When it comes to explaining her son’s Down syndrome to the general public, Wendy Tobiasz’s approach is refreshingly simple and downright honest: Joshua is “more alike than different,” she says.
“A child with Down syndrome is much more like you than different from you,’’ the Wilmington Islander said of her son, a first-grader at May Howard Elementary. “They love their family and friends and want to be loved back. They have things they are great at and things that are hard. They are funny, silly, energetic, naughty and sweet. They get their feelings hurt. They are proud when they accomplish something good. They get into trouble. They want to fall in love, have a job and live independently — and the list goes on and on.”
Which is why it makes so much sense that children with Down syndrome are in mainstream classrooms and playing mainstream sports. Many adults with the condition have jobs and live independently.
“If you feel it, struggle with it or want it, then someone with Down syndrome does, too,” Tobiasz said.
A photo of Joshua, 7, smiling in his karate uniform was among 200 chosen from 1,000 worldwide to appear in the New York City Buddy Walk Times Square video presentation this year. The video presentation will be followed by the NYC Buddy Walk.
The goals of the Buddy Walks — held in 250 cities nationwide in October, including Savannah — are to promote acceptance and inclusion of people with Down syndrome and to positively influence local and national policy and practice.
Despite huge efforts for public education about Down syndrome, Tobiasz said, unfortunately many antiquated stereotypes persist — including that children with DS can’t learn or “do” what typical kids do.
Her son and other children with DS daily shatter those stereotypes.
Joshua’s knack for sports — mainstream karate, basketball, T-ball, soccer — particularly helps to extinguish any misconceptions.
“People with DS are life-long learners,” Tobiasz said. “They may need adjustments in their learning style or to progress at a slower pace, but they can learn and ‘do’ just about anything.”
What parents need to know
In anticipation of the Seventh Annual Lowcountry Down Syndrome Society Buddy Walk Festival in Forsyth Park on Oct. 6, local parents of children with Down syndrome shared what they say parents of a child newly diagnosed with the condition need to know.
“First and foremost, they should be congratulated on their new gorgeous baby,’’ Tobiasz said. “Then they should simply love and care for him or her as any baby needs. The path they find themselves on isn’t the path they expected, but it is a beautiful and magical path. The emotions are overwhelming in the beginning, but rest assured that they will love their baby fiercely.”
Joe Marchese, a well-known local advocate for Down syndrome awareness, treasurer of the Lowcountry Down Syndrome Society and the father of three girls including Ella, who has DS, shared the following tips for parents:
1. Start speech therapy at 3 months old. “I know that they cannot speak, but the muscles needed for speech in the mouth and tongue need to be developed.” Always use a sippy cup with small round spouts.
2. Encourage swinging and spinning during play time. The sensory movements develop connections in the brain.
3. Communicate appropriate stages of development. For example, tell her grandmother that Ella will not walk until she is 3. Then when she walks at 2, it is a great success.
4. Teach your child sign language. Knowing where it hurts is a great help in making it better.
5. Find a doctor who loves all children.
6. Watch Aimee Mullins’ “The Opportunity of Adversity” on TED.com.
7. Stand firm on inclusion.
8. Remember that your child is perfectly made.
And I have to add: Join the Lowcountry Down Syndrome Society, because this group’s enthusiastic, informative and positive families are certain to be a huge support. Contact the Lowcountry Down Syndrome Society at ldssga.org or email firstname.lastname@example.org