Facts....

Parenting a child with Down Syndrome has its challenges.  But many have faulty information about it.  Here are some common misconceptions about Down syndrome and facts you need to set people straight on the realities:

MYTH: Down Syndrome is a rare disorder.  

FACT: Down syndrome is not rare. Approximately 500 babies are born with Down syndrome each year in Canada.   1 in every 800 to 1,000 babies is born with Down syndrome. According to the Canadian Down Syndrome Society there are approx 35000 Canadians with Down Syndrome, and over 5.8 million world wide

MYTH: Most children with Down syndrome are born to older parents.

FACT: Over 80% of babies with Down syndrome are born to women under the age of 35, and the average age of a mother of an infant with Down syndrome is 28 years.

MYTH: Down syndrome is not treatable.

FACT: While there is no cure for Down syndrome, there are many treatments available for the problems associated with Down syndrome.

MYTH: People with Down syndrome have severe mental retardation.

FACT: Most people with Down syndrome have only mild to moderate mental retardation. Individuals with Down syndrome have IQ scores of 30 to 60, but much variation exists. More important than IQ scores is the fact that all individuals with Down syndrome are capable of learning.

MYTH: Children with Down syndrome must be placed in separate special education programs.

FACT: Most children with Down syndrome in Canada are “mainstreamed” into regular schools. They attend regular classes for some subjects and attend special classes for other subjects. Each school system is required to provide the best learning environment possible for all special needs children.

MYTH: People with Down Syndrome will live at home forever.

FACT: A large percentage of adults with Down syndrome live semi-independently in assisted living facilities and group homes. Adults with Down syndrome often hold jobs and have romantic relationships.

MYTH: People with Down syndrome are always happy.

FACT: People with Down syndrome experience a full range of emotions such as sadness, anger and happiness, just like everyone else.

MYTH: Individuals with Down syndrome die young.

FACT: The average life expectancy of an individual with Down syndrome is now 50 years of age.

Many of you might wonder, and so i'll give you an insight, on how to approach/react when your friend or someone you know tells you their new baby has Down Syndrome.  Its very simple.  Heres what you do:

-bring a gift!  your friend just went through 9 months of pregnancy, labour and delivery.  Say "congratulations"  or “Congratulations on the birth of your baby boy/girl!” or “Oh, (s)he’s beautiful!” Then ask to hold the baby (if you can). Just like you would with any other baby. The birth of a child is something to celebrate, and an extra chromosome doesn’t change that. Your friend’s baby is a gift, just as any baby is.

-Having said that, realize your friend might be grieving. All parents have to grieve the loss of the perfect child they thought they were having. With Down syndrome, you know right away that your child isn’t the athletic brain scientist with a model’s body that you thought you were having. But if you accept the baby with joy, it will be easier for your friend too.

-If you have positive experience with Down syndrome (i.e. a cousin or a friend had it, and they did fine/were adorable/whatever), share it.  

-Your friend may be dealing with life-threatening problems (40% of babies with Down syndrome have heart defects, for instance). Here, you might be able to help. Offer to care for other children if they have them. Bring in meals. Visit them at the hospital (and bring food that isn’t cafeteria food). Run errands for them. Ask how the baby is doing.

-Try to get the term correct. It's “Down syndrome,” not “Down’s syndrome” (because it’s named after the guy who identified it, not someone who had it). And it’s a “baby with Down syndrome,” not a “Down’s baby.” I know this sounds really nit-picky, but it’s important. This way, it’s a baby first, who happens to have DS.

-Mostly, your friend just needs to know you love her and that you will love the baby too. She needs to know you aren’t going to run away and hide.  

My story is a little different, but We can relate to most of the above.  Because Lincoln wasnt diagnosed until nearly 1, those who already knew Lincoln knew him for him - not him with a diagnosis.  Telling people once we found out would be a little harder - so I, as a result, decided to start blogging.  Most of the responses we got were positive.  We felt very overwhelmed by all of the uplifting support from family and friends.  Which quickly made us realize that Lincoln was - Lincoln.!!! He still did everything he did before.  He will still have goals for the future, he will still enjoy the zoo, splash pads, have friends, but most importantly, have a family who love him unconditionally.