Category: autism holidays

At our last autism support group meeting, one topic that came up was how to deal with the comments – the stares – the outright rudeness of some people when our children with autism might act “different” than others while out in public. Or even at family/friend functions. How do you handle the questions, the comments. How do you not feel like crying when someone is mean to your child?

It really is one of the hardest parts of autism to handle. Just being a parent makes you want to protect your children from mean people. Add in the autism (cause, you know, someone different either brings out the best or the worst in people) and it can be so tough. And, unfortunately, it seems the mean people always find you on days where you are already stressed and near tears. The holiday season just adds more stress and more opportunities for those “helpful” people to make you want to cry and never leave home again.

Don’t let them do that to you! Your family has just as much right to be at every activity as everyone else. Yes, it’s hard. Yes, you will get mad. Yes, you will cry. And yes – you will eventually develop a thick skin and will learn to let those comments roll off your skin. You will also learn to give a death stare to people. Most people will look away quickly once they realize you overheard their nastiness and don’t care. Besides, you can always hope karma gets them later. (yeah, maybe not the nicest thing to think, but…. it’s better than smacking them yourself!)

So back to our meeting. I felt so bad for one young mom. She has a little guy (that’s his picture with the blog) and took him to a Christmas activity. It was crowded and overwhelming. This poor mom heard the comments about her sweet little boy. Instead of helping her – or encouraging her for being brave enough to try – people weren’t kind. She took her son and went home ready to cry. Her comment was she thought she would just stay home from now on. Been there, felt that so often. I’ve cried leaving places. I’ve cried once I got us all safely home and could hide from the kids. I’ve ranted to myself. It took years, but I have that tough skin.

It’s rare now that someone’s comments get to me. It does still happen, though. Not as bad as it used to – and usually, if a comment hurts me, it comes from someone that I never expect to make such a comment. It takes longer to develop that thick skin around family and friends, but your first priority is always your child. Some families take a little longer to learn how amazing your child is.

Another mom and I shared that we knew how these young moms felt. We understood how hard it is to let the world see your child and not know if the world will love and accept him/her or will be cruel. We also know it’s important for your child to be able to explore the world. You will never know what your child might like if you don’t try. It may take several tries before you know for sure. It might mean you try and then wait a long time to try again. Only you will know, but – don’t let the rude idiots of the world scare you into staying home.

I’ve lost my temper with a few people who made comments about Casey and Rob. I’ve (not my finest moment) yelled at people in stores. I’ve stopped moms and embarrassed them by telling them what little jerks their children were to mine. I’ve developed a death glare for those that I catch staring. I’ve ignored some people. I’ve replied to some comments by saying “Thank you for showing me there are worse things in the world than autism. My child could be rude and mean like you.”

Remember, I’ve been doing this for more than 30 years. It takes a long time to learn to ignore what other people say and think. You will get there, though. Keep trying new things. Meet new people. Learn to glare. Learn to stand up to bullies. Remember that no one’s opinion really matters. You can do this. I’m sure of it.

If all else fails, ask a veteran autism parent to go places with you. You can learn from the best. 🙂

So many wonderful Christmas traditions involve large, loud gatherings or crowds at stores. When you have someone with autism, those are definitely not places you want to be (well, you want to be there, but it’s not always possible!). Sensory meltdowns are real and can ruin a day quicker than almost anything.

We never had huge holiday parties. My family is small and everyone understood if Rob or Casey needed to run upstairs to my or my brother’s old bedrooms for some quiet. So telling people we weren’t coming to their party wasn’t an issue when Casey and Rob were little. It’s actually more of a problem now. People just don’t seem to understand that just because they are adults, the autism didn’t go away. They still have the same needs – they are just more capable of handling sensory needs now. But – that took us years of practice, years of finding what they needed, and years of hiding from the world.

We started our own traditions. I absolutely love holidays and birthdays and always want them to be special. I had to figure out how to give each of the kids a special time – within their abilities. It wasn’t always easy, but I think I managed to do it. Now, Casey and Rob are both more willing to try new places (especially if Mandy and Cory are with us!) but we still need to be aware that crowds will get to Rob quickly. And that noises (like fire trucks in a parade) are painful to both of them. She is okay, usually, with temperatures, but he gets hot easily.

A crowded mall to see Santa is not an option for us. Luckily, Casey got to see him in the parade and – this completely amazed her – when we went to a local light show, Santa was sitting in a sleigh at the end. And – he knew her name! He waved and said, “Hi Casey! Hi Rob!” She couldn’t stop smiling and giggled the rest of the evening because he knew her and he said hi! (I’m fairly certain Rob knew why Santa knew her name, but he didn’t ruin it for her!)

Casey is like me and loves all things holiday. (as a side note, I have to mark out all of the holidays that calendars have printed in them because she wants to celebrate them all!) She has been wearing Christmas shirts since the day after Thanksgiving and is dropping hints that she doesn’t have enough of them. Her calendar is full of Christmas things to do – bake cookies, see a movie, several light shows, go shopping. The list in her head is long and she wants it all to happen. Luckily, none of it is impossible and Rob is willing to do most of it, too. (He likes making ornaments, but he’s a one and done kinda guy!)

Look near you for drive thru light displays. There are so many near us that we rotate each year. And – they aren’t expensive – even better! Plus, the drive thru ones let your child feel safe while the rest of you can enjoy the displays. Check local zoos for sensory days. The zoo we went to last week has a huge light display and several days throughout the season are designated as sensory friendly. The music is turned down and all flashing strobe lights are turned off. Most places do something similar.

Many malls offer a sensory friendly Santa visit, too. If your mall doesn’t, ask if you can schedule a time for your child to meet Santa outside of his usual spot where the crowd may be thinner and there will be less noise. Again, most places are happy to accommodate your child’s needs – but you have to ask.

If you are invited to a party and want to take your child, just explain your needs to the hostess/host. Again, most people are happy to help – they just don’t know what you need until you ask for it. And if someone doesn’t want your child there, do you really want to be there? I sure don’t. We are a package deal. 🙂 (not that there aren’t times you need to go places alone to get a breather – I mean, do you want to be around someone who doesn’t accept your child?)

Or better yet – start your own party traditions. You can keep it small or invite the whole town. Rob and Casey never minded how many people were here because their rooms were off limits to guests – they always had their safe place to go to. (Again – your child may be different. I can think of three or four young adults I know that would hate having their home invaded by guests!)

My point is – your Christmas doesn’t have to look like mine or your neighbor’s or the rest of your family to be an absolutely amazing, magical time. People seem to spend too much time comparing their lives to others and feeling bad when they aren’t “keeping up.” But – did you ever think that other people may feel they aren’t keeping up with you? Yes, your life with autism may be a lot different, but that doesn’t mean it isn’t an awesome life. You don’t know what others are thinking – be proud of your family’s uniqueness! Flaunt it. Wake up the world!

Find the Christmas traditions that work for you. Big, little or no party. Shopping online or in stores. Visit holiday events or watch them on TV. Our lives are special and any tradition you decide will be special, too, because it’s completely right for your family. As so many other people are running around like crazy trying to do everything and find the perfect gifts, you will be home quietly watching a Christmas movie in your PJ’s and drinking hot chocolate. Autism doesn’t ruin holidays – it can make them even more special.

The title may throw you off a little. Before anyone thinks I’ve lost my mind and am letting Casey and Rob run the house, the expectations I’m talking about are the ones everyone has about what a happy life looks like. Autism changes your perspective, but not always quickly.

Many people seem to think a happy life is one with lots of stuff, lots of travel, lots of people around. Big, fancy parties for birthdays and expensive presents for Christmas.

Let me paint another picture for you. Yesterday was Rob’s 29th birthday. I am a birthday person. I love celebrating the person that day – not always huge things, but things to make sure that person knows they are loved and special. With autism, I had to let go of my idea of the perfect birthday and change it to fit Casey and Rob’s needs and wants.

If you ask Rob, my guess is, if he was able to say the words, yesterday was perfect to him. He got to sleep in as long as he wanted. He had his favorite doughnut for breakfast. He had nuggets and watermelon for lunch. He went to Mandy and Cory’s house.

He chose KFC for supper. He had presents that he loved (foam to cut, cards to rip, a new sign, new headphones, McD card and money) and people he loves to have cupcakes with him. He sang “Happy Birthday” to himself. And then he disappeared into his room for quiet time.

For him, it was perfect.

Before autism, I dreamed of parties with lots of kids, lots of noise, games… You know what I mean. After autism, I struggled to change my dreams into a happy reality for Casey and Rob. When they were little, their cousins came to their birthdays, but it wasn’t the same. I dreamed of friends for them.

Mandy had a few parties with friends and Casey and Rob were always included. But I wondered – did they ever wonder why she had so many friends and they didn’t? Did they feel lonely? Casey has always been more self-confident and has never seemed to care about having friends. As long as she gets to go places, she is happy. (and by places, I mean – to the park to walk or to the pool – nothing too fancy 🙂 ) Rob has always wanted the approval of others. And still does – that’s why anxiety is such an issue for him.

Autism will change your idea of what is fun, too. If you let it, autism can be an amazing teacher. Living with it will show you that what kind of car you drive isn’t important, as long as it gets you where you want to go. It will teach you that new and different foods aren’t that important and that there is comfort in sameness. Autism will slow your life down. You will learn to love and brag about the smallest steps forward your child takes – and you will appreciate those steps more than many “typical” parents will, simply because you know the struggle it took to get there.

My expectations of huge birthday parties has changed. Holidays are different than I thought they would be when I had kids. I don’t take long vacations anywhere. I don’t have a date when I will be “free” and the kids living on their own. I know every one of you has dreams for your child – expectations you planned on. Maybe you thought you would be sitting in the stands watching your child play football. Maybe you thought your child would take center stage in a musical. Don’t give up those dreams, entirely – just adjust them. I constantly tell people they have no idea what life will be like for their child. You simply can’t know. You do your best with the information you have and you move on.

I never want you to give up on your child. Push them to try new things – to look away from the iPad – to taste a new food – to wear a new shirt. Small things add up quickly.

But – I also don’t want your expectations of what life would be like for your child to get in the way of what an amazing life you can have with autism. Autism is tough – you will never hear me say it’s easy. There are days you will want to cry and scream and give up. I know that. But – there is something good in every day, if you can stop the tears long enough to really look. Change your expectations of what a happy child looks like and you may see that your child is very happy right now. And if your child is happy, you have done a wonderful job as a parent. Pat yourself on the back!