I started advocating for Leo on Instagram in order to help break down some walls that surround what Down Syndrome really means. My posts normally involve Leo doing something silly or sweet in order to demonstrate that kids with Down Syndrome and typical kids are more alike than different. That being said, I can’t shy away from some of the challenging aspects that may come with having an extra chromosome. These are the main facts parents are given when they receive a Down Syndrome diagnosis for their kid.
Some of these “facts” are true, but can be misleading and provide no glimpse of hope. Others are completely outdated and just flat out incorrect. So, in today’s post I will be focusing on some information that was given to me when we first received Leo’s prenatal diagnosis and what I wish I knew then. It’s the other side of the story.
1.) Kids with Down Syndrome have a 50% chance of having a congenital heart defect (CHD).
This is a fact that became a truth for Leo. He has Tetralogy of Fallot, which means there are four issues with his heart that needed to be corrected. He had open heart surgery at 3 months to correct these issues. One was a temporary solution, which will require him to have another surgery when he is older. Although that thought is scary to me, it’s incredible how far medicine has come. We are in a much better place than we were 10 or 20 years ago. We are now able to fix many of the heart conditions these kids can have, giving our heart warriors a better fighting chance.
2.) In addition to heart problems, kids with Down Syndrome have a lot of medical problems that will limit the quality of life you can have and make you feel like a slave.
Again, I state that medicine has come a long way. Many of the medical problems that a child with Down Syndrome can have – eyesight, GI, thyroid, and hearing issues – can either be corrected or at least managed in a way that could allow you to live that life you had pictured in your mind, or something very similar. It may take a little more planning and organizing, but it’s doable. In Leo’s three short years, we have been able to take trips, visit the beach, and even take kidless vacations, leaving them at Camp Grandparents.
3.) People with Down Syndrome can’t have relationships and will always live with their parents.
I remember crying once because I thought Leo wouldn’t be able to create his own family just like I have. I couldn’t have been more wrong. While some adults with Down Syndrome need assistance, there are many adults living independently. Even more so, there are people with Down Syndrome who have boyfriends/girlfriends and go on to get married. One of my favorite accounts to follow is @maryanneandtommy. Two adults with Down Syndrome who have been married for over 25 years!
4.) People with Down Syndrome can’t receive a higher education.
Go ahead and follow @rubysrainbow or go to rubysrainbow.org. Check out all of their “Rockin’ Recipients”. You will see a long list of young adults with Down Syndrome and what colleges they are going to. This great cause encourages and assists them in getting a post-secondary education by granting them scholarships.
5.) The mother’s egg is what causes the extra chromosome.
Juan and I joke around, depending on whether Leo is behaving or not, about which one of us is responsible for Leo’s extra chromosome. When he does something cute, we each want to take the credit and when he starts creating some typical-3-year-old mischief, we attribute that extra chromosome to each other. I think we do this because we know that it doesn’t matter who Leo got his extra chromosome from. We know it makes him special, but it does not define who he is or what he will be able to do with his life.
At the end of the day, don’t let the “facts” presented to you along with a diagnosis dictate what your child’s life will look like. No one knows what kids and adults with Down Syndrome are capable of until we help them thrive and live the life they deserve.
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