are more tolerant towards her.

What are your daughter’s main difficulties?

She has a global development delay which means she’s slow physically and mentally. This includes health issues like her growth, she has a heart condition, dry skin etc and also her behaviour and social skills. She is not very aware of things around her so can be a threat to herself or others if she’s left alone e.g. she doesn’t know how to cross roads or that babies cant eat solids etc.

Does your daughter have any other disabilities, such as a hearing impairment, visual impairment, learning difficulty etc?

With global development delay all aspects are affected so yes she has all those difficulties.

Does your daughter go to a special school?

No. she goes to a mainstream school as I was advised by a very nice lady from a group called Portage- I am very happy I made that decision because she has the same expectations (socially) as any other child in her school.

Does your daughter have hobbies and interests like her peers?

Yes- she loves going out especially to the mosque and to the park and having parties! She loves to swim and is over active! There are some things she doesn’t do like watching TV on her own because her level of understanding is lower. She has also begun to like reciting in public after watching her cousins do so.

Does your daughter socialise with normally developing children her age?

It sometimes gets frustrating as she has to do everything with mummy! There is nothing that khadija does by herself!She does however is not accepted fully as her way of communicating is like that of a 1/2 year old. Sometimes she’s neglected by her peers but that doesn’t bother her so much.

What are some of the challenges you face raising a child with Downs’ Syndrome?

There are many like not being able to see your only child do as well academically or when she’s not invited to parties of friends at school or madressa however it’s the worry of her well being that is most difficult for me. The uncertainty of her future.

Does your daughter attend Madressa and if so, how does she cope in a mainstream classroom?

I have not got enough words to praise the SEN faculty of madressa. They are in my eyes God sent! They all not only adore khadija but are qualified and very professional in what they do. She has been provided with an LSA for every lesson that helps her learn and take part in class for every lesson and exam. Mashallah she has got really good grades which is very satisfying for a parent

Would you wish your life to be different?

I wish khadija can do more things and overcomes all her difficulties (please remember her in your duas) but I believe a child with difficulties is loved more and I can’t think of my being without her.

If you could change one thing, what would it be?

I would encourage our Jamaat to do more things for kids with special needs in terms of making everyone aware and inclusion (in events / competitions/ functions)