Preston has also really worked hard on enunciation. Deb’s pretty good about understanding what Preston says, and she’ll ask him questions to really work on his communication. He’ll sing a song for her usually; he’s been doing “Who Are the People in your Neighborhood?” (You can watch this Sesame Street classic here.) It’s a perfect song for his communication. Some of the concepts that are hard for kids with Down syndrome are “who, what, when, where, why.” If you listen to this song it’s “who, where, when,” all these different words that you can ask questions about.
Another thing that has worked for Preston is practicing basic reading skills. You can buy card decks with 150 of the first words that kids learn. So now I use them and make up sentences that he can use, like, “What are you doing?” or “What time are we going?” Most sentences are six or seven words that he can use during conversation or in texting.
Preston also has a list of people he Facetimes and texts on a daily basis. These include friends and relatives, but the important thing is that everyone is so willing to be a part of his daily communication. He has really thrived this way during COVID-19.
Q: What kinds of things do you talk about at home?
A: One of the things Preston says a lot is, “What are you talking about?” and “What is going on?” His sister Erin has been home for a month during COVID. At the dinner table, she can be talking about work, and Preston won’t know what we’re talking about, so he’ll ask Erin, “What are you doing tomorrow? What time does your day start?” He has learned questions he can use in his everyday conversations. Yesterday he was telling us who he Facetimed and what they talked about. We went for a walk and he asked questions about a friend who has a niece that’s about 9 months old. He just chattered the whole time. Oh, and the weather! Preston has two different weather apps on his phone and checks them all day long. Not just for local, but for about nine different cities where he has friends and family. He loves talking about the weather in different locations.
Q: So Preston is also reading.
A: When he was in middle school, they tried to get him to sight read, which a lot of the time is how children with Down syndrome learn, and he hated it. They’d give him these little short paragraphs on a black and white page and he’d memorize the whole thing. But two or three years ago, he realized the power of texting, and now he loves texting and reading. He has a lot of people to text: eight or nine friends, his cousins, his sister, the friends we quarantined with. It’s fascinating.
Q: How has Preston adjusted to restrictions from the pandemic?
A: He’s done really well. We went to Suncadia to quarantine, and he just thought we’d gone to Suncadia for a vacation. We did talk about how people were getting the virus and how so many people were sick that the hospitals were full. Preston has been to the hospital a few times, so he understands.
The other day, we went to the mall for a few returns. There was no one at the mall, just a few workers, everyone had a mask on, and Preston got it. I know he misses people, but at the same time he’s content in whatever he’s got going on right now.
Q: Has Preston been able to see his coworkers?
A: Preston has been to the QFC at least three times. That’s where he finds joy, around people, including his coworkers. For his birthday, they gave him a huge balloon bouquet. He felt so loved. Deb has also texted him photos of the QFC staff, which has been great.
Preston has been at the QFC for almost eight years, and that started with Northwest Center. QFC employees are so wonderful to him. Have you ever seen the television show Cheers, how when Norm walked in, they’d all go, “Norm!”? That’s what they do when Preston comes in. It’s so sweet. He misses them a great deal.
Q: What did Preston think about being in the ad campaign a few years ago?
A: A lot of people saw the commercial and people would talk to him about that at church. For me, it was different because people would know his name when we were out in public. It was fun for his sister because she had friends that would say, “I saw Preston’s picture on the bus today!” We had one friend that said, “You can’t take Preston anywhere that someone doesn’t know him.” I think the thing that really surprised him was when we took him to see the billboard: “That’s me!”
We loved having Preston’s picture everywhere. As parents, that’s just pure joy to see such a positive response.
Q: Preston recently had a birthday that he celebrated virtually—what was that like?
A: His 29th birthday, oh my gosh! Balloons from the QFC a couple days before, then the birthday morning started with you guys (Northwest Center’s Employment Services team) at 9 a.m. with the Zoom call. Then he had, all day long, people Facetiming and texting him until 9 that night. His friends, his sister, and all the cousins, aunts and uncles. He opened his presents during a Zoom and was showing everyone what he got. I think it was the best birthday he ever had and he was in quarantine!
Q: What do you want most for Preston’s future?
A: That he stays safe. That he can enjoy his life. It will be the people in his life who can make that happen.
I want him to have community and not be isolated: it’s church, work, his friends, family, texting, and Facetiming. And who knows what the future will bring related to communication?4
As a parent, it used to be that people with Down syndrome did not live past their late twenties. Now they can live to be 65, which would put me about—hm, really old! (Laughs.) I want to do everything I can do for him to keep him involved in his community while I am here, and later.
Preston has just done so well. I couldn’t be prouder of either one of my kids.
Watch Preston at work in this Northwest Center TV commercial.
