Jamey Helgeson: 9 happy holiday tips for people with disabilities and those who love them
Published 5:25 pm Friday, December 16, 2022
The holidays are a time of joy but they can still be a time of stress. New foods, fancy clothes, schedule changes, sparkling holiday lights and too many choices all add strain to the holidays. Let’s look at how you can minimize holiday stress while celebrating the joy and wonder of Christmas with your loved one with an intellectual or developmental disability (I/DD). It’s a balancing act that you’ve likely been through multiple times. Here’s a reminder and some tips to keep your Christmas celebrations festive and sane.
Talk to your loved one: We can’t say it enough. Involve your loved one with I/DD in holiday planning and decision-making. If activities and choices include them, make sure you involve them in the conversation, but keep it age-appropriate.
Prioritize traditions: The holidays are a time of celebration and joy. Enjoying special foods, activities, or decorations with family and friends is often part of a tradition that many of us treasure. But, even in the best of times, we can’t do it all. Speak with your family about favorite traditions and prioritize the top two or three.
Avoid triggers: Parents and guardians often understand their loved one’s triggers better than anyone. Triggers can include a new situation, specific foods, new people, loud noises, or something unique to your loved one. Taking potential triggers into account when planning for holiday activities and traditions will go a long way toward minimizing inappropriate behavior and even meltdowns.
Keep it comfortable: Family or societal norms often demand that we dress in our finest for special occasions. While Christmas may call for a new holiday outfit, consider whether your loved one finds clothing with more structure to be uncomfortable. Maybe new outfits are stiff or scratchy. Imagine discomfort grating on you all day. If dressing for the holiday is a must for your celebrations and traditions, talk to your loved one about their specific clothing preferences. Armed with this understanding you can balance their preference with clothing choices that fit the occasion. You may find they love to dress up, but dressy clothing that doesn’t fit is uncomfortable. You might only need a tailor.
Schedule, schedule, schedule: Holidays disrupt everyone’s schedules. At the same time, and as you’ve probably experienced, people with I/DD tend to thrive on routine. Stick with your routine as much as possible. Continue regular, healthy meals; don’t skip time set aside for physical activity, and follow regular sleep schedules as much as you can. When it comes to celebrations, make every effort to plan them around your existing routine. If you must disrupt your loved one’s routine, try adjusting their schedule by a few minutes every day leading up to the “off schedule” celebration. Alternatively, you can add the celebration to your daily schedule and use the time to prepare for all the celebration will entail. And don’t forget to schedule some downtime. We all need time to decompress every day, and especially throughout the busy and active holidays.
Manage expectations: Talk to your loved one about what they will experience. Whether it’s new people, places, foods, sounds or other experiences, talk about what they can expect, discuss their concerns, and prepare them with expected behavior.
Plan for transitions: Transitioning to new activities or from exciting or beloved activities can be challenging for all of us. Whether thrilling or difficult, you can help your loved one transition from one activity to another by preparing them in advance. Share the schedule so they know what comes next. Provide an advance notice for upcoming transitions with a minimum 10-minute countdown or more depending on their needs. Simple cues such as, “We will leave in 15 minutes,” or “We have only 10 minutes left,” help to prepare your loved one for the coming change.
Be prepared: Think ahead to all that might go wrong and right. Be prepared by planning for a quiet space, whether at your home or someone else’s. Do you need to bring headphones or sunglasses? Should you plan downtime or an exit strategy? Think about the menu. Will your loved one have options, or do you need to bring a few favorites? Consider potential challenges and come prepared. You may even need a reward or kind words for your loved one when they come through the celebration without a single mishap.
Take care of yourself: As a caregiver, holiday preparations add to your workload. Make sure you get enough sleep, eat well, exercise, and plan time for yourself as well. If you’re stressed, holiday celebrations can become exponentially more difficult for you and your loved one.
Finally, when planning for the holidays, remember, less can be more. Sometimes our greatest experiences and fondest memories come out of quiet times alone with loved ones. Don’t miss out on the opportunity to experience and treasure quiet moments in the hustle and bustle of holiday celebrations.
Urgent Action Needed
Right now, Congress is negotiating its “end-of-year package,” a bill that includes money to fund the government and that has the power to uplift the health, inclusion, and civil rights of people with disabilities.
All year long, advocates from The Arc have been fighting for critical programs and life-sustaining priorities for people with disabilities. Don’t let people with disabilities get left behind!
Decisions are being made NOW, and the last votes of the year will happen in the next few weeks!
Contact your members of Congress and urge them to include the following priorities:
Increase asset limits for people receiving Supplemental Security Income (SSI) so people can save for emergencies instead of being forced to live in poverty. The asset limit has not been updated since 1989!
Make the Money Follows the Person (MFP) program permanent to assist people with disabilities and seniors to move back home after time in a nursing home or congregate setting. This program has already helped over 100,000 people move back home, but it needs to be made permanent.
End the use of torture devices at the Judge Rotenberg Center in Massachusetts. This is the only place in the country where people with disabilities are shocked using electric shock devices.
Act now to #UpdateSSI, #FundMFP, and #StoptheShock!
Take Action now at https://tinyurl.com/UrgentActionNeeded
Sunday: WWE Holiday Tour
Monday: Youth/Family: Holiday Cookie and Ornament Decorating
Wednesday: Special Olympics Bowling and Young Athletes
Thursday: Adventures In Learning: KSMQ Broadcast Center Tour
Dec. 27: Pizza Party and Games
Dec. 28: Special Olympics Bowling and Youth Bowling
Dec. 29: Goodbye 2022, Hello 2023!
You can see the full calendar at https://tinyurl.com/LIFEMCCalendar