Holiday Visits with the Special Needs Child

Being different. We don't ask for it, and we certainly don't choose it for our kids. But sometimes it happens and when it does, it changes every single aspect of everything we do. Having a special needs child changes our daily schedules - what we can and cannot do, and where. It changes the way we do things - how we prepare, how far we can travel, how long we can stay. It changes how we look at the world. And whether we want it to or not, our child's special needs can even change our interactions with the people who mean the most to us - our family and our closest friends.

Visiting a friend or relative with a special needs child in tow, especially visiting on an occasion like a birthday or holiday, can be the source of significant stress. The child has certain expectations, and if they aren't met this can lead to anti-social behaviour. The host has certain expectations, which are easily dashed when Mama and Daddy have to spend most of their time supervising Johnny, or when Johnny's table manners shock the rest of the guests. Worse still, some less than well informed guest makes an attempt to "smarten Johnny up," thinking his behaviour is the result of sloppy parenting or sheer lack of consideration - causing, of course, a total meltdown.

It is possible to bring your disabled child with you to Thanksgiving or Christmas dinner, or to a special birthday or anniversary party. It just takes a little planning some good communication with your host.

Holiday Visits with the Disabled Child: Prepare The Space

It's a good idea to visit with your host before the actual event, to help child proof the rooms to which your child will have access. Your offer may not be accepted right away, especially if your host has kids and has already made the home safe for little ones. This, however, is generally not sufficient for the older child with disabilities. My autistic son was able to climb over the side of a playpen or over a safety gate, well before he could perceive the danger in entering certain spaces. He could also open cupboards and drawers which had safety latches, and eventually even got the trick of using a key and figured out where we kept the keys!

Don't go overboard. It's just a day's visit, after all. But you may want to help your host put the breakables somewhere safe, and eliminate any temptations. It's also a good idea to designate a small space for your child to retreat to if he's feeling overwhelmed. Even a small gathering can be too much for a child who has sensory issues, or who needs a predictable routine to feel safe. A little corner in a bedroom or family room will serve well, if equipped with some familiar things. Bring a pillow or a stuffed animal, a blanket, some books or DVD's,
some calming music.

Holiday Visits with the Disabled Child: Prepare Your Child

Begin telling your child about the upcoming visit well in advance of the actual date. Circle the date on the calendar, and refer to it often. Use pictograms to represent the visit, as well as people your child can expect to see there and things he will be doing. Use social stories to help your child understand appropriate behaviours for the occasion, such as how to act on the way over (car, train, bust, etc.,) how to greet the host and proper table manners. If he is more verbal you can ask about any apprehensions he may have, and brainstorm strategies for dealing with them.

You should also discuss how the visit will alter his normal routine, and work on ways to lower tension around the changes. Favourite TV shows can be recorded, or you can arrange for him to watch on your host's TV. If he will be missing equipment he uses for sensory integration (e.g. trampoline, therapy ball, etc.) you can compensate by bringing along more portable devices such as a weighted lap pad or backpack, ankle weights or fidgets. A few days before the visit you can have your child help you pack a small bag of helpful and necessary items. Make a checklist for anything that has to be added at the last minute, so you won't forget. Think about doing a "dry run" if your child gets agitated during travel, or if he's never been to your destination before.

Consider planning activities with your host's help: board games, an obstacle course in the basement or the yard, party games like musical chairs, a walk to a nearby park to play on the monkey bars or toss around a football. Set reasonable time limits, and alternate between active and quiet activities.

If your child helps with meal preparation at home, see if your host can assign him some similar tasks to do on the day itself. Let him know he'll be setting the table, helping to make the salad, or mashing the potatoes. Also consider giving your child the task of greeting people as they come in, or of carrying coats to the spare room. Heavy work can be grounding (so carrying bags of potatoes or helping out with the soft drink cooler can be therapeutic as well!) Being the doorman gives your child an extra measure of control and makes it easier to spend the day with unfamiliar people.

As soon as you arrive at your destination, be sure to show your child his safe space, and let him arrange his things in it. Tell him he can come to his retreat whenever he needs to (arrange a code word or signal if you like, so you know he's not just wandering if he suddenly leaves the room.) If he wants to stay in his retreat for a few minutes right away, take advantage of the opportunity to get settled in, yourself, and to chat with your host. Remember to check in on your child regularly, in case he slips off to get into mischief. You may also need to invite him to rejoin the group. If he's comfortable in his spot, he may forget to return on his own!

Holiday Visits with the Disabled Child: Prepare Yourself

Regardless of how much you look forward to this visit it is still likely to be a tiresome experience. Try to keep your calendar relatively clear in the days before the event so you can focus on just this. Avoid rushing out at the last minute for gifts, food, or the perfect outfit. Plan ahead, and if you are bring a contribution to the meal try to choose something you can make at least a few days in advance.

Anything else you're bringing with you, get it packed up the night before. Lay out your clothes and the kids' clothes around supper time, so you'll still have time to do an emergency load of laundry if somebody's missing stockings or their absolute favourite sweater is dirty. Make sure everybody is in bed on time the night before - or send them early, and pamper yourself with a hot soak in the tub!

Speak to your family about the visit, and work out a plan that allows everybody to enjoy the gathering, while still giving your special needs child the attention and reassurance he needs. Siblings can often be a great comfort to the disabled child in an unfamiliar setting. My girls love to take their brother by the hand and help him get settled in. They often volunteer to check in on him, or will invite him to come read or colour or watch a movie. If you have a spouse or other adult going along with you be sure you discuss the various responsibilities you will have for all of your children, and work out a scenario that allows you to take care of everybody without either of you getting run ragged. Don't be afraid to ask your host or other guests for a hand if you need it. A lot of folks would be happy to read a book to your three year old, feed the baby, or spend some time looking through your tween's stamp collection. That frees you up to have a coffee or a wee glass of wine, or to help out in the kitchen if you like. Think ahead of time how you will handle an emergency while you are breastfeeding and your husband is out running to the store for more soft drinks. Or who will go if you're both exhausted, and neither one of you has had a spare moment to actually eat your supper.

I can tell you from experience that even in the most loving and understanding family, a child's challenging behaviour gets old really fast. Writing on the wall with Grandma's best lipstick, or repeatedly touching the forbidden electronics is not going to make anybody happy. Be prepared to be up and down frequently. If it doesn't happen you can be pleasantly surprised. Don't expect your plan to cover everything. The main thing is that you and your spouse won't be arguing over who should handle Johnny, and that you'll already have at least one person in mind for those moments when you really must ask for help.

Holiday Visits with the Disabled Child: Rest Up Afterwards

Plan to sleep late in the morning, unless you absolutely must be up. If the kids are likely to get up early, make sure you've laid out an easy breakfast they can fix themselves like cold cereal, yogourt and fresh fruit. Have a nice, easy day with minimal chores. Don't go anywhere you don't have to. Don't begin any major projects or promise to do anything for anyone. Take a well deserved break. You may not feel it right now, but you'll need it. You can go back to the hustle bustle of daily life tomorrow.

Going to a special party or Christmas dinner with your special needs child can be a stressful event, regardless of how much you enjoy the company of your friends and family, and how welcome they make you feel. We always breathe a huge sigh of relief when we get home at the end of a visit.

And most often, there is something that goes wrong or we end up frustrated with each other because we both got tired halfway through the evening, and after that every little demand from any child was a real chore - one which neither of us really felt up to facing. I usually end up tired for two days afterwards.

It's important to forgive - yourself, your child, your spouse. You're all fighting an uphill battle, so don't look for perfection. If you can figure out the things that worked and the ones that didn't, then learn from the experience and know that next time at least some things will be different.