Story of a Mother with Down Syndrome Kid
Down syndrome affects 1 in 800 children born in Malaysia. The most common unique chromosomal condition, it is associated with intellectual disability, delays in speech development, and distinctive facial features.
Children with Down Syndrome are often treated as though they are the same. But their families know that they are not. When our first-born child Ryan was born, as a first-time inexperience parent we were excited as well as worried about our capability in raising a normal child.
After a month of Ryan checking in can out of the hospital for jaundice, the head nurse notices a faint feature of Ryan and told us that we should get him tested as she suspected him born with down syndrome. The news was like a tight knot in our stomach and reluctantly Anna and I decided to send a blood sample to reaffirm his condition.
About a month later, we receive the result, and it was devastating to us. We were feeling lost and even having serious doubt how we could raise Ryan.
Looking back today, 21 years ago, it was a journey fill with frustration, laughter, appreciation and most of all love.
The One powerful Lesson Ryan taught me….
Every child is different, and every parent loves their child differently. There are no wrong ways to love your special needs child, but there are right ways. Special needs parents can find many challenges in dealing with their children, but the one thing that will always remain true is that they love them unconditionally.One of the greatest lessons I learned from Ryan is “Acceptance”. I learned that you have to accept people for who they are, not what you expect them to be. You also have to accept the fact that God will only give you gift that he knows you will be able to handle. Though it may not seem like it at first. You will face confusing times, questioning why has this happen to you. All I can share today is that Anna and I feel that Ryan has been such a unique and remarkable gift that has shaped us into the person we were destined to be. We can never ask for a better child than Ryan.
Practical parenting tips
Parents of children with D.S know that the condition is not something they can prepare for. The diagnosis may be difficult to process and may require some time before you feel ready to take on this challenge. But with the right information and resources, you will be able to take care of your child with Down Syndrome in a way that will help them thrive, grow, and fulfill their potential.
So here are some practical tips for parenting a child with Down Syndrome:
Instead of denial, seek early intervention
Children with Down syndrome have specific educational needs that are different from other children. It is important to find the right school for them, especially in the early stages of their life.
Get involved in your community for support
There are many ways to get involved in the community. You can volunteer at your local Special Olympics or special needs children association, become an active board member. These are all great ways to meet new people and be around like-minded individuals who will support you through life's ups and downs.
Teach them skills they can use throughout life;
It is critically important that children with D.S be taught life skills rather than academic studies. The learned skills then can be use to earn money throughout their life. They will be able to care for themselves and live an independent life.
We also need to cultivate the right type of behaviour until it becomes a habit for them. Habits is one powerful God’s given natural gift to us. Habits such as personal hygiene, eating right and how to greet and behave around other people.
Making home that promotes open communication
Some families with children with Down Syndrome are struggling with how to create an environment that is both accommodating and healthy for their child. One issue that some of the family members especially their sibling may not fully grasp how to communicate with D.S brother or sister.
I remember many a times Ryan younger brother Raynald was so frustrated with his habit of messing up the room after playing. I had to explain to Raynald why his big brother is the way he is and also to guide Ryan to keep his toys after playing until he does it automatically.
