I went to the locally-based Autism Shop last week and found some great resources for helping Jackson. The shop is a non-profit too, so all of the proceeds go to support Autism research.
Books:
Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate and Think (2006) by Stanly I. Greenspan, M.D. and Serena Wieder, Ph.D.
• The D.I.R./Floortime model is something that we're exploring at a local Autism support center, Celebrate the Spectrum, and has been recommended for Jackson by a few people (including the developmental doc).
• Stanley Greenspan recently passed away on April 27, 2010.
The New Social Story Book (2010) by Carol Gray
• Carol Gray will be at the conference I'm attending in a few weeks so I'm excited to have her latest book in hand. Social Stories are creative and clear ways to "brainwash" children on the Spectrum to learn the things that they will not learn by osmosis (like the rest of us do). For example, we may use a Social Story to help Jackson understand "When is it my turn to listen?" or "Learning to help others."
Try and Stick with It (2004) by Cheri Meiners
• This is a child's story book from the "Learning to Get Along" series and the title seemed very appropriate for us since Jackson has a mental block with trying new things...a lot...
All Cats Have Asperger Syndrome (2006) by Kathy Hoopmann
• This picture book filled with adorable photos of cats takes both a funny and a serious approach to learning about Asperger's. It takes about 5 minutes to read it, so it's a really easy to way to share the main traits of Asperger's with friends and family, in a very cute way. "An Asperger child looks at the world in his own unique way. He likes to be near those he loves, but doesn't want them to hold him..."
Visual Aids
My Schedule Board and Eye Pics Set 1
• These tools will be indispensable in teaching Jackson what comes next in his day and the things he needs to do before an activity (i.e. the steps he has to take in the morning to get up, use the bathroom, get dressed and come down for breakfast). We're learning that he's a visual learner and these little 2" cards that get attached to a strip that he can carry around as a cue card if he wants will help to ease the stress of mom and dad always telling him what to do and Jackson always opposing it. Now, we'll be able to say "Check your schedule board!"
3" Time Timer
• This is the same type of deal as the schedule board. It's a visual timer that can help Jackson learn how long a length of time is and also be prepared to, for example, get in the car in 10 minutes. You set the timer and the red section slowly disappears as time ticks down. There's an audible bell that can be switched on or off. I'm a little worried about Jackson having some anxiety related to "oh my gosh, I don't have enough time left!" but I think overall this will work for him because, again, it takes the "blame" away from the parents ("check your timer!") and is a visual time cue that will work for his stage of development since he can't read clocks yet.
We also got some fun toys like a cyclone tube connector and Thomas the Tank Engine card game to learn turn-taking through one of his favorite toys.
May 23, 2010
May 16, 2010
"Parallel Play"
"Tim Page, a music critic for the Washington Post, reflects on living with Asperger's Syndrome." This was linked from the Speaking of Faith page and I also found this a fascinating read.
"Parallel Play" (2007) by Tim Page
"Parallel Play" (2007) by Tim Page
"Being Autistic, Being Human"
I just listened to this broadcast of Speaking Faith with Krista Tippet: "Being Autistic, Being Human" and found it fascinating. I highly recommend it!
From the website:
"One child in every 110 in the U.S. is now diagnosed to be somewhere on the spectrum of autism. We step back from public controversies over causes and cures and explore the mystery and meaning of autism in one family's life, and in history and society. Our guests say that life with their child with autism has deepened their understanding of human nature — of disability, and of creativity, intelligence, and accomplishment."
"Being Autistic, Being Human"
From the website:
"One child in every 110 in the U.S. is now diagnosed to be somewhere on the spectrum of autism. We step back from public controversies over causes and cures and explore the mystery and meaning of autism in one family's life, and in history and society. Our guests say that life with their child with autism has deepened their understanding of human nature — of disability, and of creativity, intelligence, and accomplishment."
"Being Autistic, Being Human"
May 14, 2010
Hindsight, Tuning In
As we learn more about Asperger's and learn to recognize the signs, our hindsight in looking back on our years with Jackson is becoming perfectly 20/20.
• Remember that time, dear family, when we went to the state fair and spent the whole day there as we always have but Jackson was looking noticeably zoned out and "lost" about midway through the day? Remember how he needed to ride in the stroller with the sunshade out AND a blanket hanging over the front AND he asked to wear his cousin's sunglasses? Yeah, that was sensory overload at it's finest. Yet our son seems to have amazing coping skills and (so far) hasn't inserted the tell-tale loud, earth-shattering meltdown that is usually associated with sensory overload...
• ...except for one time just before Amelia was born, when we went to a picnic and someone was shooting off those "worm balloon" things that go straight up in the air and squeal out their air very loudly as they make a crazy zig-zag back down to earth. That was the only time in my son's life that I've EVER seen a total flip-out. He had PURE FEAR on his face, screamed over and over, burst into tears, grabbed the leg of the nearest older child next to him (she was about 10, so a lot taller than him), realized she wasn't me and started running for the driveway to get away from the sound. I grabbed him and started consoling immediately (as everyone else was laughing and having fun) but he never recovered that night and talked about the dreaded worm balloons for a good year after that. Those balloons CLEARLY hit one (or multiple) senses for him in the wrong way and he just lost it.
• There was a time when Jackson was having horrible separation issues at our ECFE class when it came time for the parents to go down the hall and leave the kids for an hour (with the teachers). He was about 2 1/2. The teachers and I tried everything, but nothing was working for him. On a whim one day at home, I grabbed a piece of paper and sketched the classroom. I drew out each spot where he liked to play ("this is where you do art, this is the sensory table, here's where you play with the big truck"), and we "played" within this paper classroom for about five minutes. We even sang our circle songs. Then I grabbed more paper and drew the hallway, then the parent classroom and drew footsteps to show me going down the hall, getting a cup of coffee and sitting down at the table. He asked me to tape the sheets together and then studied it for a good long time. I think he even kept it in his room for a few weeks. After that, we had ZERO separation problems. That's a perfect example of visual learning, something that Asperger's kids thrive on (and I didn't even know what I was doing/dealing with back then!).
• Jackson's verbal ability is beyond his years, to be sure. Everyone is always astounded by his vocabulary and "mature" way of speaking (even his evaluators). We've always found it cute and quirky that he memorizes entire Thomas the Tank Engine episodes and reenacts them with his trains or adds in a line from one of his shows or books when we are chatting with him. He's "read" books to his sister with 100% accuracy--even though he can't read--and narrates almost all of his play with phrases like "oh no, gasped James, the old wooden bridge is going to fall! James quickly sped across the bridge to get to the other side and alert the others about the dangerous passageway." We've always just thought this meant he was smart (and it does, he is) but what it really means is that he's AWESOME at echolalia. It doesn't have to be a bad thing that needs to get "fixed" out of him, but there are definitely times when he's using it because he knows a response is expected of him, and he needs to buy himself time to process a good/appropriate one. Coming up with an appropriate phrase from one of his stories gets him off the hook in a cute way. (Aspies are s.m.a.r.t...........)
So much of his language sounds different to us now in this context. This new way of helping him understand what we mean with visual cues is astounding because it actually works. And his sensitivities to light and sound (and I have my suspicions about taste sensitivities too) are getting so much more obvious to read. It's almost like we are living with a different kid, even though we are the first to say that he's the same boy now as he was before the diagnosis. WE are the ones who are different now. We are finally tuned in to our boy, to learn about why he's been tuned out so often, or more appropriately, tuned in to a different channel. The reception was static-y for a long time, but now we're tuned in loud and clear.
• Remember that time, dear family, when we went to the state fair and spent the whole day there as we always have but Jackson was looking noticeably zoned out and "lost" about midway through the day? Remember how he needed to ride in the stroller with the sunshade out AND a blanket hanging over the front AND he asked to wear his cousin's sunglasses? Yeah, that was sensory overload at it's finest. Yet our son seems to have amazing coping skills and (so far) hasn't inserted the tell-tale loud, earth-shattering meltdown that is usually associated with sensory overload...
• ...except for one time just before Amelia was born, when we went to a picnic and someone was shooting off those "worm balloon" things that go straight up in the air and squeal out their air very loudly as they make a crazy zig-zag back down to earth. That was the only time in my son's life that I've EVER seen a total flip-out. He had PURE FEAR on his face, screamed over and over, burst into tears, grabbed the leg of the nearest older child next to him (she was about 10, so a lot taller than him), realized she wasn't me and started running for the driveway to get away from the sound. I grabbed him and started consoling immediately (as everyone else was laughing and having fun) but he never recovered that night and talked about the dreaded worm balloons for a good year after that. Those balloons CLEARLY hit one (or multiple) senses for him in the wrong way and he just lost it.
• There was a time when Jackson was having horrible separation issues at our ECFE class when it came time for the parents to go down the hall and leave the kids for an hour (with the teachers). He was about 2 1/2. The teachers and I tried everything, but nothing was working for him. On a whim one day at home, I grabbed a piece of paper and sketched the classroom. I drew out each spot where he liked to play ("this is where you do art, this is the sensory table, here's where you play with the big truck"), and we "played" within this paper classroom for about five minutes. We even sang our circle songs. Then I grabbed more paper and drew the hallway, then the parent classroom and drew footsteps to show me going down the hall, getting a cup of coffee and sitting down at the table. He asked me to tape the sheets together and then studied it for a good long time. I think he even kept it in his room for a few weeks. After that, we had ZERO separation problems. That's a perfect example of visual learning, something that Asperger's kids thrive on (and I didn't even know what I was doing/dealing with back then!).
• Jackson's verbal ability is beyond his years, to be sure. Everyone is always astounded by his vocabulary and "mature" way of speaking (even his evaluators). We've always found it cute and quirky that he memorizes entire Thomas the Tank Engine episodes and reenacts them with his trains or adds in a line from one of his shows or books when we are chatting with him. He's "read" books to his sister with 100% accuracy--even though he can't read--and narrates almost all of his play with phrases like "oh no, gasped James, the old wooden bridge is going to fall! James quickly sped across the bridge to get to the other side and alert the others about the dangerous passageway." We've always just thought this meant he was smart (and it does, he is) but what it really means is that he's AWESOME at echolalia. It doesn't have to be a bad thing that needs to get "fixed" out of him, but there are definitely times when he's using it because he knows a response is expected of him, and he needs to buy himself time to process a good/appropriate one. Coming up with an appropriate phrase from one of his stories gets him off the hook in a cute way. (Aspies are s.m.a.r.t...........)
So much of his language sounds different to us now in this context. This new way of helping him understand what we mean with visual cues is astounding because it actually works. And his sensitivities to light and sound (and I have my suspicions about taste sensitivities too) are getting so much more obvious to read. It's almost like we are living with a different kid, even though we are the first to say that he's the same boy now as he was before the diagnosis. WE are the ones who are different now. We are finally tuned in to our boy, to learn about why he's been tuned out so often, or more appropriately, tuned in to a different channel. The reception was static-y for a long time, but now we're tuned in loud and clear.
T-shirts
We ordered these t-shirts from CafePress so the kids would have something to wear to the Autism 5K that we're participating in tomorrow (they didn't offer kid sizes in their awesome t-shirt design for some reason). They just came today and I can't wait to wear mine with pride!
(Hint: If you search "Asperger's" or "Autism" on CafePress, you'll find pages of designs that can be printed on t-shirts, mouse pads, mugs, canvas totes and just about anything else you could dream up. Some of the designs are incredibly stupid, but most of them are pretty cool.)
May 13, 2010
New Books on the Nightstand
I just picked up these books from the library today:
"Quirky, Yes. Hopeless, No: Practical Tips to Help Your Child with Asperger's Syndrome Be More Socially Accepted" (2009) by Cynthia La Brie Norall, Ph.D. with Beth Wagner Brust
"The Asperger's Answer Book: The Top 300 Questions Parents Ask" (2007) by Susan Ashley, Ph.D.
"The Mom's Guide to Asperger's Syndrome and Related Disorders" (2007) by Jan Johnston-Tyler
"Quirky, Yes. Hopeless, No: Practical Tips to Help Your Child with Asperger's Syndrome Be More Socially Accepted" (2009) by Cynthia La Brie Norall, Ph.D. with Beth Wagner Brust
"The Asperger's Answer Book: The Top 300 Questions Parents Ask" (2007) by Susan Ashley, Ph.D.
"The Mom's Guide to Asperger's Syndrome and Related Disorders" (2007) by Jan Johnston-Tyler
Toasters and Hair Dryers
My friend sent me a link for this blog and I've been repeating this amazing analogy for understanding and explaining Autism to kids (people! everyone!) for a couple of weeks now. This mom went to her son's classroom to talk to the kids about why her son was a little different and how they could be friends with him. Her story about toasters and hair dryers is funny, eye-opening and easy to understand. I dare you to read just one post and not click through to the entire series!
MOM Not Otherwise Specified: A hair dryer kid in a toaster-brained world
MOM Not Otherwise Specified: A hair dryer kid in a toaster-brained world
"Ten Things Every Child With Autism Wishes You Knew"
The second book I read after learning about Jackson's diagnosis was "Ten Things Every Child With Autism Wishes You Knew" (2005) by Ellen Notbohm. It's a quick read and offers information both from a child's viewpoint (I am first and foremost a child. I have autism. I am not "autistic.") and a mother's viewpoint. Very helpful. Definitely the kind of book you want your entire family to read.
Here's a link to the Ten Things article (I'm not sure this is the actual first place it was published, but the text matches the book verbatim). You'll have to get the book to read the rest!
Here's a link to the Ten Things article (I'm not sure this is the actual first place it was published, but the text matches the book verbatim). You'll have to get the book to read the rest!
Facts
What IS Asperger's? That's the million-dollar question. There are many (MANY) websites that answer this question with varying degrees of detail and authority. Here are a couple of links for sites that seem to fall in line with what our educators and doctors have said. Bulleted lists of symptoms and signs can be very helpful.
20 Facts About Asperger's Syndrome in Children
Asperger's Syndrome Fact Sheet--National Institute of Neurological Disorders and Stroke
20 Facts About Asperger's Syndrome in Children
Asperger's Syndrome Fact Sheet--National Institute of Neurological Disorders and Stroke
Joshua and his Mom
Many friends have sent this link to me in the past week and it's really a sweet, almost heart-wrenching little animated clip. A 12yo boy with Asperger's interviews his mom and their exchange is really neat. I can totally hear/see Jackson in this clip, even though my son is only 4.
Q&A from StoryCorps on Vimeo.
Q&A from StoryCorps on Vimeo.
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