Article/Letter for the holidays and Spectrum like kids

Discussion in 'General Parenting' started by Fran, Dec 5, 2008.

  1. Fran

    Fran Former desparate mom

    I know this has been posted before but it may be useful for the new members who have children who have difficulty with the holidays. I think it helps with more than parents of kids on the spectrum. Many of our kids cross diagnostic lines. This is applicable to many of them.

    "This was written for the purpose of it being sent to relatives, friends, and hosts
    of holiday gatherings that might need a crash course in what to expect from
    their guest on the autism spectrum. This letter is written as if the individual on
    the autism spectrum is writing it personally.

    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 (Pervasive Developmental Disorder (PDD)), challenges me. Autism/Pervasive Developmental Disorder (PDD) is a
    neurodevelopment 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.

    Thanksgiving & 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

    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 "stimulant" 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

    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
  2. trinityroyal

    trinityroyal Well-Known Member

    Fran, thanks for posting this.
    I think it might help during those chaotic family celebrations.
  3. TerryJ2

    TerryJ2 Well-Known Member

    Neat! I've never read it before. Thank you.
  4. Thanks Fran,

    What a great letter. If only we had this years ago....
  5. totoro

    totoro Mom? What's a GFG?

    I gave this to mother in law last year. Of course she thought, well the girls are not Autistic...
    I may write my own with Mentally Ill wording...
  6. Star*

    Star* call 911

    I think being Autistic is like being a person, inside a person that is smaller standing on a lighted platform watching everything outside the platform whirl and spin and the whirling is just chaotic and you can see the calm person on the lighted platform but you're in the chaos whirling around and you encase all that with a human form that LOOKS like everyone else until you get into the skin and see the chaos.

    Thanks Fran - this gave me a much better understanding of Autism.
  7. Sheila

    Sheila Moderator

    I don't recall seeing this in the archives. I'd like it archived if possible.
  8. Marguerite

    Marguerite Active Member

    This is really good stuff. I think I'll print it out and share it with difficult child 3's drama class; most of the kids in that class have some form of autism. We have two weeks to go before the end of the school year, I know a few of the parents feel very isolated at times. It's worse or single parents I think, because they're trying to keep even more juggling balls in the air than those of us with a partner, they haven't got the time to look around and gather resources like this.

    Thanks, Fran.

  9. 30 and searching

    30 and searching New Member

    Thank you so much for posting this!