I wanted to share a sample letter that is circulating around my Autism Support Group. The hustle, bustle, and of changing routines often equal confusion, fear, and uncertainty in kiddos with processing issues. Please be patient! It's also a stressful time for the parents trying to help their child.
Imagine if all the things you love, all the traditions your family enjoy: shopping for the tree, trimming the tree, looking at lights, shopping for gifts, cookie exchange parties, etc., sent your child into a tailspin. You see a meltdown at the Christmas Tree Lot, but the parent is dealing with yet another tradition that fell through, and probably wants to cry along with their child. Just imagine. Instead of muttering about discipline (we do discipline our kids, this isn't about discipline, our kids are hurting, overloaded, and confused), try compassion.
I am sharing this letter for a few reasons. First, it's to highlight some of the challenges are kiddos face during the holidays, so everyone will have an idea of what to expect. Second, I would like to get this letter out to all who need it. It was well written, and explains a lot. Please feel free to pass it on and share with someone who could benefit. Last of all, if you are friends/family with a child on the Autism Spectrum, and they will be visiting, please take this letter to heart. We really DO want to visit, even if our visits don't look like what you imagine. Again, we are doing our best! With a little understanding and flexibility, we can all enjoy the Holidays!
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)
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