TELL US ABOUT YOUR FAMILY

We are a family of four. Dad is Site Operations Leader at a healthcare company. Mom works at a grocery store and is an educational advocate, as well. Brother Andrew will be a senior acting major at Marymount Manhattan College in NY this fall. Jordan is 23 years old, works part- time at AMC theatre, attends a day art program three days a week, and … oh, yes, she happens to have been born with Down Syndrome. We are a close family that enjoys all things we can do together, from watching Andrew on stage to going to the latest movie. We all share a love for music and pride ourselves to listening to all types of music.

HOW DO HEATH AND FITNESS PLAY INTO THE QUALITY OF YOUR FAMILY’S LIFE?

Good exercise has always been on our radar as a family. As a mom who was a former dancer and a dad who was an athlete growing up, we were always in motion. When our kids were born, we did the typical kids sports like T-ball, soccer, bowling and even dance classes. As they got older, Andrew preferred the acting stage and Jordan’s ability to be included with her typical peers in these sports became few and far between. As a family we strive to keep moving and eat healthy. We also realize that this is sometimes easier said than done. Jordan has found that she really loves exercise classes.

Jordan will comment on having “good choices, when she chooses a fruit over a processed snack. She said recently that when she exercises with Greg, she feels so much better afterward (She’s never commented like this before). We also realize that she really does need a structured, intense workout. Walking or riding a bike is not intense enough for her and although they’re a great way to keep her body moving, she recognizes that there is a difference and prefers the more intense workouts (Who knew?).

WHAT ARE SOME OF THE CHALLENGES YOU’VE EXPERIENCED?

Challenges for us include time, support, expense, and availability. We as a family believe that exercise needs to be part of a daily routine and needs to be factored into all other activities. When you find that after all the activities that you HAVE to do (work, daily program, etc.) and you are left with a small amount of time at the end of a busy day, it becomes impossible to have the best workout when her body is done for the day (That’s the time piece).

The key is maintaining Jordan’s independence. She loves to be independent in working out, but she really needs support to guide her and keep her good form to prevent injury. This then leads to expense. We as a family can and do certainly supplement this, but eventually, this needs to be something that she can sustain and, with support as well as funding anything outside of home, this can be quite expensive.

Now we hit availability. It is very difficult to find places and people that have the knowledge and ability to work with someone with a disability, let alone a cognitive disability. Once they work with Jordan, its easier for them to see that she is capable and easy to work with, but starting is very hard.

WHAT ARE SOME OF THE TRIUMPH’S YOU’VE EXPERIENCED?

One of our first triumphs was the first time she ever stepped foot on a treadmill and her heart rate accelerated and she didn’t panic. She had been having a rough time with the feeling that you get when you heart rate increases, so when she was finally able to tolerate this, it was awesome!

Now fast forward to today and when she went to meet with Greg to have an assessment of what she could do, we were AMAZED at all she was able to accomplish with his direction. She tried and succeeded with every exercise that was tested, and not only once but twice. And her latest triumph was when she was doing her favorite exercise of squats, she was able to add a 15 pound dumbbell to this exercise and boy was she proud of herself!!! She also asked if we could exercise for longer time (who does that??). We feel this is important because if she feels successful she will continue to do this, which will keep her body healthy.

WHAT HAVE YOU LEARNED ALONG THE WAY?

Intense, controlled exercises that push her muscles work the best. She gets an immediate response from her body and I think she feels the best afterword. Walking, riding a stationary bike is not enough of an intense workout. She also loves a good Zumba class, but finds that this is more about the music then it is about the movement. She cannot follow the routines as quickly but does not care in the least bit. She lasts the full 60 minutes.

WHAT ARE YOUR AND JORDAN’S DREAMS FOR THE FUTURE?

If I had a magic wand, I would wish that Jordan could have an exercise routine daily. That she could work with someone that could make sure she would not be injured due to bad form. I wish she was able to attend a class with other people and feel as successful as she does working out in our living room over a Zoom call.

This is so important because, as an adult with DS, her metabolism is compromised and this effects EVERYTHING. Her ability to digest food, her ability to move her body and her ability to fight disease and illness. It’s about all around good health.

WHAT ADVICE OR INSIGHTS WOULD YOU AND JORDAN SHARE WITH OTHERS?

If I could tell anyone one thing about exercise or physical fitness is to first… BEGIN. If you look at a huge picture of all the things that can go wrong or won’t work, it will consume you. START one day at a time. Begin with whatever you are able to whether that is a walk around the block, or a stretching exercise or increasing their water intake one tablespoon at a time.

It may seem like you are never going forward but I assure you that you are. Even if you take two steps forward and one step back, you are moving forward. And don’t listen to anyone who cannot support you getting healthy and helping your family to get healthy.
At the end of the day, YOU are one that has to clean up any messes, not the naysayers. Be the best you can be by just starting ONE DAY!!

Cheryl Caira, Jordan and the other members of their amazing family live in Framingham, MA.