Advocating for your loved one through every stage of life
When our loved one with Down syndrome is, we are confronted with many different approaches before even leaving the hospital. Contrary to common expectations, this continues throughout your life.
Questions at the Hospital
This is definitely the most trying time. Often we, the parents, are not even expecting to have a child with Down syndrome. Even if we do, we likely know very little about Down syndrome - its origin, history, opporturnities, and challenges. This primer blog will definitely help you get grounded. My wife and I gathered a lot of books and even attended a talk by two young gentlemen with Down syndrome, Jason Kingsley and Mitchell Levitz, who co-wrote Count Us In (1994 edition, later followed by an updated 2007 version). It was a great opportunity to see firsthand what adults with Down syndrome can do. It certainly changed our perspective, but we were soon overwhelmed with information and just decided to love on our new baby Gwendolyn.
Yet the questions kept coming from family and friends...
Is she healthy?
What can she expect?
What can you (the parents) expect?
What do you need?
Sometimes we got more pointed, but likely well-intentioned questions...
How did this happen?
Can you have more kids?
Could this happen again?
Even, what are your options? Are there still institutions that can help?
And perhaps worst are not the questions, but the stares. Some are meant to signal their sadness and compassion for your situation while others just don't know what to say or do.
These approaches are all pretty understandable. Many of us grew up (especially in the 1980s and earlier) rarely seeing let alone interacting with a person with Down syndrome or other intellectual disabilities. They were the kids in the room down the hall at school or the neighbor who never seemed to come out to play. And certainly, our parents' and grandparents' generations grew up when people with disabilities were typically institutionalized. So no wonder many people just stare, unsure what to say or how to say it.
This can be frustrating for parents. It is part of our role to educate others and always advocate for our loved one with Down syndrome.
Conversations at Every Stage of Life
Here are some points to share at various stages of life:
Birth
First and foremost, learn enough to help yourself. Check out our primer post about Down syndrome. Understand that Down syndrome is neither parent's "fault." Take comfort regardless of the health of your baby that advances in the last 40 years have extended lifespan from 27 to 60+ and know that the world is full of great opportunities for those with Down syndrome. Share this uplifting message with family and friends. Certainly, there may be a time for grieving for the family vision suddenly lost. Don't hesitate to reach out to doctors, therapists, geneticists, and most importantly other families through your local Down syndrome association. However, beware that there are still naysayers and pessimists, even amongst those professions that should know better.
Invite those that are supportive and optimistic onto your Independence Team, to help chart the course and plan for the opportunities ahead. For those who just don't get it and don't want to make the effort to learn, honestly, cast them aside. You do not need such pessimism on your family's journey.
0-5
The greatest focus during this next stage is development. Utilizing physical, occupational, and speech therapy to build new skills for your baby and yourself is essential. The skills they learn will set them on a course for independence and parental confidence in the future. Be sure to find therapists who see opportunities, not limitations. Invite your family and friends to observe or participate in such sessions. For all of us, we gain greater understanding, acceptance, and love for people who are different from us through interaction. This is a great time to build bonds, especially for those on your independence team.
6-15
Welcome to school age. You will now be confronted with teachers, administrators, and other parents. Some are positive and some are not. Some will try to push their opinions upon you re ARD/IEP and classroom inclusion. You must decide what school time looks like for your child. Inclusion is a great option becoming more acceptable throughout the US, but it is not for every child or family. What situation is best in developing a courageous, independent young person?
If your teachers and/or administrators focus on limitations vs. opportunities, consider switching staff or schools. Everyone must be rowing in the right direction and putting your loved one first. They should include your loved one in ARD/IEPs and discussions about their health and future.
In retrospect, we would have re-focused many of our ARD/IEPs, especially as they became teenagers, on the independence skills they need to reach their dreams. That implies having dreams. Spend time with your loved one and independence team considering what the future might look like - ongoing education, work, social interaction, commuting, and living outside the family home. What are the skills necessary to succeed with each and how can we start to build them through ARD/IEPs now? Advocate for more time outside the classroom including shopping, eating out, taking transportation, etc.
Critical skills including making choices, problem-solving skills, self-initiative, and advocating for themselves are essential as they get older. Independence is not a switch you can flip on at 18-22. Start building those skills early and often.
16-22
Many parents are frozen by the decisions necessary during this period. Many liken it to "falling off a cliff." You have to consider these items and more:
When and how to apply for SSI/Medicaid and more?
What happens when public school is over?
How to find your loved one's first job?
Should I secure guardianship or some other form of support?
How to ensure we are getting the maximum benefits and maintaining them?
Once again, find those "partners" and kick aside those "dissenters" including doctors, teachers, counselors, and employers. Lean on friends and local DSA resources to help fill in the gaps. Compare notes and consider creating solutions (work, transport, housing) within your community.
23+
All the learning, advocacy, and teamwork pays off. Independence is different for everyone - there is no set definition. Continue to build the skills using checklists and role modeling so your self-advocate is ready to achieve these skills:
Laundry
Dishes
Cleaning
Being home alone
Finding and holding a productive and enriching job
However, note again that the average lifespan has more than doubled since the 80s. With 60+ now quite typical, that means this generation will typically outlive their parents. Evaluate your options and plan accordingly. Many expect their loved one to live with them (parents) until they just can't, at which time they will live with a sibling or aunt/uncle. These are feasible options but take some planning. Observing a parent's loss of skills or clarity or death will be quite traumatic for our loved ones. So have a plan in place now. If that includes moving in with others, be sure to do these steps:
Talk to your relatives to explain expectations and responsibilities
Consider what a physical move might look like. Will they lose their social circles and work? Will they lose Medicaid Waiver Plan waitlist or benefits by moving out of state?
Ask if they are prepared to assume that role. If so, start getting them up to speed with items like medical status, financial benefits status, specific contacts and more. Create a Letter of Intent (free template when you subscribe) to convey these important details.
Provide them with necessary documents (guardianship, Will, Special Needs Trust-SNT) and resources.
We decided that although Gwendolyn's siblings love her dearly and will be called upon to fulfill the guardianship and SNT trustee roles, they will not be her caregivers. Gwendolyn needs the stability of a community living and the social, educational, and vocational opportunities that go along with that. Her siblings don't need to limit their own family's opportunities either. That was a very important family discussion. Each family should have a similar talk, though your choices may be different.
Don't wait to consider these when you are ill. Talk to your relatives early. If this is not in their plans it's likely not in your self-advocate's best interest. Consider other public (group homes) or private (apartment, house, community living) options. Understand what that may look like regarding location, timing, and costs.
"You must prepare for something. Doing nothing is not a solution."
Considering all the people that will be in your son or daughter's life can be overwhelming. But ensuring that only positive, supportive people are part of your team is essential. It starts at the hospital and continues throughout life.
Want to Learn More?
Check out our diverse blogs split out by age ranges
Consider picking up The Essential Guide for Families with Down Syndrome to help fill in the blanks and provide you with the resources you'll need.
Utilize other website resources including an Independence Assessment Quiz, our 10x10 YouTube series, and a fabulous Resource Directory.
Got more questions? Join our FREE live virtual webinar in January or February. Find out more and register here!
The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
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 the 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.
GET YOUR COPY HERE!
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 the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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