By: Nafisa siddiqui, New West
Miracle’s Writer
“Don’t look at Our children with Special Needs and feel sorry for Us. Look at our children and be proud of what they have overcome and can achieve.”
Couple of years back I was visiting some relatives in Lahore Pakistan and luckily got a chance to visit the premises of the Hum Mashal Rah Foundation. Amina Aftab, a very loving and devoted person, gave us a tour of different blocks of the building. I was very impressed with the work of these young ladies.
It is an amazing place for the special needs boys and girls to groom their talent. It is home for the children and adults of different kinds of disabilities. The above logo is the logo of their foundation:
Hum Mashal-e-Rah foundation (HMR) is a non-profit organization. It was established on August 18 2017, with a mission to enhance the lives of individuals with different abilities—blind, deaf and mute, wheelchair users, slow learners, down syndrome, autistic, ADHD, ataxia & dyslexia—as well as to promote girls education in rural
areas with inclusivity at its core.
The amazing part is that it was run by mothers of special needs
children.
Their vision
To build supportive and inclusive communities across Pakistan to promote, advocate, and protect physical and intellectual rights of people with special needs (PWD’s) to fully integrate within their communities to reach up to their true potential.
And their mission is:
To construct and develop Institutes (shelter, nursing homes, rehabilitation center’s and vocational training institutes for special needs people across Punjab and the entirety of Pakistan.
In this article I will discuss a mental condition called Down Syndrome.
In 1866, a British Physician named John Longdon Down, fully identified the illness which he named “Down Syndrome”. Down syndrome or Down’s syndrome, also known as trisomy 21, is defined as a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with developmental delays, mild to moderate intellectual disability, and characteristic physical features.
Down syndrome is usually caused by an error in cell division called “nondisjunction.” Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two.
The extra genetic material present in Down syndrome results in overexpression of a portion of the 310 genes located on chromosome 21. This overexpression has been estimated at 50%, due to the third copy of the chromosome present.
About 25 years ago it was a common belief that children with Down syndrome are profoundly retarded. As a result the majority of these poor kids are institutionalized. Although it can not be cured, a great deal can be done medically and educationally to overcome most of the mental, physical, and emotional problems.
Imagine the grief trauma and heart breaking news especially when you are having your first child. You are setting their nursery, praying to have a healthy bubbly child who will fill your world with joy. You go for a check up and the doctor ran some tests and couple of days later you receive phone call from your doctor saying “I am so sorry mam, I have bad news. It appears that your baby may have a slight case of Down syndrome,”. You are shocked as lightning. Strikes you confused and heartbroken.
Most parents don’t have a great understanding of Trisomy 21 and assume it is something that will cause a great deal of pain to their child. When they realize and understand what the doctor meant it seems to them their world came crashing down. But most parents love their baby regardless and get medical aid and counseling and information on how to raise their child. Although it might not be the best news to hear at first, understanding the diagnosis and knowing that children with Down syndrome can still live their lives to full extent, brings calmness to parents. There are tons of websites, but one must chose wisely and work with your doctor and you social services. Latest research has established the fact that children with Down syndrome can learn and can develop different skills. But key to success for this matter is early intervention, and a good support system for your child. A good family physician is needed because Down Syndrome children can develop some other serious complications. Some of the medical conditions that occur more often among children with Down syndrome include:
1- Heart anomalies:
Congenital heart disease is present in almost one half of babies with Down Syndrome.
2- Vision problems:
Vision problems are a great problem for Down syndrome children. Almost half of Down syndrome face vision problems. Beside vision problems, Down syndrome are near-sightedness, cross eyes and have rapid involuntary rapid eye movements. Glasses, surgery, or other treatments usually improve vision.
3- Hearing loss:
Almost three quarters have some hearing loss. We have to keep in mind that children and adults with Down syndrome experience all the same emotions everyone experiences, both good and bad. They also experience mental health disorders including depression, anxiety, obsessive-compulsive disorder, and others.
Some young people with Down syndrome take college classes and many hold jobs in the community after they finish school. Some adults with Down syndrome live independently or in community-based homes or supported living arrangements, where they can get additional support depending on their needs.
The average lifespan for people with Down syndrome has increased dramatically since the early 1900s. On average, people with Down syndrome live to about 55 to 60 years of age and some live into the 70s or 80s.
With the help of specialized educational programs and support, many children with Down syndrome learn and grow successfully.
In Canada, approximately 1 in every 781 babies is born with Down syndrome. There are an estimated 45,000 Canadians with Down
syndrome.
It is very natural that when parents of babies with Down syndrome experience shock, sadness, and fear over the unknowns of raising a child who has intellectual and developmental disabilities.
Serious health problems can add to the panic. Each child with Down syndrome will have a different
experience. Some children will
require more support than others. It is important to provide care and support from a young age to help your child reach their full potential.
Those with Down syndrome nearly always have physical and intellectual disabilities. As adults, their mental abilities are typically similar to those of an 8- or 9-year-old. At the same time, their emotional and social awareness is very high.These children need regular checkups with their family doctor, so that they can advise parents how to manage any medical concern. Every child with Down syndrome goes through a different experience, there is no particular set of rules to deal with them.
We are living in a world full of information easily accessible through the internet. This poses a challenge for parents. A lot of parenting sources may contain inaccurate or confusing information. Parents may feel overwhelmed by the abundance of information or guilty after reading something unrealistic.
More than half of U. S. parents (58%) have used digital media to “babysit” their children. While it allows parents to take a break from parenting, don’t forget technology has drawbacks. According to a Pew Research Center survey (2020), 66% of parents in the United States say that parenting is harder today than it was 20 years ago, in part due to technology. Many worry about how much is too much and what impact screens will have on children’s development. Also, when parents try to take away a phone or tablet, it may lead to an argument.
Accessing reliable parenting information will help reduce parenting burden or stress.
• 5 common challenges faced by parents
• Balancing family and work. One of the parenting challenges that most parents face is having to balance family and work. …
• Time management. Not all parents know how to manage their time when raising children. …
• Screen time and technology. …
• Parenting styles
Children with Down syndrome may face social stigma and discrimination, which can affect their self-esteem and social development. Parents may also face judgment and negative attitudes from others. This can be challenging for families, who may feel isolated and unsupported. Children with Down syndrome are especially sensitive to changes in their environment which they often perceive negatively.
“In the final analysis test scores are not important. We have nothing, as yet, that can measure the quality of life or what a disabled person can achieve from the standpoint of human dignity, social and economic worth. If we look to the future in positive way I trust the day will come when society will not judge a person on the basis of an IQ or mental age score, but rather by what he is able able to contribute to the human experience be it through physical labor or through the simple sharing of gentle, loving spirit with others”.
References: Wikipedia, NDSS (National Down syndrome society), and Tears and Triumphs by -Valentine Dmitriev PH.D
Cont.Email: khooshbo@yahoo.com
Thursday, April 23, 2026
