PART OF OUR RESOURCE 2024 SERIES: Expanding your options and your community
Featuring guest blogger, parent, and family and disability advocate, Jadene Sloan Ransdell.
Welcome to the World
I am sitting at my computer thinking about the nearly fifty years that I’ve shared life with one incredible human. I was like most moms of the seventies, dreaming of the children that would make our family complete. Little did I know that the birth of my second child would ignite in me a passion whose fire I cannot extinguish. I have tried.
You see, in the summer of 1974, I gave birth to my second baby boy. In two short days, our pediatrician shattered the dreams I had of little boys playing together. He identified all the physical characteristics he had seen in my baby and told me he suspected that Matt had Down syndrome (not the terminology he used). When Matt was just six weeks old, I got the call confirming the diagnosis, and two weeks later the pediatrician advised my husband and me to put Matt in the state institution in Orlando.
Spark Ignited
Soon I began my journey as a family advocate. I started learning everything I could about babies with Down syndrome. I read; I spoke to a few other moms; I went to meetings and conferences. Within a couple of years, I was struggling to make sense of the contradictory information I received from professionals about what was best for my child. A spark was ignited; I did not want other families to feel the isolation and loneliness I experienced.
Matt was three years old when I had the opportunity to return to college and get a degree in education. That opened the door for me and gave me credibility with professionals who worked with Matt. (When Matt was a little one, we were just parents. Professionals treated us as if we knew nothing about our children. They were the experts and we needed to trust their every thought.)
As a special education undergraduate, I got to teach in Matt’s kindergarten classroom. It was quite evident that Matt’s development was unlike his classmates. I suspected he also had Autism, but his doctors told me that anything he was doing, or not doing, was solely because he had Down syndrome.
I did everything I could to learn about child development and raising a little one with Down syndrome. Life got more challenging as Matt developed slowly and was less like his peers. By the time he was sixteen, the differences were great and other families did not interact with us. I pulled away from the Down syndrome community as I no longer felt like a part of their group. However, I continued to find ways to support families whose children had a variety of disabilities; that passion spark had become a small flame, and I was compelled to offer families hope for their futures.
Over the years, I observed elder parents continue to advise younger families to do things as they had done. I vowed that when I got older myself, I would step aside and let those following me take the lead. Before that time, however, I was fortunate to work in our state developmental disabilities program where I provided a family perspective to policymakers.
And then I retired. For a while!
The Call Was Loud!
The call to advocacy got loud again when I was given an opportunity to create training for staff in Montana state institutions. Residents of the facilities were being discharged back into communities around the state. Those two experiences, working at a state level, were eye-opening. I got to witness how policy was made and to see that some people had to be taught how to provide person-centered services.
Alzheimer's Diagnosis
It was not long before Matt was given a diagnosis of Alzheimer’s disease.
As an aside, know that there is a high risk of Alzheimer's in our folks aging with Down syndrome, but it is not the reason for every change we might witness. I have learned a lot since that diagnosis.
Although the risk is high, not every adult with Down syndrome will exhibit clinical signs of Alzheimer’s. Infections, thyroid issues, and poor sleep are some of the conditions that might present symptoms that mimic dementia.
Medical professionals who are knowledgeable about the physical and mental health of adults with Down syndrome share that the average age of diagnosis is about 55 years old. When changes occur, people, especially those younger than in the mid-forties, should have a differential diagnosis to identify and/or rule out other conditions.
Most often we will see behavior changes before we notice memory issues in our folks with Down syndrome.
The progression of Alzheimer’s spans less years for folks with Down syndrome than in the general population.
With the Alzheimer’s diagnosis, I found myself feeling sad. I was angry; I was afraid; I was alone.
Social media was already big in our lives, and I was able to find a couple of groups for dementia caregivers. I discovered two things when I joined those groups. First, the support and information the members gave each other was powerful – it reminded me of the days I participated in Parent-to-Parent support. Secondly, I could not relate to the other members because they were adult children caring for a parent, or spouses caring for a life partner. I was a mom preparing to watch her son lose the skills he had worked so hard to learn.
Roaring Flame Spreads
That spark of passion grew into a bigger flame. I created a specialized support group for families and professionals caring for adults aging with Down syndrome and diagnosed with Alzheimer’s disease. For the past nine years, families from around the world have been able to seek and provide loving support to each other as they learn to navigate this dementia with someone they love dearly. Recently I read a post from a member in Australia seeking information specific to where she lived. Shortly, there was a response, and the two members were able to connect. It turns out that more than 1,000 people are now part of this community that I don’t personally need. Matt has not progressed with the disease, and I am convinced that the assumption made by the neurologist was incorrect.
That assumption, however, led me to connect with the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) where I served as the co-chair of the family support committee, facilitated the first online support group for families, and wrote a monthly newsletter that was distributed throughout the world. I later connected with the National Down Syndrome Society to create the Down Syndrome Adult Summits and help develop their aging and caregiving programs.
While I keep thinking it’s time to retire again, that passion flame has grown hotter. When I read about the issues families face trying to care for their loved ones who are declining and dying with Alzheimer’s, I am made aware of the inequity that is occurring in various systems that should be supporting people with Down syndrome as they age. I’ve seen it in the medical community, in community service provision, in access to government benefits, as well as the limitations Medicaid puts on families who are unable to move their loved ones because funds and services don’t follow them.
These are the stories that have made me cry, caused me to lose sleep, and fueled that flame of passion. Although I am on the other side of my mid-seventies, I cannot stop or walk away. Systems need changing because they have not kept up with the increase in life expectancy. Parents and siblings, as well as other carers, become overwhelmed and sometimes ill themselves due to the inequity of care our loved ones experience. I hope that I can spark others to carry forward this torch of passion for people aging with Down syndrome.
To learn more about Down syndrome and Alzheimer’s check out the resources available from NDSS and the NTG at www.ndss.org/publications and www.the_ntg.org. The Facebook support group is open to families whose loved ones have an Alzheimer’s diagnosis and can be found at www.facebook.com/groups/DSALZ.
Guest Bio: Jadene Sloan Ransdell
Website: www.agingwithdownsyndrome.com
Jadene Sloan Ransdell has a B.S. in Special Education and nearly 50 years of experience working with families and professionals in many areas related to developmental disabilities. She has worked with state-wide education systems and developmental disabilities agencies in several states, and in public school classrooms, as well as family involvement programs. Her background also includes the administration of local community, state and federal programs serving families – including military families who had children with disabilities living in Germany.
Her work as a family advocate led her to serve as a volunteer on numerous boards, councils, and organizations. She is a lifetime member of the Family Network on Disabilities of Florida and was a member of the 1998 class of Florida’s Partners in Policymaking. As a former consultant and staff member to the National Down Syndrome Society, Jadene created a national conference focused on adults with Down syndrome, the first of its kind in the United States. Later, she helped develop their Aging and Caregiving programs. A former board member of the National Task Group on Intellectual Disabilities and Dementia Practices, Jadene served as the co-chair of the Family Support and Advocacy committee, co-facilitated their national, web-based family caregiver support group, and authored a quarterly caregiver newsletter that was disseminated worldwide. In addition, she administers a Down syndrome and Alzheimer’s Facebook group that supports more than 1,000 members in the United States and around the world. Jadene has been the recipient of many awards throughout her career, including the NDSS Stephen Beck, Jr. Champion of Change Award, and the Spirit of the NTG Award.
Jadene’s knowledge of family and disability issues is enhanced by her first-hand life adventures with her own family. She and her husband, Joe shared 51 years together before his death from COVID in March 2021. Their older son, Michael, has given Jadene two grandsons. Her younger son, Matthew, was born with Down syndrome, and has additional diagnoses of Autism, Apraxia, and Non-verbal Tourette’s. Despite a more recent diagnosis of Alzheimer’s disease, Matt still leads a successful life of his own, with support in the community. Jadene’s real-world experiences with Matt bring a unique perspective to her work which she shares through her writing, workshops, and seminars.
Jadene began writing a blog (www.agingwithdownsyndrome.com) shortly after Matt was diagnosed with Alzheimer’s to share the challenges and joys encountered by families and people with Down syndrome who are over 40. In the past few years, she took a break from the blog and has recently published a book, Unwrapping the Gifts of Disability: A Mother’s Reflections on Raising a Son with Down Syndrome. You can follow her at www.agingwithdownsyndrome.com.
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