I interrupt my months of blog-slacking to talk to you about World Down Syndrome Day! We in the Down syndrome community use this day (3/21) to advocate and bring awareness to DS. (This is a special day because DS is caused by 3 copies of the 21st chromosome: 3/21.) The majority of the world is generally uneducated when it comes to Down syndrome, and we hope to use this day (and every other day) to show people that DS is not scary, and people with DS can do anything they set their minds to.
Celebrating WDSD is easy: wear blue and yellow (Down syndrome awareness colors) and/or crazy socks. (We wear colorful, crazy, mismatched socks for a couple of reasons: socks can resemble stained chromosomes in a karyotype, and wearing mismatched socks will draw people’s attention, which gives you a chance to share with them about Down syndrome.) Random acts of kindness are a way to celebrate WDSD as well. Show everyone that being nice to one another is the way we will truly live inclusive lives with people with Down syndrome.
One of my favorite things to educate the general public on is the fact that people with Down syndrome CAN go to college! It’s personally one of the issues that worried me when we first found out our diagnosis. “Will my child be able to create a future for herself?” She most definitely can, and it all starts with great college programs for people with Down syndrome and other disabilities. Some of the programs available are the ACCESS program at Mississippi State University in Starkville, MS, the TigerLIFE program at the University of Memphis in Memphis, TN, the CrossingPoints program at the University of Alabama in Tuscaloosa, AL, and the GOALS program at Columbus State University in Columbus, GA. And there are So. Many. More. It’s so refreshing to see so many colleges get on board with helping our kids reach their full potential. *pictures taken from the colleges’ websites
There are even ways to help pay for college for our kiddos. Ruby’s Rainbow is a nonprofit organization that gives college scholarships to people with Down syndrome. They are currently hosting their “3/21 Pledge” in which they ask you to 1) Donate $21 to Ruby’s Rainbow, 2) Pledge to be kind and considerate of all people, all abilities, and 3) Ask 3 of your friends to do the same. Their goal this year is to raise $150,000, and they can reach it easily with your help. Go here to donate.
Of course, here’s an update on Avalynn. She’s crawling absolutely everywhere, cruising our furniture like a champ, and steadily walking better with a push walker. She doesn’t quite have the arm strength and spatial awareness to push herself into a standing position, and her balance isn’t where it needs to be to start walking, but she’s improving with every week of therapy. I constantly get good reports from her therapists when they bring her back out after her sessions. Sidenote: I used to go back into the sessions with Ava, but then she started this phase where if she wasn’t touching me, she was crying. So I had to stay out of her therapy sessions so she could actually get work done. This turned into her crying every time the therapist came to get her because she knew I wouldn’t be going back with her. Talk about heartbreaking. But now, she goes back with only a quick glance back at me and no crying!
We had several check ups a couple of months ago. Children with Down syndrome are more prone to certain things such as hearing problems, poor vision, and thyroid issues. Because of that, it is recommended that they have periodic checkups to make sure everything is okay. We started with a blood draw for a thyroid check, which came back normal. Then we had an eye appointment with an ophthalmologist to check on her vision. (Anyone else curious how they check a baby’s vision? Because I was.) The doctor dilated her eyes with drops and then held different lenses in front of her eyes while he looked into them. Then he shined a light into her eyes to check if the back of her eyes were healthy. Everything was great, and her eyes were healthy. The doctor said she was just a little farsighted, but he said that was normal for her age. Lastly, we had a visit with the ENT. Her hearing and pressure tests didn’t come back quite right, and they found fluid in her ears. We were given an antibiotic and some nasal spray to try and clear it out, and we had another appointment scheduled for a month later. Unfortunately, the fluid was still there when we went back, so we now have an outpatient surgery scheduled for next week to get tubes put in her ears. I’m told the procedure itself will only last a few minutes, but she does have to be put under with a little gas. Only good things can come from this, and we’re a little excited to see what changes occur as a result.
I invite you all to celebrate World Down Syndrome Day with us on Wednesday. Wear blue and yellow, don your crazy socks, tell people you love someone with Down syndrome. Our goal is to have our children grow up in a world where they are included and celebrated and loved. That starts with you.