Can you believe that it is almost December? I have done nothing as far as Christmas goes, even though I keep running into my friends around the city and they all ask, “So, what does CC want for Christmas this year?” or, the dreaded question that makes me cringe, “Are you done your Christmas shopping yet?” Are you kidding me? When it comes to Christmas the last few years, I have been… well… pretty disorganized and I feel like, what has become a stereotypical male on Christmas Eve, as I am running around like a crazy woman trying to get everything done. Then I say, “Next year I won’t do this… I will be have everything done early!!” Yeah, right!
Don’t get me wrong, I love Christmas… I really do… but it’s a time of year that, since CC was about 3 years old, causes a great deal of anxiety in our house. Some years are worse than others and we always start the season wondering, “What is this year going to be like?” Those that have children or loved ones on the autism spectrum likely understand all too well what I am talking about. The crowds, the lights, the sounds, the music… oh, heck, it’s just the energy of the season… that creates such anxiety for CC as far as his sensory challenges go. As a parent, I find it very difficult to see my son have to deal with, what generally works out to be a difficult month of December, so we have learned to adjust and change the way that both my husband and I may have done things in the past. We have had years where we have decorated the house and within a couple of days we have then proceeded to ‘un-decorate’ as it was clear that it was going to be one of those years that the festive scene was going to be just too much to deal with.
I have shared previously a letter that should be read by everyone… in particular those that are new to the autism diagnosis, or those that may have someone in the family or a friend on the spectrum. It is an important letter to read. Life would be so much simpler if everyone was open to trying to understand… even a little bit… and accept our children, friends or family members the way they are. Over the holidays remember that those on the spectrum and their families can be dealing with a great deal more stresses than usual.
My son teaches me each day that there is a different way to do things, and a different way to see things. I couldn’t be more blessed or thankful for this gift that I have been given… my son and his unique way of looking at the world.
So… the letter… give it a read… share it with others. Understanding and acceptance… it’s something that we all have room for in our lives… and an important thing that we all need to learn!
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
And, what I will be doing over the next few weeks… or at least trying to…
Until next time…