Breathe, be flexible and communicate

Holidays can be stressful enough with family members you love to pieces but sometimes want to strangle. If you have a child with special needs, you may not be the only one experiencing anxiety. Grandparents, aunts and uncles and other holiday hosts often mean well but sometimes just aren't sure how to help.

Wallace family on Christmas

The number of children in the U.S. diagnosed with a disability continues to grow. While restaurants and bakeries have learned to accommodate restricted diets such as gluten-free items, society still has much to learn about how to help (and when to step back) when working, playing or simply loving a child with different abilities.

Parents' concerns

Autumn has a 9-year-old son with an Autism Spectrum Disorder (ASD, originally diagnosed as Asperger's syndrome). "I would like others to stop making it their mission to get the kid who wants to be alone at a party to join in on all the activities," she shares. "One nice attempt is fine, but then just stop, enjoy the party yourself, and realize some kids can't handle the center of the action and it's more complicated than just being shy."

Sometimes, Autumn points out, just being at a party is an accomplishment for a child. "Well-meaning adults try so hard to get [my son] to join in, but to him it's a lot of pressure and too much talking.

"It sets him up for a meltdown when, if he could just sit alone by himself for a while — maybe even a long time — he might feel comfortable enough to join in. If not, don't worry, maybe next time. The important thing is that it is more likely that there will be a next time if he isn't pressured to do more than he's ready for this time."

Security concerns

"Our biggest issue is safety with [my son]," shares Ashley, whose son has Down syndrome. "No one truly gets how quickly he can escape, especially with large crowds and people and other children going in and out all the time, so it gets stressful.
"

Jenny has a child with Down syndrome. "Please prepare your house with gates at stairs, locks on the doors and video cameras if possible. Just kidding, sort of, [but] please remove all breakables from reach. [I'm] serious on that one."

Parents' wish list

"My kid is quick," Beth says. "If someone isn't hovering over him nonstop, he's going to get into something. It would be great if someone would take over [kid] duty and allow me to relax for five minutes or eat a hot meal.
"

"One year, Christmas took two days. [My daughter] didn't want to unwrap, and I didn't push her."

Sometimes, the best response to stress is... escape! "My advice is rent a cabin and hide out!" says Stephanie, whose child has Down syndrome. "I think that is our plan this year. After 9 years I'm about ready to move back to Alaska!"

Corey begs for patience and a hot meal. "One year, Christmas took two days. [My daughter] didn't want to unwrap, and I didn't push her. So, people who are in a hurry need not come by.

"Oh, and dinner for me is usually cold."

Tips for parents

"I want the parent to feel comfortable and confident and be either the expert or the adviser," says Melanie Pinkett-Davis, assistant director of the Center of Autism and Related Disorders at Kennedy Krieger Institute in Baltimore, Maryland. "That parent knows that child best."

Pinkett-Davis recommends as much preparation as possible, and advises creating a list of worst-case scenarios you're most anxious will happen. "[Run] down their list of worries on a sheet of paper and then circle the top three that are most likely to occur, then plan for them to occur," she says.

Above all, Pinkett-Davis reminds both hosts and parents, "The goal is to just have fun and enjoy one another’s presence. Keep that in the forefront to reduce anxiety."

Other sanity-saving tips

  • Try to maintain your routines whenever possible but know when to let go, Pinkett-Davis says. For example, grandparents who don’t see their grandchildren often may want to plan activities when your child typically may be napping or when your child tends to be cranky.
  • "Know what’s flexible and what’s a deal breaker," Pinkett-Davis says.
  • Get on the same page. Know there will be times when you'll need your spouse's backup or even for him or her to take the lead in nixing a relative's plans. "[Discuss with your partner] 'this is what I need you to support me on, and what do you need me to support you on?'"

Tips for hosts

You're welcoming loved ones into your home for a reason — to celebrate a special occasion by spending time together. If you know a loved one's child has a disability or special needs, don't hesitate to broach the topic and ask if you should be aware of anything in particular or if you can help make the experience more comfortable for everyone.

"Host strategies are similar to parent tips in that the host is going to have to be receptive to the parent as the expert," Pinkett-Davis points out. "Be receptive to [the parents'] expertise," she advises hosts.

Some topics to cover:

  • Ideal gifts. Developmental delays may mean a child isn't ready for gifts typically suited for his or her age, so talk about ideal gifts (e.g., Is the child learning shapes? A shape sorter could be a perfect gift!)
  • What types of activities are fun or cause discomfort?
  • Does the child need to follow any diet restrictions?
  • Are there any behavioral considerations that can help a host prepare for an event? For example, a child with an ASD may need a safe, quiet place for stimming.

Perhaps the most important advice Pickett-Davis shares is simple. "Follow the child's lead! It’s incredibly important. So often you can de-escalate a situation if you follow a child’s lead and what the parent is recommending."

Sensory issues can be another consideration when preparing to host a child with a disability. Pinkett-Davis recommends talking to the parents about environmental accommodations.

  • Noise volume (Will the child need a quiet place to escape the festivities for a bit?)
  • Smells (e.g., perfume, trees, potpourri) may be either overwhelming or too tempting
  • What household items can be stored during the visit so disasters are averted? (e.g., candles)
  • Do talking or musical decorations over-stimulate the child or even scare him or her?

Ryan has three children, and his youngest is diagnosed with an ASD. As a hands-on father, he has two main tips for both parents and hosts."Timing — be flexible. Food preferences — be flexible. Excitement manifests in different ways," he says.

For parents, remember, your host may know your child has a diagnosis but may have no clue what that actually means or what he or she can do to help you and your child feel more comfortable.

Pinkett-Davis recommends that parents and their hosts talk about the following:

  • Sensory issues
  • Fine motor issues (remember, not everyone understands what "fine motor" means)
  • Destructive behaviors
  • Aggression (e.g., let the aunt that gifts all her nephews with sports paraphernalia know that a gift of a baseball bat may not be ideal)

Don't forget the siblings

"When it comes to siblings, you may have to let them follow a different set of rules," Pinkett-Davis advises. "You don’t want to limit their fun, so maybe it’s OK for the sibling to engage in an activity they might not normally do."

Pinkett-Davis says, bottom line, "You want the sibling to have an opportunity to have fun and not feel like they’re being denied because of their sibling [with special needs]."

image credit: Maureen Wallace

Read more about surviving the holidays

Helping children with sensory challenges enjoy the holiday season
Holiday tips from parents of children with autism
Choosing special gifts for children with special needs

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