What to do when your adult with Down syndrome feels sluggish
We all plateau at times. We get kinda sluggish, stuck in a rut, losing some energy. Our teens and adults with Down syndrome feel the same sometimes.
When I get stuck in a rut, I try to recognize it and decipher why I feel that way. Do I feel let down or disappointed by something I did not expect or that didn't go as planned? Do I feel like there is no real spark in my life - things are boring or humdrum?
Again, these are all legitimate feelings for us and for our teens or adult with Down syndrome. They do have the same human emotions as everyone else. They just may not show it the same way and they certainly won't vocalize it the same, if at all.
Therein lies the danger with our kids and any mental or emotional state. They can't figure issues out easily and we often don't even know it is going on.
Signs they are plateauing:
Not excited anymore about activities
Don't do their homework or work well or efficiently
Others (teachers, boss, family, friends) remark he/she doesn't seem him/herself
Doesn't do chores as normal (cleaning, showering, others that usually don't require reminders)
Doesn't talk or communicate as much as usual
Remember when your kid(s) were younger? It seemed that whenever we parents were completely exhausted and frustrated by a particular phase, our kids would move on to a new and exciting, praiseworthy phase. This certainly happens with our kids with Down syndrome, albeit at a slower pace or more spread out intervals than our other kids, but it happened. We had to be diligent to exhibit new skills over and over again, and we had to be patient.
Even as adults our kids are developing. In fact, I think they can continue to develop even longer than ourselves because their slope or rate of accelerated learning is often just slower, but their cap or ceiling remains high.
As adults, our kids aren't transitioning now from crawling to walking, but from dependent to independent. They are developing complex communication skills and relationships. These are not easy tasks. So keep an eye on them, talk to them, help them with new skills to ease their frustrations so they can move off that developmental plateau.
Not only do they feel frustrated, but they may also feel bored or at times overly challenged.
Their progression from crawling to walking was somewhat natural albeit stunted, as was their progression for many to talking or writing. They see these activities from peers and role models. They want it, we nudged them along, and they eventually pushed through those plateaus.
It's not as easy as adults. We may not nudge them to be more social or independent. We may be exhausted from decades of nudging or actually happy for them to just hang around the house instead of asserting their independence. Yet without our nudging and support, they will not conquer these advanced plateaus.
If they don't, eventually they will give up and they will miss out on the growth and further temporary plateaus that live further down the road. And they'll miss out on the 'beaming-face' pride we all adore on their face when they are full of pride from a new accomplishment.
So how can we help them?
Identify and find new mountains to climb, even if they are scary for them
Get resources (teachers, mentors, social services, therapists)
Talk about your own reluctance or fear with your spouse, the family, your adult with Down syndrome, and/or a therapist too. For us to be quality resources, we need to be on solid ground ourselves.
Our daughter graduated high school in 2014. Gwendolyn enrolled in a full-time educational and social program for adults with Down syndrome immediately thereafter. That change provided her with the challenges and support she needed to move on from the high school plateau that formed during 4 years of the same people and learnings.
About 2 years later we recognized her signals as she yearned for independence. We all talked a lot to understand her definition and how we could support her dreams. We began working on skills (hygiene, cleaning, cooking, communications) to help her.
Four years ago we helped her gain part-time employment to boost her skills and confidence and keep her challenged.
Now, it seems like she is plateauing again. Even before COVID, she has been sluggish at times. We determined she was ready (and we were too) to support her move to a semi-independent residential program.
We searched in 2019 and pre-COVID 2020 and resumed that search in 2021. She is now on the waiting list for an awesome program. She is excited, nervous, and ready, to take the next leap, off this plateau and into the amazing world of greater independence. She is ready and she needs it. We've selected a place that can provide her with further growth through greater independence, learning, sociability, and work so that it will keep her moving forward, jumping off those inevitable plateaus as they arise.
Observe, recognize plateaus, communicate, and find their next challenge!
I'm thrilled to announce 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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