Another Excellent Christmas Resource ...

Another Excellent Christmas Resource …

Filed under:Other — posted by admin on December 17, 2008 @ 2:50 pm

Hi there-

I got an email recently for a kind reader (Susan) which outlines a great letter put together by The Autism and Support Network Advocacy Project in 1999 (ASAP News Volume 3.5). It helps to explain for family and friends what some of the challenges for a child with ASD are at Christmas. So here it is …

Dear Family and Friends: A Holiday Letter

“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 (PDD). Autism/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 cannot 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 “stim” 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 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!

(This article appeared in the holiday 1999 issue of ASAP News! (Volume 3.5) The Autism Support and Advocacy Project, and Potential Unlimited Publishing)

Hope this may be useful,
Dave Angel
PS – I’m hoping to get the December newsletter out before Christmas and also write up reviews of the Total Transformation program (I’ve listened to the first 3 CD’s so far and there’s some excellent stuff on there. You can read more about the program at http://tinyurl.com/643fs3

comments (20)

20 comments »

Dave – you really are an Angel. I am still not done wiping the tears from my eyes. My 8 year old daughter could not have written this better. She is an Asperger’s ADHD spectrum and almost every single word is exactly how she feels and what we have experienced as parents. My family was so hard and judgemenental of her as well as us as parents. They just do not understand so I have been sharing your articles with them lately to try to educate them. This article; which is so perfectly timed will be the next article I forward onto all of them. I have been dreading another family get together as Thanksgiving was so hard, but with this article, they may understand a little more and learn to be accepting. Thank you so much for sending this and making it easier for me to share with my family so that they do not think I have lost my parenting skills! My sincerest and best regards.

Comment by Marlene — December 17, 2008 @ 3:33 pm
what a lovely story and it really helps get inside our sons head, although we have always followed his lead in similary situations, it was great to read and also helps me understand my wonderful nephew as it reminds me so much of him

Comment by clairemackin — December 17, 2008 @ 3:34 pm
Dave,
Thank you for the letter. I’m going to include it in my Christmas letters. While I do not have a child with autism, I have friends who do. I see no reason to keep this letter and to send it to people who already know what autism is. I want to educate the rest of the population. Thanks again.
Sally in Texas

Comment by Sally Flores — December 17, 2008 @ 4:12 pm
Thank-you, there are lots of really useful phrases and descriptions which really sum up what some authors take a book to write and obviously something this short is easier for teachers, doctors and other busy professionals to absorb as well of course as family and friends. Brilliant!
Jo , Dorset, England

Comment by Jo Belasco — December 17, 2008 @ 4:36 pm
Thanks again for yet another great article. I too plan to include a portion of this article with my Christmas letter. I have a 13 year old son with Aspergers,and one particular family member who just doesn’t seem to understand. She has called my son rude, unsociable and lazy. Hopefully this will help her see into my son’s world a little better.

Comment by Nena Swan — December 17, 2008 @ 5:51 pm
This brought tears to my eyes too. I shall definitely share it with others who may find Aspergers difficult to understand. Thank you for writing so accurately. Christmas may be easier because of this article.

Comment by Christine Taylor — December 17, 2008 @ 6:54 pm
This letter is great and I plan to share it with people that don’t understand. I have two grandsons with Aspergers and ADHD. The mom is a single parent and needs all the support from family and friends. Thanks again for your great web site.
Audrey

Comment by Audrey — December 17, 2008 @ 8:47 pm
Dear Dave:

I can not thank you enough for posting this letter to friends and family. As a parent of an 11 yr old Asperger/BiPolar/ADHD daughter I am the one that needed to be reminded about the trouble she has. I have been overwhelemed myself with the holidays, feeling like there is not enough time to do the things I need to, working the 3rd shift and trying to get some sleep in also. I needed to be reminded that the things she is doing, the rudeness, screaming at me, running and banging off the walls, constant tapping, etc. are her ways to cope with the excitement and changes going on around her. I needed to be reminded also that she is not doing these things to drive me over the edge, she is not out to get me and by my remembering what it is like to be “her” I was able to step back, make an adjustment of my own so that my family can enjoy the holiday and time together.

Thank you so much for the needed “kick in the butt” I needed. Happy Holidays to you and your family. You are in my case a life saver.

Love,

Barbara

Comment by Barbara Shea — December 17, 2008 @ 9:32 pm
I wish I had this letter yesterday! With all the Christmas prep. going on in school my 10 yr old was “spun” all day. I was at a loss as to how to explain why he was acting the way he was. It doesn’t matter how much progress we make, autism doesn’t go away.

I wish the best to this group of online support. I don’t know how I would have gotten through this year. My son was diagnosed in February (the 10 yr old) and my 5 yr old this week. My 7 yr old has a rare blood disorder that has me at the hospital every other week for infusion medication. Knowing I am not alone means the world to me..Thank you for sharing your insight and struggles through this vehicle. Happy Holidays to all.
Katie

Comment by Katie — December 17, 2008 @ 9:42 pm
This letter was fantastic! What a great resource! This will be so helpful to send before our various family/friend gatherings. This will be especially helpful for my 14 and 16 year old neices who do not “get” my 10 year old son with Asperger’s. Have a blessed holiday season!

Comment by Michele Snow — December 17, 2008 @ 10:01 pm
AWESOME WRITING THERE,DAVE MY 15YR OLD SON REALLY TOUCHED BASE WITH THAT THIS EVENING,AND SAID THAT IS “ME”…I HAVE GROWN CHILDREN THAT HAS MADE THE COMMENT THAT HE IS DIFFERENT AND IT MAKES ME ANGRY AND HURT CAUSE HE IS HIMSELF AND THATS THAT….

Comment by Suzi — December 17, 2008 @ 11:32 pm
Thank you Dave. I’m finding my 5yrold (HFA) a bit of a handful at the moment, as there’s no Kinder and he’s starting school next year. I’m seeing more melt downs now then previously and this letter has made it clearer to me why he’s acting this way. He had a MD yesterday and I took him aside and told him it was ok and calmed him down. Holidays are difficult for him, because the structure and routine are not there anymore, despite the fact you still try to continue a routine, with various activities put on his schedule, he still finds it difficult. I agree with some of the readers, a lot of people don’t understand autism and think they must be dumb or like the rainman! My little boy is the most loving out of all of my sons, despite his difference.

Comment by Fiona Arthur — December 18, 2008 @ 12:02 am
Hi Dave,
Hi think of all the information that was thrown at met since the diagnosis of my 7 year old daughter with Asperger, this is the most usefull peace of advise and insight into her world. Thank you vermy much.

Comment by Rene — December 18, 2008 @ 3:56 am
fantastic resource material…….This will do more good for more people than any other piece of literature I have given out or recommended….Thank you from our family and Happy Holidays to all

Comment by Pam — December 18, 2008 @ 7:32 am
Dave thanks for the letter. It really was an eye opener again to take a step back and let my son be himself. We had our first party last Saturday, for once noe one said anything when my 13 yr old opened his presents then went into the other room by himself to watch his videos that he just received.

Thanks so much .
Every one have a merry Christmas.

Comment by RONNIE — December 18, 2008 @ 8:04 am
Loved the article. I will be taking it with me this Christmas. My family is loud and overbearing when they are together. They cannot understand why my AS son retreats to a room by himself to watch movies. (Oh here is something funny, my parents still have a VHS player my son spent 1/2 hour at Thanksgiving pushing the tape in and ejecting it. He wanted to know why we didn’t have anything so cool Guess I should get rid of the blueray, haha)

Comment by K. Koke — December 18, 2008 @ 11:50 am
Thank you for this wonderful letter. It made me cry too. My 10 yr. old has Asperger’s along with ADHD, anxiety disorder, and OCD. We had an incident this Thanksgiving with my mother-in-law whom I thought understood his condition. It was very upsetting and frustrating. This letter brought up all those things that I wish I could have said. I will be taking copies with me to all of our gatherings this year.
Thanks Again!!

Comment by Sarah — December 18, 2008 @ 12:54 pm
This letter is priceless!! It will be great to share with family, friends, etc. I, too found it very emotional. Sometimes during these busy times we, as parents need to hear this to be reminded of realities of this difficult challenge we deal with daily in our lives! My son is 7 and his behavior has been horrible the past few weeks. He has had constant melt downs, and we are all so so busy, stressed and tired that it is difficult to be patient and do what we know we need to do. Thanks for reminding me of what is really important. For all of you that have shared comments, remember you are not alone in this fight. Thanks for your support and encouragement!

Comment by Krista Lebron — December 19, 2008 @ 8:44 am
Thanks for the above Dave. I can see where my l3 year old grandchild may appear to have behavioural problems when he is around his siblings or seem strange to his peers or groups of people. I do not have a problem with him at our place except my husband finds meal times hard but thats because he is watching him and gets frustrated with manners and social behaviour. I’ll forward this on to his mum and dad.

Comment by Lillian Carde — December 19, 2008 @ 9:32 pm
Thank you so much for posting this letter. It really helps put things in perspective in this season full of lots activity and stress. I think it will help my family members as well as many other families to understand some of the challenges our children face in this time that we associate with joy, can be very overwelming for our children with special needs. Thank you and have a Merry Christmas

Comment by Jennifer in Texas — December 21, 2008 @ 9:56 pm