Updated: Apr 4
How to Learn, Challenge, Teach, and Partner with Teachers, Doctors, and More
As parents, our relationship with teachers, doctors, and others can be precarious. It is perhaps further illuminated as parents of kids or adults with Down syndrome.
As in all cases, we lean on the expertise of teachers and doctors. After all, they've gone to school and have years of experience to qualify them as professionals. Our loved ones with Down syndrome will especially need these services.
People with Down syndrome will likely be engaged with teachers or therapists within weeks of birth. This can help our babies make significant strides in fine and gross motor skills, communication, eating, and social interaction. Later, whether we opt for mainstream education, a life skills path, or a combination, the teacher(s) will be the first line in developing more advanced skills and knowledge. Especially for people with Down syndrome their capacity to learn, albeit at a slower pace, through formal education can continue well beyond high school. In fact, many studies show if formal education stops abruptly when high school ends, such a cliff can result in stagnating plateaus and Regression syndrome, where skills and self-esteem slide backward. So continued education through homeschooling-type initiatives, day programs, or inclusive college programs is vital to their continued development, confidence, and community inclusion.
Many teachers are like angels. They dedicate their days (and nights) to educating our kids. They have the best intentions as they expand the minds of all our kids and help mold them into the people they will become.
We've had the good fortune of having many wonderful teachers at public school, religious school, and post-high school day programs that have made an indelible impression on our daughter, Gwendolyn. When she struggled with the upheaval of moving to England, teachers were so accommodating and comforting in helping Gwendolyn feel at home.
We have had the rare occasion where a school administrator was too focused on the paperwork and rules and regulations, as well as a speech therapist early on who declared Gwendolyn would likely never be verbal. What the therapist didn't know is Gwendolyn talked a lot at that stage, replaying the day's events with her dolls when she got home. Unfortunately, they had not developed the chemistry together for Gwendolyn to feel comfortable sharing her communication styles with her therapist. Ensure your teachers are investing the time to connect.
Throughout their lives, people with Down syndrome will face many health challenges. It is just part of their journey. Some have severe issues at birth which must be addressed, others tangle with the high propensity of obesity, sleep apnea, and hypothyroidism as they become adolescents. Nearly all confront mental health issues as they seek to understand the world around them and their own thoughts and dreams, often with somewhat limited communication skills. And finally, the prevalence of Alzheimer's disease amongst those with Down syndrome (95% of people with Down syndrome by age 60 vs. 12% of the general public) prompts the need for lifelong physical and mental health management and planning. Various doctors are certainly our guides along this journey.
Gwendolyn was fortunate to avoid the cardio and gastro issues many babies with Down syndrome must confront, but she has been managing most of the adult health issues noted above. From school doctors to primary care physicians and specialists, most have been vital in helping her progress.
There are several other professionals our loved ones with Down syndrome meet ranging from occupational therapists to psychologists, nutritionists, camp counselors, and financial planners. Each brings unique expertise to help our self-advocates achieve healthy and fulfilling lives.
What They Need to Know
I generally believe in the good intentions of people. Certainly, regarding doctors and teachers, I'm sure they all share a calling to help others. However, as we can all attest, some are graced with better 'bedside manners' than others. Some have been trained to teach and care for people with intellectual/developmental disabilities. Some have the patience of Job. Others, not so much.
Here are some common traits of the best professionals:
Listen to the person with Down syndrome.
Direct your questions first to the individual with Down syndrome.
Be patient. Ask different questions and wait for an answer: reword or break down your question. Consider alternative ways of communicating (visual or technological). Meet them where they are.
Learn about Down syndrome. Understand learning styles or common health issues.
Consider that all learning issues, medical problems, or behavioral issues are not because of Down syndrome. Don't be quick to attribute everything to the extra chromosome.
What We Can Do
As parents, we know our children best. We understand how they operate, how they communicate, what motivates them, and what may upset them. Though we may not be a doctor or teacher ourselves, we are highly qualified. One of the greatest blessings and responsibilities is to advocate for our child/adult with Down syndrome and their needs and dreams. Wrapped up in that statement is that our job is not merely to advocate for what we want or wish for our children, but to listen to them, step back and assess, and then be sure we are advocating for them.
Here are 6 critical steps that we, as parents/caregivers, should assume:
Learn about Down syndrome. You should be educated on the basics including common health risks, financial benefits qualifications, and legal documents that will protect and serve your loved one. You don't have to be the expert, but you need to be familiar enough to have discussions with the experts on these topics.
Seek to truly understand your son/daughter. Observe, probe, test their understanding, and document their dreams, fears, and motivations. We can be the best advocate by understanding what they truly want and need.
Put your son/daughter first. Recognizing some people with Down syndrome are quite verbal and others rely more on visual or technological assistance, it is always important to encourage them to engage first. Make space for your son/daughter to share their concerns and needs with their teacher or doctor. If the professional seems to direct all conversations to you, redirect them first to your son/daughter. The issues are theirs after all, and this redirection builds self-advocacy skills and self-esteem while helping to get to the heart of the issue. You may learn something new as well. Afterward, you may chime in with your observations and questions but ask your son/daughter if they believe you are correct or have captured their thoughts.
Educate the professional. Many teachers and doctors have limited exposure to Down syndrome. Certainly, special ed teachers or doctors at Down syndrome or transition clinics should be well-versed, but they can still benefit from your insight on Down syndrome and the specific personality and style of your loved one. Share published medical guidelines, work limitations to protect Social Security benefits, and unique communication and social styles, all of which are detailed in The Essential Guide for Families with Down Syndrome, so they will be equipped to understand your loved one, engage with them, and be best prepared to solve issues and create possibilities.
Be the bouncer when necessary. If the relationship with your self-advocate's teacher, doctor, therapist, or others is not working well, you have the power to pull the plug. If they don't appear to be listening or learning, it is time to find someone else.
Embrace the angels. All of us are fortunate to have very special people enter our lives - people that just seem to connect with our son/daughter. Their pure kindness and love creates a bond that brightens everyone's day. Embrace these people. Include them on your Independence Team. Such energy can help you and your family achieve amazing things.
Teachers, doctors, and others play a critical role in your family's journey and you, as the parent/caregiver, play a role in cultivating that relationship and ensuring it remains productive.
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by age 65, often exhibiting first signs decades earlier? Together we can make a difference!
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