Are They a ‘They’
“There are so many aspects to embrace.Aren’t they gifts from God? I love Down Syndrome kids, they’re as gentle as lambs.I heard that they are always affectionate and happy.do you mean to say that what I’ve always thought is not the case.They have a range of emotions?They all have strengths and weaknesses?Ok, but at least she’ll always be dependent on you.She will never live independently, have a job or marry.Oh my, I’ve been proven wrong.It’s true, that one is charming, is a model lives with her boyfriend across town.Oh so, they are not ‘they’s’. Each person may have an extra chromosome, but they are all individuals.”___________________________________________________________________Fear of the unknown makes me feel
Like having to sigh.Sometimes it seems like my deep breath in will suck all the air out around me.When someone makes an ignorant statement, I often find my fists balling up and my eyes growing wide.Listen to what is too often said. I hear ignorance and fear.I taste the bitterness from some tongues to alienation in other ears.
I had no idea how massive the Down syndrome community was until a few months after AJ was born.
Community, by the way, is absolutely the perfect word for it. There are so many support groups and Facebook pages. There are local and national organizations. There are even conferences where you’re able to learn from other parents and professionals, both on stage and in networking.
The community is incredibly supportive. We all have very different stories. Our kids have different health issues and different strengths. But Down syndrome parents truly seem to be a bit of a unique breed who consider anyone impacted by Down syndrome as family and love their children fiercely, sometimes even as if they were their own.
The people we have met through AJ and the Down syndrome community are nothing short of amazing, and we are thankful to have them in our lives.
If you have a child with Down syndrome, I strongly urge you to get to know other families in the area, the advice of “been-there-done-that” parents is some of the best advise you can get. (In Eastern Iowa - try Hawkeye Area Down Syndrome Association).
It’s how we learned where to buy socks and shoes that fit AJs AFO/SMOs.
iIt’s where we learned about the baby signing time app.
It’s how we learned about low tone resulting in our kids often having their tongues out and exercises we can do to combat it.
It’s one of the few places and groups we know we can turn to for any type of issue - health, behavioral, and there will likely always be someone who can step up and say “I hear you, I know it’s hard, keep on fighting.” And sometimes, hearing that from someone who has walked the road before you is the absolute best thing in the world.
Friday night I was at the YMCA with my daughters. While my girls swam, I was chatting with a staff member who is also a high school student. She is kind and bright and she shared with me about her experiences at the county tech school. Some of her schoolwork is alongside people with disabilities who are also learning trade and job skills. She then shared how many of her friends at the tech school take the students with disabilities to the homecoming dances and proms “so they can be normal.”
This nice young woman telling me about the sweet tradition of taking their classmates with disabilities to dances has been taught that Down syndrome and other disabilities is not normal. As a mom, that hurts a little but I understand. In the 80's, I was taught that lesson too when I saw the students with disabilities more or less sequestered to a classroom in the basement of our middle school.
But Down syndrome IS normal. It’s as normal as that tree over there, as the waves of the sea, and the birds migrating south this time of year. We didn’t scientifically create Down syndrome. It’s not like a Labradoodle. Down syndrome and other disabilities happen!
I read a friend’s Facebook post yesterday about her daughter with Down syndrome on a playground. Another child invited her to play. They are both at an age where they don’t know what Down syndrome is versus any other human condition. The child waited patiently and helped my friend’s daughter along when she needed it. They just played and had a delightful time. THAT’S normal.
What’s not normal is a society than ignores the needs of its less fortunate members and systematically oppresses them to further their own selfish desires. Luckily for my family, it’s 2019 and things are getting better all the time. I like to say it as if I was selling used cars on a three day weekend “Down syndrome! DOWN SYNDROME! D O W N S Y N D R O M E ! ! ! There’s never been a better time to have Down syndrome, and if you stop by today, we’ll throw in an extra disability for FREE!”
Inclusion in our schools and workplaces is improving every year, and medical and mental health treatment has advanced tremendously in the past couple decades, but we still have big-hearted and intelligent teens thinking of Down syndrome as something outside of average. This is exactly why we need Down Syndrome Awareness Month.
This fact makes me incredibly angry. When we were first discussing AJ’s diagnosis, so many people would ask us why he couldn’t “just do a heart transplant”
And the short answer was - because Iowa isn’t one of the few states that protect against this kind of discrimination.
In fact - the only states that do are listed below:
California (AB 2861) (1996)
New Jersey (SB1456) (2013)
Maryland (SB 792) (2015)
Massachusetts (Chapter 328) (2016)
Oregon (HB 2839) (2017)
Delaware (HB 21) (2017)
Kansas (HB 2343) (2018)
Ohio (HB 332) (2018)
Pennsylvania (Act 90) (2018)
Washington (HB 5405) (2019)
Louisiana (HB 143) (2019)
Indiana (SB 112) (2019)
Notice something a out those? Most of those states only adopted those protections in the last few years. At the time AJ was born, there were only three states on this list.
Now - I’m AJs case there’s would have likely been other contributing factors, like his pulmonary hypertension, but the fact is that nobody even looked that far. Once he had the official trisomy 21 diagnosis, our options for treatment, or at least the manner in which people talked to us about our options, shifted.
There is definitely work left to do in this area. I don’t believe that a persons diagnosis of Down syndrome alone makes them less worthy of receiving care or support than anyone else, and will continue to push for better protection from discrimination and awareness.
This is something that I didn’t realize until recently when I friend of mine posted THE cutest video of her 20 month old identifying words on index cards - mom, dad, anna, yes, no, ball and baby. Crazy!
My understanding is that it ties directly with visual learning. And again this is still an individual trait, but there are studies that show its a more prevalent skill in children with Down syndrome.
I know sight words are a thing. Averie had sight words in her early education too, but since AJ knows his letter sounds we had been focusing on sounding words out instead of memorizing them. Hoping that even though he can’t make the letter sounds himself (yet!), that he could still “hear” them in his head.
Guess who is going to get some index cards with simple words on them this week?
If you look at AJ standing next to other four year olds, he is on the shorter side. In fact, if you look at where he is on the growth curve from the CDC, he is at the 3rd percentile for height (2’11”), and off the bottom of the chart for weight (30 lbs).
On the Down syndrome version of the chart though, he’s hanging out right in the middle, around the 50th percentile for both height and weight.
For the most part, I don’t personally notice the difference in size, because I don’t often see him around other kids his age. However, when I see others with kids the same age, or I go into AJs classroom at school, the size difference is pretty obvious.
Last year, AJ started preschool as he turned 3 years old and attended the 4 year old class. I remember going in on the first day of school to talk to the kids about AJ’s trach and gtube and realizing just how small he looked in comparison. I attributed it to him being a year younger than the other kids.
This year, he still looked small as a 4 year old amongst other 4 year olds. Though he seemed closer in size than the year prior. Both years the kids in his class have had to learn that he’s not “baby AJ.” We are incredibly thankful that we have a team at the school that make sure that AJ is recognized and treated as a peer and included in activities.