Down syndrome real life story

Christy Reese, the mother of a young son with Down syndrome, shared her story with Health24.

Breaking the news
Eighteen hours after his birth we were told our child had Down syndrome. We were told in a way that lacked empathy considering the shocking news that was being delivered, even having our beautiful child being referred to as an “FLK – funny looking kid”.

Support, the earlier the better
The nurses, however, were wonderful, and gave us a booklet from the Northwest Down Syndrome Parent Support Group. That, along with an early connection to other families, was invaluable. I remember someone who worked in special education telling me that “he’ll go to school and learn life skills and be able to live independently”. Here was this tiny infant and I thought, it’s my job to teach him life skills, to attend to his school needs and to ensure that he is educated. Thus began our advocacy.

Happy interaction
Fast forward to today and we have this rambunctious little boy who walks, wrestles, talks, signs, dances, and loves music and laughing. How do I begin to share the joy that my little boy has brought us? I have realized that my son’s life is full of small successes, building on each other every day. He enjoys being outdoors, especially playing with other children in the neighborhood. He attends a community preschool, along with typical peers, and is excelling.

Development and learning
We don’t use checklists to chart where he may be lagging developmentally. We know that he experiences delays, but we choose not to make that our focus. Besides, he has his own time-table for doing things and it’s one of his personality traits I love the most. He doesn’t follow the traditional order of learning, nothing sequential for him. When we watch him play, you can see him use his imagination, and the glint of mischievousness in his eye. He is a determined, strong-willed, independent little guy.

High expectations and family support
We have a little boy who is thriving, partly because he has been surrounded by typical children his entire life, and learns from them, but mostly because of the unconditional love and support our families give. His father and I love him more than words can describe. We are so proud. He’s very close to his aunt and uncle, he loves his cousins, and lights up when he sees his Grandma and Papa. There are no low expectations in this family, only the belief that he can be whatever he chooses to be and works towards. We are all on a journey of learning and growth with this beautiful child. He is a blessing, and not a day that goes by that we aren’t thankful.

It is important to source local support groups as soon as possible and to research the syndrome in order to give your little one the best possible chance of healthy development. Being well-informed and having access to proper support will prepare parents for some of the complications that can occur as a result of Down syndrome.

More info:
Support group
Paediatrician Expert
How doctors test your unborn baby for Down syndrome

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