Cooper’s Guide to Surviving the Holidays with Autism

The holidays are here! And wow are they stressful. Non-stop events, travel, shopping, expectations, etc.

As much as I love Christmas time I know I always breathe a sigh of relief when January rolls around. One element that makes it more challenging is having a child with a disability.

My son Cooper simply can’t go most places. Restaurants are not an option. Crowds, noise, being away from home and expectations are very challenging for him.

Because of all that we had to implement some tough decisions when Cooper was three.

Our son had autism. That changes everything. We couldn’t travel long distances. We couldn’t just ‘stop’ by a Christmas party. We couldn’t always attend holiday gatherings at family and friends homes.

We’d have to weigh our options before attending. And yes, that hurt a lot of feelings at first.

Christmas 2017

Now that Cooper is a bit older we have started attending more holiday events. We still get anxious and know that most events will end in disaster. But we try. We go. We educate. And this mama has learned a lot over the years.

My number one piece of advice for families with autistic children is speak up and be honest. If you can’t go, you can’t go.

Obviously, be kind and loving, but don’t worry about hurting people’s feelings.

If your child can’t happily and safely attend then people that love you will understand. When my son was first diagnosed we would attend holiday gatherings outside of our home and they would all end in disaster. They were just too much for my son but I was scared to speak up in fear of hurting other people’s feelings.

We would go, have a terrible time, fight with each other, cry over the bad time, and vow to never go again. And to make it worse, our son would be dysregulated for weeks after.

Once we finally got more comfortable advocating, we began to tell family members that we would gladly host any event in lieu of attending.

Yes, some people’s feelings got hurt. Nevertheless, it had to be that way. It was best for Cooper and everyone involved. Speak up parents! If you are fighting with your spouse in dread over bringing your child to someones house than something needs to change.

Our family has been there. It’s awful.

Also, I’ve learned that when we do attend events, the hosts want to help us out as much as possible. But, remember, they most likely don’t life in our autism world so they need suggestions and guidance.

Here are my tips for navigating the holidays with autism:

Call Ahead
Call ahead and ask questions and offer suggestions. What is their WiFi Password? Is their yard fenced in? Can your child wander throughout the house? Do they have pets? Think of dangers or even precious items they may want to put away. My kid wanders. I can’t stop him. I call ahead and tell people to lock the bedroom doors if they don’t want their beds rolled in. Put their knick knacks away because they will be thrown.

Speak Up
You know your kid. You know how long they will last and the signs of a meltdown. You know they most likely won’t put their iPad down or eat the prepared meal. And that’s OK. Your host may not know though. Tell them to avoid confusion, frustration and hurt feelings. We once had a host get very sad that Cooper wouldn’t sit with us for dinner. She thought it was rude and told us so.

Don’t Be Afraid to Leave
Tell the hosts that you may have to leave suddenly. Our family has never once stayed until the end of an event/holiday/meal, etc. When Cooper is done we are done. We have to leave. By telling the hosts up front their feelings won’t be hurt. I remember before we knew he was autistic I would spend most events following Cooper and eventually holding a wiggly, screaming Cooper. We would feel so bad about leaving that we’d stay too long and it always made for an even more terrible ride home. Now, we know Cooper’s signs. We also know he typically lasts three hours. That is his limit. And then we go.

Be There for the Important Parts
I like to always ask about the itinerary for the event because I know we will only be there for a short period of time. Is Santa coming at 4? Are family photos at 5? Which parts are really important to us, the host and family? I always try and make it work for everyone.

Bring Snacks, Drinks and Comfort Items
Bring foods and beverages that your child likes. Don’t waste your time trying to feed them other people’s foods. We all know that won’t work. I bring Cooper a cooler everywhere we go with gluten free snacks, foods and his drinks. I bring his Kindle and a back up technology option like his favorite DVDs. (Make sure the host has a DVD player! We’ve brought one before!)

Have a Backup Person
In my case this is a spouse or a grandparent. My son is a wanderer. This means I never get to sit and talk and enjoy the holiday. I am typically moving about a stranger’s house and feeling isolated. Have someone take turns with you. Then it will not feel so isolating.

Drive Separately
My spouse and I drive separately to events whenever we can. This means that one of us can stay with our other son long after Cooper is done. This has saved so many tears and fights all around.

Know Your Kid’s Triggers
My son gets very anxious over laptop computers. If he sees one he will obsessively try and use it until he has a full blown meltdown. Or maybe your child is afraid or even excited by cats. If yes, let the host know. Our family knows that laptop computers need to be hidden before we arrive. They know that kitties make Cooper anxious. They know to lock their front doors. They know that Cooper is obsessed with the lights being turned off right now. We try to be as honest as we can about Cooper’s behaviors. It takes away any surprises.

Lastly, don’t feel guilty offering suggestions on how to make events successful.

Remember, most people don’t live in our autism world.

I’ve also found huge success in giving people a heads up to my son’s autistic behaviors. For example we always let guests know that a naked Cooper might run by at any time. Or that Cooper is allowed to have his Kindle at the dinner table.

We also let them know that Cooper may sit under the table and touch your toes while eating.

We don’t make excuses any more. We now longer spend events on edge. And we don’t apologize.

Instead, we educate, inform and spread autism awareness. I find so much peace and joy in doing it that way.

On top of all that, I always find the holidays to be incredibly emotional because my son is mostly oblivious.

He doesn’t care about presents, traditions, decorations, etc. It’s very emotional to see him alongside of other children the same age. He often isolates himself at the holidays too. It’s just too much for him.

That’s hard on a mama too. Seven years in and I’m finally getting used to it.

And then this year, we had a huge win. Cooper’s been asking me for over a month (with his talker and pointing to pictures) to meet Santa. As his mom I know he can’t do a public visit. He’s not ready yet. It would be too much pressure.

So, when your son can’t go see Santa…you bring Santa to your son! Santa stopped by our house yesterday for a quick visit.

This was perfect.

Relaxed. Calm. He was able to run, cover his ears, wave, roll, squeal, take his time to feel comfortable, and eventually hug the big guy. Perfect. T

his is Cooper’s first time meeting Santa! And he loved it! Merry Christmas world!

https://youtu.be/3yef2wCxal0

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.