• Steve Friedman

The Rough Edges of Independence

Updated: Apr 29

10 Pitfalls to Prepare for in Advance


We may plan for years for independence for our adults with Down syndrome by providing decision-making and choice power at home, staying home alone, going to work, or moving into their own living community. But despite best planning, there will always be hiccups. This really should come as no surprise. Recall your own steps into independence or those of your other kids. You may have forgotten to set a wake-up alarm or accidentally tried to microwave a fork, or had a parking lot fender bender. But enough about my other kids,


We must remind ourselves the objective of independence for any of our children is to build experience, decision-making skills, and self-awareness. These don't happen just by getting everything right but also by making some mistakes or forgetting some steps along the way. With proper oversight, these mistakes turn into valuable learnings for everyone.


The challenges may be magnified for our children with Down syndrome. Do you remember that carefree attitude, the blatant and joyous disregard for societal norms that our kids have had seemingly since birth? Well, these can pose problems when they are expected to complete certain tasks as independent adults.


Our daughter, Gwendolyn, has been on her independence journey for over five years now, culminating in her move out of the house and into an incredible living community last fall. We are so proud of her progress and thrilled with the facility and staff as well. But, despite years of planning, there have been challenges along the way. You may anticipate some of these for your child's journey, so perhaps this list gives you a headstart.


1. Inconsistent hygiene: without mom and dad reminding her to brush her teeth and shower, and to monitor that these are actually done correctly, these can become inconsistent. These aren't fun for anyone and our adults with Down syndrome may not be especially driven by societal norms.

SOLUTION: discuss the importance, include them on a daily checklist of these and other activities to act as reminders. Alignment amongst parents or staff on expectations and timing of each is important for checklist enforcement.


2. Taking meds: this can be an oversight or dislike for the taste of a med or the size of a pill.

SOLUTION: checklist, adjustment to flavor meds, cut pills or replace with liquid meds per Dr/Rx approval. The caregiver must meticulously distribute all meds.


3. Money: with independence comes the need for money management. Gwendolyn may carry a small amount of cash (<$20) and a Debit card. It's a great independent step but can be abused, perhaps unknowingly. Our daughter once donated thousands of dollars to her school on behalf of one of her classmates who was trying to win a contest. Her intentions were good but her actions were not. Luckily, we found out and were able to cancel the transaction in time.

SOLUTION: explain and practice Debit card use. Avoid Credit cards or unlimited Debit cards. Monitor spending online including notices to you when transactions occur. Teach them how to use their cell phone calculator to determine costs and expected change.


4. Cell Phone Abuse: most everyone has a cell phone these days and our adults with Down syndrome should be no exception. They provide communications, security, and peace of mind. However, they can also lead to surfing inappropriate sites, contact by predators, and malicious SPAM, not to mention excessive social media use including overindulging in Facebook and Tik Tok This can lead to neglecting responsibilities, being late for classes or other obligations, and sacrificing real social time with friends.

SOLUTION: monitor phone and internet usage, limit access to certain sites for particular times of day, or limit cumulative daily use on certain sites.


5. Laziness: without constant supervision, it can be easy to skip a class or work in lieu of a nap or social media. We've all wanted to play hooky from school or work sometimes but our judgment usually deters us.

SOLUTION: our adults with Down syndrome need checklists, calendars with cell phone alarms, monitoring by staff, and yes, some built-in downtime. Mid-day naps may be an indication an earlier bedtime is necessary or perhaps an issue regarding meds to be raised with doctors.


6. Social drama: while many with Down syndrome can be quite social, every social group can have its problems. Clicks form, pairs/couples, and BFFs form. For those excluded, or when those relationships hit a rough spot, it can be hard to understand.

SOLUTION: encourage diversity. Expose your child to many groups and people through a variety of classes, social groups, and activities. Talk about how everyone has a bad day and all relationships go through some rough spots. Be sure he/she has someone to bend an ear to (parents, siblings, staff, therapist) to work out these feelings. Though they may spin it that others are not being nice, everyone usually participates, sharing some blame, and thus can step up and be nicer and friendlier in most circumstances.


7. Honesty: somehow, even the kindest, sweetest, people lie. Our daughter has insisted she brushed her teeth but the dry sink suggests otherwise. She can emphatically state she only eats healthy but her weight and staff reports may counter that. She takes daily showers before breakfast but staff reports that she sleeps in or skips the shower dispute her assertions. I don't think she is being malicious. She just doesn't always like to do what she is supposed to do and fessing up is not a preferred conversation.

SOLUTION: certainly instilling a sense of right and wrong from an early age and celebrating honesty is critical. We think we've done that yet lying can still be a problem. More conversations, checklists, and alignment with staff through calls and visits, are helpful. Incentives and disincentives like taking away privileges can also be used. Best to nip these in the bud when you can.


8. Overeating: without the watchful parental eye, overeating or bad food choices can be frequent.

SOLUTION: work with the staff to regulative her diet and snacks. Usually, they offer options and limit portion sizes. Many facilities weigh regularly. Offer nutrition courses or advice to your adult. Ensure thyroid medication, if applicable, is being regulated.


9. Homesick: chances are your adult with Down syndrome has been with you practically every day and night for decades except perhaps for a summer camp here or there. So despite selecting a great facility and being prepared and excited, moving out is a dramatic change. Gwendolyn's facility allowed calls/FaceTime but no in-person visits for the first six weeks to help her acclimate and shift her support network to the staff on campus. This definitely helped the transition. When she stays at our house (about once per month) she knows this is a vacation but not her home. She is anxious to return to her bed, surroundings, and new friends by Sunday.

SOLUTION: temper visits and home trips so they understand their new place is their home. If they miss their old friends. arrange some time together when they stay with you and emphasize they don't have to drop friends, but gain more friends.


10. Security: this is the most critical item. Our adults with Down syndrome need to understand when it's okay to talk to others and when it's not, when to invite others into their apartment or room and when it's not, and when to choose to call for help. While everything on this list may be sacrificed a bit in the pursuit of independence and growth, security should not be.

SOLUTION: beyond conversations, role plays, and practice, be sure to select the right housing option at the time. If they are still working on these items, then living in one's own apartment is likely not a viable option. How you assess your adult's preparation may determine which facilities may work. Many places keep a close eye on residents and "guests". But do they have a fail-safe sign-in process? Are there security gates around the property? Is 24/7 supervision provided? Security can be taught and learned, but should also be tested to ensure an appropriate level of independence is provided.




The most common themes amongst these solutions for these challenges are checklists and communications:

(1) Checklists: develop lists or steps with your adult with Down syndrome. Make sure it is written in a language they understand. use drawings, pictures, or stickers if that is helpful. Be sure either you or the facility staff validate the checklist being used. Follow up with the checklist and update as appropriate. Post the checklist in a convenient place (bathroom, bedroom, by the front door for security).


(2) Communication: this is critical with your son or daughter and with the staff where they live. Form a support team that remains aligned on expectations, monitors progress, and makes adjustments together. Team Gwendolyn includes parents, 24/7 staff, supervisors, on-site nurse, therapist, and of course, Gwendolyn herself. Periodic meetings, especially early on or when issues arise, are critical. Nip issues in the bud but also strive to keep it positive. This is a big change for your adult with Down syndrome. You want them to learn and grow and stop bad habits, but also to be proud and feel like their independence is blossoming, not that the grip of parents and staff are getting tighter.



Conclusion

Independence doesn't happen at age 16 or 18 or 21. Preparation to move out doesn't happen at 20 or 30 or 40. These take work, practice, and mindset shifts that can start when they are toddlers. Being aware of these 10 pitfalls can help smooth the transition so the road to independence has fewer rough edges.






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