A life worth living.

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.

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