|He comes alive for the camera!|
I forget how hard it is for my son to function in everyday scenarios. I take for granted that even trying a new food can send him over the edge. It can be confusing and frustrating to raise a child with Aspergers. I am desperate to learn and understand what goes on in my son's brain. He has to overcome a 100 challenges before breakfast, I forget that and I am humbled by his determination.
The letter was written as a tool for the holiday season but, I think it is a beautifully written summary of Aspergers.
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.