Our journey in the Autism Spectrum

Posts tagged ‘autism awareness’

Let Your Inner Chameleon Shine this April

It’s been months and months since I’ve blogged.  The more time that has passed I’ve felt more and more pressure to write something.  Anything.  But what to write about?  I’ve just not been feelin’ it. As we all know, April is autism awareness/acceptance month so, as my first post since September, I thought I’d do something a little different.

In case you are new to my Facebook page and/or blog, I love chameleons.  I relate to their changing colors and camouflage; their ability to  always change and blend in (or not blend in). For me they also represent the diversity in everyone and their spectrum of many colors relates very well to the Autism Spectrum. It’s a whole big jumble of layers of  awesome symbolism! 

Anyway, getting to the point, I thought it would be fun to have my readers and fans share their own diversity; their “chameleon-ness” as it were.  Below is a link for a PDF file that can be printed out and colored. I’m encouraging anyone and EVERYONE to color their chameleons in a way that best expresses themselves.  This is for kids and adults! Anyone! Whether you are on the Spectrum or not!!!

I would love it, if you are so inclined, to take a picture of you and/or your little chameleon(s) and share your creations! I will be accepting pictures all this month of April. You can share them on my Facebook page, A Chameleon in the Spectrum or via my e-mail at inthespectrum@hotmail.com .

Your photos can be of just your completed chameleon coloring page or with the face of the artist as well.  No names or pictures will be used unless permission is given. I thank you in advance for your participation.

This April 2014 let’s all express,celebrate and share our diversity!!!

CLICK THIS LINK TO PRINT YOUR CHAMELEON:  Chameleon Coloring Page

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Forget the Hate. Celebrate! ~ My Autism Awareness Day Post 2013

Every time I think about the subject, or see a blog post, or article, or discussion about it I immediately become EXTREMELY anxious! Like an I-can’t-breathe kind of anxious. Folks within the autism community are STILL “picking sides”. I generally make a run for the hills to avoid any possible confrontation with it.  I feel as if I could easily hyperventilate just trying to write this post.

A year ago, I wrote this.  And here we are again. It’s April. Autism Awareness Month.  Sadly, what I wrote last year still feels very true to me today.  I’m disappointed. It makes me anxious and sad and tired.

I.just.don’t.get.it.

I will support Autism Speaks, the Autism Society , Asperger Syndrome and High Functioning Autism Association (ASHA), the National Autism Association, LifeSkills/TouchPoint Autism Services, and many other autism organizations.  I want to support and promote ANY and ALL of the wide SPECTRUM of organizations and individuals that are working positively toward helping ALL others in this great big, and very diverse, spectrum of AUTISM. We need awareness at all levels of autism so we can promote compassion and understanding for ALL on the autism spectrum, no matter where on this spectrum they may be! It hurts my heart to think that some in our “community” still can’t see that.

Perhaps I should be glad that I don’t get the hate. I’ve got no room in my life or in my heart for more negativity and bitterness. April is Autism Awareness Month and I know that most of my readers are highly aware of autism every damn day, as am I. In 2012 I followed up my post linked above with this post.  And this too still rings true.  Positively so.

Because of all of this I’ve decided that I want to use this month of awareness to CELEBRATE autism. I will celebrate my son, his differences, his challenges, and the amazing progress he continues to make! I will celebrate our educators, counselors, therapists and physicians who help support and encourage us along the way! I will celebrate our whole family for rising up and overcoming the challenges that autism often brings into our lives. In doing this perhaps others, both within the autism community and those outside of it, will learn by our POSITIVE example. And really, isn’t this what we want to accomplish all year long?!?!

Welcome to April! Celebrating Autism Month!

A Glimpse at Life on the Other Side the Wall

Last night I had the opportunity to attend the Autism Awareness and Understanding presentation by Aaron Likens with TouchPoint Autism Services.   What an amazing program!  Aaron and TouchPoint have meant so much to our family. I thought I might share a bit of our story as to how they have made such a difference in our lives.

Before we had a diagnosis, I had always known there was something different about my son, Henry. Something different but perhaps something special too.  I just couldn’t quite put my finger on what it was.  He was funny and smiled a lot. He could be a loving little dude, and certainly he still is. There has always been a certain “mischievous charm” about him; a special sparkle in his eyes.   But he could be stubborn and very fussy as a toddler. He never required much sleep at all! He had very few words by 3 years old. Meltdowns became much more frequent. Daily. Well, many days it was several times a day if I’m honest about it.  He was no longer easy to engage and I felt myself really having to work at connecting with him.  A wall had been put up. We began to become isolated because of our lack of sleep and Henry’s behaviors.

At about 3 1/2 years old, despite an explosion of language skills (relatively speaking), something still wasn’t right. I was at my wit’s end. Our family could not continue to live in the chaos that our home had become. When Henry was 4 years old, our pediatrician gave us the official diagnosis of PDD-NOS and ADHD. (I now feel that the ADHD is just a symptom of the Autism Spectrum for us but at this point it really doesn’t matter). The diagnosis wasn’t a surprise by that time. Pervasive Developmental Delay (or Autism Spectrum Disorder) made sense. It was a relief to have a name for our son’s differences. That relief was promptly followed by a hard kick in the gut by reality. Now what?!?

During that first year after the diagnoses there were so many therapy appointments, doctors’ visits, more evaluations and IEP’s. I was going to just about every seminar, conference, or workshop on autism spectrum disorders and childhood behaviors that I could, trying to glean some information that might actually help us at home. Despite all of my knowledge-gathering, I still felt isolated. We knew no one else who had a child on the autism spectrum. I was exhausted and overwhelmed. I just never seemed to have the time or energy to make that one more phone call to TouchPoint. That first year, every time I would speak to our pediatrician he would ask, “Have you called TouchPoint yet?”

As we approached the one year mark, I knew I could not bear to tell our pediatrician that, “No, I still haven’t called TouchPoint.” So finally, I made the call. In that very first phone call to them I realized that TouchPoint should have been my first call. (I’ve also become a better listener to our pediatrician!) I was amazed to learn about all of the programs and supports they had in place, not only for those with autism but for the family as well!

It was about this time that I decided to start a blog. Perhaps I could work on my writing and it might give me a diversion from constantly researching articles on autism therapies and treatments.  I thought the blog would really be just for me. A place where I could process things; put my feelings “out there”, and maybe even improve my writing skills.  I still felt so alone in all of this. With this new “hobby” I found a few autism blogs that I really enjoyed reading; one of them being Aaron’s Life on the Other Side of the Wall. I was thinking, “Wow, here’s a guy with Asperger’s blogging, being a productive citizen, sharing his experience of the autism spectrum, living life! He wrote a book! And he’s here in St. Louis? With TouchPoint? Wow!” ~my first glimmer of hope for my son to have a future, real potential for him to live a fulfilling and productive a life!

In 2010 I was  excited to learn that Aaron would be speaking at the  US Autism & Asperger Association (USAAA) National Conference here in St. Louis that year! I stopped by the TouchPoint booth at the conference and I was amazed at how welcoming they were. Aaron actually spent quite a bit of time talking with me about TouchPoint, his book Finding Kansas, and a bit about what it was like for him living with Asperger’s syndrome. Later, I was further impressed as I listened to Aaron participate in a panel of autism experts. He was seated right next to Dr. Temple Grandin for crying out loud! And Dr. Stephen Shore was at the other end of the table! They were all sharing their personal experiences of what it was like living with autism. Amazing!

It was in these moments that I realized my son is actually very high functioning and since then we have always described his autism as more at the “Aspergery-end” of the spectrum. I was gaining more hope.

My husband and I decided to make a commitment to further help our son and our whole family by attending TouchPoint’s ADAPT program.  This program is an on-site, 2-week intensive parent training session that we attended with our son. A true life-changer! When we got settled in for the program, I was surprised how immediately I felt at home here. I felt as if we had a place. We belonged here!

It was the ADAPT program that truly opened my eyes that I could see and experience just how smart Henry really is! This was the first (and only) program that not only allowed us to get a look into Henry’s thought processes but it gave us the knowledge and practical skills for us to use at home! We were connecting in so many positive ways! It was a bonus that Aaron came to speak to us as part of the program. The insights that he so generously shares into what it is like for him living with Asperger’s syndrome are incredible! Aaron truly conveys hope for those living with autism and their families. His passion for spreading Autism Awareness is inspiring!

We are now currently over two full years out from our diagnosis date and a year and a half from the completion of the ADAPT program.  Our son, Henry, has come so very far! He is in mainstream Kindergarten and doing so well beyond what I could have imagined! He’s still a quirky kid and most likely always will be. But he knows of his autism and is learning about it and he is learning to advocate for himself already. I also now have the privilege and honor of coming back to talk to the new families going through the ADAPT program, giving them a parent’s perspective. I love being able to come back “home”!

I am so very proud of my son! We have a long road ahead of us but I know we are on the right path.

I also know that because of Aaron and now with his Autism Awareness and Understanding Tour, he is paving the road ahead of us, helping to make our way so much smoother, inspiring us and giving us hope! Aaron gives us many gifts through his writing and presentations to peer over that “wall of autism” to SEE and connect! From the bottom my heart, I thank you, Aaron and TouchPoint Autism Services!

Autism Awareness: Video Links!

As as the month of April comes to a close I wanted to share some really beautiful autism awareness videos that have been made this month by a few of my blogger and Facebook “friends”.

Parents with children on the autism spectrum know that autism awareness doesn’t just happen for one month out of the year. It’s something that we do DAILY! 24/7/365! Some days it’s easy…but many more days it’s just damn hard!

I know these videos that I share will help to carry me through those rough days and I hope it will help to remind others that these are the faces of our beautiful children on the autism spectrum and they are worth fighting for every day, all year long!

Help us spread autism awareness, understanding, and acceptance!

Please take a little time to watch these wonderful videos and also check out these moms’ blogs/ Facebook pages!

Also, Henry, my dude, makes a cameo appearance in a few of these! See if you can spot him!   😉

Video “But S/he Doesn’t Look Autistic by stark.raving.mad.mommy

Video “More than a Number”  by No Guile: Life and Stories from Autism

Videos “Autism Awareness” and “Autism Awareness -Part 2”  by We Care About We Care About Someone with Autism

Video of Graceland Lighting It Up Blue with WiLd WoRld oF AuTism and Autism Speaks

Video “Autism We Are 1 in 70”  by Lisa F. (made before the new number of 1 in 54 came out!)

Video “Autism Awareness 2012: What Are You Waiting For” by Autism Moms

 

A very big THANK YOU from the bottom of my heart for all the moms out there that made such amazing videos of our kiddos and to those who share community and support on Facebook and in blogs. You all make me feel not so alone!  ~Karen

The Potatoes Made Me Cry

I was doing my weekly grocery shopping. Minding my own business. I also happened to be kid-free and was enjoying the moment.

I was strolling through the produce department where I came upon the potato bins. Do I individually pick out some small red potatoes or just get the more economical 5 pound bag?  I very rarely get the big bags because we just don’t usually go through that many potatoes. Innocent questions running through my head.

That’s when I noticed the tag on the 5 pound bags. And then tears came out of nowhere! (I was so grateful that the store was not crowded and no one was around!)

This caught me so off-guard. To see Autism Awareness being spread through POTATOES! It took everything I had in me to keep myself from sobbing. There I stood. In front of the potato bins. Tears welling up and spilling over down my cheeks. I was so moved that an entire food brand would champion our cause! Of course, I grabbed a bag and tried to somewhat collect myself.  I still had the rest of my grocery shopping to do.

Later at home I had to go check out the Klondike Brands website and found that they had a link to a very cute online story!

Thank you to Klondike Brands and the Autism Society for working to spread autism awareness one bag of potatoes at a time! I would have never expected potatoes to move me to tears!

Teaching Moment #2: Yep! You guessed it…

Toasters  & Hairdryers!

~But first, I must give full credit to Mom-NOS for sharing her concept and presentation  of a hairdryer kid in a toaster-brained world. Thank you so very much for sharing your brilliance! Truly!

~Also, thanks again to Caffeinated Autism Mom for her help in giving me some pared-down direction to make a presentation of my own using these ideas .

You ladies are amazing!  

Here’s Teaching Moment #1 just in case you missed that.

Now on to Toasters and Hairdryers

This time Mrs. KT started things off with the kids paring up to complete a Venn Diagram. ex:

Another exercise in how they are different and what things they might have in common. She gave them prompts: “draw your favorite food in your part of the circle”  and then “ask your partner what their favorite food is and draw that in their side of the circle”, etc.  After they had each drawn three small pictures of things that were different about them, they concentrated on the center over-lap, finding two things that they both liked. After some discussion about their diagrams it was my turn.

I started by reviewing just a little bit about what we talked about my first visit to the classroom, the book My Friend Has Autism, and the brain hats they made. I told them about how April is Autism Awareness month and about how some people might be putting blue lights on at their house to remind people about autism.  Some of them seemed to think this was pretty cool!

Then I told them it was time for pretend. We were going to pretend that our brains were made up of wires and metal and plastic which got a few giggles from them. Then I said, “Now, what if all these parts of wires and metal and plastic all got together and grew into a….toaster!?!” As I said this I reached into my bag and brought out our toaster. This got a lot of laughs.

“Hey! That’s from our kitchen!” Henry said.  Which brought on even more laughter.

“It IS from our kitchen. This very toaster made Henry’s breakfast this morning. So, what is it that toasters can do so well?”

“Make toast!” many of them said.

“Exactly! And they can make all kinds of toast. What else can they make?”

With this, many hands shot up and I got all kinds of good answers! (Yay! I was getting participation!)

“Waffles!”

“Pop Tarts!”

“Bagels!”

“Toaster Pastries!”

“Whole wheat toast!”

Excellent. Then I moved on to talk about, “Now what if MY wires and metal and plastic grew into a hairdryer?” And I reached in to my bag and brought out a hairdryer.

We talked about how even though toasters and hairdryers were made up of similar things, they were very good at different jobs.

“What if one morning Mrs. KT over-slept and because she didn’t want to be late for school she didn’t have time to eat breakfast. When she gets to the classroom, who could help Mrs. KT?”

“The toasters!”

“Right! But do you think I could also help? Don’t forget I’m a hairdryer.”

“No.” was the most common answer.

“Well, I probably could try to help Mrs. KT but it would be hard and it might take me a really long time, wouldn’t it?”

Henry’s hand shot up about this time. “I want to be a hairdryer, Mom. You be a toaster.” I’m thinking, “Dude you are SOOOOO a hairdryer!”

“Now, what happens on another day when Mrs. KT is running late and she gets to the classroom and remembers that she forgot to dry her hair?!? Who could really help her now?”

“The hairdryers!”

“Yep! But do you think all of you toasters could help dry Mrs. KT’s hair too? Maybe. But it would be hard, wouldn’t it? It would probably take a very long time! Especially since Mrs. KT has such long hair!”

Mrs. KT was nodding in complete agreement! (Side note that Mrs. KT does, in fact, have beautiful long dreadlocks that I adore!)

“So,  sometimes things are easy for us and other things we might have a hard time with that takes us longer. And that is okay, isn’t it? We’re all make up of the same kinds of things but how we are put together lets us be good at different things.”

By this point I could see that I was losing a few of the kids’ attention so it was time to hand out a coloring page that I had printed out of an awareness ribbon made of puzzle pieces that the kids could color. We put a colored picture of the Autism Awareness Ribbon up on the board and we talk just a little about the ribbon and about April being Autism Awareness month and I reminded them watch for houses with blue lights. And then it was time for me to go. Whew!

[This time I give myself a B. I felt much more comfortable with the kids and I had a good time. It made me feel good that I had gotten such good participation and that the kids really did seem interested! I can only hope that some of this information is sinking in! I will be forever grateful to Mrs. KT for giving me this opportunity!]

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