In “Faces of New Canaan,” we seek to document—through photos and a Q&A—the stories of people here whom we identify strongly with our town. These aren’t people who are prominent because they’re famous or hold elected office (though they might)—yet they help form the fabric of New Canaan in a way that, say, if you go away for a while and then return to town, you know you’re home when you see them.
Until this installment, we’ve run the Q&A by speaking directly to the subjects of the interview. That really wasn’t possible with 8-year-old Andrew Blackwell of Locust Avenue. Born with Down syndrome, Andrew at a young age—possibly as the result of a respiratory virus and pneumonia at age 18 months—developed a motor speech disorder that hinders his ability to communicate.
I was introduced to the Blackwell family through a mutual friend, and after speaking on the phone with his mom, Rhonda, we decided to meet up—Andrew, Rhonda, dad Houston, dog Maggie and myself—for the “Faces” feature.
I did get some background on Andrew from that phone call but we revisited all of it in the interview transcribed below (we met up on Saturday just outside Fjord Fisheries on East Avenue, formerly The Best Würst space).
I’ll just quote part of what Rhonda Blackwell told me on the phone. Asked to describe how important the support community in New Canaan has been to her family, she answered: “Absolutely amazing people, and I am just so thankful for the people that we found and that surround us. They are our village. They get it and understand it. People need Andrew. They will do anything for Andrew.”
Many thanks to the entire Blackwell family for your time and openness. The last thing to say by way of setting the scene is that during our interview, Andrew—who spent most of it piggy-backed on dad—twice fist-bumped me, and Maggie, the family’s leashed, 2-year-old dog at least once lurched toward passing East Avenue pedestrians.
Here’s our conversation.
New Canaanite: Give me some of the facts of Andrew, even things we talked about on the phone. What I’ll do, I’ll record this conversation and use what we talked about on the phone for a short intro. What age is he and where does he go to school, all that stuff.
Houston: Eight-year-old boy in first grade at South School. And he has Down syndrome. We’ve been living in town for—
Rhonda: —You forgot the Childhood Apraxia of Speech.
Houston: And he has apraxia of speech.
Tell me how long you’ve been living in town.
Houston: We’ve been living in town seven years.
And you’re with Fjord Fisheries?
Houston: I’m their director of business development.
Director of business development. And are you guys involved in any sort of organizations in town, members of any groups that you want to mention to sort of place you in New Canaan?
Rhonda: Unfortunately, we don’t have as much time as we would like for that. The group that we are part of is called ‘21 Strong.’ It’s a group of moms that got together that all have children that have Down syndrome and we’re a support network. So we have that. I guess the group that we are most a part of in town is the after school center of New Canaan. That’s where he goes and they’re our big support group for him after school. But unfortunately we don’t have time to do as much as we’d like around town.
Houston: Last year, he played baseball in little league in town.
New Canaan Baseball, and I was one of the coaches of his team. And this year, though, he’s playing Challenger Baseball in Darien. It’s something a little more his speed.
OK. And you start to talk about his complicating—
Rhonda: —He has what’s called ‘Childhood Apraxia of Speech.’ It’s basically the mind has difficulty telling the mouth how to say the words. That’s the simplest way to explain it. We just actually had surgery on Thursday and we found out he was tongue-tied, so we had some of the tissue underneath tongue cut to allow his tongue to move around more freely, so that’s one of the many steps into his process. He gets about 2.5 hours of speech therapy a week, through school. And he has many therapists working with him on a weekly basis to help him speak.
Tell me a little bit about Andrew’s personality.
Rhonda: Oh gosh. It’s a big personality.
Houston: Big personality. He’s gregarious and outgoing. Everybody in town seems to either know Andrew or love Andrew or both. Loves sports, loves swimming, loves hockey, football, movies.
Where does he do his swimming?
Rhonda: We do it through a group called Angel Fish. They’re a therapy swim and we go up to Greenwich Catholic. That’s where they do it out of.
What are some of his favorite movies?
Houston: All the ‘Air Bud’ movies.
Rhonda: Anything with The Rock in it.
With—oh, The Rock.
Houston: Dwayne Johnson.
Rhonda: ‘The Shaggy Dog.’ Anything with a dog in it. Anything with sports in it. Or Dwayne Johnson. Those are his favorite movies.
Talk to me about his popularity in town.
Rhonda: Oh goodness. Everybody pretty much seems to know Andrew. We’ll be walking around and somebody will run up and hug him and unfortunately, he knows and we don’t and we get the introduction, from anywhere from his age on up. Adults. I just ran into a teacher yesterday when we were out with him, saying hi to him, that isn’t one of his teachers but is at his school and she knows him that way. We’ll be walking down the street and a car will go by and they’re like, ‘There’s Andrew!’
What is it about him? His personality or what? What is that?
Rhonda: Well, he makes sure that you know him. If you don’t know him, he’ll make sure you do. He’s just very outgoing. He’s so friendly and he just wants to know you. He makes it about you. He wants to hug you. He wants to say hi. Anybody. He’ll just walk up to them and say hello.
Undergoing surgery is tough for anybody. How is his enthusiasm—he has Down syndrome, on top of that he has this condition which makes it hard for him to communicate. So talk to me about how he handles that. How that affects him.
Rhonda: He tries to not let it affect him. But he gets very frustrated when people don’t understand him. And we do our best to be his interpreter. But there’s just a lot of times when we don’t get it right, and he’ll get very upset. It doesn’t stay, because he stays happy. He stays calm. It will be in the moment he will get upset and then he’ll move on. He doesn’t let it hold on. He’s not bitter about it, at all.
How does that affect you, if at all. What does the way he handles all of this do to or for you?
Rhonda: You know what, it makes us want to fight harder for him. Because we want him to be able to talk. We want him to be able to go up to someone and have a conversation with him and for him to understand them. We want him to have a good school life, where everybody understands him and he can get a great education. But because a lot of people don’t understand him, it’s difficult.
Houston: But his demeanor about everything and his desire to just want to be with everybody and have fun and run around and not sort of let the speech apraxia hold him back, it’s kind of an example to us. That as tough as we think he has it, he doesn’t let it really affect him. It makes it easier for us to handle it. We don’t let it get us down. We’re his advocates and we have to fight for him for different things, but we don’t—
Rhonda: —We don’t let our journey get us down, because he’s had to face so many obstacles in his lifetime. From trying to sit up, to walking, and now talking. Every day he fights hard, and he gets up with a smile on his face, knowing he’s got obstacles in front of him. We sit there and we know we’ve got stuff in front of us and we’re like, ‘Andrew can do it, we can do it.’ There’s no reason for us to let it get us down.
Tell me how long you guys have been together. When did you meet?
Rhonda: We’ve been together 11 years.
And how long have you been married?
Rhonda: We’ve been married eight years.
How did bringing Andrew into your life change your lives?
I mean, every parent it changes their lives—
Rhonda: —He came sooner than we expected. So we weren’t in the child phase of our life yet. We were just starting out. We were just getting ready to build our relationship and all the sudden he was there. And when we were pregnant, we knew there was a chance of Down. And we both said that there’s a reason that he’s here in our world now. When you get a diagnosis of Down, the first question you’re asked is: ‘Do you want to abort?’ And it’s a horrifying question because it’s not something you expect to hear when you’re carrying a child and you’ve got this new way coming before you. And we both said that this child was brought to us, it was a gift. And we’ll do everything. We didn’t do any further testing. We didn’t do anything. We told the doctors that if they see something is wrong, tell us. Then we’ll make decisions at that given moment, but until they tell us that there is a problem, he’s our son—well, we didn’t know he was a boy at the time—but this is our child and we’re going to do what we can to give him the best life possible, and you know, the day he was diagnosed, we said the same thing. This is our son.
Houston: I think Andrew having Down brought us closer together.
Rhonda: I think so. We work as a team. We call ourselves ‘Team Blackwell,’ because everything we do, we do for each other. There is no ‘I.’ Not one of us stands out more than the other. We work together and we do everything we can to make sure everyone is as taken care of as we can be. And Houston and I, from the minute he was born and the minute we started hearing this information—actually from the minute he was conceived and we started hearing this information—we worked together as a team, and it’s just been that way ever since.
Tell me a little bit more about Andrew in and around New Canaan. He goes to South, day care over opposite the Methodist Church there. Are there places he likes? What does he like to do around town?
Rhonda: He loves to go to Baskin-Robbins for his ice cream.
What’s his favorite flavor?
Houston (asking Andrew): Rocky road or sherbet?
Houston: Right now, rocky road is his favorite.
Rhonda: It’s great, because he’s got some food allergies and we can go in there and they have all of the allergies listed right on their product, and we’re confident going in there. And he loves going out to dinner. So any place that we can go that he likes, we can go. He likes to go for a walk around town because he likes people. He loves people. So any chance he can go for a walk around town or the Farmers Market or coming to visit daddy.
With his speech condition, what is the prognosis or the treatment, or is it something that is addressed through surgery or therapy alone, or both?
Rhonda: Therapy alone. It’s really just teaching the mind how to control the mouth. There’s a specific therapy for it, called ‘PROMPT.’ And you have to have very specific therapists working on it. It’s continually working on his words and incorporating his words throughout the day.
And it affects Down syndrome—
Houston: —No, it’s not exclusive.
So how does his having Down to start affect his ability to undergo therapy successfully?
Houston: It doesn’t help because kids with Down syndrome typically have lower muscle tone, which he does. So the lower muscle tone makes the apraxia even—
Rhonda: —Harder. Because both of them are low muscle-tone diagnoses. They both affect the muscle tone. So the two together is like a double whammy.
How old is Maggie [the Blackwells’ dog]?
Rhonda: She’s two years old.
What’s she got in her? Do you know? Border collie colors.
Houston: She’s got Border collie colors. She’s got some Dalmatian spots on her belly.
Rhonda: She’s got her pug under bite.
Houston: She’s got sort of the rabbits’ feet that whippets have.
Where did you get her?
Rhonda: Through a group called Tails of Courage. Originally started in Norwalk.
Rhonda: It’s a rescue group. And she comes from West Virginia.
From the south. My dogs, too. Talk to me about the community and coming here. You came here specifically for support, for you and for Andrew. Talk to me about the school system and also you, as a family, and New Canaan in this community.
Rhonda: We go to Grace Community Church. And the people there are very supportive. The day of his surgery, pastor Cliff [Knechtle] called him to say good luck and say a few words to him and encourage him. And Julia Hughes who lives here in town was calling him. Everybody wanted to know what he needed and could they help. ‘Can we bring him ice cream?’ And everybody at his after-school program was calling and wishing him luck and school was sending him home cards and it’s just amazing, the support that we have here. Those three places, they just work with us as a team.
Those three places being Grace, the school, and—
Houston: —and his after-school program. I’ve been working in New Canaan, more or less, for the better part of 10 years. So I’m familiar with a lot of the residents in town. A lot of the residents know me, know my face, know me by name. And being in a small business in a small town, you get to know people. We originally were moving here because this is where everybody said we need to come for his education. And it’s sort of grown into—when we moved here, we didn’t know what it was going to be like community-wise. I kind of guessed that it probably would be pretty good, because I know a lot of the retail customer base and everybody. I think we just realized that it really is a community.
Where are you from originally?
Rhonda: I’m originally from Buffalo.
Houston: And I grew up in Wilton.
Wilton High School?
What year did you graduate?
Yeah? I was New Canaan High School, ’93. And you grew up in Buffalo. When did you move down to this area?
Rhonda: I moved here the day before 9/11. Literally the day before 9/11. No job, no anything. My best friend was here and I’d been wanting to come for a while, and I had to take care of some family and once they were taken care of, I moved here. It was a stressful time. Then I got a job, and soon after I met him—we met in 2003—we have been together since our first date.
How do you spell your first name?
Houston: Like the city.
You’ve said that more than once in your life, I’d say.