Friday, December 26, 2008

An Appreciation of my Tokens

After almost two weeks of being cooped up in what I can still not decide is Winter Wonderland or Homebound Hell (I'm leaning towards the later), I have finally designed a sanity system. Using a token board dug up from Behavior Consultants Gone By, I have devised a simple, effective way for Sayer to "earn" his way onto the computer.

Here's how it works: Sayer loves to look at water slide, roller coaster and marble maze videos on YouTube, like this one. (That counts as developing keyboard skills, right? Maybe not.) So, we are leveraging YouTube privileges to motivate Sayer. Before doing YouTube, he has to earn five tokens by completing five tasks. He gets a token -Tiddley Winks with Velcro - on the board for each task he completes.

Yesterday I used a written list of tasks that he checked off, similar to the schedule he uses at school. These were:

1. Empty dishwasher
2. Read a chapter of book from school. His current book is about metamorphosis and Sayer has a point, Chrysalis DOES sound like Christmas!
3. Watch a new DVD from the Scholastic Video collection, a Hanukkah gift
4. Put clean clothes from laundry basket into drawers
5. Make bed

This positive reinforcement strategy works great, much better than the "three strikes you're out; no YouTube tomorrow!" threat. For one thing, we kept loosing track of the strikes, and for another, with tokens we make sure that Sayer does homework and chores regularly. It also reinforces behavior strategies used in his class room.

And most important of all, I really don't WANT to take away the YouTube privilege because snowy days (and, to be honest, many clear days) are long and when Sayer is on YouTube I can, well, do stuff. Like write this blog post on my lap downstairs, which I am doing right now.

On balance, it takes a bit of forethought to come up with the list of token chores, and I try not to do this BEFORE my first cup of coffee. And Sayer still needs some supervision for most tasks. But, the token system still pays back in dividends. Unless we have another power outage...

Monday, December 22, 2008

A Letter From A Child with Autism

This letter was posted on General Hysteria, a great blog written by Mia about her experiences mothering Alex. The letter describes specifically how individuals with autism and other disabilities perceive holidays and holiday visits.

Mia is not the author - the author is unknown. The introduction to the letter is Mia's, and the photos are of her adorable boy Alex. I'm sure she'd love to know what you think and I encourage you to visit her blog.

A Letter From A Child With Autism

A few things to say about this post:

1) It's long, but please read it; copy and paste to for yourself if you wish
2) It's worth the read to understand any child that lies anywhere on the Autism Spectrum and many children that have any sort of developmental delay, brain insult (like Cerebral Palsy) or the mixture of any number of disabilities
3) It breaks my heart because I feel as though it's my son speaking to me
4) The author is unknown

All pictures are Alex

"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 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 allowing 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 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!


Your Autie/Aspie/PDD kiddo"

Monday, December 15, 2008

Sleigh bells ring - and he IS listening!!

"That's a Christmas song!" Sayer exclaimed the other day in the car. And so it was. A true confession - I am born and raised Jewish gal who harbors a secret love of Christmas/Holiday music. I just always have; I actually look forward to those 36-hour Christmas Eve/Day radio marathons. I feed my addiction mainly in the car, listening to the radio churn out "White Christmas," "Grandma Got Run Over by a Reindeer" and the like. I only listen without the presence of my husband, Dan, or older son, Jacob, who both call holiday music "drivel."

Back to Sayer's reaction - I was actually impressed that Sayer recognized the song on the radio as a Christmas song - it shows that he can generalize songs he hears in school, at department stores, and so on. I hadn't really thought he noticed that closely what is playing on the radio; and the fact that he does is a good thing.

How much I have changed since the time when Jacob was young, when I was indignant when a Christmas song was played at a school winter concert. When Jacob was young, I clearly told his teachers that he was Jewish, and we would prefer that he not draw or write about Christmas trees or Santa Claus. I did volunteer to help his class mates understand and celebrate Hanukkah, and so I have contributed more dreidels and pennies through the years than I care to count.

Now, I pick my battles, and pick them carefully. This month, when Sayer brought home a December calendar with his drawing of a Christmas tree, I was a bit taken aback - oops; gotta tell the teacher he's Jewish. But, actually, I was more thrilled that:

a) He has learned how to draw a tree (representation drawing is still an "evolving skill") and

b) His teacher thought of having the kids do a calendar with the school schedule on it for us to share with Sayer. Very handy, since we can point out exactly when winter break begins.

Instead of being annoyed, I simply wrote a note saying Sayer was Jewish and he loved to talk about Hanukkah. I also offered to help the class get into the Hanukkah spirit. So, it's off to the party store to stock up on dreidels for his class mates, but it's all good. As long as I can sing along with Burl Ives, Eartha Kitt and John and Yoko, I'm fine with it.

Thursday, December 11, 2008

Our kids in college - Is it possible? Is it affordable?

Thanks to mom "K" for sending me this ABS News video clip about Chapel Haven West, a two-year residential program for young adults with mild developmental disabilities that features a partnership with the University of Arizona-Tuscon. Participants have the chance to attend university classes, with support.

This sounds like a great program; unfortunately, according to their web site, the yearly program cost for 2008-09 is $52,500. Ouch! I scouted around the web site for resources on scholarships but didn't find much - except a reference in their annual report to a scholarship fund. Perhaps government funding programs (if they are left) can be applied towards the cost of such programs? Let's hope I overlooked something!

While googling for information about this program, I did come across a great annotated resource list on issues for young adults on the autism spectrum, from the Anabaptist Disabilities Network website, " Asperger Resources for Young Adults." You can access this list on the Asperger Syndrome page of the Network web site (on the right). The list describes a number of programs similar to Chapel Haven; most are on the East coast or in the Midwest.

So, for those of us with children who could benefit from such programs - is it reassuring to know that they are out there? Is is depressing and anxiety-producing to know that they are out there but affordability is, well, let's just say - a challenge? How do you see it?

Friday, December 5, 2008

Disability in our perfect family tree? Some resources for acceptance and understanding

I have heard from a number of moms who experience exclusion and judgement from some extended family members. This can be a particular heart break during the holidays. Here are some resources that I hope can help:

The Autism site has some resources in this link: Your Advice Requested: Problems with Extended Family and Autism. The suggestions could be helpful for families of children with other disabilities, as well.

David Pitonyak's Imagine web site is a treasure trove of information about inclusion and acceptance of people with disabilities, particularly those with challenging behavior. Maybe some of the articles on this site could be part of our relatives' holiday gifts?

Jessica Kingsley Publishers is an independent publisher with a focus on autism spectrum disorders,mental health and counseling. They have a broad selection of books and resources, both practical and inspirational. One book in their catalog is: Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism and Professionals Share Their Widsom: This includes some essays written by grandparents and siblings: maybe ours can learn by example?

For some of us, the challenge of extended family acceptance of our children is complicated by cross-cultural issues. I couldn't find any quick and easy resources for that topic (do they exist?) but I can recommend one of my favorite books on autism and disability: Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker.

Roy Grinker is a cultural anthropologist, and his book offers a cross-cultural perspective on autism. He looks at how autism is perceived in countries such as South Korea and India. His take on autism in the United States is just as fascinating.Here is a summary. His web site also has a list of links. For Clark County folks, I have a copy I can lend out; let me know if you are interested.

If nothing else, my cruise around the web has reinforced my knowledge that we are not alone. This list is far from exhaustive; please let me know if you have other resources to add.