As I narrated to you about my son Rex’s “UP” syndrome in my last article, I candidly recall his growing years. Staying with the “Up” side of Downs Syndrome means many things like lots of love, patience, kindness, encouragement and being proud of your child.
As a mother of a child with special needs, one of the first things I learned was that on some days, the only predictable thing about it is the unpredictability. At times, the child who lives with Down syndrome and autism may look normal but his behaviour can be downright difficult. Some of you will be reading this as newcomers to the world of Downs Syndrome and autism.
Some of you are already well-acquainted with the challenges of special children but just remember that having a child with special needs required support from the whole family.
Right from the start, you should expect that your child with special needs will be a part of your family, not the centre of it. Just because your child is special does not mean he should dominate your family life. This is not good for the child nor for the rest of the family. Your child does have special needs and he will demand emotional and physical resources that other children might not demand. But remember, your goal is to balance all the competing demands so that everyone in the family can be an equal and contributing member.
The relationship of each family member with the Special child will be a reflection of your attitude as parents. If you hold and cuddle and love your child, if you voice your feelings of affection and if you face challenges in a positive manner, only then other family members will reciprocate likewise.
As you begin the task of integrating your baby and his disability into your lives, you and all the other members of your family will grow to love your child more and more. That love will be your strongest bond.
Through patience and understanding, your child can be a loving member of your family.
One of the things that I remember which kind of irked me when Rex was just a toddler was that lots of people acted as if it was a real tragedy, a real sorrowful moment in our lives and they had to apologize to us. I think it made a big impact when people wanted to extend sympathies and we came back at them very positive and optimistic. We had to let them know that this wasn’t a sad moment. Our whole approach from day one had been that we accepted this right away and the question was not “why was it?” or “whose fault it was?” or “why did we deserve this?” but “what do we have to do to make him the best person he can be?”
Before concluding I would like to narrate one incidence which took place in the school assembly.
The adorable first graders stepped up to the microphone one after another to answer the question: what would you like to be in the future? “A football star!”, “A doctor!”, “A firefighter!” There was this young child called Bryce with Autism who stood up and answered the question carefully: “I think I would just like to be a grown-up.” Applause breaks and the Principal speaks, “The world would be a better place, if more people aspired to what Bryce aspires to be.”
Your child’s disability does not mean that he, you and your family will not lead full, joyous and meaningful lives. You may be scared, but dare yourself to face this challenge with a brave heart and a positive approach.
Please read the earlier article”Up Syndrome- Story of a Down syndrome child”.
Some resources that will help you understand your child better.
235 total views, 15 views today