A life worth living: one family embraces four children with Down syndrome

A few months ago, my oldest son told me he has a friend who has seven siblings, four with Down Syndrome. As a mother of a large family who has one child with Down Syndrome, I was astounded. Five biological children, three adopted, four with Down Syndrome and homeschooling? “Peter,” I said to my son, “Please get me her number. I need to talk to that mom and tap into her wisdom.”

By SONIA MCGARRITY, mercatornet.com

It took us a while to connect — Sonia McGarrity is, after all, a little busy. But once we did, we could have talked for hours about family life, homeschooling, and Trisomy 21. As we spoke, I realized that the story of this extraordinary family needed to be shared. So I asked Sonia if she would do an interview for Mercator. She graciously and generously agreed. • Mary Cooney  

Note: The McGarrity family prefers to explain that their children have a “medical diagnosis of Trisomy 21” instead of the more common term “Down Syndrome”.

Please tell us about your family.

We are the McGarrity Family from Denver, Colorado. My husband Jeff is the music director at our local Catholic Church and I am a stay-at-home mom. We have five sons and three daughters: two of our sons are in college, and one attends Catholic high school. I homeschool the remaining five children, four of whom have Trisomy 21: Jeffrey (17), Cecilia (13), Rosie (8), and Charlotte (5).

We felt that our son Jeffrey, born with Trisomy 21, was such a gift to our family that we opened our hearts to welcoming any other children whose birth parents were looking for a family to parent their children who had a medical diagnosis of Trisomy 21.

We enjoy following our sons who participate in various plays and musicals, soccer and golf tournaments, and keeping the girls busy with various extracurricular activities as well. We spend most of our free time in various church activities and taking cross county trips like a 4,000 mile trek to visit 14 National Parks several years ago.

We find daily life to be constantly busy. If we look at the sheer quantity of things to be done in a family with eight children, and add homeschooling on top of that and then mix it up with a variety of therapists coming into the home every day and spice it up with four doses of T21, you have an amazing result of a boisterous and robust dynamic of family life. 

When/how did you receive the diagnosis about your son Jeffrey? How did you feel/what did you think when first received the diagnosis? How did the rest of the family feel?

We had several ultrasounds when I was pregnant for Jeffrey, but no markers were detected for Trisomy 21. It was about an hour after Jeffrey was born that our midwife explained that she suspected Jeffrey might have Trisomy 21. Within a week we had a karyotype which showed that Jeffrey indeed had a medical diagnosis of Trisomy 21.  Upon first hearing, there was an initial surprise, but Jeff and I were confident that we had the support we needed to care for any of his needs.

Backing up a little, several months after our first son was born, we found out that we were expecting our second child. At three months of that pregnancy, we lost that child on the Feast of St Therese of Lisieux. In the midst of that sadness, I had a conversation with my sister and I told her that if I could not have any more children, I would love to adopt a child who had Down Syndrome. I had never met anyone with this diagnosis, but felt that it was an inspired moment, and that desire was placed on my heart.

We had a relative by marriage who had a son with a disability and after spending time with their family, I saw the charity and patience that her son’s siblings displayed, and I knew I wanted that for my own children. When Jeffrey was born, it seemed that the Lord had already put the desire on my heart, and we welcomed Jeffrey into our growing family!

I remember my dad saying, “I am so sorry,” but I think that Jeff and I had already projected acceptance and peace with his diagnosis. I think it is difficult for people to find the right words with an unexpected diagnosis, which we understand, as this was a surprise to us as well. With time and experience we have found that when we are in the situation of receiving news of a new baby with an unexpected Trisomy 21 diagnosis, our response is “Congratulations on your beautiful son/daughter, how can we support you?”

I did immediately call a friend who had a son with a similar diagnosis, and I immediately began gathering information and looking into starting therapies for Jeffrey. Looking back, I think most people took a cue from our attitude and responded with acceptance and a willingness to help. Seven months after Jeffrey’s birth, we made the decision to move from Maryland to Denver.

How and why did you make the decision to adopt a child with Trisomy 21? Can you describe the process? How much of a need is there for adoptive parents for children with T21?

We had been blessed with four sons, Thomas, Seán, Jeffrey, and Brendan and had lived in Colorado for a few years. We were adjusting to life with homeschooling for the other boys and therapies for Jeffrey. I had a second miscarriage and Jeff and I began to talk about the idea of adoption. We felt that there was a strong learning curve in taking care of Jeffrey’s therapeutic needs and doctor’s appointments and learning more and more about caring for children with his diagnosis.

I was on Facebook at that time and having conversations with various people about pro-life issues. At the same time, we were hearing about the high rates of abortion for children who were receiving prenatal diagnoses of Trisomy 21. An article regarding Denmark’s high rate of abortion for prenatal diagnoses inspired us to open our hearts and our home to any child whose parents were interested in writing an adoption plan for their child. We contacted the National Down Syndrome Adoption Network and completed a home study with a local adoption agency.

I was pregnant again at the time we were contacted by a couple in Colorado Springs who had found out that their daughter had a prenatal diagnosis of Trisomy 21. We began with phone conversations with Emily, our daughter Cecilia’s birth mom. She was unsure about writing an adoption plan, and we were encouraging her to parent. During this time, we lost our third child to miscarriage, and on December 17, 2010 Cecilia’s birth mom called us to meet our daughter, one hour after she was born.

Four months after Cecilia was born, we found out that we were expecting again. On December 21, 2011, four days after Cecilia’s first birthday and two days after her adoption was finalized, our fifth son, Augustine, was born.

We remained open to helping the Down Syndrome Adoption Network encourage birth moms to parent, and spoke to many, many birth moms, encouraging them after receiving pre-natal diagnoses. We met Rose Marie’s parents on February of 2015, and they asked us to parent Rosie, who was born on May 29, 2015.

In 2018, we were contacted by a couple in Chicago who had given birth to Charlotte on October 9. They did not have a pre-natal diagnosis, but Charlotte was born with a very complicated heart defect and after also receiving her diagnosis of Trisomy 21, they felt that they were interested in writing an adoption plan for their daughter. After speaking on the phone for a couple of hours, they asked us to parent Charlotte. She is our youngest child, and has had two open heart surgeries. She brings delight and joy to our family of eight children.

What is the impact of having children with Trisomy 21 on the rest of your biological children? How do they feel about having so many siblings with T21? What are their thoughts on having the potential responsibility of caring for these siblings in their adult years?

As I mentioned earlier, when Jeff and I were dating, we met a family who had an eldest son who had a developmental disability. He had two younger siblings and I was struck at how much his typical siblings were so gentle and patient and caring toward their older brother. It was a quality I immediately thought would be so wonderful for my own children to have one day – sort of a naturally born compassion and unconditional love for people who were different.

I would honestly say that as my boys have grown up in a very busy home and in an environment where therapies and doctor’s appointments and hospital stays are simply a part of life, they have become strong men of good character. Our family is steeped in pro-life activities and as they have grown up in our Catholic, pro-life home, we feel that they have learned more patience and other-centeredness than most children. They are quick to babysit and care for their siblings and not afraid to change diapers or help with siblings in many different areas. Indeed they are young men who love children and are quick to be patient with children of all ages.

We don’t know how caring for their siblings in the future is going to work out for our boys. We feel that God has a plan, though we can’t exactly see it now! Some of the boys have developed special relationships with one sibling or another that may turn into caregiving in the future. We have met families where one adult child has taken care of a sibling with special needs. In other instances adults with Trisomy 21 are living in situations where others are helping to care for their needs.

What are some of your most important sources of support?

Our family has been overwhelmingly supportive of our parenting and adoption decisions and has also provided financial, moral and babysitting support over the past 17 years.

I often say “It takes a church” to raise a child. Our church community has been another crucial source of support. Friends who go to church with us have provided financial support to help us with the cost of adoptions, often will “treat” our family when they see us at restaurants in the community, have provided endless hours of babysitting during hospital stays and times when we are out of town for adoptions, and more meals and diapers than I can count.

We also find that our therapists are often our first advocates and have taught us how to advocate for our children, helping us to ask the questions we don’t even know who or how to ask.

We were quick to accept recommendations for therapists and were blessed with a “dream team” of a speech therapist, occupational therapist and physical therapist for Jeffrey pretty soon after we moved to Colorado. By the time he was a year old, we were set in therapy mode. We relied upon our case manager to make suggestions and followed the “typical protocol” for schooling children with developmental disabilities.

Another huge area of support is through state benefits and supports. We are fortunate that Colorado offers a wide variety of support for our children with a medical diagnosis of Trisomy 21. We always encourage parents to educate themselves on any and all available state resources.

Let’s talk about homeschooling. Why do you choose to homeschool your children with Trisomy 21? How different is it from homeschooling neurotypical children? Do you treat your children with T21 differently from your other kids? Why or why not?

We have homeschooled all of our neurotypical children through 8th grade, and then sent them to Catholic high school before college.

From when Jeffrey was born, we always treated Jeffrey just like we treated our other children. We started teaching his older brothers to read when they were four, so we started Jeffrey when he was four. For therapies, we were encouraged to put Jeffrey in school so that he could continue receiving therapies in the school system. And at that point, bringing him to school was different than his brothers. We began to feel a tension between treating Jeffrey differently from his neurotypical siblings. Although he was thriving at home and quickly learned to read and was developing wonderful relationships with his brothers, there was a disruption in our homeschooling day with having to take him to and from school. We quickly observed that the expectations in the school system were far lower than they were at home, so in the first grade we began homeschooling him. It was the best decision of our lives.

With each adoption and change in life, we tried different modes, putting our children with Trisomy 21 in school and after Covid, just brought all of them home, realizing that the one-on-one time with therapists and myself as teacher was the best method of learning for the kids.

We have found that our children have the same desire to learn and same desire for independence as our neurotypical kids but the need more repetition for mastery of the same material. Homeschooling has offered us the opportunity to meet their needs instead of just checking a box of expectations that they are supposed to meet.

The same is true of their desire for friendships and relationships, all so important to every person. When I look at my children with a T21 diagnosis, I first look at what the needs of my neurotypical children are and make sure I am doing the same for them. Sometimes, our children with T21 cannot articulate their needs or desires, but they still have them. So in addition to making sure their educational needs are met, we make sure their social/psychological needs are also being met.

The thought of homeschooling typical children can be daunting — even more so with children who have special needs. How do you know what to teach and how? What curriculum have you found to be most effective?

We were blessed before marriage to know homeschooling families, and plugged into that community when we were first parents. As a parent, I think what to teach is pretty straightforward — start with reading, and once a child knows how to read, add handwriting and then math. All the other subjects seem to come in addition to those core classes. We have always enjoyed reading to our children and have found that read-alouds are an important part of our curriculum. We have used a curriculum called Memoria Press for all of our children, those with developmental delays and our neurotypical children. It is focused on a classical curriculum and methodology and has been an excellent fit with all of our children

Jeffrey, our 17-year-old with Trisomy 21, has read The Tale of Two Cities, King ArthurLast of the Mohicans, just to name a few. He is currently finishing up Gone with the Wind. It is amazing how interested he is in learning. Again, I feel that once we taught Jeffrey to read, he hasn’t wanted to stop. He spent a year in our local public high school, but we decided to continue homeschooling after we kept fighting to get him in a mainstream literature class because of his ability and his confidence in reading. The freshman class was reading Hunger Games. I stopped battling to get him in the class because I felt that this was not an appropriate book for a “literature” class. He continues to read challenging works, and I know he will succeed in his college pursuits.

I think we need to keep in mind that our children will learn; it just takes trying different approaches, repetition and keeping a sense of humor about things. I also don’t have a time frame of expectations. For example, my daughter Rosie is approaching nine years old, but is doing third grade work in some areas, and second grade work in others. Again, if I compare her to what a typical school requires, then it could seem like she is really behind. But when I focus on where she was six months ago and where she is now, I can see continued success in education.

I think putting kids in a box and saying because you are this age you need to do this successfully according to our measuring stick is what may cause some parents of children with developmental delays to become discouraged. The school system is required to have “measurable and achievable goals” which translates to giving your child a goal that we know he can achieve in a year, and then we will pass them on to the next grade. But if they are only meeting simplistic goals, then there is no real learning or advancement going on.

For our family, homeschooling has meant freedom… freedom from having to fight to get our children treated as deserving a true education, and freedom from endless meetings for individual planning documents with school authorities and frustrating attempts at advocating for our children to get a great education.

One of the most challenging aspects of homeschooling is motivating our children (with or without T21!)  to do their work cheerfully and well. What kind of behavior problems do you encounter homeschooling your children with T21? How do you deal with them? How do you keep your children motivated and wanting to learn?

Well, flexibility is the name of the game. Keep in mind that our children with T21 will need more hands-on manipulatives when doing math because simply writing equations is tougher when you have to incorporate writing with problem solving. Some children really learn by phonetics; others learn by sight words. I think flexibility in trying something and following it until it no longer works, then moving on to something that another mom recommends.

I think because I have been at it for so long (almost 20 years), it doesn’t bother me to plug into other moms and ask what resources they are using. Try something different. Sing a lesson — music is highly motivating for children at any age. Sometimes I will sing instructions to make it more fun. Take a break. If frustration is mounting, call a recess and go outside. Flexibility is one of the many benefits of homeschooling that you can tap into. Saturday can be a schooling day.

Find a fun religious education program and call that religion class. Find a music class or a very patient piano teacher and enroll the children once a week – they get a different teacher, which makes it novel and you get a small break. Find therapists, music teachers and things that kids can do in the home during the respiratory season, so you minimize their opportunities to catch a cold or virus. Spend as much time as possible outside during spring, summer and fall to keep them engaged.

A good team is another necessity. I have learned to lean into my occupational therapist to include goals for handwriting as well as functional goals for my children. I also ask therapists to help me fuse therapy goals and educational goals. Again, keeping a team working together has been beneficial. Maybe you need to find a relative or an empty nester who would like to come in and read books a couple of times a week with your child.

Learning itself is highly motivating, especially when their older peers and friends mark their successes. Make big deals out of successes. Rosie loves a double high five after reading each page of a story. Does it get old for me? Yes, but for her, it is highly motivating. When she starts to peter out, I remind her that she is going to get a double high five as soon as she gets to the end of the page.

Music breaks are a real winner in our home. Let’s just finish this math lesson and then you can have a 30-minute story time (radio drama) or music on your own speaker. Charlotte loves ribbons for dancing with music. As soon as the lesson is over the girls can have a 15-minute music break with ribbons. Believe it or not, my kids LOVE balloons. Get a bag of 50 from Walmart and use it as a reward.

The trick is to find simple solutions that your child finds rewarding. Homeschooling isn’t always a walk in the park, but if you think outside of the box and lean into seasonal and liturgical activities (a literal walk around the block to collect leaves during the fall or building a snowman during winter to talk about shapes) you’ll discover small ways to incorporate rewards for getting lessons done. 

I try not to do a lesson that is ever 45 minutes long. Another huge motivation is helping in the kitchen. It’s almost time for lunch, and I would love to have your help if you can finish up this lesson.

Behavior problems aren’t really all that different from typical kiddos. There is just a stubbornness that can sometimes seem frustrating, but just move on.

I think it is very important to keep expectations at the same level for both my developmentally delayed kiddos and my typical children. Once you make and keep those expectations, they really do try to live up to them.

What does your typical day look like? Do you have a routine?

We wake up and start the day between 6 and 6:30am. We try to have breakfast, dressing, and medications done by 8:15 am and then we pray together. On Mondays, Wednesdays, and Fridays we go to 9am Mass at our church and then we start school and therapies by 10. On Tuesdays and Thursday we start school and therapies at 9:30am. While one child is in therapy, I am teaching one or more children, and the others might have a brain break. Lunch is promptly at 11:30am.

The afternoons are much the same, with someone in a therapy and the others schooling. We begin our afternoon activities: music lessons, sports and groups around 3:30/4pm but this depends upon the day. At 6:30 we begin our bedtime routine and then we read and pray before bedtime which is at 7:30pm. We keep evening activities to a minimum, so that someone is always at home to get the girls to bed and have a regular evening routine.

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