Recap – October 2019 Down syndrome Awareness Month Part II

Continued – I committed to posting a story, fact, or support note on Facebook each day during October 2019 in honor of Down syndrome Awareness Month. I’d like each post to live in one place, so here they are for ease of reference.

October 16 – Down syndrome Awareness Month day 16 When I say Jay enjoys books, I mean it. Research shows that reading books helps foster language development. And by that, I’m not just talking about verbal spoken words, but the recognition of the meaning of a word as an action, feeling, or descriptor. Books encourage creativity, thinking, memory skills, empathy, and so many other life lessons. I so cherish the moments recently where Jay selects a book from the pile, carries it over to me and climbs into the seat of my lap to read to him. And bonus, he always seems to search for and spot the smallest image and point it out. Like the mouse and banana in Goodnight Gorilla or the little mouse on each page in Goodnight Moon. Jay notices the small things, and it’s a reminder for me to notice those things in life, too. 

October 17 – Down syndrome Awareness Month day 17! Contrary to what a lot of people notice about Jameson when they meet him, he’s not always happy. In fact, he has a wide range of emotions just like you and I. And, he’s starting to test limits and get vocal when things don’t go his way. He’s loving to his core and generally up for a hug after he’s had time to observe. But don’t let his adorable mug trick you into thinking he’s always happy … he’s human and with that reality comes the good and the bad/sad moments inevitable to this thing we call life.

October 18 – Down syndrome Awareness Month Day 18. “You are you and I am me, just exactly how life is meant to be!” -KSH For today (and every other tomorrow): Enough. Worthy. Whole.

October 19 – It’s Day 19 of Down syndrome Awareness Month! Words have meaning. What we say matters. How we say something matters. You may know where I’m going with this … the R word. When I hear it used today in movies, in conversations, in comments online, it takes my breath away and I feel repulsion and anger. Now I have a story to tell. I was a user of this word in my youth. I didn’t think anything of it. I heard it and I used it, too. But one afternoon, my family and I went to watch the Lion’s football game at a friends. In this family, at the time, all I knew was that one of the siblings was a little different than me. I was sitting around a large oak table in the dining room surrounded by about five other people. We were chatting, about what I honestly don’t remember. But I do remember my 14-year-old self nonchalantly saying something and then following it with the “isn’t that R…?” I was met by a short silence, maybe only a few seconds. As I looked around the room, everyone was looking intently at me. After a beat, the conversation continued. But in that moment, I felt shame and regret. I was embarrassed using that word in that way with those people. See there, “those people…” Fast forward to 2017 and giving birth to a healthy, beautiful baby boy who has Down syndrome. There is no them and us. There’s no “those poeple.” There’s human. There’s value. There’s worth. There’s no place for the R word.

October 20 – Day 20 of Down syndrome Awareness Month! “I’m sorry” are two words no expectant mom or dad wants to hear. And they shouldn’t ever hear, “I’m sorry” followed by “your child has Down syndrome”. Saying “I’m sorry” assumes a child will amount to nothing or very little. It places them in an “other” box. What do you say? “Congratulations!” “What a blessing!” “How wonderful!” -Some of the above ideas come from the book Scoot Over and Make Some Room by Heather Avis. This is a good read for any parent and shouter if worth.

October 21 – Down syndrome Awareness Month day 21! People talk about certain characteristics or features in individuals who have Down syndrome; Including a single line along each palm or slightly almond-shaped eyes. Jameson has a wispy yet thick head of hair.Regardless of the way science describes the characteristics of people with Down syndrome (outdated textbooks still use the “R” word…see Day 19 post) each individual is unique. And, many look more like their birth parents than not.

October 22 – Down syndrome Awareness Month day 22! “Low muscle tone” is a statement used often when we talk about children who have Down syndrome. It took much work and time for Jameson to be able to hold his head up all by himself, it took much work and time for Jameson to be able to sit up by himself, it took much work and time for Jameson to be able to stand by himself, to crawl, to walk, to say “momma, dadda, buh-bye”. Side note: Although Jameson’s neck muscles needed extra attention as an infant, he was able to latch and nurse. I count myself lucky to have been able to breastfeed Jameson throughout his first year of life. It wasn’t always easy, in fact, it was really hard and frustrating at times trying to situate our bodies in a way that worked for both of us, but it was a blessing to be able to provide in that way for him. If I would have needed to, I’d have gone the pump and bottle route, or even the formula route. Breastfeeding worked for us. But it’s important to remember that it doesn’t always work well and that it is OK to choose a different option. Infants need to eat, sleep, and potty, but most importantly they need love. OK, back to learning skills … Fine motor, gross motor skills, and oral motor skills take work and time! The key here is TIME. In time, Jameson accomplishes the things that you or I probably take for granted. In TIME and with hard work, support, and encouragement, Jameson meets and often exceeds expectations. On Jameson’s time, and at his own pace, he can achieve anything.

October 23 – Day 23 of Down syndrome Awareness Month! The dictionary definition of a disability is a physical or mental condition that limits a person’s movements, senses, or activities; it is considered a disadvantage or handicap. However, more and more, the term disability is referred to instead as “differently abled” or “exceptional people”. Which of the above definitions evokes a more positive message about people living in a different situation from your own? The later, right? Wouldn’t an even more positive definition simply be “able” … though we are different, we are able. Jameson is able!

Day 23 of Down syndrome Awareness Month take 2! I just realized I already shared the post content I posted earlier today. It’s important! … but also, I forgot I already shared it.Here’s something new About 5,300 babies are born with Trisomy 21 (Down syndrome) in the United States every year, or 1 in every 792 births. I didn’t realize how large this community was until we became apart of it. Now that we have Jameson, it is important to me that we help the world to really “see” him for who he is:

-A person of value.
-A person with great gifts to give.
-A person to say “hello” to at the store, rather than glance and look away.
-A person to invite to play dates.
-A person to groove to an impromptu dance party with.
-A person to learn a few basic sign language signs for so we can all communicate together.
-A person to include.

October 24 – It’s Down syndrome Awareness Month day 24! A single palmer crease in the hands is a line that runs across the palm of the hand. It’s a possible physical trait and only 45% of individuals who have Down syndrome have it. Jameson is in the group. Scientifically, it’s the result of hypotonia, where his hands were held tight in a fist while he was growing in my womb. Interestingly, a single palmer crease appears in about 1 out of 30 people and males are twice as likely as females to have this condition.

October 25 – Down syndrome Awareness Month day 25! Having Jameson has helped me be a better person in so many ways. As Anne Lamott said, “writing can give you what having a baby can give you: it can get you to start paying attention, can help you soften, can wake you up.” In my case, Jameson gave me a new reason to write. He inspires me to share stories, to connect, and to provide commentary from my parenting perspective and experience. Although E. L. Doctorow was referring to writing a novel with this quote, I think it applies to parenting, growing up, and life as a whole: …”[it’s] like driving a car at night. You can only see as far as your headlights, but you can make the whole trip that way.” We can only really ever know what is right in front of us, in the moment. Jameson helps me to see that. I have times where I imagine the future and I feel lost and sad because of all of the unknowns, but really, no one knows what will be. We’re all just driving along and taking in as much from our surroundings as we can, in the assumption and rightfully so, that we’ll get where we are supposed to go. If I can, if we can, handle life as it is now, we’ll handle whatever comes down the road, too.

October 26 – Down syndrome Awareness Month day 26! Jameson enjoys the same things as any kid. There’s nothing he can’t do! Sometimes an accommodation is needed, but providing opportunity for accommodations as necessary is good for all. Inclusion always, not just when it’s convenient. We as a community need to work together to keep an eye out for opportunities to make sure every child (every person!) is involved and knows they are seen, heard, and valued. “We need one another to love to listen and care!” -KSH, I Am Me

October 27 – It’s day 27 of Down syndrome Awareness Month! A strong, caring, and welcoming community is ideal for a child to flourish. Safe places to explore, to learn, and to have new experiences take some of the “work” out of the everyday skill building necessary for little ones who have a little Extra. Some of the best days with Jameson are those where I get to see him try something for the first time. Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to lead fulfilling and productive lives. (https://www.ndss.org/about-down-syndro…/down-syndrome-facts/)

October 28 – Down syndrome Awareness Month day 28! People who have Down syndrome have jobs, love significant partners, write books, drive cars, own companies, volunteer, and do all the things a contributing member of society does! “Children [and adults!] are like popcorn … popcorn is prepared in the same pot, in the same heat, in the same oil, and yet, the kernels don’t all pop at the same time. … The ultimate success is when we work together to allow each to be their own person, to grow and learn at their own pace.”

October 29 – Down syndrome Awareness Month day 29! One of the best things about having a child is being able to see the world through their eyes. The same holds true for all kids. There is so much learning and growth happening in the first moments of life, in those beginning years and right on through. There’s a lot to look forward to. I know I would be a different me if it weren’t for Jameson. He makes me better. Even when we are true advocates for a cause, when we see value in all human life, when we work together to provide opportunity and support, we likely unintentionally fall back into the rhythms we grew up with. We must be active in our advocacy and by that I mean we need to be aware of our own faults and bias. But simply being aware isn’t enough. With awareness comes the responsibility to do the hard work to train ourselves, our minds and our actions, so that we are able to fully immerse ourselves in new rhythms.

October 30 – It’s day 30 of Down syndrome Awareness Month! Down syndrome occurs in people of all races and economic levels. The cause of the extra full or partial chromosome is still unknown. “In every cell in the human body there is a nucleus, where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents’ activities before or during pregnancy. Reminder, Down syndrome is a condition or a syndrome, not a disease. People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it. You can’t “catch it” or “grow into it or out of it”. For more information visit https://www.ndss.org/about-down-syndrome/down-syndrome/

October 31 – Day 31 – Down syndrome Awareness Month! The month may be over, but that doesn’t mean we stop sharing stories and educating ourselves and each other about Down syndrome. Here’s a little recap:
1. For me Down syndrome is Love and Pure Potential.
2. Name the person before the descriptor. It is better to say, “Jay has Down syndrome” or “man with a visual impairment.” NOT “Jay’s Downs” or “Down syndrome boy”
3. There is no them and us. There’s no “those poeple.” There’s human. There’s value. There’s worth.
4. Every child (every person) is who they are meant to be, period.
5. Jay encourages me with his actions and his words (signing, action, or verbal) to give him the grace and the opportunity to respond in his own way, at his own pace; when Jameson is ready.
6. We celebrate the little and the big milestones. Each takes hard work and a whole lot of patience.
7. Instead of the term disability instead use “differently abled” or “exceptional people”.
8. Jay is human and with that reality comes the good and the bad/sad moments inevitable to this thing we call life…no one is happy all the time.
9. Inclusion always, not just when it’s convenient.

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