Growing up I always loved Christmas… I still do. Like most children, I always felt Christmas could never get here soon enough and once December arrived, it dragged on endlessly. When Christmas Eve FINALLY arrived, we always had a family get-together with my numerous aunts, uncles and cousins. We visited and watched the clock… waiting for the stroke of midnight! It was always a fun evening and an incredible lead up to the next morning… Christmas Day!
I think back to those days and know that having a similar family tradition today would be extremely difficult. Why? Well, Christmas is a time filled with lots of challenges and anxiety for those on the autism spectrum… and my son is no exception.
As my son has gotten older, Christmas has become harder for him. It’s not that he doesn’t like the idea of Christmas… he loves that! It’s the crowds, the noise, the lights and I think the overall ‘electricity’ in the air for the entire month of December. So, we have learned to love Christmas in a little different way… our way!
We have started a lot of our own traditions… they may not be hectic and overly festive, but they are still fun. Things like his Elf On The Shelf, who he has so lovingly named Pom Pom. Pom Pom has been coming to our house each Christmas season for the past three years and is definitely a family favourite. Well… at least it was for me, until he actually drank my Starbucks the other morning. Now… I think of him as pure evil!! I am currently plotting my revenge! All kidding aside, it’s something my son adores so we will continue it as long as he desires. He usually starts asking, about the beginning of November, when Pom Pom is coming.
Another thing that my son loves is his Lego advent calendar. It too has become a yearly tradition. He’s such a huge Lego fan and it gives him a little excitement each day without creating too much anxiety! He can quietly celebrate the new day and as a bonus gets to create these really cool Lego scenes with all the ‘prizes’ that he gets in the calendar. It’s a far cry from the advent calendars of my day where you got a terrible tasting piece of chocolate!!
Our Christmas tree is decorated but only minimally as not to over stimulate him visually. We have had years where we have put up our tree and two days later have had to take it down because it just seemed to be causing too much anxiety. One thing we make sure of, is that our Christmas tree is the only decoration that we use inside the house… it’s kind of a ‘less is more’ thing and we just try to work within his comfort level.
As I look at the calendar I realize that we are down to just a couple of weeks now until the big day. I know we have lots of fun things planned with one of the best things being making cookies!!! We spend a little more time at home and a little more quiet time. But you know what? That’s OK. If that is what my son needs, then this is now what Christmas has become for us. I have learned that I don’t need the bright lights and the hustle and bustle to make it the holiday season. What I need is my son to be as happy as he can be so he can enjoy the holidays too.
I am sharing a letter that I encourage everyone to read, whether you have a loved one on the spectrum or not. It’s one of those things that sheds a little light on what life can be like living with autism… not only for the individual, but for their family as well. I make sure that my family reads this each and every year. There are many ways to celebrate the holidays and being respectful and understanding of that makes it easier for everyone.
Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopmental disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.
Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.
Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me, and my parents will handle the situation the best way they know how.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside.
People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kind-a-like self- regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!
*Author, Viki Gayhardt
Wishing the holiday season lights up your heart and home with joy!