Our second superhero caregiver is Mercedes, another member of our Folia family. Mercedes is married to Dan, Folia’s Lead Developer, and together they have two children, ages 2 and 5. Their oldest, Mila, has Down Syndrome, and Mercedes has spent the past five years becoming an expert in helping her daughter to meet and exceed all expectations set for her.
N: Mercedes, thanks for taking the time today to share your story. It’s helpful for parents like you take the time, so that others understand that they’re not alone in their experience of being parent caregivers.
M: I think you’re right, and it’s so important. You think you’re on the journey all by yourself, or with the medical stuff, that you’re a unique case, and it’s unsettling. But something that your mom said was very right…when you think there’s something wrong, there’s usually something wrong. You don’t realize how much the mother’s instinct has to do with how you take care of your kids until you have a problem, and then you just know!
On top of that, though, I think it’s very important to get knowledgeable about the condition that your child has. Specifically for Down Syndrome, there’s a lot of information out there, and doctors don’t always know it’s there. It’s hard for parents because your first point of contact is the medical person, and the information that they give you is very dated…there’s a lack of awareness in the medical space regarding the progress that’s been made with these types of diagnoses.
N: Why do you think that is?
M: With Down Syndrome and autism, things are constantly changing, so it’s easy to get outdated.
There are some programs out there to help, though. Operation House Call is a program that allows medical students to come to your house and experience what it’s like to live with a child with Down Syndrome. It’s a great idea, because there are a lot of medical pieces that come along with Down Syndrome, like the heart problems, the GI tract problems, the sleep apnea, but most kids don’t experience everything that is medically registered. Seeing the full list of things that could happen can be very scary for parents. Doctors tend to think about it in one bucket, so they’ll tell you about everything, but you may have a different variation. You can read about it, but quite frankly, you’re not going to have every medical concern that is written about.
N: So you’re saying that it’s actually less frightening than it seems.
M: Yes – and that’s part of what I was saying, you definitely want to get knowledgeable about the medical stuff, but you also need to talk with the parents who are experiencing it, because that’s where you find reality. And we need to bring that reality back to the medical field, so they can understand how happy and normal a life that a child like Mila can have.
N: How do you connect with other parents, to find that reality?
M: We’ve been able to connect with people in ways that were impossible before. Like Facebook – not only in Massachusetts, but across the globe, we all talk about things that affect our children on Facebook. This includes not only their medical and behavioral, but also how well they’re doing, the little things that are different. Sometimes you can feel connected and still alone, because you don’t get deep in conversations online…but it can help you feel more understood.
N: Outside of social media, what are some of the best resources that you’ve used to get information and connect with other parents?
M: I still think that the best resource to-date is word of mouth, believe it or not. It’s because there’s so much information, it’s not organized, and it’s distributed in so many ways…so it’s hard to consume. Oftentimes, when I hear about an experience that another person had, it’s much easier to digest and it’s real. You understand the pros and cons of a program or therapy even better from someone who is talking to you directly.
I wish there were one place to go to where you could find everything, medical and therapeutic, what works and doesn’t work. It’s just hard, though, because there’s so much out there – there’s a wide range of conditions even within Down Syndrome that make it hard for everyone to fit in one bucket.
N: You’ve done an amazing job with Mila so far – she has a very normal life, and even plays piano! What advice do you have for other parents who are dealing with a similar situation, and want their kids to be rock-stars, too?
M: We’re very lucky to live in a place with great medical resources, like Boston Children’s Hospital, which has a Down Syndrome clinic that helps to connect parents to resources and medical support, even support with the schools. They can write up a letter and give you the options that are available to you, and then you can hand it off to schools. The hospital’s program has made a very big impact on the community in general.
N: How about support from the schools themselves?
M: I think that’s something that has changed over time, due to parents pushing for inclusion, and organizations supporting them. I do think the movement has come from parents who wanted their kids to be part of typical schools and share the experiences that other kids have on the same playing field.
It’s made a significant difference in her life. We did a lot of one-on-one therapies with Mila growing up that helped her develop in ways that were incredible, but there’s nothing like being part of a community and knowing how to interact with other children, how to compete with her peers, how to be with other kids.
A basic example – I was teaching Mila to swim for three years, and the biggest struggle was getting Mila to put her face under water. You have no idea how many times I tried it…but we went on vacation, and she saw two little girls doing it. And here I was, three years in the making, and I couldn’t for the life of me get her to do it. But then she saw another kid doing it, and suddenly putting your head under the water is the easiest thing to do, the most fun thing to do. It just goes to show you that being part of a group is so important …you can’t measure that, and you can’t work on those things, they’re just part of human nature.
N: I think that’s a great observation. When I was a teenager, teaching swimming lessons to small kids, we saw the same thing in our classes. There’s nothing like watching her peers to motivate a child to try something new.
Can you talk a little bit about your medical challenges with Mila?
M: Mila’s greatest medical challenge was her heart defect. She was born with what was called Complete Atrioventricular Canal Defect (I don’t even know why I remember the complete medical term, but I do. You learn the medical terms quickly.) It was the most difficult thing for us to overcome, even more than the diagnosis. It helped us to get over the Down Syndrome diagnosis much quicker, because her life was on the line.
It was a very interesting time in our life, but the cardiac department at Children’s Hospital was amazing – they gave us a lot of information. For example, I had no idea that the reason that she was exhausted after 5 min of breastfeeding was because her heart condition caused trouble breathing. Her lips would even turn purple… it was very scary.
Even though the staff will tell you about it, though, you have to figure out what to do. We did want to keep breastfeeding, even before surgery, because we wanted to give her the opportunity to get the best food. It was trial and error – there’s really no recipe for that. We just created a balance of what worked and didn’t work.
So I would say yes, the medical staff and hospital were great, the lactation consultants were great to provide info, but you alone have to figure out what works best. I actually downloaded an app specifically for this. Mila needed to be on Lasix, so the water would flow through her body quicker, so we would time how much she was feeding, when the Lasix was given, and then when she would breastfeed again. We kept that log of info with both breastfeeding and diaper changing, so we could understand how she was doing throughout the day. You are the master of what works for your child – because not everyone will react the same way.
I really do think that the parent knows what’s best, all the time.
N: I love the log! You’ve managed this like a true consultant.
M: (Laughing) That’s all I know! That’s the only way I can get organized and get stuff done. If I have a plan and know that I’m doing everything for her, that’s the only way to feel okay. I’ve saved some of these Excel sheets that I use to track everything, and one day it’ll be a fun story to tell her. We built this together.
N: What advice do you have for other parents just starting out?
M: I think the biggest thing is to have high expectations, no matter what. Any child that is put in a rich environment will overcome many challenges that you didn’t think were possible. If you don’t push your kids to do their best, they just won’t! I think that’s worked for Mila. She’s done a lot of hard work, but we’ve always had expectations that align to what we think her potential is. And maybe even more! She’s surprised us in many ways – now she is playing piano, reading, learning two languages!
The other thing I would say is don’t worry too much about the future. I constantly used to do that, and never let that go at the beginning. And the more I see her grow and develop, I wonder what I was worried about. I was worried that she would have a hard time making friends, that she wouldn’t go to camp…I was even worried, would she ever get married? It sounds ridiculous, but you’re worried about things, and it’s just a waste of time. I now focus on the things that we can do today for her, and celebrating her successes, and helping her toward her goals. That’s what we can do now! Who knows what the future will look like – it’ll probably be a million times better than what you expected! You just have to let it happen.