When my mom first told me I had Down syndrome, I worried that people might think I wasn’t as smart as they were, or that I talked or looked different.
I just want to be like everyone else, so sometimes I wish I could give back the extra chromosome. But having Down syndrome is what makes me “me.” And I’m proud of who I am. I’m a hard worker, a good person, and I care about my friends.
I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.
After all, I would do the same for you.”
Her name is Melissa Riggio and she has Down Syndrome. She is a normal teenager with worries, anxieties, dreams, ambitions, homework and hobbies. She loves singing and she hopes one day she will achieve her aspiration of becoming a singer. She likes horses and cooking. She listens to music and watches TV. She fights with her sisters while loving them to bits at the same time. She is dreaming of her wedding day and is part of her school’s swim team.
She loves reading books and believes that with strong will you can achieve almost everything.
She might not be able to learn things as fast as the other children in her school. Some of her classes might even be with children who have learning difficulties. She also has an aide with her to help her with the more difficult lessons such as maths and biology. She is devastated that she might never be able to drive and she has to daily face prejudice from everyone around her.
Living in a disability unfriendly world
It is surprising to me, that there are still people in the world who are ‘scared’ by the words disable, Down Syndrome and special needs. People with any kind of disabilities are people like all the rest of us and I have found that they are even more compassionate, humane, polite and humble than many of the ‘non disabled’ people I know. Many organizations around the world have been making very hard efforts over the years to educate and inform people on special needs as well as raise awareness and funds towards their paramount cause.
A very special day has been chosen to represent all those that are affected by Down Syndrome, friends and family alike, and to try and raise awareness all around the world so that we learn to live and accept this genetic disorder without fearing it.
“World Down Syndrome Day (WDSD) is a global awareness day which has been officially observed by the United Nations since 2012. Each year the voice of people with Down syndrome, and those who live and work with them, grows louder. But there is still so much more we can do.
[pull_quote_center]I hope to be a writer/screenwriter some day – Ashley Wahl[/pull_quote_center]
Down Syndrome International (DSi) encourages our friends all over the world to choose your own activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.”
Our own resident Cytogeneticist, Maria Tzimina MSc, answers important questions and helps us understand more about Down Syndrome:
What is Down Syndrome and what causes it?
Down syndrome is one of the most common genetic conditions in live born children. It is caused by the presence of an extra chromosome 21, the smallest human chromosome. Humans have 46 chromosomes, 23 pairs in total inherited one from each parent.
As women get older, however, their risk of having a baby with Down syndrome increases. So, for example, a woman in her 40s has a 1 in 90 risk of having a baby with Down syndrome whereas a woman in her 20s has a risk of 1 in 1600. Couples who already have a child with Down syndrome or have a family history of Down syndrome and wish to have another baby, is important to receive genetic counseling to determine their risk since it is higher from that of a couple with a clear family history.
What other health problems are associated with Down Syndrome?
Even though people with Down syndrome might act and look similar, each person has different abilities. They usually have mild to moderate mental retardation or slow mental growth and are slower to speak than other children.
Approximately 50% of babies born with Down syndrome have heart problems that some can only be fixed with surgery. Some babies with Down syndrome have intestinal problems, vision trouble or hearing loss, due to recurrent infections. Thyroid problems and obesity are also commonly seen, as well as an increased risk of certain types of leukemia.
Even though there is no medical cure for the actual syndrome, many of the health problems can be treated. In order, however, to assure that early medical assistance is vital in addition to closely monitoring of the medical conditions present.
Can people with Down Syndrome lead a fairly normal life?
Although many Down syndrome children have physical and mental limitations, they can live independent and productive lives well into adulthood. Still, special education and training is necessary for children with Down syndrome and speech therapy may improve their language skills. Since adolescent females and women with Down syndrome can get pregnant, it is absolutely vital to receive informed and educated information and advice about pregnancy, sexual abuse and how to say no, how to take the right precautions and also learn how to advocate themselves in difficult situations.
Psychological impact on individuals with Down Syndrome and their families
Raising a child with Down Syndrome can be very stressful and challenging for any parent. They are often faced with endless hospital visits, physiotherapy sessions, psychological evaluations, meetings at school, countless doctor appointments and various other problems that sometimes differ from every Down Syndrome sufferer.
On top of all that, they also have to deal with general prejudice, limited support and information availability. In some countries access to help is more difficult than others and parents are left on their own to cope with the difficulties, frustration and stigma of Down Syndrome.
[quote_box_right]”Of course as all parents we still have moments of “fear” regarding both of our children, because you always want your children to be healthy and happy. However, we have learned so much information and met so many wonderful and amazing people within the Down syndrome community, and we no longer fear “Down syndrome.”
We know that it means the little girl who came into our family two summers ago has a very, very bright future ahead of her! Everything is Possible! – Katie & Evan Routzahn”[/quote_box_right]
Children with the disorder are all unique. Noone can fully predict their capabilities or the number of physical features appearance and possible health issues. They could also have a wide range of abilities at school and later life and that is the reason why they should all be evaluated individually. Some of the cognitive problems that are found in children with Down Syndrome can also be found amongst typical children of their age.
Speech and occupational therapy can help address their language comprehension and fine and gross motor skills.
Thankfully, nowadays, individuals with Down Syndrome are becoming progressively integrated into society and community organizations such as health care systems, recreational and social activities, school and work forces.
There is still much room for growth and parents everywhere should be available to access a wide range of support, including psychological, in order to be able to cope with their demanding parenting role, their enormous responsibilities and their feelings of loneliness, isolation and anxiety at times. The need for widespread public education, awareness and acceptance is of utter importance and we should all contribute our part towards that.
Some years ago, I was privileged to have worked with adults with Down Syndrome offering them support, social interaction and essential education. My experience will always be one of the most valuable ones that taught me a real sense of humility, love and what is important. I will always treasure it and hope that I will be lucky enough again to be part of such a special group of extraordinary people.
[pull_quote_center]I owe so much to this child. I am often told how lucky Seth is to have us. I always reply with something like, “We are the lucky ones.” It has occurred to me that we saved Seth’s life by bringing him into our family. But Seth has more than “saved” me.
He has renewed in me the value of the human connection.His skill is in being present with you. His reward is to see your smile. Life is much more beautiful when I slow down and look at it with Seth. I’m so thankful that Seth has taught me how to walk slowly. – Teresa Miller [/pull_quote_center]
Important support and information groups:
- World Down Syndrome Day
- Down’s Syndrome Association
- Down Syndrome International
- Facebook Support group
- Down Syndrome support group in Gibraltar
- Global Down Syndrome Foundation
- DS Network
- Down Syndrome support group in Cornwall
- S.M.I.L.E. on Down Syndrome
- International Mosaic Down Syndrome Association
- Medline Plus
- National Society of Genetic Counselors