Jadene Sloan Ransdell
November 22, 2024
As the mother of a son with Down syndrome, Autism, Apraxia, and Alzheimer’s, I’ve been doing this parenting and caregiving gig for over 50 years now. I learned a lot during that time. Many of my lessons came from Matt, my best teacher; some came from professionals who have been part of his journey, and some from other parents and siblings who love and care for their family members with Down syndrome.
When Matt was a child, I parented him in much the same way I parented his older brother. I did all the things mommas do to make sure their child is healthy, happy, growing, and learning. I also did things that I never dreamed I would be doing. I think I missed the fine print in the parenting contract that stated I might need to do some tasks that I won’t share in this writing – for the sake of Matt’s dignity and privacy – know there were bonus rounds in the parenting game that I’m glad are behind me.
As Matt got older, I needed people to understand that there was a caregiving component to parenting that wasn’t there when I was raising our older son. The Merriam-Webster dictionary defines parenting as the “raising of a child by its parents.” It defines a caregiver as “the person who provides direct care to children, elderly people, or the chronically ill.” I will challenge that definition by expanding it to include providing indirect care. You’ll understand that in a moment.
When Matt was born, I had visions of his father and me, at retirement age, sitting in rocking chairs on the front porch of our Florida home. Between us was another rocking chair in which Matt was sitting. Matt was a newborn, yet I already saw a future where I would always care for him. He had just begun his life, and I was exhausted thinking about the work it would take to raise him. Support to families of infants and children with disabilities was nearly nonexistent when Matt was born; I knew it was up to me and Matt’s dad to do the best we could with limited resources.
I recently spoke about parenting and caregiving with families at the seventh National Down Syndrome Society Adult Summit. In preparation, I spent many hours thinking about my role as Matt’s mom and caregiver. I recalled instances where, even when he was a child, my role as a parent shifted into a caregiving role. There was a fine line between parenting and caregiving, but the most significant distinction was that when Michael, my firstborn, left home at eighteen, I was no longer responsible for him. Yet, with Matt, my responsibility remained. (To continue to exercise that responsibility, I had to go to court.)
As I thought about my role as a parent and caregiver, I discovered some repeating themes.
Caregiving has no retirement plan. (It’s the same for parents and siblings – except that the sibling role changes when there are more caregiving responsibilities.)
Letting go is part of the journey.
Build a Heart Network.
Share the hard stuff – that’s how change will happen.
I love that I’ve been a Momma Bear for over fifty years. As a child, Matt faced many challenges. I knew intuitively that there was more to Matt than his initial diagnosis of Down syndrome. Misunderstood by his teachers and other supports, he had meltdowns and refusals frequently. He was labeled a difficult (bad) kid. So, I spent many years providing care, filled with deep love, that went above and beyond parenting until, one day, my child was an adult.
Matt was in his mid-twenties when my role as a parent and caregiver began to change. He was able to move into a home of his own with support funded through a Medicaid Waiver. I was no longer the person who was overseeing his bath, helping him pick what clothes to wear, making his favorite meals every evening, or giving him goodnight kisses as he was tucked into bed. I no longer held him tightly when he got over-stimulated or agitated. I no longer sang his favorite songs to soothe his troubled soul.
I felt relief and sadness at the same time that Matt was no longer a part of my day-to-day life. Friends commented that the energy in my home seemed calmer, and I also seemed more relaxed. Matt’s challenges also challenged me as a mom and a caregiver.
Fast forward a few decades; my caregiving role has changed. However, I’ve learned that caregiving didn’t stop when my vulnerable son moved away.
Caregiving has no retirement plan.
Although parenting and caregiving for my son when he lived in my home was a full-time effort, becoming an indirect caregiver is still critical to Matt’s success. My involvement in his life informed any new staff about Matt’s likes and dislikes; my knowledge of his history taught staff how to best support him when he was upset. Participation in all Matt’s medical appointments was necessary to maintain his health history as part of his ongoing care. Moving from being a full-time parent/caregiver to one who cares indirectly took patience – with myself and those learning who Matt is. I have learned that indirect caregiving – which is how I support Matt now, is still a vital role. I know some families choose to have their loved ones live with them their entire lives, and while that is certainly an option, it was not what Matt chose. Matt decided to leave our home when he was still in public school – there was a strong push for people to gain as much independence as possible, and we have a program in Florida that allowed Matt to live away from us with the support he needed. When I asked Matt if he wanted to leave home like his brother did, he always gave me a quick thumbs up. A lot of thought and planning occurred before he moved into his first apartment. It wasn't easy to let someone else provide the care I had given Matt for twenty-three years. And in the first years, we had overnight visits at least monthly.
I now use an internal checklist when I meet and interview new staff. My checklist, which comes from my core values, includes the qualities I expect from anyone who supports Matt. I’ve learned that I need to be patient with staff as they learn to support a vulnerable person who doesn’t use words to communicate, who has wants, needs, interests, likes, and dislikes but cannot express those in ways most of us do.
I’ve learned that Matt’s history is essential for his staff to know. I am the curator of his more distant history, and I’m fortunate that he now has people who have known him for many years. I rely on them to share their knowledge of Matt, too. Understanding who Matt was as a child, a teen, and a young adult gives others the keys to best supporting him.
Most recently, Matt has exhibited some health changes that could signal the Alzheimer’s journey has begun. I am involved in every conversation about his ongoing care and often take the lead on handling that care. And then there was Hurricane Milton. Matt’s home is in the second tier of evacuation in our county. I offered to have him, his housemate, and staff come to my home when evacuation orders came. After a few days, I received no response about this offer from the agency overseeing Matt’s staff, so I made plans to leave, as I did not want to be in my home alone during a massive hurricane. As the hurricane drew closer, the track wasn’t looking good, so I communicated regularly about where Matt would be, including his ultimate travel out of the area with his staff. Upon his return, I spent time on the phone coordinating the use of my home for his shelter, as I had electricity, and Matt’s home did not. Even though I was not present with him, It was a stressful and intense time.
It has become clear that my involvement in caring for Matt, although it has changed over the past few years, will continue to be essential to his health and safety. It truly takes a village as our loved ones age, and I know I will always have a significant part to play in his support. This is a job from which I will never retire.
Letting go is part of the journey.
Having a son with multiple challenges made it difficult for me to figure out if I could let go. Because Matt has faced communication challenges most of his life, I was reluctant to let anyone else make important decisions for him. When he was born, the life expectancy for a person with Down syndrome was about 25 years old. So, for many years, I expected that I would outlive him and would always be the most crucial support he had. He has outlived his father, and there is a chance he could outlive me.
In my book, Unwrapping the Gifts of Disability: A Mother’s Reflections on Raising a Son with Down Syndrome, I wrote,
“It’s hard to imagine that the birth of a child with a disability would teach me about letting go. One would think that such a pivotal experience would have had me holding on for dear life. But the truth is that letting go has been a part of the journey from the beginning. Letting go has a daunting connotation, I suppose. It can indicate the end of many things; but the beauty of letting go is that it can also signal the start of something new. I have experienced many periods of letting go through Matt’s life; I’ve let go of dreams, of people, of expectations, and even responsibilities. Some of those times were painful – the death of my husband being one of the most difficult. Yet I have found comfort in other times of letting go. Knowing Matt has someone who is watching out for him, taking on a responsibility I had for many years, has brought me peace as I move forward in my life.”
As I have aged with Matt and moved into the solo parent role with the death of Matt’s father, I have permitted myself to let go of some of my responsibilities. I’ve asked his brother to become more active in planning meetings – he has done that and more. I’ve asked two people who are part of Matt’s circle of support to take the lead on some of the decisions we need to make for Matt. (That’s been challenging at times, and I am still working hard to give them the freedom to help Matt without running every decision by me.) Turning Matt’s guardianship over to one of those two people was the biggest step in letting go. I want to write a bit about guardianship. When Matt became an adult, we were told we had to become his guardians to have a voice in decisions about his life. Without guardianship, doctors did not have to inform us or seek our input about Matt’s care. Community services could support Matt in a way that was best for them without knowing how we wanted him supported. In fact, Matt was scheduled for eye surgery before we became his guardians. When we were at the hospital, the staff tried to cancel the procedure because we had no right to make the decision, and she felt Matt lacked the cognitive ability to decide for himself. This momma bear had to be assertive to get the care we had come for. Matt has always had limited use of language, so we knew he could easily be taken advantage of. Joe and I went before a judge to be given the legal authority to continue providing the care we had given him for two decades. As Matt received services through a Medicaid Waiver, I became close with the woman we chose as his support coordinator. Michelle and I formed a very close bond in the years she served Matt in that role. She became like a daughter to me, and when she changed jobs, we stayed close – she attended meetings concerning Matt’s waiver services. About 2010, she took me to breakfast and told me that when Joe and I could no longer serve or wanted to step down as Matt’s guardians, she wanted to take that role. We discussed whether she would be a co-guardian with Michael or do it alone. It was such comfort to know that Michelle, who has extensive knowledge of our Developmental Disabilities system in Florida, would be Matt’s advocate and protector. About four years ago, I asked her if she was still willing to become guardian, as Joe’s health declined, and I realized I needed to be more involved in his healthcare. Early in 2021, we started the process for Michelle to be Matt’s guardian advocate (a special guardianship for people with developmental disabilities in Florida). It took us months to complete the process because Joe died partway through the filings. Just a few months after Joe passed, we met with the judge over a Zoom call when Michelle was appointed, and we also named Michael as the successor guardian. The judge was kind and expressed gratitude that we had made this change in guardians before a crisis and that we had also identified a successor guardian. Michelle and I work as a team with all guardianship decisions (and we include Matt just as his father and I did from the beginning). We both like this arrangement as it helps her learn how I make/made decisions for Matt, and I grow more and more confident that she understands what I want for him.
Letting go has been a little easier because I have created a support network for Matt. That is the third theme in my caregiving journey.
Build a Heart Network.
A Heart Network? What is that? Let me share from my book one of the best gifts I’ve received raising Matt.
“In the mid-eighties, I was a board member of Parent to Parent of Florida. This group of kindred souls shared my passion for supporting families when a disability moved into their homes. At a break in one of our quarterly board meetings, we found ourselves discussing the different relationships we have with others. In that conversation, we shared the hurt of friends who had lost their connection to us, as well as the friends that we never got to know. We also talked of the people who support us in our lives, day-to-day and over time. Joanne Scaturro, a short Italian lady, has been called an ambassador of love; we thought of her as the female Leo Buscaglia. She could tell the best stories and was often called the Queen of Funny. Joanne was a social worker who didn’t know a stranger and the board member representing the Florida Department of Education. She always had an open heart and open arms for the warmest hugs. During that conversation about relationships, Joanne called the people who support us our ‘Heart Network.’”
She helped us recognize that those closest to us are in the center of our Heart Network; they are the people we can always turn to when we need a shoulder to cry on, hug, or share our deepest thoughts, worries, and frustrations. Our Heart Network is also made up of people we turn to regularly, like teachers, doctors, and service providers. Even those we have more limited contact with can support us – like the clerk in the grocery store, the neighbor passing by on our walk – people who just put a smile on our face and help us feel better, even if just for a moment. Our Heart Network is a part of our life that brings us support, comfort, and peace.
A strong heart network will be a treasure as you and your loved one age. I advise you to begin building that network as early as possible. I have found that families who raised their children with Down syndrome in the same location for their entire lives typically have a larger network to support them. I found it challenging to develop that network myself for several reasons. We moved to Clearwater when Matt was twelve years old and was having significant behavioral challenges. That made it difficult for us to participate in social activities with community groups, friends, and even our families. And secondly, I was not good at asking for help. My insecurities left me feeling I was failing if I couldn’t manage every aspect of Matt’s care. I let people believe that my life with Matt was easy and I was in control. I learned that when Joe died, I had to ask for help. I had to give myself permission to let others do for Matt when I couldn’t. It’s been a challenge, but it’s getting a little easier.
My heart network now includes my older son, who has become more actively involved in supporting Matt than ever. It also includes two people who have become like family members – Michelle and Brian, a key staff member. My support also includes the agency owner that staffs Matt’s home and some of the staff of the National Down Syndrome Society (NDSS) and the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). I’ve also been supported by the members of a Facebook group I created over ten years ago for families caring for loved ones with Down syndrome and Alzheimer’s. It is through sharing with them that I have grown more able to seek help and have learned so much about the difficulties and joys of caring for someone aging with Down syndrome and Alzheimer's.
Share the hard stuff – that’s how change will happen.
I first connected with NDSS in 2017 because I had a dream for a conference focused on issues faced by adults with Down syndrome. (That dream became the Adult Summits and guided the development of the aging and caregiving space within NDSS.) I shared the hard reality of my life with Matt with Kandi Pickard. I love to tell people what an amazing son I have (because he is), and I rarely share the problematic parts of his life. Sadly, I had so many instances where Matt and I were invisible to others – even in the Down syndrome community. When I met Kandi, I decided it was time to speak up. I was compelled to talk about the life experiences that left us excluded by the very people who should have been cheering us on. As an elder, I now know we must witness the entire spectrum of challenges and successes our loved ones face. I’ve spoken with moms with children who have great strengths and are highly visible to the world – and those moms still have concerns about the support their kids need. I’ve spoken with moms who have had similar experiences to mine – where they felt excluded from their local Down syndrome community because of the extra challenges their child has. The bottom line is if we don’t talk about our life experiences, we can’t change how support is provided. A few weeks ago, a sibling posted in the Facebook group about her frustrations. It was another one of the posts that generated a multitude of responses because many people could relate to it. Here are a couple of quick examples:
A sibling can’t address her terminal illness because there is no one to help care for her sister, who has Down syndrome and Alzheimer’s.
Community service providers let a mom down after her daughter developed challenging behaviors following a hospitalization and her father’s death.
Parents and siblings share that even when their loved one is moved to a long-term residential facility, they must teach the staff and spend many hours daily to provide care.
These stories are the foundation for changes that we can make to better support families and individuals aging with Down syndrome. When you get the opportunity, communicate what’s in your heart.
As I live in this final season of my life, I desire to support others who follow me on this journey. Sharing my journey at the Adult Summit connected me to many parents and siblings who told me that they, too, could have spoken my words. The conversations I had were deeply emotional, comforting, and heartfelt. Much of what I now do as a family advocate comes from the stories others share with me. I encourage those who care about someone aging with Down syndrome and who read these words to reach out to me with your thoughts. I have many ideas bubbling up that I hope will support our families, and your ideas keep me focused on what is most crucially needed. I’m always happy to chat on a phone or Zoom call, so send me an email, and we can schedule some time.
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