Holidays with children with special needs

 

It's holiday season. Some of us get excited to receive invitations to potlucks, dinners and holiday parties. Some cannot wait for that multiple hour drive or plane ride to visit 10 plus family members in record time before heading back home right before school starts again. If you however, crinch when receiving an invitation, hesitating to RSVP out of fear you might have to cancel right before the event. If you are breaking out in a nervous sweat just thinking about driving 10 plus hours, let alone fly, to hop from relative to relative, chances are you're the parent of child with special needs. More so, if your child has sensory issues or anxiety due to their diagnosis. If you're thoughts are not "ah, it's holiday season, what a blissful time", but rather "aaaaaahhhhhhh, it's holiday season! What a stressful time!", this is for you.

 

While working for the Early Intervention Program in Minot, ND (FYI, it's NOT like portrayed in Blood & Oil) I published a newsletter. In one issue I addressed braving the holidays with children with special needs. So here are few tips that might come on handy, especially if you're new on this special needs journey.

Malls and such
Malls and stores can be a nightmare for children with special needs. The lights, the music, the crowds, it's just too much of everything. What might start out as a mesmerized child admiring the big Christmas tree at the mall, can quickly end in a huge meltdown. In a matter of seconds. If I have to get things I try to leave IJ home. However, going to the mall is kind of a treat for him so I'd take him early in the day, before it gets hectic. That way he can look at the decorations, we have lunch, and go home without it overwhelming him. Some malls offer a sensory friendly Santa in a special room without all the noise and crowds. No waiting in lines either, as you get your own time slot. Ask your mall manager about it.

 

It's OK to decline

You'll probably get more than one invitation. It's impossible to go to all of them. In my 20s I might have been able to hop from one event to another, but not anymore. It helps to evaluate which events might overwhelm your child and which might be fun. For instance, we know that large events, or events with a strict and formal schedule overwhelm our son. Unless, there is a safe zone he can retreat to, those are automatically out of the question.

 

Involve your kids

For those with older children, ask them which events they want to attend. Ask them what other things they might want to do during the holidays. Open communication is crucial and involving them gives the feeling that their opinion matters and that they're important. Even if you just let them choose which craft to do, or let them draw postcards. Involving them makes for wonderful memories they'll always cherish.

 

It's OK to cancel

I know proper etiquette may disagree here but don't let that keep you from canceling if you have to. I used to decline almost every event, out of fear people might get upset if I cancel last minute because IJ just had an epic meltdown. Not anymore. If it's a work event or an event hosted by someone who doesn't know us well, I'll tell them we're a tentative. Close friends however, usually understand if we end up canceling. It's crucial though to communicate with the host. Even if I cannot tell them before the beginning of the event, I make sure that as soon as the meltdown or seizure is over (and my child is OK), I call them to let them know. So far there was only one person who stopped inviting us because we had to decline or cancel, and I can live with that.

 

Come prepared

We don't leave the house without IJ's bag. It contains his emergency meds and anything that helps him when he's starting to get overwhelmed or overstimulated. He's not old enough yet to identify when he's getting to that point so we have to keep a close eye on him. We usually ask if there's a room or quiet area we can retreat to when it's getting too much for him. For those situations bring what helps your child, weighted blanket, favorite stuffed animal or toy, a tablet, headphones. Snacks, if your child has texture issues that keep them from eating certain foods. Whatever it may be, bring it with you. Sometimes, all they need is a short break and they're OK to continue.

 

It's OK to leave early

So you've carefully selected an event you thought your child could handle, you came prepared, you helped them regulate but it's no use. Not even the break helped. Your child won't enjoy suffering through stimulation overload, you won't enjoy the event, trying to keep your child's meltdowns at bay and the guests and hosts won't either. The best thing is to leave. Say your goodbyes to the host and thank them for inviting you and for understanding. We left church events, work events and other events early because of meltdowns. We even had to leave our family's Christmas dinner last year and we made it clear we had to leave immediately. We're open about IJ's disability and I believe it's part of the reason people have been understanding.

 

Plan for down time

The holidays can be a stressful time, for both kids and parents. TAKE A BREAK! A day in your pjs, snuggled up on the couch with a movie and your favorite snacks, relax. My kids enjoy taking the dog for a walk, even in the snow. Only because we now don't live in North Dakota anymore ;) Afterwards, we watch a movie or play a game and warm up with hot chocolate and chai. Often those are my favorite days. If possible, I recommend for parents to have some down time too. Even if it's just taking a hot bath.

 

Consider being the host

Sometimes it's a good idea to host the family gathering yourself. That way your child is in a familiar setting with a safe zone to escape to whenever necessary. You can choose a time that you know works well for your child and if you do a potluck you don't have to worry about cooking and baking all day. Family and friends tend to not care that your house may not look like a magazine spread and in all honesty, I often just make sure the "public" rooms are good to go and store anything else out of sight. I'll get to it afterwards. It's not going anywhere. I promise.

 

Are you going to please everyone by doing this? No. Will there be people whose feelings get hurt? Maybe. But the important thing is, you're doing what is best for your child and your family. I learned to stop worrying about making everyone happy. If it meant IJ having meltdowns and being a total wreck at the end, it was not worth it.  Plus, that meant nobody was having fun. It is way more important that our kids think back on the holidays as a time they enjoyed, not a time they dread.

I hope you and your family have a wonderful holiday season.
Love,
Mimi