Updated: Mar 28
It's Never Too Early to Prepare for Independence
For new parents, independence for their child with Down syndrome may seem like only a distant dream. It is so far off and they are understandably overwhelmed with the challenges of being a new parent and navigating the special services available for their newborn.
However, as a parent of Gwendolyn, our 28-year-old daughter with Down syndrome, we now reflect on the steps we could have taken decades ago that could have made our journey easier and the options available to us more plentiful.
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Here are 4 tips I recommend you embrace now:
Dream Big! Those same dreams everyone has for all their kids still hold for your child with Down syndrome. Don't shelve those dreams of happiness, success, pride, love, and independence. Now more than ever, these aspirations are attainable. Distance yourself from those that don't support big dreams. Like all aspirations, they come true with a lot of planning and determination, and a dose of luck. We charted out Gwendolyn's future with her when she was 18. Perhaps earlier than many parents but much later than ideal. Sure, we've had to modify plans along the way, but we will never give up. We determined early on that inclusive classrooms were not the best learning opportunity for our daughter, but we still kept pushing teachers and administrators for support to reach her goals each year. Work together to figure out the best path for your child and family.
Mindset! This is tricky. Most parents, teachers, and social workers say the primary issue holding adults with Down syndrome back from their own independence is the mindset of the parents themselves! By the time the child is in their twenties and beyond, the parents have learned to coddle and protect their child (as we are all apt to do). Parents have seen them be bullied, try and fail, and struggle with some basic tasks. No wonder they are too concerned to even envision their child doing more on their own, living out of the house, walking, or commuting to work on their own. As a new parent with big dreams, don't let yourself become complacent or overly protective. Furthermore, your responsibility doesn't end with you. Instill a positive, independent mindset in your child with Down syndrome. Encourage them to dream big, to make their own choices, to believe they can live on their own, work, and go to college just like their siblings, schoolmates, and TV friends. If you all don't believe it, then it won't happen. Finally, ensure others in your lives have the same positive, believer mindset including siblings, grandparents, teachers, doctors, and caseworkers. As they say, "It takes a village" - one with everyone rowing in the same direction.
Practice Skills Development! This includes basic tasks and also 3 "difference makers:"
Basics: When they are older, being able to do the dishes, laundry, and personal hygiene, as well as communicate on the phone will all be important steps in their independence. Start today with small tasks around the house. Encourage and help, but do not do everything for them. Most psychologists insist a person's personality becomes engrained in the first 6 years of life so empower them to be a vital part of the house and family from an early age.
Choices: As independent adults, they will need to make their own choices. Help teach them how to make choices and how to consider the implications of these decisions. Starting with simple choices like food and clothing will build that skill early on. There are ramifications when you choose to wear shorts in the winter snow or opt to eat only snacks all day.
Problem-solving: Once on their own, they will have to figure issues out. My daughter will likely never balance a checkbook or pay bills, but she needs to understand what to do when she doesn't feel well or when a stranger knocks on the door. These skills build their confidence and our confidence to give them more space.
Self-Advocacy: Gwendolyn and I are working on this one a lot. We are encouraging her to speak up, say what she wants, and not let others speak on her behalf without her permission. I ask her, "Who's the most important person in your independence plan?" She proudly responds "I am!" Yes. At the same time, self-advocacy is about asking for help when you need it. I discovered Gwendolyn had been out of toothpaste for at least several days. She didn't tell me she needed us to order more because she didn't want to lean on us - she can do it herself! So we are working on finding that balance between asking for help, informing others, and being as independent as possible.
4. Resources Now! We covered many resources in one of our most popular posts. Items like Social Security and Guardianship may seem far in the distance, and they are for new parents. But there are a few actions you should do now:
Line up therapists: most cities/states offer a bevy of speech, occupational, and physical therapists to help your child be their best from their first months.
Enroll in your state waiver program: almost all states have a state Medicaid Waiver Program that provides benefits to cover transportation, day program costs, and semi/independent living options when your child is older. The problem is that most states have long waiting lists of 5-20 years to receive benefits. Lists that had moved at a relatively fast pace may stall completely due to lack of legislative funding or challenging economic times (e.g.; COVID). A 5-year wait can turn into 10 or 15. Find out about your state's programs now and get on the list. Also, understand the rules. For example, we discovered that moving out of the state, even for work or temporarily, removed us from the list so when we returned, we had to start over. Each program is run by each state, so the waiting list position and benefits are not transferrable as you move. These are important factors to understand so you consider all the information when making family decisions.
Special Needs Trust: It's always wise for parents to have a Will in place. Don't wait to turn 50, do this as soon as you have kids (if not beforehand). For parents of kids with Down syndrome, it's even more important so you can ensure the right people are taking care of your child and so that gifts do not jeopardize your child's complex puzzle of benefits. Find a lawyer well-versed in special needs documents.
Learn More: There will be many more benefits to consider as your child approaches 18 (like Social Security Disability Income, Medicaid, Guardianship, ABLE Accounts, SNAP, and more). Don't wait until their 18th birthday to discover these benefits. Be sure to join your local Down Syndrome group. Most host speakers with expertise in these benefits, as well as financial planning and legal Wills and Trusts. Attend these to begin to understand the myriad of options. You may be fortunate enough not to feel the need for these resources yourself, but sustainable, long-term independence for adults with Special Needs is definitely not cheap. I believe we should pursue every type of benefit available to our kids so they have all options available for them as they pursue their dream of independence.
Congratulations on having become a new parent of a wonderful, adventurous, beautiful child with Down syndrome. They may have special needs (we all do), but they also will have the same desires as their siblings and friends - happiness, pride in their work, a need for friendships, and their own independence, Start now to develop the skills you and your child with Down syndrome need to pursue their every dream. Nothing is out of reach when you start early!
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 the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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FREE 5-tab Independence Plan Worksheets when you subscribe.
These worksheets provide a framework for developing and maintaining your own roadmap to independence. Tabs include Creating your Independence Team, Daily Hygiene & Chores Checklist, Managing Social Circles, Financial/Benefits Support, and Housing Options.