Tuesday, December 17, 2013

Aspergers and the holidays.

Once again that wonderful time of year is upon us.
Fun smells, pretty decorations, fancy cakes, parties and all the good stuff....even a nice glass of moscato for the adults and we are in for a good old fashioned Christmas.

Our holiday is a little more low key this year. The boy has a stick tree in his bedroom- partially decorated. Normally he has his full tree bursting with ornaments and no room for homework or papers....the reduced tree was at his request.

Thinking about the holidays made me think of any number of things. People I miss; my Daddy, my aunts, uncles, friends....it reminds me of how life goes on and we either miss out or appreciate what we have....I know I am happy and the cuter half and I have a really full busy life. The boy is doing better....life is what it is and we are doing our best to make the most of it.

There are a couple of links I am going to share here:

The Daily Mail is an excellent resource for articles about Autism and Aspergers this one about social anxiety and Susan Boyle is a really good read:
http://www.dailymail.co.uk/health/article-2524969/As-adults-diagnosed-Aspergers-like-Susan-Boyle-Struggle-small-talk-You-form-autism.html


Then there is a blog about Austim and the Holidays that you might enjoy; although I will tell you that change the child's name to "the boy" and you will have our experience almost to the exact time frame:
http://www.huffingtonpost.com/emma-nicholson/autism-and-the-holidays_b_4448297.html?utm_hp_ref=fb&src=sp&comm_ref=false#sb=1324091b=facebook

After reading this blog post I started thinking about what gets at me through the holidays: I think that the most frustrating part of the holidays for me is what I call the "hanging". The boy hangs, all over me. I feel like I have a 180 lb blanket that drapes itself all over me and then dribbles in my hair. YUCKO. I know he doesn't mean to and I know he is excited about the holidays, seeing his favorite Aunt and being with his grandparents (both sides).....and no school and nuthin' to do....but OMG the shoulder and neck pain and the fact that I am not a person that appreciates being suffocated....or manhandled. Although my favorite chiropractor LOVES the holidays and the appointments I need to make so I can move my neck again- I gotta say there are other things I would rather be doing.

UGH. This is where I end up feeling and sounding like a harridan straight out  of hell. "Do not touch me if you want your ____ to remain intact."

Now for the letter- I had my own but I can't find it so I located this one. As the author recommended vary it to your needs:

The following is a letter (or email) that you can send to relatives and hosts of holiday gatherings who might need a crash course in what to expect from your Aspergers (or high functioning autism) child. Feel free to copy, paste and print this letter. You can use it as is, or edit it to make it more applicable to your unique situation:
Dear _____, (e.g., Aunt Sally)

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, I am challenged by a hidden disorder called Aspergers, or what some people refer to as High-Functioning Autism. Aspergers is a neuro-developmental disorder which sometimes makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which may make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try to understand people, and at the same time make myself understood. Children with Aspergers have different abilities. For example, some may not speak much, and some write beautiful poetry. Others are whizzes in math (Albert Einstein had a form of autism), 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 around a lot of other people sometimes feels like standing next to a moving freight train – and trying to decide how and when to jump aboard. I may feel frightened and confused some of the time. This is why I like to have things the same as much as possible. Once I learn how things happen, I can stay pretty calm. But if something changes, then I may have to relearn the situation all over again!

When you talk to me, I may not be able to comprehend everything you are saying to me if there is a lot of noise and distraction around. I usually have to concentrate to hear and understand one thing at a time. You might think I am ignoring you, but I am not. Rather, I am hearing everything, but not knowing what is most important to respond to.

Holidays can be hard for me because there are so many different people, places, and things going on that are out of my ordinary environment. This may be fun and adventurous for most kids, but for me, it can be hard work and 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 can’t sit at the meal table, please don’t think that I am misbehaving or that my mom and dad have no control over me. Sitting in one place for very long is often very hard for me. Sometimes I feel overwhelmed by all the smells, sounds, and people. When this happens, I just have to get up and move about. But please don’t stop eating on my account. Go on without me, and my mom or dad will handle the situation the best way they know how.

Eating in general can be hard for me. If you understand that Aspergers is a sensory processing disorder, it’s no wonder eating is a problem. Think of all the senses involved with eating (e.g., sight, smell, taste, touch) and all the complicated mechanics that are involved (e.g., chewing and swallowing). This is something that some kids with Aspergers have trouble with. I am not being picky. I just can’t eat certain foods because my sensory system is overly-sensitive. (Hope you understand.)

Also, please don’t be disappointed if my mother or father doesn’t dress me in fancy clothes. It’s because they know how much stiff and itchy clothes can drive me nuts! 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 irritable. In a way, I am being controlling, because that is how I try to fit into the world around me. I like things 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.

My parents have no control over how my Aspergers makes me feel inside. Kids with this disorder often have little things that they do to help themselves feel more comfortable. The professionals 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 the environment. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The professionals call this “perseverating,” which is similar to 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.

Holidays are filled with sights, sounds, and smells. The average home is turned into a busy, frantic, festive place. This may be fun for most kids, but it can be 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. In any event, I will try very hard to be on my best behavior when we get together during the holidays.

Thanks for listening. I’m looking forward to seeing you.

________ (Aspergers child’s name)





 

No comments:

Post a Comment

Thanks for commenting.