By Lisa Graystone

October is Down Syndrome Awareness month, but it is something that I am aware of on a daily basis. My son, Blake, was born with Down syndrome in May 2011 and I have subsequently taken an emotional crash course on this chromosomal enhancement. It has enriched my character and my life in more ways than words could ever express. Blake’s presence has also enhanced the lives of everyone he comes into contact with.

Savvy Aunties play a crucial role, this month and all months, by being educators. For those of you who have a person with Down syndrome in your family, approximately 1 in every 691 of you, your greatest impact can be made by way of supporting your niece or nephew. You can also act in a supporting role to their parents as they navigate this amazing road against a judgmental, uneducated societal backdrop.

For those Savvy Aunties who are not connected to someone with Down syndrome, by birth or through other avenues, you can always act as educators to those around you, or seekers by getting involved in the community and leading your nieces/nephews by example. No matter what your connection to this community, we are all connected to humanity, thus we can serve as educators on the quest for respect and full inclusion.

By and large, children harbor little to no prejudice, preconceived notions or fear regarding their peers that appear “different.” Such feelings and thoughts are learned from parents or projected onto them by the adults around them. The best thing a Savvy Auntie can do is lead by example. This month would be a great time to talk to your nieces or nephews about what Down syndrome is and what it is not.

Down syndrome is:

- A third copy of the 21st chromosome, also known as Trisomy 21.  You and I have 46 chromosomes and a person with Down syndrome has 47.

- There are 3 different forms of Down syndrome: Trisomy 21 (nondisjunction) = 95% of people. Translocation = 4% and Mosaicism = 1% according to the National Down Syndrome Society.

- People with Down syndrome live full and happy lives. They play sports, have jobs, relationships and social lives.

- People with Down syndrome will learn at their own pace but they will learn and have the ability to complete pre and post-secondary education.

- People with Down syndrome benefit socially and academically from inclusive classrooms and supportive environments and conversely so do peers, educators, and others.

- A genetic syndrome that is expressed differently in each individual! Some of the physical traits are common to Down Syndrome but no one is alike physically or in ability.

Down syndrome is not:

- Something to fear

- Something you catch. It is also not genetically “passed on” or “inherited” (with the exception of translocation; 4% of all people).

- Something that is negative, bad, or should be given pity. Having Down syndrome is a challenge, but not in a negative sense. Just like anyone else, someone with Down syndrome can achieve anything they work hard at with the proper supports.

As a parent of a child with Down syndrome, and an auntie to nieces and nephews, the most important thing we can teach children, as well as adults, is what I refer to and coined as the ultimate human “TRAIT:” TOLERANCE, RESPECT, ACCEPTANCE, INCLUSION, and TRUST. These are lessons that have universal applicability but can be specifically applied to Down syndrome.

Tolerance is an important element to teach your nieces and nephews. To be tolerant of other individuals, despite perceived differences, teaches the absence of judgment and opens the door to real learning. People with Down syndrome are delayed in certain areas. Each person has individual strengths and weaknesses as a result of this extra chromosome. For example, it may take someone with Down syndrome a little longer to complete a task. This is a time to practice tolerance, to use patients and give a person an opportunity to complete the task at their own pace without judgment. Tolerance of everyone’s unique circumstances is also key to our own personal growth.

Respect for others is a crucial element that society is seriously lacking in, not just toward the Down syndrome community, but in general. A great lesson for your nieces and nephews is respect for others: their feelings; ideas; thoughts; and property. Every single person has value and deserves to be respected. For people with Down syndrome, regardless of ability level everyone has something that they can contribute to the world and everyone deserves respect.

Acceptance is important to the development of understanding and for education. You must learn to accept other people for who they are and not expect them to conform to society or your standards. For example, my son, Blake, will learn at his own pace, have his own interests, and be his own person. Accepting him for who he is and what he can do, instead of measuring him against what society thinks he should do, is important. Acceptance has a broad application from accepting someone’s difference in opinion, appearance, or skill levels. Accepting people for who they are, separate from their labels or disability, in this case Down syndrome makes an amazing impact on them, as well as you.

Inclusion is a key element to the growth and development of anyone. We all have the desire to be included in our peer groups and communities and this is something that is universal from the first toy we share to the team we want to join or the group we want to be a part of. It is also true for people with Down syndrome; inclusion in education and community has been proven to benefit children and adults, and enhances their lives and skills: Down-syndrome.org. I can also speak personally to the benefits of full inclusion of my son already and he is only in pre-school. The benefit is not just to the person with Down syndrome, but to their peers as well as teachers and support staff.

Trust is the final element that can indeed be taught in oneself, as well as earned by others. Teaching your nieces/nephews to trust their inner voice and not to be swayed by their peers or outside noise when wanting to make friends with someone with Down syndrome, to learn more, to be a peer helper or friend. Trust in your values and self is an invaluable lesson any Savvy Auntie can teach their nieces and nephews.

The tiny microscopic chromosome associated with Down syndrome has impacted my life dramatically. Our road thus far has been a challenging one, but it also has been absolutely enriching and amazing. Learning more about Down syndrome and educating others dear Savvy Auntie, may open up a whole new world for you too, one that can in turn enhance the lives of your nieces and nephews.

To learn more contact the National Down Syndrome Society www.ndss.org

Lisa Graystone is a Writer and Fashion Entrepreneur, Owner/Stylist of Evolution Vintage (www.evolution-vintage.com) and Evolution Rewind (www.evolutionrewind.com).

Published: October 8, 2014
Photo credit: Lisa Graystone