OCTOBER is Down Syndrome Awareness Month. For me, as a mother of two children with DS, this month represents an opportunity to change mindsets, educate, advocate, celebrate and encourage acceptance of my children and all who are like them. Everyone wants to be valued, to be loved, to belong — it’s what makes us human. One’s possessions, abilities or appearance have nothing to do with one’s true worth. This is exactly how individuals with DS should be made to feel. Raising awareness is the first of many steps to creating an inclusive, non-judgemental, accepting world.

DS occurs when a person has three, rather than two, copies of the 21st chromosome. Individuals with DS can have mild-to-moderate intellectual and cognitive disabilities, along with delayed developmental milestones. They may have distinct physical features that include almond-shaped eyes, relatively small stature and low muscle tone. They are at an increased risk of medical complications like congenital heart defects, hearing and vision problems, and endocrine and autoimmune conditions. Both our children spent several weeks in the neonatal intensive care unit after birth due to congenital heart defects.

DS is a chromosomal, not hereditary, disorder that happens by chance and at random. It can happen to anybody, yet the child’s diagnosis is often blamed on parents. Mothers are often stigmatised for giving birth to a so-called ‘abnormal’ child. For Muslims, it is a particularly regressive mindset as our faith dictates that everything is by the decree of Allah and He does as He pleases. There is perfection in each one of His creations, and that is how we see our children.

Communication is an essential part of human interaction and despite their inborn drive to communicate, children with DS often have physical and cognitive characteristics making speech and language difficulties more likely, which can sometimes lead to frustration. Sign language is especially useful for communicating their needs before they start talking.

People with Down syndrome can lead fulfilling lives.

People with DS are capable of leading fulfilling lives if provided proper early childhood intervention in schools and homes. Our children receive physical, speech and occupational therapy regularly, which enabled them to be more independent. Parents have to be their child’s best advocate and fight for their right to an inclusive education in mainstream schools and in extracurricular activities like sports, etc.

Inclusion means embracing everyone by not excluding anyone on the basis of disability. In schools, it is the first step to instilling in children an appreciation for each other’s differences. Modifications and accommodations in curricula and environment can enable children with disabilities to study in mainstream schools. Our children are part of an inclusive classroom that allows general education teachers to work alongside special education teachers to meet all students’ needs. Inclusive education benefits all students as they learn to appreciate values of empathy, caring and community.

As parents of children with special needs, our goal is to create a less restrictive and more accessible environment. Mundane things that most families take for granted are cherished in our home. The constant struggle for our children’s inclusion is our toughest battle. If all parents remember that there is beauty in our differences and everyone is born with a purpose, the battle for special needs parents becomes easier.

To parents who have a child with DS, I would advise you to walk into the future with hope, not with fear. The first few years are tough, but things start looking brighter as you see your child progress and achieve their goals in their own way, at their own pace. Under­stand that they may take longer, but they will get there. There is no doubt that parenting children with DS has its unique challenges. But by diligent planning and working together as a society, these challenges can be turned into opportunities to seek goodness in this world and the hereafter. We find joy and satisfaction in knowing that each accomplishment, however small it may look to others, is a major victory. Know that each of your child’s achievements is at least partly your own.

Every day we make choices. Let’s make a choice to be kind, to show empathy and to spread love. There is a dire need to spread the message of love and eliminate all forms of discrimination by appreciating others around us who may be different. When you see a person with disability, remember to look at their strength, the hardships that shaped them and their perseverance instead of making them uncomfortable by staring and whispering. People with DS can read, write, attend school and college, work and pursue jobs in something they enjoy. They can lead happy, fulfilling lives.

So, the next time you see someone with DS, walk up and start a conversation. Instant inspiration is guaranteed — and you can thank me later!

The writer is an advocate for persons with disability.

Published in Dawn, October 25th, 2019