Down Syndrome Awarenss: People First Language

Sam was not the first person in my life with Down syndrome. Before our little man arrived, I worked with a young woman with Down syndrome at a local high school. I will never forget the first day I walked into the classroom. Her face brightened as she exclaimed, “I’m so happy to see you again!” I had never met her before, but her genuine happiness in seeing me absolutely made my day. She asked me to sit and help her with her work, which that day was adding up dimes and quarters on a worksheet. I worked with her for one semester. This was after we had moved back to Duluth and Ella was a year old. I decided to take an online class through the university to expand my knowledge of teaching special education classes since it was something I felt I had lacked while teaching before Ella was born. During that semester, I needed to write a paper on a specific area of special needs. I chose Down syndrome. It wasn’t until Sam was about 6 months old that I remembered the assignment. Amazing how a thing in our past can become something much more than we ever could have imagined.

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While working with this beautiful, energetic young woman, I was quite aware that I didn’t know the appropriate way to talk about her diagnosis. We may have gone over suitable titles for special needs and disabilities at some point in my class, but I just couldn’t remember. It felt like the politically correct terms were always changing, anyway, and I was afraid of offending someone by using the wrong terminology. (Even while writing this, I know I’m using terms that will likely be on the ‘do not use’ list soon!)

Even after the last two years, I still get a little nervous about saying the wrong thing, but there is one basic concept that has helped tremendously. People First Language is the idea that, no matter the circumstances or diagnosis, a person is a person first. The other stuff comes later. Thinking of it that way makes it easier to remember the appropriate way to talk about a person with a disability. For example, if we’re talking about Sam, it would be appropriate to say, “The boy who has Down syndrome” rather than “The Down syndrome boy.” That would be opposed to something I’ve heard a lot, “a Down’s baby.” For example, “My neighbor has a Down’s baby.” It’s quite different to say, “My neighbor has a baby who has Down syndrome.” The reason is that we’re focusing on the baby, not the diagnosis.

As the mama of an incredible little boy who does happen to have a unique diagnosis, I want people to focus first on who he is as a person. After all, he is far more like other toddlers than he is different. And I know that when people spend time with Sam, they don’t walk away thinking about his diagnosis. They remember Sam, a bright, blue-eyed boy.

People First Language is the same with practically any diagnosis. For example:
My sister works with boys who have Autism. // Not: My sister works with Autistic boys.
Matthew has an intellectual disability. // Not: Matthew is mentally disabled.

I was surprised with how many medical professionals did not address Sam using People First Language when he was born, which was perhaps the first time I recognized that there must be some other way to address these terms. I remember hearing “He’s a Down’s baby” or similar variations. I know they didn’t mean it in a bad way, but I can tell you that the words hurt my heart. I want people to see Sam for being Sam. He is smart and full of joy and has a fantastic sense of humor.

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One other thing that is somewhat on this same topic. Until Sam was born, I thought it was okay to shorten Down syndrome to Downs. I quickly realized, however, that very, very few people within the Down syndrome community use only the word Downs. For me it feels far more respectful to use the entire term.

The main thing to keep in mind is that, even if you don’t happen to use the perfect terminology, it really comes down to your intent. Did you use a phrase that may not be overly accepted while talking to the mom of a child with Down syndrome at the playground? It’s okay! It’s kind of like being in a different country and trying to speak the language because it feels polite. I would much rather have someone ask me about Sam than shy away because they don’t know the proper terms.

If you do have any questions about People First Language or about Down syndrome, feel free to post them in the comment section or on Facebook. I’ll do my best to answer each one!

 

 


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Sammy’s Superheroes Returns!

Did you know October is Down Syndrome Awareness Month? It’s true! There are multiple other groups advocating for awareness this month, too, like breast cancer and dwarfism. We’re focusing primarily on Down syndrome, of course, in celebration of our sweet Samuel. To spread awareness this week, I’m sharing a few photos from our very recent trip to St Paul for the annual Step Up for Down Syndrome Walk put on by the Down Syndrome Association of Minnesota. In years past, the walk has also been held in Duluth, but this year it was not, so we happily made the trek down to join thousands of others to celebrate the awesomeness of Down syndrome. It was fun to see friends from the Twin Cities area and participate in such a huge event. There were over 8,000 people!

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This little man means the world to me, so it was very special for me to spend my birthday celebrating him. Before he came into my life, I had a pretty clear picture of what things would look like. I’m a planner, after all, so I was sure everything would go pretty much as I had imagined. A few kids, move to Kenya, teach, send my kids off to college, and so on. I suppose a lot of us imagine life like that. Maybe not the Kenya part, but you get it. Sam shook my understanding of who is really in control of that path. He reminds me to take life little by little, trusting that God is in control and that God has good plans for us.

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Instead of sporting our traditional superhero costumes this year, we went the more predictable route and ordered team shirts. I wasn’t exactly sure what to expect for the St Paul walk, but I did know that most teams do shirts. If we head down for the walk again next year, we’ll know exactly what to expect. And we just may return to our eye-catching costumes.

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We didn’t have a tent with us, as many of the other teams did, but we managed to find a fairly cozy spot under the trees and soaked in time with our friends. Hannah & Luke were able to make it down from Duluth, which made Ella & Sam giddy. Hannah is our weekly date night babysitter and has even spent a couple weekends with the kids when we’ve needed to be out of town. They absolutely adore her! Hannah has been to the walk many times. Her cousin, Jonah, has Down syndrome and just started his first year of high school!

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Big Sister was thrilled to have our friends’ kids to play with while all the boring adults sat for lunch. (Seriously, she called us boring. It’s her new word. Everything is boring unless it involves running, gluing, or eating something sweet. I guess I can’t blame her!)

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Sam’s buddy, Cody, joined us for bit. Aren’t they adorable together?! Cody also lives in Duluth. We have pictures of the boys together last year, both dressed as superheroes.

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After playing and eating, it was time to walk! Sam told us he was ready to go! (He really did! It’s his new word!) PS How adorable are his shoes?! My friend Lexie made them for our little man. They are his favorite shoes, which is good, since I’m also in love with them.

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A marching band led the group, which went on and on and on. We jumped in at the end. It was way too much fun just watching all the people!

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We walked and played a bit more and gave big hugs to our friends before everyone left the park. We’re so thankful to have such amazing support for our little guy and Sammy’s Superheroes!

From the park, we headed to the Mall of America. I knew it would be packed on a Sunday afternoon, but I couldn’t resist the idea of spending the afternoon of my birthday at Nickelodeon Universe, the indoor amusement park at the mall. (Though, for those of us who have been going to MOA since it first opened in 1992, it will forever be known as Camp Snoopy, the name of the park for its first 10 years.) We hit it big time with our first ride…the escalators. Haha. It’s kind of true. Ella and I rode them up and down while Pete and our friends were in a kitchen store. This is not a new activity for me. My mom loves them just as much as Ella! Oh, I’m sorry. Did I say Ella? I meant Princess Anna, of course.

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I was fully prepared to take Ella on her first ride at the mall, but I guess I didn’t think she’d be ready to move up the fear scale so quickly. After a very quiet, smooth Blue’s Clues ride, she spotted this beast. Ella is tall for her age, so she was given the okay to ride.

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My mama heart was freaking out at this point. She didn’t scream or cry, but I could see she was worried. The ride lifts kids way up in the air (much higher than she is in this photo) and then drops them nearly to the floor. She looked so little next to the big kids!

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Pete had a thought the ride might scare her from any big rides in her future, but that was far from the case. She immediately asked to ride again as soon as it was over. Instead, we headed to the carousel. Safe for everyone, including Sam! He loved the music and the up and down of the horse. He pressed his cheek against the bar and giggled the entire ride. I wish I had a close-up video! We do have this photo, but please excuse my silly expression. Focus on the cute little boy.

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While we were in line, Ella stated she knew which animal she would ride. Was there any question? The horse with the roses, of course. Princess Anna looked perfectly royal atop her gallant steed.

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One moment, please. This donut…is…delicious!

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While Sammy enjoyed his mini donuts, Pete, Beth, and Brian took Ella on the log chute. They got soaked! Ella was in heaven.

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What a time we had at the park! Shortly before leaving, we each had an ice cream cone with sprinkles and made our way to Caribou so I could pick up my free birthday drink. While I was ordering, Ella sat down on the floor next to Daddy. By the time I had my drink in hand, she had fallen fast asleep.

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A beautiful little princess after a very exciting day.

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Daddy carried her to the car and off we drove toward Duluth. In all regards, it was a beautifully perfect birthday.

 


 

Photo Friday is a little glimpse at our week in pictures. To see more, follow TheMangoMemoirs on Instagram!

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We’ve moved!

We made it! We’re in! And can I please say that we could not be more thrilled to be here?! On September 24, less than 12 hours after I flew back in to Duluth, we closed on our condo on the water and by noon that day, we were moving our things in. We are now nearly settled. It doesn’t take long with only a small U Haul. Pete and I did the unloading and we took the next week to get everything put in place. A lot of it was done while Pete was working at night and the kids were sleeping. The time was a bit magical, playing music and finding a home for each item. Now we’re working on getting a few pictures hung and are considering buying a few small art pieces for the mantle. But that’s about it!

How about some photos? I thought I had more than these, so I’ll have to work on capturing a few more!

Here is a view of the living room into the kitchen and dining room. The condo was furnished with everything but that when we moved in. Isn’t it beautiful? We are so very grateful for the opportunity to live here!

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a view of the living room

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soak it in, buddy

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Sammy baby is getting used to the new place

We have two bedrooms and two bathrooms here, so the kids will continue to share a room. They adore sharing. When Sam is ready, we’ll get a bunk bed, probably one with a queen or double on the bottom, so that any future additional babies can join the party when we’re on visits back from Kenya.

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the kids’ room

We also have a large, beautiful deck overlooking the lake. We’ve sat out on warm afternoons and are looking forward to many, many more days doing the same.

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the deck

This is the view from the deck toward the canal. We have numerous ships pass each day. The warmer days right after our move surprised me with all the traffic on the water. Lots of fishing boats and smaller pleasure craft, as well as sea planes and small planes that land out on Park Point. Just behind us is the North Shore Scenic Railroad, so we occasionally see small trains pass, the same train we took on our wedding day! The grassy area in the photo is all a part of the condo association and the adjoining hotel, so the kids will be able to run up and down the shore and we can climb the rocks down to the water. Two nights ago, we made s’mores at a small fire pit in front of the hotel that we have access to as condo owners. It really is such a treat to live here!

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I surely can’t forget to mention that we also have access to the hotel pool, hot tub, and sauna. We moved in while Ella was at school and, within 30 minutes of her arrival after school that same day, she was in the water. Both of the kids love to swim, so this is one of our very favorite features here. Daddy, a professional Dive Master from before we met, gladly gave Ella her first snorkel lesson.

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one fish!

 

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two fish!

Today marks two weeks in our new home. We are soaking in our beginning days here. I’ll have more photos up soon of the rest of the place as well as photos from our recent Step Up for Down Syndrome Walk in St Paul!


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Holding On

I sit on the balcony of my rented studio aparment overlooking the Atlantic Ocean, listening to the sound of the waves crashing on the fine sand, feeling the sightly cool breeze through my thin sweater. I’m taking the opportunity to breath deeply, to soak in the near-silence, and to rest my racing mind. When I dreamed of this momentary getaway months ago, I couldn’t have known how much I would need it after weeks of uncertainty in the confines of a small hotel room. I’m glad I didn’t know about it then. It is months like these that I know I am growing. I am remembering how to trust when I can’t see what’s next. I am remembering what it feels like to trade my anxiety for the peace of Jesus. I know this time of uncertainty will soon be over, but I need to remember how it feels to ask in nearly every moment for God to guide my simple, daily steps.

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My quietness on the blog over the last month was brought about by a whole lot of unexpected change in a short period of time. When we sent Ella to the Montessori school for her first day of kindergarten, we were also packing for our move, planned just four days later. However, two days before the closing of our new home, we were told problems would be pushing the move to a later date. We had been pulled into the ugliness of bank fraud when our account was used multiple times in a small Midwest city. The account was quickly closed and we changed to another bank closer to home. It was a week of frustration and paperwork as we reset everything with the bank and worked on a police case into the unusual activity around the fraud. I was incredibly thankful to have Pete’s help in so much of it, as I tend to get anxious with financial issues. There are so many details that I simply don’t understand yet.

After we set our first closing date, we arranged a time for the estate sale company to begin setting up for our sale. In the first two hours, I realized we couldn’t possibly stay in the house while the sale was being prepared. Dishes and toys and clothes were everywhere as the sweet ladies with the company began pricing every single item we owned. Our beds were covered with dolls and games and there was no access to the kitchen without stepping over stacks of pots and piles of tea towels. Being in the house was stifling. I I couldn’t imagine trying to keep little hands from digging through organized boxes and pulling stacks of books off shelves. Before Ella finished that day of school, I had us checked into a hotel with a view of the harbor, promising a bit of calm during our stay of uknown length. The littles were thrilled to have a pool and a TV. I was happy to have a clear place to sleep and hot breakfast in the morning. It was a nice, unplanned escape.
We made the abolute best out of our hotel stay those first few days, but Sam was terribly sick. Our sweet boy was waking every two hours in the night, fighting a cold that was as bad as I’ve seen in him. Pete had left on Tuesday night to teach and called with news on Wednesday. He was feeling as terrible as Sammy and, after being checked by another ER doc, he discovered it was strep. While I was thankful we would have a way to fight the sickness, it was disheartening having us all in one small room while we recovered. Fortunately, I only had a hint of the yuckiness, so I was able to care for my three.
Unfortunately, it was at that same time we discovered we would need to change mortgage companies in order to close and move in to our new home. That meant going through lots of paperwork again and tracking down more information. Our banker was incredibly helpful and so very sweet. She helped us get things in order quickly and set a new closing date. As of the moment, we are set to close Wednesday morning, less than 12 hours after I fly back into Duluth! We are all ready to end our 2 1/2 week stay at the hotel. Though it’s very cozy, we are ready to settle into our new home.

For now, I will soak in one more day on the beach before heading home. I arrived in Virginia Beach on Thursday to attend an incredible conference and, as I mentioned earlier, I arranged months ago to stay two extra nights alone. After scrambling last night to find childcare for today after a friend’s family emergency, I have been able to rest. I have been writing, reading, napping, drinking coffee, and exploring the boardwalk. This entire time away has been wonderful as I prepare my heart for the next season of our adventure.

 

 

 

 


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