Recently we asked some folks in our disability community groups the question, “Now that the holiday is over, what was helpful and what was not.”
Navigating Holidays as a Family Affected by Disabilities
Here are just a few experiences that were shared along with some of our thoughts surrounding them:
HELPFUL:
Keeping a schedule that works best for our family. It is okay to pull back on others’ expectations and plans. Not everyone will understand, and that is okay, too. Our loved ones with disabilities and our family as a whole spends a lot of time and energy in everyday life figuring out how to fit in and appease extended family, education professionals, therapy professionals, medical professionals, and people around us in public arenas (like restaurants, grocery stores, etc.). It is exhausting. It is important to pause and think through what would be best for your loved ones during the holidays.
Giving Space for the journey from dysregulation to emotional regulation. One mother shared that she was able to help her child find a place to give him an opportunity to come down from a meltdown on his own time without an audience. The holidays are overwhelming for a sensory sensitive person. Finding a place to be able to come back to a safe emotional place is such a great idea.
Someone giving the gift of help so I could get a break. Parents of kids with disabilities (whether these kids are children or are adults) often do not get breaks, especially during the holidays. They still have all of the holiday things to do and then adding the caregiving of a loved one with disabilities can leave parents depleted. The gift of helping these parents in a way that actually lightens their job a little and that is suitable to their situation, is golden.
NOT HELPFUL:
Gift givers not asking us what works best for our child’s needs. As we have grown in our role as grandparents, we have realized that it is important to ask our children what is helpful for us to give as gifts to their children. This applies even more to the family affected by disabilities. Some of us like the element of “surprise” in gift giving – but, trust us, it is way better to check with the parents or caregivers first before spending the money and making the effort to purchase something for the individual with disabilities.
Doing too much hosting. Parents of children/adults with disabilities sometimes just want to be able to do what everyone else is doing to create family memories. Sometimes, we catch the hosting bug and we can bite off a little more than we can chew. Take it from the mom who shared this unhelpful stress on their family. She mentioned that “It was too much on all of us and I’ll make quieter plans next year. “
Comments about what my child SHOULD be doing – not taking into account their special needs. Isn’t it interesting that outsiders (and that may even mean extended family – grandparents, aunts, uncles, cousins, etc.) think they know what our children “should” or “should not” be able to do? Sometimes, in their own discomfort and their desire for the child to be “normal” in their own definition of that word, comments can be made about their expectations of that child’s behavior and what you should expect out of them.
CONCLUSION:
Find the BEST way to DO you! Our lives are full of trials and errors. It is okay to put a toe forward toward trying a new tradition if that is what you want to do. We live and learn. The bottom line is that, as a family affected by disability, it is good for us to find the best way to DO us and not feel guilty about it.
If you would like to have a conversation to brainstorm how you might implement some of these ideas, we are here for you. Email us at Champions4Parents@gmail.com or text us at 410-746-9010 and let us know your desire to connect. We can meet by email, telephone, Zoom or in person if you are local to Central Virginia.
Much love,
Tom & Julie Meekins
CONNECT WITH US:
We invite you to connect with Tom, Julie, and Amy through:
Email: champions4parents@gmail.com
Phone: 410-746-9010 (Voice or Text)
Facebook: facebook.com/Champions4Parents
Don’t forget our website: Champions4Parents.com
And check out Amy’s websites at
AmyChristineMeekins.com
Amystories.wixsite.com/heartrecharge
If you would like to support us financially as we provide love and support to Parents and Caregivers as well as Ministry Folks who serve families impacted by disability, we invite you to our donor page on our website: Champions4Parents.com/giving
