Life and Ink’s Letter To “I Wish I Didn’t Have Aspergers”

“I wish I didn’t have Aspergers.”

That’s a loaded sentence.

I have thought a lot about what I would say to someone who had that thought.

First, I would say I understand.

I would say you are not alone.

I would say I know some of the challenges.

I would say that there was a brief moment when I wished I could have played God and taken 30 points off my son’s high intellectual IQ. I would have added those 30 points to his extremely low social skills IQ in hopes a higher number would magically alleviate the social struggles he had.

I would be dishonest if I didn’t say I had that thought.

But it is my intent to be honest with you.

And, well, I am not God.

So I couldn’t change his IQ distribution.

Besides, when I did the math, even with a 30-point rearrangement he would have remained gifted, but still be two standard deviations below the norm socially.

So why bother.

Moreover, why spend valuable time wishing I could change my son. Yuck.

Instead we focused on accentuating his strengths, his gifts.

Everyone has gifts.

YOU have gifts.

So, the next thing I would say to you is let’s sit down and have tea and together discuss the gifts that come wrapped up in packages we call Aspergers.

*   *   *

My son Ted is 20. He was diagnosed with Aspergers when he was 4.

He is the most interesting person I know.

He fascinates me really.

He is honest. He is cutting. He is smart. He is insightful.

He laughs more than anyone I know.

He has more self-awareness than any adult I know and I often wonder if because of Aspergers, he is free from the confines those who are called neurotypical create for themselves.

He thinks for himself rather than being swayed by popular opinion, even when its been difficult to do so.

It’s awesome actually to think how he lives in a world where he is not perpetually worried about what others think.

Do they like me?

Do I look okay?

Am I smart enough?

Do I fit in?

Free. Totally free from all of that while maintaining the strength of character to exist against the grain and maintain his individual identity. That is strong stuff and I don’t believe individuality like his gets nearly the credit it deserves in our sheeple, keep up with the Joneses culture.

In addition to not being swayed by popular opinion, Ted is neither interested in, nor motivated by material things. Instead he is absorbed by ideas.

Questions of religion, history, physics and philosophy fascinate him and armed with a photographic memory, his depth of knowledge on topics is awesome. And so much of it is self-taught. For when other kids were doing other-kid-things, Ted was reading. Our extroverted culture has called him a loner, even a loser for his pursuits. He sees it differently. He pridefully calls himself smart.

It’s a matter of perspective and for Ted all he has ever asked of the world is, if not to understand his perspective, to at least respect it enough to be kind to him.

When he was little, because of his different interests, he was called a “loser”, “sick boy” and “weirdo” by his peers. The so-called normal kids. He hit those kids. In all the episodes Ted was involved in, and believe me there were a lot, when the situation was looked at closely he was not the initial perpetrator. It was just a guileless Teddy, who acted for all to see, who got caught, punished and told he had to change.

But see, Teddy didn’t have to change, not fundamentally, he just had to be refined, taught how to behave in social situations. Thank goodness for all those intellectual IQ points, because he was able to learn to adapt. He was born with all the tools, all the gifts he needed to succeed.

And he did succeed.

He adjusted. Now the world needs to do the same.

See, we didn’t have to rearrange the IQ distribution after all.

I didn’t have to play God, I just had to be mom and help him learn to use what he had been given so he can help himself.

So finally, the last thing I would say to you is think about your gifts, your talents and how you can make them shine. You are made how you are supposed to be made, you are not supposed to be changed or redistributed.

For your are beautiful.

You are beauty wrapped in Aspergers.

In every block of marble I see a statue as plain as though it stood before me, shaped and perfect in attitude and action. I have only to hew away the rough walls that imprison the lovely apparition to reveal it to the other eyes as mine see it. Michelangelo

This post is part of the #AutismPositivity2012 FlashBlog.  To read more about the Project, please go here!

A Fantasy For Autistics

When I read this today on Emma’s Hope Book it just hit me, like, POW!

I like the way this woman thinks!

Thank you Ariane for allowing me to repost your work.

By Ariane Zurcher

Last Monday Emma was profiled in A Slice of Life Series that the blog Thinking Person’s Guide to Autism has been running through the month of April.  This is the blog I wish had been around when Emma was first diagnosed, but that I am so grateful exists NOW, because it is by and for Autistics and those who care for them.  Almost all the comments were from Autistics who have blogs of their own and I recognized almost every single one of their names.  One of the people who reached out, Savannah, has a terrific blog called, Cracked Mirror in Shalott.  After she commented on this blog, I went to hers and read a powerful post, entitled Payment about teaching life skills to young Autistics.  The first sentence of her post is:  ”I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.”

I will do her writing a disservice by trying to relate it here, so I urge anyone reading this to go to the link I’ve provided.  I commented on her post and inquired if it would be okay to ask for any thoughts on how to help Emma learn to wash and rinse her hair, which we’ve been working on for close to a year now, with on-again-off-again success.  In reply I received not only a lovely and thoughtful response from Savannah, but another from someone else, who had some terrific suggestions and also has a blog, Chavisory.  As I pondered the various responses I began to formulate a fantasy.  A fantasy of what I would love to see, what I hope I will live long enough to see, a vision of a different sort of world.  A world in which adult Autistics were mentoring and helping younger Autistics.  A world where adult Autistics were involved in every aspect of society, education, government, policy.  I imagined a world where Autistic writers had columns in every major newszine, newspaper and magazine.  A world in which every single school had Autistics teaching, devising curriculum, training and teaching neurotypicals how to best teach children on the spectrum and as I allowed this fantasy to develop I felt a surge of energy and excitement.  I literally felt like jumping up and down.  When Richard appeared, bleary-eyed and slowly reached for his cereal bowl, unable to contain my excitement any longer, I blurted out, “Can I tell you about my dream?”

“Can you tell me?” Richard asked, with a dazed expression.

“Yes.  Can I tell you?”  Unable to hold back any longer I launched into my fantasy, while Richard was still forming the words – “Yes, of course. Tell me.”

“Can you imagine what it would be like if adult Autistics were writing books, teaching us, training us parents how we could best help our Autistic kids?  Can you imagine how amazing that would be?  Can you imagine how helpful that would be?  Autistics have insights that we can’t possibly have, they understand better than anyone the various sensory issues, delays in motor skills that might be making it harder for children like Emma to learn how to do some of these things.  Can you imagine?  Can you imagine a world where schools were created and run for and by Autistics?”

And before Richard could reply I kept going. I was on a roll.  The excitement I felt just thinking about all of this was so great I couldn’t sit down.

“Think about it.  It would be so amazing, unlike anything we’ve ever experienced.”

As I considered this fantasy world I felt the stirrings of determination.  Why does this have to remain a fantasy?  Why can’t this be a reality?  What would have to happen for this to go from far-fetched fantasy to reality?   I’m sure others have had this thought.   What would need to happen?  What are the next steps?  I bet others have begun to make this a reality and if so, I’d love to know about them.

Thoughts?

For my latest piece in the Huffington Post – Running With Mermaids

To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’

*   *   *

Great thoughts Ariane!

Building: It’s A Girl Thing

Last weekend a friend came up to the lake for a visit. And although we sat outside and enjoyed the view and a drink, our time together had more of a business-like focus.

We are thinking about building an airplane together.

I have been casually pondering building one for several years and now she too is very interested.

And I am excited!

And yes, overwhelmed.

It’s a huge project and there is much research to be done prior to embarking on such an endeavor.

But just the IDEA that we are discussing the POSSIBILITY of this project is exciting. Moreover, I am excited that my partner would be another woman. With only 6% of all licensed pilots in the U.S. being women, I imagine the two of us would be pretty unique in the airplane building world.

I like that.

This is the Van’s RV-12 I want to build.

Great little airplane, isn’t it.

After she left, I pondered our conversation and the possibility that in a year I may be starting an entirely new kind of project.

Creating – making a vision that is in my head come to life with my hands is absolutely, without a doubt, one of my most favorite things to do.

Building is exciting, overwhelming, exhausting and rewarding.

I know.

For I was having these thoughts while upstairs in our lake house’s bunk room, and as the thoughts of building were bouncing around in my head, I opened my eyes to the space I was in. I mean really opened them and took in all that was around me. I was sitting in a space my husband Neal and I created, and I still shake my head sometimes because I can’t believe we did all this.

We gutted an ENTIRE house, inside and out and put it back together with a very limited budget and guided by the ideas in my head.

DANG!

It had to be one of the most daring things we have done. Yet the results are absolutely delightful. A year of my life was spent as a self-taught, full-time carpenter. What a year it was!

This is part of the upstairs space the day Neal and I first looked at the house in September 2005.

We gutted the entire space and when we did we discovered three windows that had been covered in drywall. These windows all have a view of the lake and trees. Why would anyone cover those???

The original space had two small bedrooms and 7-1/2 foot ceilings. You can see the framing for one of the bedrooms and the ceiling joists in the photo below.

The framing and joists were removed and the walls got new drywall. We hired an electrician to rewire. I don’t do electrical or plumbing! Removing the framing caused an issue: not only did the framing create rooms, it also helped hold up the roof. Having the roof stay where it was is kind of important. So, since we didn’t want the two rooms back, on either end of the space we installed 6×6 vertical posts to support a 6×6 horizontal post. This is the new roof support system. You can also see six of the 16 new 2″x8″x8′ joists that we installed for the new 9 foot vaulted ceiling.

Damn those suckers are heavy!

And speaking of heavy, so is drywall. A 4′x8′ 1/2″ piece weighs 54 pounds. Neal and I were installing 17 sheets, OVER OUR HEADS. So we cut them into 2′x8′ pieces… no problem because the one that would do the taping and mudding was also the designer, ME!, and to avoid having to do that work, I decided to use batten boards to cover up the seams. SO MUCH EASIER and they added a nice architectural feature. Form AND function! We also insulated the ceiling prior to installing the drywall.

Neal calls me “Gales of Creative Destruction.” I call myself “Builder Babe.” Here I am installing plywood around the bunks. Hinges were used on the smaller end pieces for access, creating much-needed under-the-bed storage.

Neal and I installed 50, 1″x4″ batten boards. Armed with a nail gun we were able to knock it out in a day. SO MUCH EASIER than mudding!!! It took another whole day to caulk.

The completed room. Looking at the wall with the three windows found during demo. I wish the camera didn’t white out the windows because outside all you see is foliage and you feel like you are in a treehouse.

The furniture all came from a flea market. Vintage Pretzel chair and Heywood-Wakefield table – less than $50 each! Lamp and pottery is from Pier One.

The other end of the completed space. A fresh coat of paint on the wood floors and we were done. The inspiration for the colors came from the lake woods setting and clean, minimal and yes, inexpensive, were the theme for the design. The ceiling fixture came from Pier One. The carpet tiles from Home Depot.

Shortly after we finished, my friend who is both my flying and building inspiration came to visit and see the work. The three of us were sitting on the bunk you see in the first two “After” photos, when Neal and I mentioned how tired we were. He told us one day we would forget all the pain the work brought and we would only remember the joy having such a place to share with our friends and family would bring.

As he said those words, being more physically exhausted than I had ever been, I could only hope he was right.

He was.

Working together, Neal and I created a delightful lake retreat. The challenges of remodeling an entire house were huge, but the rewards have been worth every moment.

Now, how about that airplane…

Soon: More lake house remodeling photos

No One Told Me It Would Be So Hard To Educate A Bright Child

soft blue letter

The following is a letter I wrote after the worst IEP meeting I ever attended. I sat and listened to a group of education professionals, who I thought were supposed to have my child’s best interests in mind, itemize everything Teddy “did to them” while not once addressing a single strength or the possibility they just might have contributed to his struggles. This was my attempt to point out what I saw as the contributing factors to Teddy’s regression.

May 24, 1999

Dear Members of Teddy’s IEP Committee and concerned others,

I am writing this letter to address issues that were not discussed at the May 21, 1999 IEP gathering. Overall, the tone of the meeting was very negative. It is crucial, in preparing a worthy IEP for Ted, to fully examine his history and that means more than just a discussion of his problems. Ted has had so much success and that was completely omitted this past Friday. It is very relative to examine what happened from Ted’s kindergarten year to his first grade year. We had the same child, two different teachers and very different results. This is very telling. We must also address that, in Ted, we have two exceptionalities, Asperger’s and Gifted. He is NOT Emotionally Conflicted. It is also important to remember that we are only considering this placement to accommodate the school system, not Ted. It is our preference he attend his zoned elementary school but they do not have a full-time staffed resource room that he could go to when the pressures of a mainstreamed classroom are too great. Nor, despite our many requests, is the school system willing to provide Ted an aide.

First, let’s revisit Ted’s wonderful kindergarten year. It was said by the special education teachers in the spring of 1998, “At the beginning of the year Ted was the student we were most concerned about, by the end of the year, he was the student we were least concerned about.”

Ted’s kindergarten teacher was firm, had clear behavioral expectations yet was very loving. He felt safe, secure and loved. He was provided the social supports so needed by a child with Asperger’s Syndrome and excelled.

When Ted began 1st grade, everything changed. The crucial elements of love, security and acceptance were removed. He had a rigid teacher with whom he felt very uncomfortable. He no longer felt safe and secure. He was under a behavioral magnifying glass. He did however behave in one on one situations. Ted went to the library as a “safe place” from his classroom and peers and he felt very secure with the staff and was not a behavioral problem there. He also went to the resource room every afternoon, another place he felt safe, and had no problems there either.

In addition to Asperger’s Syndrome, Ted is gifted. Very gifted. He has scored as high as 160 on IQ and academic achievement tests. I think this issue wasn’t addressed appropriately at the May 21st meeting. Ted sat in a 1st grade class spending the morning learning to read. As I have stated before, my son started reading his first words at 2 ½ and has read books since he was five. Yes, he needed phonics skills, but can you imagine how boring it must have been to spend three hours each morning learning to read when he already can?

The 1st grade math book was review for him. When we began homeschooling on January 26, 1999, we began on page 125. On February 12 he finished page 372. My son, in 15 minutes breezed through 16-17 pages of math a day with comments such as, “That was so easy. I already knew this.” The most challenging problems, at the end of the book, were 30+40 and 8+5+5. By April, Ted was doing three-digit addition and subtraction regrouping. It took getting to four digit regrouping and multiplication for him to start showing signs of being challenged. Can you imagine how bored he was in math class doing 5-0 and 4+4?

Finally, I address the question of whether Ted is “addicted to the computer.” As I said on Friday, NO he is not. In Ted’s 1st grade science class they learned, in his own frustrated words, “That the earth hasn’t always looked the way it does now.” Yes, Ted uses the computer a lot. He reads a lot too. He also plays a lot. It is because of this that he can tell you about the Big Bang Theory. He can tell you about the geological stages of the earth’s development and he can tell you how the Colorado River carved the Grand Canyon. My son loves knowledge, and I might add it is not “trivial knowledge” as it was referred to in Friday’s meeting.

He loves to learn and my son knows that it takes these supplemental avenues to provide the enrichment he craves. Good for him! Bravo! It is absolutely wonderful that a seven-year old can do that. It is wonderful a seven-year old WANTS to do that! We should celebrate his awesome mind and work like crazy to feed it rather than restrict it so he fits “better” into the confines of our school system. His intelligence and quest to learn are his ticket to success. He isn’t ever going to be a “social” person. He may one day discover the mystery of the universe or cure cancer, but he probably will never be student body president.

Again, can you imagine how bored he was in 1st grade science? And now I ask the fundamental education question. What does a child do in class when they are bored? And moreover with a teacher who does not like him? He acts out!

By writing this letter and taking the stand that there were external contributing factors to Ted’s deterioration this past year, I am not trying to excuse away his actions. My son has behavioral issues – I do NOT deny that. My goodness, I live with him 24 hours a day! We are trying to address these issues head on. We are trying to help him with his social skills that are naturally affected by Asperger’s. We are sending him to weekly hour-long counseling sessions to help him with his anger, aggression and intolerance, which I openly admit are very major issues in his life. My son is more in tune with himself than he may appear. On May 19, when discussing feelings with his counselor he told her he ALWAYS feels the following: bright, bored and mad. Wow! These are the ways he feels and we must all help him to address these issues in his life.

Ted is not old enough to attend his own IEP meetings. That is a decision that I made for him. But let’s all remember his feelings when we actually write his IEP. Out of respect to Ted, to his honesty, to his intelligence and to his behavioral needs, as the adults in his life, who he depends on for guidance and support, let’s put together a plan that will serve this unique child and provide him all the opportunities he so richly deserves and hasn’t received in a year.

Coming Up: A Bright, Bored and Mad Ted Goes to the Emotionally Conflicted Classroom.

Mamas Don’t Let Your Babies Go To An Emotionally Conflicted Classroom

 

EC – Emotionally Conflicted

Prior to EC, the classification had been…

ED – Emotionally Disturbed

An improvement, I guess.

I know this because some of the paperwork we signed still had the ED label on it.

Emotionally Conflicted. Emotionally Disturbed.

Those are hard words to overcome.

I almost didn’t.

Part of me wished I hadn’t overcome them. But then I know what came from the placement.

If we had not placed Teddy in the classroom would what I consider to be the positive results still have happened?

Were the results worth the cost?

Were there long-term repercussions for Teddy, that affect him even today, because of this placement?

How significant are the events of six months in your child’s life?

Maybe there are questions you don’t ever get to know the answer to.

*   *   *

If you are going through hell, keep going. Winston Churchill 

It was August 1999. Teddy was about to have his 8th birthday and we were faced with two schooling options.

  1. Continue homeschooling. For both Teddy and I this wasn’t really an option. I was a wreck and he had regressed. Big time for both, honestly.
  2. Return Teddy to a new school and place him in a self-contained EC classroom.

I don’t know of any decision I made prior to, or since, that was as gut-wrenching as this one.

Over the course of several months, leading up to this point, we’d had several IEP meetings. They were the worst meetings I had ever had with the schools.

Have you ever noticed when things get bad, they seem to get REALLY bad?

We were at REALLY bad.

Louisa, our psychologist who diagnosed Teddy in 1995, and reevaluated him in 1997, and again in 1999, made the five-hour drive to attend Teddy’s IEP. She said it was the most horrible IEP meeting she had EVER been to. The school system’s inability to grasp the challenges of Aspergers had taken on new heights, or is that, new lows.

But, we kept going.

After a few more meetings, and with the start of school just weeks away, Neal and I sat down with the IEP team and agreed to send Teddy to the EC Classroom.

I know what it feels like to have your heart break because I felt it break that day.

Emotionally Conflicted. Emotionally Disturbed.

The words grew and grew and grew in my head, and in my heart, until they physically hurt.

There was shame.

There was disappointment.

There was fear.

My baby.

MY. BABY.

Emotionally Disturbed.

I had not done enough to keep him from this moment.

I had failed.

How do you NOT feel that way the moment you have just signed the paperwork agreeing to such a placement?

I know what catatonic feels like because I went catatonic that day.

Shutting down was the only way to stop the hurt.

So why did I do this? Why did I agree to place my baby in this room?

Those are good questions. And believe me, I thought about them prior to, during, and for quite a while after the decision was made.

Optimism and promises are why.

They assured me that “within six weeks” they were going to start mainstreaming Ted into a regular education 3rd grade class.

Teddy skipped 2nd grade. One advantage of homeschooling was that from January 26 to mid May, working about three hours a day, Ted was able to complete the remainder of the first grade curriculum as well as the entire 2nd grade curriculum. The flexibility we had really was great.

I was also told that at the start of school there was only one other child IEPed into the class. So with a ratio of two kids to one, Teddy would receive extreme hands on instruction on techniques to help him deal better with the challenge of coping during a day of school.

That’s not so bad. Right?

I had to look past the words, the label, of my son’s class. I had to believe. I had to have faith that this was okay. I had to not discriminate.

I know what emotionally conflicted feels like because I became emotionally conflicted that day.

But, we kept going.

Next: Days in the life of a public school Emotionally Conflicted classroom.

Thanks for being here to listen. This is the really hard stuff.