Sunday, June 17, 2007

Bear with me and please read

I know I haven't posted in a while but things are busy just like everyone's life gets sometimes.
I have come across a couple of emails that were sent to me over the past few months that I would like to share with
the world. I would appreciate it if you take the time to read them and feel free to have others come and visit my blog
to read it. All comments are welcome.

Remember its much harder for them.

This article is written from the vantage point of an
individual with an ASD (Autism Spectrum
Disorder). The article is reprinted with the
permission of editor/author Viki Gayhardt.
Feel free to reprint and share with your friends and
family during this holiday season.

“Dear Friends and Family” was written for the purpose of it being sent to relatives and hosts of holiday gatherings that might need a crash course in what to expect from their guest with autism.

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 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.

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 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 where to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn’t understand how the inhabitants communicated. 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 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 5 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 parent’s will handle the situation the best way they know.

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 chewing and swallowing 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 mommy 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! Temple Grandin , a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.

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 in my face; flap my arms 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 partaking in an activity. The grown ups call this “perseverating”, which is kind of like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don’t want to come out of that comfortable place and join your hard-to-figure-out-world. 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, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!). 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 tippies, 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 tippy 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!"

Beautiful Music about Angels on loan from Heaven

Hi everyone. I am getting more involved with Kelly's school. The past PTA president sent these lyrics to a song written by the music director at the Mercer Junior High School. He is very dedicated and devoted director who happens to be Autistic and a Music Savant. At the graduation this song was sung. It says our special needs children are angels from God sent down to earth to teach us how to love.
Anyway.......below are the words to Alan Rosen's song
Through our Eyes

What is so, and what is not - Do you know just what you have got? Is the world what it seems to be? Or are the scenes so confusing, that you find it all amusing - Well, Maybe - but this is what we see......

Through our eyes, the world's a portrait, With bright colors, red and blue and green, Filled with thoughts that are appealing, and a calm and gentle feeling, paints the scene....... it paints the scene.....

Through our eyes, we see a people struggling, to find their way every day and night. You must learn to make good choices, let the master hear your voices, to make it right...... it will turn out all right.

We are sent to teach you, humility and tolerance, forgiveness, sensitivity, how to cope -- and take a chance. We are your Angels, sent from up above, We're here to share our love - teach unrequited love.

Through our eyes, we pass up to heaven, what we know, because we're wise. It is you who is disabled, and we who are enabled. Our place on earth will earn us wings to fly. This is our disguise, God sees you, God sees you, God sees you Through our Eyes, Through our Eyes, Through Our Eyes.

Tuesday, June 5, 2007

Just another day in the life...

Recently a friend said she checked my blog to see what was going on in my life. ...hey that was her on the phone just now. (Hi Sue!) Actually my whole family had a stomach virus and I was thrown up on about four times over the past five day.....wooo hooo.

They say you haven't fully experienced mother hood until you are spit up on, thrown up on and peed on. Kelly peed on me before she came home from the hospital. I was changing her diaper in the NICU and she peed up in an arch like a little boy does...she got me good. Also add sneezed, coughed and pooped. Boy oh boy...I am a fully experienced mother.

Any stories of endearing motherhood experiences any one would like to share???