A quick & easy recap of decisions you must face!
Armed with 30 years as a parent of Gwendolyn, our wonderful daughter with Down syndrome, as well as the past five years of engaging with other families, writing The Essential Guide for Families with Down Syndrome, and touring the country to listen and share our learnings, below is my Top Ten list.
I get it, raising a family, especially one with a person with special needs, is a lot. The list below is a lot. But I encourage you to read on. Each of these 10 items is critical. I've met many families that wish they knew this list and had done their homework before they missed out on some financial benefits or lost their SSI due to an unforeseen (but unforgivable) oversight.
Some of you may be "on schedule" on many items - Kudos to you! Then, take one of the others on the list, perhaps in the AGE range your child is currently in, and start to dive in.
What you will find is there is not a clear path for each TOPIC. There are options in each area as described below. The biggest challenge is to ponder each topic, understand your options, and assess the best path for you and your family based on your situation, location, finances, etc. The Essential Guide for Families with Down Syndrome dives further into each of these topics, providing options and a process for making decisions.
# | AGE | TOPIC | DESCRIPTION/OPTIONS |
1 | BIRTH ON | MINDSET | A parent's mindset, especially in the hospital, can be fragile. But do some research and talk to other families. The outlook for people with Down syndrome is no longer bleak but filled with opportunities. Your mindset, whether positive or negative, can be very contagious affecting your family, teachers, doctors, and especially your loved one with Down syndrome. Don't get hung up with the change in path - focus on the opportunities ahead! |
2 | BIRTH ON | FINANCIAL | Finances are a lifelong challenge starting at birth. Independence is not cheap. Make sure you get on Medicaid Waiver lists in the first year. Then learn about all the lifestyle options below, what they may cost, and how your family will decide on each option and how to fund it through benefits, work, and family finances. |
3 | BIRTH ON | LEGAL | When any child is born, you should update your Last Will & Testament. For your baby with Down syndrome, be sure to also consider a Special Needs Trust to protect their assets and income to preserve their eligibility for SSI and other valuable benefits. Later, set up an ABLE account before they start working. |
4 | TEEN | PERSON-CENTERED PLANNING | It's really important from birth to place your child with Down syndrome at the center of the planning process. Include them in ARDs/IEPs, doctors' appointments, and housing tours from the earliest age. As they grow, include them in the discussion. Don't let others talk just to you but talk with your loved one first. It is their life and they should be the primary driver of the path your family chooses. |
5 | TEEN | SOCIAL | Social engagement is critical beyond the common superficial chitchat. Like everyone else, they need friends they can share their dreams and worries with. Depression is 3x more likely in people with Down syndrome. Trusted confidantes can help temper that outlook. |
6 | 18 | TRANSITION | Prepare for their 18th birthday at least one year in advance. You will need to consider options for guardianship and whether to continue in high school beyond 18 when that is available, or pursue other continuing education and/or employment options. You will need to apply for SSI and thus Medicaid benefits at 18. |
7 | ADULT | HEALTH | Most parents are aware of most health risks at birth and during childhood. However, with the lifespan of people with Down syndrome growing from the mid-20s in the 1980s to over 60 now, new adult health risks like obesity, sleep apnea, mental health, and Alzheimer's are becoming more prevalent. Understanding the signs of each, educating your doctors, mitigating where you can and preparing where you must is critical. |
8 | ADULT | CONTINUING EDUCATION | Whenever formal high school is over, consider your options from "homeschooling" to inclusive college programs to day programs. Day programs can range from babysitting to slave labor so do your homework. Opportunities to continue to learn will contribute toward a more meaningful life and a more active mindset. |
9 | ADULT | EMPLOYMENT | Work for our adults with Down syndrome is critical. Not for the financial impact (often the money is either small or could be so big you unknowingly lose valuable lifelong public benefits), But work builds skillset, relationships, pride, and confidence. Be sure to find the tasks your loved one enjoys and take time to find the right place - not just one who has a job to fill but one that embraces your child fully. |
10 | ADULT | HOUSING | Think long term - 30 to 50 years out or more. Where will your loved one live when you are gone or unable to take care of them? Perhaps the move should be earlier in order to provide your loved one with all the opportunities available and the independence they so often crave. Research options from family to public to private housing and how each fits into your financial plan and the dreams of your child. |
Take a deep breath. It's a lot but this list, our book, and your local Down syndrome association can help evaluate these options to ensure your whole family can lead their best 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 live virtual webinar in April. 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.
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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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