For the record...

I'm learning that there seem to be a couple of different "camps" for thinking about Autism in our society. Not surprisingly, if you google "Autism," you'll come up with thousands upon thousands of research articles, blogs, and sales sites with the latest products that you must have if your life has been touched by Autism. (And I'm happily eating up some of it, clearly.)

So many of these sites seem to come from the angle of curing Autism or viewing it as an undeserved burden that is plaguing children today. And while I want to state clearly that I agree that it is a burden on families and children to readjust to life with Autism in the family, I do not view it as a disease that must be cured.

My son has Asperger's. I do not believe that he "got it" from any of his vaccines, I do not believe he "got it" from any environmental factors and I do believe that his brain is simply wired a little differently than his father's and mine and that his unique traits do come from his family members, straight out of the gene pool into which each of us threw our genetic codes.

To view Jackson's condition as a disease would be a disservice to him and to the community of people who already know and love him so well and to which he has already contributed.

So what if I have to teach him a certain social skill five hundred times in a row over years and years that other kids his age are learning by osmosis? So what if he is sensitive in certain situations, limiting his or his family's participation? So what if he really, really, really likes trains and bridges and wants to play with them, study them and talk about them all the time?

He also notices the moon in the middle of the day almost every single day, remembers more from his early years than even I do and can tell you exactly how many light bulbs are out in every store or restaurant within just a couple of minutes of arriving.

I don't call that a disease. I don't know exactly what he's going to do with this level of insight into the world, but it takes all kinds of minds and I'm excited to walk the path with him to help him find out.

I don't want to cure my son of Asperger's, I want to embrace him with his Asperger's blanket wrapped tightly around him--as a buffer between our two worlds--as I strive to help him learn more about ours and absorb all that he'll let me about his.

I think that maybe the parents/organizations who are trying to cure kids of Autism might be missing a very important piece of the puzzle...

New on the Nightstand

Just picked these up from the library tonight:

Not Even Wrong: A Father's Journey Into the Lost History of Autism (2004) by Paul Collins
• Paul Collins is one of the guests from the Speaking of Faith show about Autism earlier this month and I was really excited to read his book after hearing the show. I cracked it open immediately when I arrived back home and I'm already on chapter two.

Different Like Me: My Book of Autism Heroes (2006) by Jennifer Elder
• Jennifer Elder is the other guest from that SOF show and also happens to be Paul Collins' wife. Her book is written for older kids and is filled with 2-page spreads on famous (and not-so-famous) people who either had/have Autism or it is speculated that they did. Sir Isaac Newton, Andy Kaufmann, Albert Einstein, Temple Grandin... Looks pretty cool to me.

Autism Shop

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.

"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

"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"

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.

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.)

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

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

"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!

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

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.

Temple Grandin

Temple Grandin is one of the most well-known adults with autism in the world. She's written several books about autism and tours the world giving talks on the subject. There's even a movie about her! (We have yet to see it.)

The first book I read after learning about Jackson's Asperger's diagnosis was Dr. Grandin's "The Way I See It: A Personal Look at Autism and Asperger's" (2008). Her upbeat, take charge, hard-working attitude towards autism in her own life is inspiring and the book set a very positive tone for my new relationship with Autism.

"Highly Recommend" is an understatement.

Temple Grandin websites:

http://www.templegrandin.com/
http://en.wikipedia.org/wiki/Temple_Grandin

Thanks to having an incredibly supportive husband who is encouraging me to go, I just registered for this conference on Autism and Asperger's in Minneapolis next month. Dr. Grandin is one of the featured speakers and I'm very excited to see her in person!

"The World Needs All Kinds of Minds"

Temple Grandin's TED Talk: "The World Needs All Kinds of Minds"

I can't recommend this 19-minute talk enough!! 

Why we pulled our son out of preschool

(This was originally posted at yogurt & granola on 5/10/10.)

Jackson's former preschool was such an important relationship for our family during this past school year. There were many ups and downs for Jackson during the school year--including a very sad 6-week adjustment period back in the fall which seemed normal at the time but now is looking more clear through the lens of Asperger's--and we are so grateful for the time that he spent there.

But it turns out that he was in the wrong school. (Wrong for Jackson, not wrong overall.) It was a Waldorf-based preschool which incorporates a lot of free-play time and encourages imaginative play. They focus on oral storytelling and do lots of singing. These are all wonderful things, of course, and some of the reasons we were drawn to the school in the first place. But for a concrete thinker like Jackson who relies on patterns/routines, rigidity and words (even though he can't read yet*) to guide his day, he simply didn't know what to do there.

He did excel in some areas at preschool and did indeed have a lot of fun at times. But I think he was continually confused about why I was bringing him there when he knew that it wasn't the right kind of place for him. Part of me wishes that we had known his learning style more deeply before enrollment so we would have made a better match for him school-wise, but at the same time I'm happy that he was there because the contrasting styles made the concerns about him stand out all the more, which allowed us to pursue assistance immediately. (If he had been in a more typical preschool, it's quite possible that he would have blended in more but been pegged as a naughty kid vs. a kid who needed some special help.)

They noticed the differences between Jackson and the other kids pretty early on and worked very hard to accommodate Jackson's learning style within the Waldorf program. We had a number of parent-teacher conferences and quick conversations/email exchanges to check-in on certain behaviors he was displaying and they were very much in tune to Jackson not being in tune throughout his time there.

It was one of these parent-teacher conferences that made us rethink the initial Kindergarten screening that Jackson had had back in the winter of '09 and wonder if maybe the evaluators were on to something when they passed him but noted a "social/emotional concern possibly requiring further evaluation." The teachers were enthusiastic about our restart of the evaluation process with the public school system and worked with us to assess, manage and guide Jackson throughout the next couple of months while we waited in line for our turn at the Early Childhood Special Education table.

Yet I felt incredibly helpless during this time. Things weren't going well for Jackson at school, his teachers had tried every tip and technique at their disposal, Jackson was noticeably unhappy and the situation wasn't much better at home. It was very hard to wait for the evaluations to begin.

It was the beginning of March when Dan and I realized that we didn't have to keep sending Jackson to preschool while we waited for his evaluation to formally begin if it wasn't going well. Preschool is not required schooling and we weren't using it as childcare since I'm home with the kids anyway. We loved his school and wanted to keep sending him there because we wanted it to work, but it just wasn't going to happen. Jackson didn't match the school's philosophy and the school didn't match Jackson's needs.

So we pulled him out of school. It was a decision that felt very rebellious and rogue in a way (Dan and I are not rule-breakers) but also was clearly the right decision because things started getting easier all around after that. The school itself was not the problem, but the process of continually sending Jackson to a school that didn't work for him was stressful for everyone involved: the teachers, the parents and most importantly, Jackson.

Jackson started coming to my Early Childhood Family Education class with Amelia and me and he loved it immediately and started to feel comfortable there. ECFE is a great stand-in for the remainder of this school year,  and now we've got his evaluation completed with a plan of action for next year, so all's well that end's well.

Except we had a great relationship with his school that we didn't want to just cut off because our kid didn't match the style there! Happily, the teachers agreed and have maintained contact and even came to our home for an extended goodbye visit so Jackson could spend some time with them again and we could talk about our process, where it's all headed and thank them for bringing so many details to the light for us.

*Jackson was asked by one of his evaluators to rearrange four story cards in the right order and tell the story of what was going on in the photos. He replied, "Well, let me tell you something about stories. Stories have words and these pictures don't have words so I can't tell you their story." The boy can't read on his own yet, but his rigid way of thinking about stories is clearly already set. Indeed, his dad is upstairs reading The Hobbit to him for the third time right now...

love, friday (asperger's edition)

(This was originally posted on 5/7/10 over at my main blog, yogurt & granola. "love, friday" is a [semi-] regular feature over there.)

• Love finally coming to the end of a very long journey, even though we know it's actually just the beginning of a new one.

• Love having answers about our son's quirks, abnormalities and otherwise atypical behaviors.

• Love Willow House preschool for the gentle ways in which they worked with Jackson and first alerted us to some of the things that seemed unusual.

• Love our school system for the intense evaluation they provided and the loving embrace with which they delivered their findings.

• Love our pediatrician's office and the connection to a first-rate developmental/behavioral pediatric doc who concurred with a medical diagnosis after spending time with our boy and reviewing page after page of interview detail and school reports.

• Love that Jackson will receive placement in a private, mainstream preschool next year with our public school system footing the bill, since he qualifies for special services now. Love that there will be a special ed. teacher on staff to support him with his specific IEP to achieve his goals for the year for 20% of the time, but the other 80% of the time will be spent just acting like a preschool kid.

• Love that busing is included in this incredible gift for us so that Amelia will get her afternoon naps since I won't be shuffling her brother all around town.

• Love the spectrum.

• Love my son's brain and finding new ways to learn how it works.

• Love this blog post about toasters and hair dryers. (Read it. I'll wait. It's fascinating.)

• Love finally knowing that Jackson is an Asperger's kid. Asperger's cannot be cured, it isn't a disease and it's not even a defect. It's a brilliant gift that provides another way to see this world.

• Love that my boy isn't flawed, but rather, is enhanced. Love that his memory capacity is almost off the charts. Love that his cognitive ability is extremely high. Love that he's predicted to excel in academics. Love that his language is beyond his years, even if he does sound a little weird to his peers. Love that his capacity to love is deep, even if he has trouble finding ways to share it. Love that his hearing is so amazing that he notices the faintest songs playing in the background when people are talking and starts to sing along. Love that his intense focus (INTENSE FOCUS) on whatever he's doing suddenly makes sense.

• Love that we have such a huge network of friends and family who are already reaching out and showing their support for us in person, over the phone, via email and yes Dad, even on Facebook.

• Love that Jackson's future seems brighter now, not darker. He's the same exact boy now as before we received the diagnosis, but now we can better understand how he learns and help him grow and love and be happy and successful in this world.

love, friday (aspergers edition)