Surviving the Holidays - Tips from The GFPD

 

The holidays are a wonderful time of year, but they can also be a time filled with stress and anxiety.  People are well-meaning when they want to include your family in celebrations, simply help out, or give gifts to your child; however, they struggle to understand the complexity of daily life for families in The GFPD community.

 

Below you will find tips to help you plan ahead for the holidays by communicating with loved ones to create a better holiday environment, establish guidelines and offer alternatives for gifts and remembering children who have passed away. 

 

Environment Challenges

  • Spending time at someone else’s house can be difficult.  The change of environment alone can and is often stressful for a child with a peroxisomal disorder, not to mention all the other challenges that come with holiday visits.

  • Stressors for your child

    • Simply being in a different environment

    • Overstimulating

    • Unfamiliar surroundings

    • Poor lighting &/or insufficient contrast

    • Poor listening environment (no carpet, high ceilings, background noise, lots of hard surfaces, etc.

    • Safety Concerns

  • Solutions

    • Katie, one of the moms in The GFPD, shared this experience…”Every Xmas Eve I go to my brother and sister-in-law’s which has nearly everything just mentioned --- Dim lighting combined with lots of hard surfaces, lots of people, a glass coffee table my kid cannot see at all--- with lit candles my kid can most definitely see--on it every year. Actually, lit candles on nearly every surface.”  

    • We asked Katie how she would handle this, and she responded, “I took a deep breath, and I expressed my concerns.  They did not hesitate to turn the lighting up---blow a few candles out. They didn’t even think that this would be a challenge for TJ, my son.  They were trying to set the mood for our celebration.” She added, “A win-win every year for everyone is for TJ to hang out in the kitchen with a brighter overhead light. He is smack in the middle of everyone but he loves it, and, so far, everyone has been great about him being right in the middle of everyone.”

    • Talking to your loved ones can be a simple solution.  They may not even realize how difficult the holiday can be for your family.  We understand that everyone may not be as agreeable and easy to work with as Katie’s brother, but starting the conversation can be a good first step.

 

  • Quiet Space

      • Find a sensory safe place

        • Is there a room you can go to where no one else is to take a break?

      • A place to change diapers

        • When you first arrive, or even before you arrive, ask your host if there will be a private space where you can change your child’s diaper.

      • Bedtime

        • Another thing to secure for your child is a safe and comfortable place to sleep when you are away from home.

        • Katie shared another story with us.  “We got an okay to have a place for TJ to go to bed whenever he needed too. We used to have to leave once he was done.  So, we started bringing bed pads with us & favorite bedtime light-up toys. Trust me---bring the bed pads---it’s the worst thing to rapidly begin stripping someone else’s bed in desperate hope they have a protective mattress pad because your teenage still in diapers just peed through. And, I learned the hard way to suggest they pass on the expensive & pretty comforters that night after my kid ruined a comforter.”

    • Making sure your family is included

      • This is another place where communicating with your loved ones prior to the celebrating can come in handy.

        • Are there any activities planned? Is your child included? How can we help include everyone, including your child?

      • Another idea is to reach out to the professionals that work with your kids.  They will most likely have some great ideas about activities that can include everyone!

    • Conversations with Loved Ones Ahead of Time

      • Have the hard conversations ahead of time.

        • Can these conversations be uncomfortable? Yes.

        • Katie shared her experience with us again.  “In previous years---at other places----I did not have these conversations ahead of time, and we all had a miserable and stressful time. It’s worth the conversation, and I’ve learned that others will help if they know how.  They usually don’t know how. It’s frustrating that we need to educate others but it’s more frustrating being completely isolated by not attending or attending but not really being present.”

      • The best time to begin these conversations is weeks before the upcoming holiday or celebration.  

Gifts
  • Gifts are a challenge.  We understand that. Many of our families have expressed their frustration with gifts from loved ones.  Typically, standard age appropriate gifts are not things that our kids can enjoy.

    • Here are some ideas.

      • Create a Gift Registry Online – It’s not just for weddings or baby showers, etc.

      • https://www.myregistry.com/ allows you to create a wish list for any occasion.

        • Login & choose a type of registry, build your list & even sync to store registries.

      • Gift cards - Make sure to give your loved ones a list of the best gift cards for your family.

      • Make a List! - Supply your friends and loved ones with a list of items needed to make a  “little space” with notes about what each item is and why you took the time to do this.

      • Include special needs toys and/or equipment​​

      • These can expensive!  So, it’s a good idea to suggest that family members can get together and help to get one large item.

  • Suggestion: Try to trial the toy beforehand. Ask your local therapist at school or rehabilitation center, or you can post on local support networks.

    • Donate items to charity or raise money for a cause close to your heart!

  • Katie has done this previously with TJ.  

    • “TJ”s birthday comes right after the holidays, and more than once, we’ve sent a list out ahead of time asking for everyone to bring an item on the list. The listing is approved donation lists for a local animal shelter. After all “gifts” are received TJ goes along to help deliver all his gifts to the shelter in need.  He truly loves this activity!”

  • This is also an opportunity to host a FB fundraiser for The GFPD - click here to learn more

Bereaved Families
  • We realize that the holidays and other celebrations can bring on an extra layer of difficulty for our families whose children have passed away.  Below are some tips just for you.

    • Gift Alternatives

      • Acts of kindness - Your family can go volunteer with a local organization.

      • Make or buy a special ornament in memory of your child - Several of our families have done this.  Check out our webinar coming soon for specific examples! 

      • Ask your friends and loved ones to make a donation in your child’s memory to a cause close to your family’s heart.

      • Send out a special holiday card - include a photo of your child who has passed in your card this year

 

These are just a few ideas that families have shared with The GFPD over the years, and we hope that experience from these families can help you and your family.  We also want to touch on gratitude.  We at The GFPD are so grateful for all of you in our community.  We wouldn’t be a community without you. This is a time of year full of celebrations and loved ones.  Even though it can be incredibly stressful and difficult time, the people around us are doing their best and want to include us, even if they don’t do a great job of accommodating.  Try to thank others who are making changes in an effort to include you and your child. Make sure they know how much this means to you.

 

If you have any additional questions or suggestions to add to our survival guide, please reach out to us at contactus@thegfpd.org

© 2018 by GFPD. Proudly created by CAZ Media Design

 Images on this site were contributed by families and may not be used without permission.

guide-Star-Seal2018-gold-grey.png
2018-Nord-Member-grey.png
GFPD-Logo.png
  • GFPD on Facebook
  • GFPD on Instagram
  • GFPD on Youtube
  • GFPD Amazon Smile
  • the GFPD Linkedin
  • the GFPD Twitter