5 Things Parents of Adults with DS Worry About
Updated: Jul 10
...and what we can do about them now!
Including Cooking with Gwendolyn: French Toast + Sausage...Yum.
Being a parent of a child with Down syndrome, or any special ability for that matter, can be glorious and challenging at the same time. So what do many parents of adults with Down syndrome worry about?
It can be a myriad of issues, but these seem to be the most common. More importantly, I've provided some ideas on how we parents can try to manage the anxiety:
Safety: All parents worry about the safety of their children. And like all parents, the more independence that is granted, the more concerns we have. For adults with Down syndrome it is often a concern that they may be taken advantage of either by a stranger in public, someone they know in private, an online predator, or a knock on the door. These are all valid concerns. We cannot protect our kids to the detriment of their independence and growth. What we can do is talk to them. Explain that there are risks out there and they must be careful. Practice what they should do in these situations. Drill this into them. Ensure they know how to say "no," how to call 9-1-1, and when and where to be outside, especially at night. Leave notes/lists by their computer and by the front door so they remember what to ask or say. Be sure they have their own cell phone and a security system if they have their own house (or know how to use your system).
Health: This can cover a myriad of issues. For our daughter and for many with DS, that includes weight. I wish we had focused on developing good eating and exercise habits with Gwendolyn from the earliest of ages, but we were overwhelmed with our "to-do list" and this seemed to fall to the bottom. Gwendolyn now understands nutrition, portions, and the importance of exercise (she recites these mantras daily) but these have not become habits so she falls prey to the temptations in the kitchen and on the couch, just like her parents. Start early. Obesity and a sedentary lifestyle can lead to many complications and for our generally short adults with DS, those complications can be quite troubling.
Alzheimer's: As parents of kids/adults with DS, we are all likely aware of the connection with Alzheimer's via the 21st chromosome. There was a lot of information in many NDSS and NDSC 2020 Convention sessions. Research and progress are impressive but the tie remains. The likelihood of adults with DS having dementia is very high and, perhaps most troubling, it happens decades before the general population. As parents, we need to learn about these risks, advocate for more research, and also do what we can to slow this risk. Keep our kids learning well beyond the end of high school. Find day programs that are not just play, but engage their brains. Give them homework. Introduce change (of routines, places, or daily tasks) so their brain is active. And, to be blunt, don't put off their dreams for later...they may not be able to pursue their dreams in their 50s, so support their independence, their learning, their socializing, and their dreams in their 20s and 30s.
Benefits: There are many support and financial benefits due to our kids and adults. Half the battle is just knowing what they are. Apply for them as soon as possible. One of our recent posts provides some good guidelines. Be keenly aware of any restrictions; e.g.; if you move out of state, many benefits don't transfer, if your adult has more than ~$2,000 to their name, they can lose some Medicaid benefits (get an ABLE account), and if they are fortunate enough to find love and get married, many of their benefits may disappear (call your congress-person!). Supporting their dreams is expensive! Don't miss out on any of the benefits due to you and your adult.
Long Term Care: It's the discussion many parents don't ever want to have. Where should our adult with DS live? What happens if we arent' around or can't take care of him/her? Frankly, this is a critical conversation to have. You (the parents) deserve to retire, your other kids (the siblings) deserve to lead their own lives, and most of all, your adult with DS deserves to have their independence so they can grow, learn, and thrive! Don't wait until you are 60 and they are 40. Start considering your options before they are in their 20s. Consider what they/you want (learning, social, vocational, location, etc) and what budget you have (w/ public benefits available), and pursue the plan with your adult as the center of the decision-making.
These are often the biggest concerns of parents/caregivers/guardians of adults with Down syndrome. They don't get resolved on their own, they only get worse. But you can manage these risks so they don't drive you and your child's life. Take an active role in teaching, role modeling, and planning for these inevitable risks so that you have a plan for their success.
Gwendolyn loves to cook. She cooks breakfast by herself, makes pudding surprise most nights, and helps with the salad and veggies most any night. This month she is displaying her skills cooking French Toast and Sausage.
The UPLifting Guidebook Project is gathering information from parents, doctors, living facilities, and individuals with Down syndrome so we can help in your journey.
Please take our quick and confidential survey. Your answers will help us better understand your dreams of independence and the obstacles that may stand in the way so that we can seek to address the myriad of issues in our upcoming Guidebook for Independence. Click on our logo below to take the quick survey.
Look for updates on The UPLifting Guidebook Project on our website.