Holidays and Autism - A Must Read For Anyone With

Discussion in 'General Parenting' started by Janna, Nov 4, 2007.

  1. Janna

    Janna New Member

    an Autistic Child ~ it makes me so sad because it really is, in alot of ways, how my sweetheart is :crying:

    This article appeared in the holiday 1999 issue of ASAP News!
    (Volume 3.5) The Autism Support and Advocacy Project, and Potential
    Unlimited Publishing.
    "Dear Family and Friends:" was written for the purpose of it being
    sent to relatives and hosts of holiday gatherings who might need a
    crash course in what to expect from their guest with autism.

    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, I am challenged
    by a hidden disability called Autism, or what some people refer to
    as a Pervasive Developmental Disorder (Pervasive Developmental Disorder (PDD)). Autism/Pervasive Developmental Disorder (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.

    Sometimes I may seem rude and abrupt, but it is only 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 can not sit at the meal table, do not think I am misbehaved 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 are
    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 kinda 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
    awhile 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!
     
  2. Hound dog

    Hound dog Nana's are Beautiful

    Janna

    This was Travis as a child, too. Holidays always meant a meltdown whether at home (before or after) or at family's house. Now that he's older some things have improved. But also the family has become more tolerant, which helps him to relax. Still, I've noticed he'll spend much of the day in his room.

    I'm glad you posted this.

    Hugs
     
  3. Lothlorien

    Lothlorien Active Member Staff Member

    What a great letter! Awesome!
     
  4. ShakespeareMamaX

    ShakespeareMamaX New Member

    This brought tears to my eyes and all of it really helps put into perspective what the child is actually going through.

    If this helps others as much as it's helped me understand the way autism works, I think it will do a world of good on those tough holidays.

    Thank you for posting this!

    <3 And don't be sad. There's nothing wrong with doing everything in your own, special way. :its_all_good:
     
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Janna, this is great. Some of it applies to Lucas, although none of us ever dress up for the holidays...lol...(casual family) and Lucas really does not meltdown. However, you may add to the list:
    "It may seem as if I don't like you very much. I may watch television and stay quiet or go upstairs and play with my videogames or just stay by myself in a corner and if you ask me a question may answer "I don't know" or "yes" "no."
    I don't do well with a lot of people and find comfort in familiar pursuits. I love all of you very much, but I have trouble expressing it and showing it, but I really appreciate my family and talk about how much fun I had after the gathering is over!"
    (This is very "Lucas.")
     
  6. Janna

    Janna New Member

    MWM,

    That's alot Dylan, too, especially the waiting until everything is over to yak and yak and yak and yakkkkkkkkkk about it LOL!

    The sensory stuff isn't so much him. The clothing. Interestingly, Dylan is the opposite, where he wouldn't go into a corner, hide in his room, or stay away from everyone. He wants to be the center of attention, which is odd for Autistic's, but he does. He gets louder and louder, the more people that come in, and he gets wilder and wilder, as the other children get wild. He's so incredibly overstimulated, but he goes WITH it, rather than seperating himself from it.

    Unmedicated, I'm seeing ALOT, and I mean ALOT of Pervasive Developmental Disorder (PDD) stuff. I'm absolutely amazed at the different kid in front of me on no medications.

    I really liked this, which is why I posted. Glad the rest of you did too!
     
  7. SearchingForRainbows

    SearchingForRainbows Active Member

    Janna,

    Thanks for posting this!!! I hope everyone reads it!!! WFEN
     
  8. Sharon1974

    Sharon1974 New Member

    This letter is wonderful. JK has no diagnosis of Pervasive Developmental Disorder (PDD) but it still fits him perfectly! I often dread holiday dinners because JK does not act the way everyone else thinks he should. No one can understand why I let him stand at the table during dinner but make my 4 year old sit. Sometimes I need to take JK upstairs to a bedroom alone to give him some "re-grouping" time when I see he is getting overwhelmed. I wish more people would understand. I know they are all talking about JK while we are upstairs, even though I watch for the signals and catch him before he starts to mis-behave.

    Recently while having an outdoor dinner at my parents, my father remarked that he would have to go inside to get another chair and then stopped and said "Never mind, JK probably won't be sitting while he eats anyway, how bout we just let him stand today?" I couldn't believe my ears!!!! Was he finally getting it? Much easier to just let the kid stand at the table then fight with him about sitting. He isn't mis-behaving, he is just doing what he needs to do.
     
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