The holidays can be hard for many families, but they are especially difficult for children who are medically complex or have disabilities. When every day is already challenging, adding on visits with relatives, fancy meals, changes in schedules, lots of presents, and parties can be a recipe for disaster.
So how do you survive the holidays? Here are some tips.
1. Learn to say no.
The most important key to surviving the holidays is learning to say no. It is perfectly fine to turn down parties that don’t work for your family, decline to host a family gathering, or even refuse to attend one. You need to prioritize your child, your family, and your child’s needs.
A handy strategy is the “No, but” strategy. When something won’t work for you, suggest an alternative. If your family wants you to attend a party from 7-10pm and your child needs a whole set of medical procedures at 9pm, you might suggest either leaving early or moving the entire party earlier. If a Christmas church service won’t work at all for your child, suggest getting together before or after.
It’s also important to say no if you are overwhelmed and simply don’t have the energy or strength to attend or host an event. Don’t overschedule yourself or your child.
2. Make a gift wish list with your child.
Many kids with disabilities cannot play with a lot of regular toys and may not even do well with regular clothing. As a result, they are often given piles of useless (and germ-gathering) stuffed animals or impractical clothing. Some children with feeding tubes, allergies, or other conditions may also be given foods or candy they simply cannot have.
Be upfront about what your child can and cannot have. Make sure relatives know what foods are off limits and what types of toys or other items are unsuitable. It may be useful to make a wish list with your child that includes specific suggestions for items they want or could use. Most friends and relatives will appreciate the guidance and would prefer to give something that will be valued. Make sure to include items in a wide span of price ranges, especially since so many products marketed towards kids with disabilities are expensive.
Many large retailers, such as Target and Kohl’s, are now carrying adaptive clothing lines. Target often carries a range of specialized items for kids with disabilities, from holiday-themed costumes to sensory products in their Pillowfort line. These are great options for lower cost, specialized items.
3. Stay on schedule and in your normal routine.
Many children with disabilities rely on schedules, either as a coping strategy or for medical reasons. It is critical to keep your child on schedule during the holidays as much as possible.
This may mean leaving an event early or arriving later to accommodate tube feedings or respiratory treatments. It may mean putting your child to bed on time, even at Aunt Sally’s midnight party.
Keeping kids in their normal routine is incredibly helpful in avoiding meltdowns and keeping medical issues in check.
4. Learn how to respond to comments.
I can pretty much guarantee that at least one friend or relative will say something insensitive — or downright nasty — at some point during the holidays. And, more often or not, that person is also overly judgmental or just plain ignorant. Plan in advance how you are going to handle comments.
One good strategy is to educate. Give the commenter a pamphlet or an article on your child’s condition. Invite him or her to watch you care for your child. Education can go a long way.
Another good strategy is to be prepared with vague comebacks, such as, “We are following our doctor’s recommendations,” or, “We will consider your suggestion.” Many people are well-meaning but just don’t know what they are talking about.
Lastly, if someone won’t stop commenting, it’s OK to let him or her know that you are upset and to stop.
5. Figure out how to deal with food.
Lots of holiday traditions revolve around food. For kids with feeding tubes, allergies, GI problems, and numerous other conditions, food can be a big problem. Try to make a plan in advance how you will handle dinners, snacks, and parties.
You may want to bring your own food or a special treat — such as a lollipop — that your child can have. If your child can’t handle being around food it all, it may be wise to arrive after or leave before the food part of the celebration. It’s also fine to remove your child for a time if necessary.
6. Figure out accessibility.
One hard thing for many families is that holiday events tend to be held in non-accessible places. Relatives’ homes are unlikely to be fully or even partially accessible. Religious facilities such as churches and synagogues are not required to be accessible, either.
You will need to figure out ahead of time how you can get your child into the building, and how you will handle other needs, such as diaper changing, charging equipment, or finding a space for medical procedures.
And if you can’t make it work, go back to #1 on this list: just say no.
7. Prepare for sensory issues.
The holidays are over-stimulating for all kids, but they can be even more over-stimulating for children with sensory needs or other disabilities. Preparing in advance can be really helpful. Ask relatives how many people will be at a gathering, what the plan is, if the room layout will be changed (especially important for kids who are visually impaired), or if there will be decorations.
If the event cannot be toned down, prepare ahead of time with noise-canceling headphones, sensory aids, or a weighted blanket. It may also be useful to make sure there is a place your child can escape to if things become overwhelming.
8. Alter your traditions.
Some traditions just don’t work for kids with medical conditions of disabilities. If your child can’t unwrap presents or eat candy, it may be wise to rethink gift giving and stocking stuffers. Find new traditions that incorporate your child’s strengths and desires. For example, if your child has behavioral challenges, try to create some traditions that don’t require as much behavioral control. If your child can’t eat, find other ways besides family meals to celebrate the holidays.
Of course, it can be really hard to convince other relatives to join you in your new traditions. Many will push back against changing long-standing traditions. If they give you a problem, refer to #4 and figure out how to deal with their rude comments.
During the holidays it is especially important to make sure both you and your child are getting enough rest. Take breaks and time for yourself. Make sure your child has breaks and time to rest. Don’t be afraid to leave an event early or take a 30-minute break in the middle of it. You need to take care of yourself and your child.
10. Lower your expectations.
No holiday is ever going to turn out like you want it to, even if you have the most perfect storybook family in existence. Don’t expect perfection or anything even close to perfection.
For some families, getting through the holidays may be as much as you can expect. For other families, changing holiday traditions may make the season not feel the same. That’s OK. Instead, try to find the blessings in the season, whether that means seeing family members or celebrating your child’s inchstones.