October. A month that seems to be on a lot of people’s favorites list. A month that brings cooler weather, hayrides, and pumpkin spice. A month that ends in a holiday filled with candy. A month that seems to be a catchall for “awareness.” On just my personal Facebook page, I have seen people advocating for Dwarfism Awareness Month, National Sudden Infant Death Syndrome Awareness Month, and the biggie, Breast Cancer Awareness Month. After a quick Google search, I learned it is also Dyslexia Awareness Month, National Audiology Awareness Month, and Global Diversity Awareness Month, among so many others. For me, October means bringing awareness to what an extra 21st chromosome can mean. Whatever cause is important to you, sing it loud and sing it proud. That is exactly what I’ll be doing this Down Syndrome Awareness Month.
DS Fact #1: People with Down syndrome can have a bright future!
When we walked out of the doctor’s office after receiving Avalynn’s diagnosis, John and I were both in a mild state of shock. We silently got in our vehicle and turned the key. For some reason that year, the air conditioning in the car hadn’t been blowing very cold. We had ridden to the doctor’s earlier with luke warm air blowing in our faces. But as soon as John cranked the car after our visit, the air coming out of the vents was freezing cold. We turned to each other in mild surprise, and my immediate reaction to this was to think, “It’s all gonna be ok.” Why a sudden burst of cold air would bring a small sense of peace, I don’t know, but for that moment, it did.
I remember immediately following that brief respite from the shock, John asked me, “is she always going to have to live with us?” I responded with, “no, I know some adults with Down syndrome who went to live in some type of assisted living home.” My limited knowledge on the situation did nothing to improve our moods. I’m so glad I know now what all people with Down syndrome can do. Avalynn will be able to go to college, have a job, and yes, live independently! If you would like to see some pictures of this in action, head on over to Ruby’s Rainbow on Instagram and Facebook as they show the jobs people with Down syndrome can and have acquired in their October Awareness Campain, #RubyAndNellaGoToWork.
DS Fact #2: People with Down syndrome have developmental delays, but it is not on a spectrum like Autism.
As a parent of a child with Down syndrome, I have learned to take life slow. Immerse myself in the joy that comes from having a child who will stay a baby a little longer than usual. To celebrate the small things. At Avalynn’s two year check up, I had to fill out one of those questionaires that ask things like, “Does your child mimic your actions?” “Does your child use utensils while eating?” and, “Does your child have x amount of words in his/her vocabulary?” Typical milestone questions. With all of the previous questionaires I have filled out on Avalynn’s behalf, I have felt discouraged as I went through the list checking “no.” This go round, however, I was able to mark “yes” to almost every question, and let me tell you, that felt like a victory. Yes, she’s still behind in speech, but her motor skills are on target for the most part, she comprehends most of what is said to her, and she imitates almost everything. I’m sure a lot of parents take those questionaires for granted, but for this mama, checking yes felt GOOD. It’s the little things.
DS Fact #3: People with Down syndrome are more likely to have some type of sleep apnea.
It’s recommended that all children with Down syndrome have a sleep study done by the time they are four years old to check for sleep apnea. While I have never really been concerned about Avalynn’s breathing, we went ahead and scheduled a sleep study at Le Bonheur a few weeks ago. We just got her results back, and, thankfully, she is considered “normal.” The doctor told us a person can have up to five breathing episodes and hour and still be considered normal. Avalynn’s average was 1.2 an hour.
DS Fact #4: “Siblings of kids with Down syndrome are not affected negatively, on the contrary, most siblings report that their relationships is one of the greatest gifts in their lives.”
We will be welcoming Avalynn’s little brother in less than a month, and I have been trying to slowly prepare her for life with a new baby. We’ve gotten new baby dolls, and I’ve showed her how to rock them and burp them and try to just be gentle with them. Of course sometimes she ends up banging the doll’s head on the ground or dragging it around by the foot, but we take what we can get. We also got her a book about being a big sister, which she requests for us to read a few times a week. I know she’s not going to want to share the attention, but she does love babies and always showers them with kisses, so I’m hoping the transition won’t be too hard on her.
As always, don’t be afraid to ask any questions you may have about Down syndrome. No question is a stupid question if you gain knowledge from the answer. Whatever you feel passionate enough about to bring awareness to, this month and every month, shout it from the rooftops. There’s someone out there who needs to hear what you’re shouting. Enjoy your October, friends.