Bonus post: It's Bennett's garden ... I just work here

It's April in Arizona and I've actually been paying attention to the garden this year! We've been excited to have the chance to enjoy the beauty that five years of work and planning has produced. Not that the work is done - I still have lots of ideas to add to its beauty (it's called shoving plants into the ground until there's no sign of soil left - ha!). My dad said yesterday that we "need to find 80 acres somewhere" so that I can fit in all the plants that I keep trying to fit into our yard. Until 80 acres is a possibility, we'll make the most of our tiny garden.

Bennett has labeled one large corner of that tiny garden "Bennett's Garden." He likes to pick out flowers for that area and has claimed it officially by putting a stick in the ground and resting an upside down watering can on top of the stick. I love that sense of pride and ownership. Sadly, "ownership" doesn't necessarily translate to "interest in doing the work" so that's where I take over. It's okay, though, since I'm really the one who started this whole thing.

Here are some pictures I took yesterday - click on any photo to see a larger version. Oh, and I had to sneak in my favorite new picture of our sweet Bella girl - make sure to look for her!

Autistic need support, not pity

I got this article from an AS mailing list that I'm on and I think it's wonderful. The author does a great job of expressing one point that I've always believed - a continued focus on a "cure" isn't as important as helping autistic kids and their families know how to navigate and thrive in a neurotypical world. Plus, she quotes T.S. Eliot, so she's got to be fabulous!

Anyway, it's so important to really listen to those who are actually living out autism everyday as adults. I'm all for autism acceptance! -Natalie


Autistic need support, not pity
By LIZZY MILLER
lizzy.miller@ centre.edu

T.S. Eliot was right: April is the cruelest month.

So maybe the lilacs haven't bloomed yet, and maybe any dead land in the area has turned into mud by now, but the principle is the same: April is one of the most unintentionally cruel months of the 12.

It's Autism Awareness Month.

I, for one, am acutely aware of autism, and I don't need a special month to think about it, because I am autistic.

I am one of the autistic adults that the president of Autism Speaks - an "organization" that despite its name doesn't employ autistic people or allow their input - swears up and down don't exist.

I am one of the autistic adults who spent much of her youth being bullied for her differences. I am fortunate that the only abuse I suffered was at the hands of my peers. Many autistic people today are still hospitalized against their will simply for being autistic. They often are forcibly restrained and suffer electric shocks in hopes of being "cured."

I am one of the autistic adults who is fortunate enough to have been born into a loving, supportive family that did everything in their power to teach me the coping skills I needed to function in a neurotypical world. Many parents of autistic children teach them that what they are is inherently bad early on. Some of them end up killing their own children and get applauded for their "acts of mercy." These
parents tend to face drastically lighter prison sentences than parents who harm their neurotypical children, if they're convicted at all.

I am one of the autistic adults who is proud to be fighting for the autism acceptance movement.

"Autism awareness" is not a laudable goal. Awareness is cheap. Anybody can put a puzzle piece magnet on his car and call himself "aware." Being aware and accepting of autistic people as people instead of puzzles takes more effort.

Many 'flavors' of autism

It's impossible for me to speak for all autistic people on most issues. Autism is a spectrum disorder, meaning there are as many flavors of autism as there are autistic people. There are, however, a few things that I feel safe to say on behalf of the one in 166 people who have been diagnosed with an autism spectrum disorder.

Do not pity us; it accomplishes nothing but harm. Help us by listening to us. Even those of us who don't or can't speak have plenty to say; we simply need to be given the opportunity. Don't pretend to know what's going on in our heads if you've never even bothered to ask.

We are not puzzles; we are people. We are not broken; don't fix us. There aren't neurotypical people trapped inside us, waiting to be unlocked. We're just like you already, except we experience the world differently.

Oh, and watching "The Rain Man" doesn't count as research.

That said, I fully support therapies that genuinely help autistic people function in our neurotypical society. It's just that attempts to "cure" us by making us just like everybody else are misguided at best. The only thing autism "cures" accomplish is teaching autistic people to act neurotypical while believing that they are broken.

As Eugene Marcus, an autistic writer, says, "the person who believes 'I will be real when I am normal' will always be almost a person, but will never make it all the way."

I am real, and I am normal. I'm just not neurotypical.

Now can we please move on to fighting real epidemics?

Lizzy Miller is a spring semester intern at The Advocate.
Copyright:The Advocate-Messenger 2008

The "talk"

I had the "talk" with Evan today. No, I didn't tell him about the birds and bees, although that conversation is coming soon, I'm sure. Matt's in charge of that one.

Today I told Evan that he has Asperger's Syndrome.

It's funny, because over the years its not one of those things Matt and I thought a lot about. We felt that the discussion shouldn't be forced and that we'd know when the time was right. In the meantime, time went by and all of a sudden he was 9 years old and we'd never told him.

Now mind you, Evan is completely aware of the fact that he is different. He knows that he has difficulties focusing on things other than super heroes and selected animals. He knows that he has trouble dealing with his anger and anxiety. He knows that schoolwork takes longer for him to complete than most of his classmates. Come on, he's the one living it.

He knows about the extra support at school, the medications, the fact that he goes to Dr. Kessler regularly and Bennett doesn't. All of those things together just never had one name ... one source. Until today.

The moment came spontaneously and I knew instantly that it was the right time. We were talking about something related to his anxieties and Evan was in a sweet, receptive mood. So I dove in. I talked with him about the ways he is different from other kids, both the blessings and the challenges. I told him that when he was born, his brain was made a little bit different than most people and that this wasn't necessarily a bad thing, just different. I explained that all of these things together are called Asperger's Syndrome.

At first he thought I was saying a bad word. Classic Evan. After that, he reacted exactly the way I expected that he would, which is "oh, okay." He wasn't surprised or sad about it, the name just provided a little more information and framework to what he already knew to be true about himself. Again, no judgements, just facts. I asked if he had any questions and he didn't, so I told him that Daddy would probably want to talk with him about it a little bit sometime and that I wanted all of us, including Bennett, to sit down and read a couple of books about Asperger's together later this week. Sounded great to him and off he went.

My favorite part was when Evan looked me right in the eye and said, "I like being different." Man, I am so in love with that kid. Thank you, God, for your perfect timing.

Boys rule

I am so glad that I have boys. Don't get me wrong, I know having a daughter is great, and I have my fleeting moments of sadness that I'll never get to shop regularly for hair bows and baby dolls and dresses with flowers. But given our circumstances - we only have two and they're nearly 5 years apart - I'm glad they're boys.

I think it's easier for boys to overcome that kind of age gap with similar interests. We've seen this coming on for a while, but Evan and Bennett have bloomed into full blown play buddies. They both love action figures of any kind, they both love animals, and right now, they're both REALLY into Star Wars. So, for example, after school today they spent an hour an a half doing a "Star Wars battle" together until the need to leave for Bennett's karate class broke things up. I didn't interfere, I didn't have to break up any fights. It was all quite peaceful considering that a desperate battle for the galaxy was going on.

Bennett does have to deal with the challenge of an aspie big brother who largely wants to do the exact same battles over and over again (complete with dialogue, etc) and wants to control nearly every aspect of playing together (who gets to be which character, how long it lasts, where everyone is positioned). Very typical of a kid with AS. Not easy to deal with every day when you're a goofball, creative kid who just wants to have fun.

But I'm really proud of both of them. Bennett has learned to challenge and negotiate with Evan and stands up for himself pretty well. Evan is learning that doing things in a different way and letting Bennett make some decisions in the story is actually kind of fun. It's a great social learning experience that I hope both of them can take into their experiences in the world at large.

I've gotten myself shunned from these Star Wars battles - due largely to my constant efforts to have the characters avoid war through rational discussion or kissing - so if a grown up gets roped into their play it's almost always Matt. Then I go up to my calm bedroom, close the door and read until the violence is over. Yep, boys rule.

Bonus post: On the nightstand

I realized that I haven't blogged about what's on my nightstand lately and I know you've been clamoring loudly for that information. Cricket ... cricket. Well, regardless, here's what I've currently got goin' on:

A Walk with Jane Austen: A Journey into Adventure, Love & Faith by Lori Smith: Started reading this one yesterday and I already love it. Are you shocked? She's managed to jam four of my favorite things in the title alone! Austen. Adventure. Love. Faith. I could devour this one in a matter of hours, but I'm trying to read it thoroughly this first time and savor the experience. Essentially, it's a memoir about the author's experience visiting significant locations in Austen's life and works during a time of change and difficulty in her life. Sidenote: I was reading this book earlier today. Bennett took one look at it and asked me, "Mom, is that one of those Pride and Prejudice books?" Two things: he's incredibly perceptive and I am truly sick.

Conversations: The Message with its Translator by Eugene Peterson and GOD: Now let me show you how really spiritual I am - haha. Actually, I'm completely Christian-geeking out on this bible right now. It's the complete text of The Message translation with commentary and insight from Peterson included right in the narrative. So his comments aren't footnotes at the bottom of the page, but paragraph chunks related to what you're reading included as you read. I really like this format - it doesn't force you to go back and forth between text and provides for a much smoother reading experience. Plus, I love Peterson's take on scripture and his voice as a writer - see A Long Obedience in the Same Direction: Discipleship in an Instant Society and Leap Over a Wall: Earthy Spirituality for Everyday Christians for other examples.

P.S. I Love You by Cecelia Ahern: I'm not sure about this one. I've been working on it for months after randomly picking it up at an airport and just haven't been able to get into it. The concept is interesting and I'm no classic literature purist, but I just haven't connected with the emotion in this book. And I'm not sure yet that it's even well-written. But it took me a while to really get hooked on Les Mis and Crime and Punishment, too, so what do I know? Anyway, I've convinced myself to carry on and at least finish the freakin' thing.

Looking below the surface

Sorry we've been absent, I spent my birthday weekend sick (boo!) and I'm just starting to feel better. Just a bad cold (cross my fingers) that I'm hoping will go away eventually.

Anyway ... life goes on even when we are sick, doesn't it? Last evening was a rough one for Evan. I should have immediately figured out that his anger was attributable to something below the emotional surface as it so often is with an AS kid, but I wasn't feeling well and didn't connect it on my own.

After an hour or two of angry and just plain rude behavior, Evan ended up coming to me and crying, saying he was sorry, and telling me that his class had a hard day at school. Not him specifically, just the whole class. And that he feels "dumb" because he hasn't passed his "9s" test in multiplication. And that (here's where the real issue surfaces) he's sad because it's almost summer break - and he realized yesterday that it starts in May and it's almost May.

I'd like to point out the great irony in this admission. Here's a kid who we often have to focus 30 to 60 minutes on in the morning just to get him to go to school. And he's bawling his eyes out, nearly inconsolable, because he's going to miss his teacher and his class so much over the summer. *Sigh*

It's always emotional when your child cries like that, but I know he'll be okay. We've done this school thing enough years that we know the transition from year to year is always emotional and challenging, but that it will eventually pass and he'll have another teacher to visit and say hi to in the hallway.

In the meantime, it was a good lesson (again!) in the need to dig below the surface to what's really going on and not just take Evan's negative behavior at face value.

1 NT + 1 Aspie = 5

I'm finding it hard to write about Asperger's every day and find an appropriate balance of tone. I want to be real about the added stresses and emotional/physical fatigue that comes with parenting an "aspie" kid. I don't want to be melodramatic and make out like every moment in our home is tortuous.

It's kind of like this - one day I described my relatively normal, happy childhood in a household of five children to my therapist. Her response was that a big family was nice to be part of. I agreed. She asked me why we'd chosen to have only two kids, then. I told her that it feels like I already have five kids and I know that I couldn't handle more.

Anyway, life with an aspie kid is just like life with a "neurotypical" kid, just different. Having both an aspie and an NT kid, I see the differences and the similarities. The hardest part for me is not having a good view into the way Evan's mind works. I truly believe that he views the world very differently than I do and I'd give almost everything to understand that. My hope is that as he gets older, he'll be able to explain it to me so that I can help and encourage him more effectively.

Another example. There's an older kid at school that somehow Evan has come to see as a bully. Here's the interchange that we had today after school:

Evan: A few days ago that bully kid told me to stop staring at him.
Me: Do you stare at him?
Evan (always honest): Yes.
Me: Do you stare at him a lot?
Evan (again, always honest): Yes.
Me: Why?
Evan: I just do.
Me: Would you like it if someone was always staring at you?
Evan: No.
Me: Maybe you should stop staring at that kid.
Evan: Yes, okay.

My point in this is that I'm not sure exactly how to handle this, because I can't truly see where Evan is coming from and he can't accurately describe it to me. Is the kid really a bully or is he just creeped out because Evan keeps staring at him? Or is he mean and Evan just stares at him out of fear or anger? I can't get a clear answer.

The good thing is that I know somewhere in his heart, Evan knows what's right. But his mind doesn't always connect with his heart when he's locked into something ... like the fact that he's decided that kid is a bully.

Sigh. Okay, I'm done rambling for now. Happy Friday!!

Mainstreaming autistic kids at school

This is actually a fairly accurate story on some of the challenges, options, questions and issues surrounding raising an autistic kid.

MSNBC: Mainstreaming Kids With Autism

Guilt

Did I handle his emotional outburst about the AIMS test before school correctly?

Should I work harder to force him to eat vegetables?

Have I allowed him to watch "Return of the Jedi" too many times?

Should I have pushed to keep an aide in his class at the IEP?

Have I done something to cause his lack of self-confidence with schoolwork?

Did I tell him I loved him before he went in to the school?

Should I have encouraged Bennett to play Iron Man with Evan yesterday instead of letting him make the choice, knowing that Evan would get angry if he said no?

Is it right to have a 9-year old on daily medications even though they seem to help?

Why do I feel so tired - that's not how I want my kids to remember me, is it?

How can I get him to eat something new in his lunchbox instead of throwing it away every time I try?

Is bribery the wrong way to motivate him when I'm at my wits end?

How can I encourage him to grow closer to Jesus and find comfort there?

Will Evan be able to have a wife and family of his own?

Did I spend enough focused time on both boys today?

Am I encouraging his positive friendships enough?

Should we have him in clinical Occupational Therapy?

How do I help him to develop a sense of gratitude?

Will guitar lessons help his confidence or just frustrate him?

Am I making sure that Bennett always feels safe and protected?

Is it wrong that sometimes I want to run away from all of it?

Etc, etc, etc...

Another year, another IEP

It seems kind of like kismet that our IEP fell within National Autism Month. The beloved, the necessary, the dreaded IEP. For those of you who don't have special needs children or are not special educators, IEP stands for Individual Education Plan, a federally mandated process and document for all special ed kids. Don't fall asleep yet!

The IEP is a wonderful thing, yet it is surrounded by controversy, tension, stress, debate, sometimes legal action. Even with Evan at a wonderful school, I always have a bit of a stomach ache before and during the annual IEP meeting. Sometimes afterwards, too.

Essentially, the IEP is intended to ensure that each child in the public school system with autism (for example) gets an "appropriate" education. What this comes down to is debate and discussion on what accomodations are necessary to help the child succeed in (or out) of the classroom. Should the autistic child be in a "self-contained" classroom with other special ed students or should he be "mainstreamed" into a typical classroom setting with accomodations like an aide ("paraprofessional"), pull-out Speech Therapy and Occupational Therapy services, special circumstances surrounding testing (especially standardized tests), etc.

Needless to say, parents, teachers and administrators do not always see eye-to-eye on what's best for the student - and there are other factors involved, like the fact that having an aide in the class costs the school extra money. Ah-hah!

Happily, Evan is an IEP success story, although it's not a story without heartache and drama along the way. Evan started out in a self-contained classroom during his first run at kindergarten. After a rough start, he had a good year and then transferred back to our neighborhood school for another round of kindergarten in a "mainstreamed" situation. Overall, it went well. However, the transition to all-day first grade was a nightmare up until about February. I will always adore his teacher Ms. Raven for loving him through it all and telling us that she had "learned so much as a person from Evan." Each year has had its different challenges based on where Evan has been emotionally and maturity-wise at that time.

Today's meeting was fairly smooth and I'm just so proud of the progress Evan has made. We've all agreed that he no longer requires an aide in the class, doesn't need OT services (at least in a school setting), but will continue with Speech Therapy and a Social Skills group with the Special Ed teacher. We are working toward figuring out ways to reduce his test anxiety and to increase his self-confidence with schoolwork that he's capable of doing, but says is "too hard."

Every significant change in the plan has to be documented, so sometimes these meeting happen several times each year. I am familiar with many families who have been so unhappy with their school's plan and performance that they have hired attorneys or IEP specialists to accompany them to the meeting - or have sued the school to get what they think is necessary.

All I can say is that God has been good to us in this area. We have a school that has been flexible with all of us and wonderful to Evan - plus, they really and truly care about his success personally and academically. What more could you ask for any child? The best thing in the world is to hear how much Evan is cherished at the school, that most of the staff in this school of 1,000+ kids know who he is, and that they think he's a sweet, polite kid. It doesn't get much better than that. I guess my stomach ache can ease up a bit for now. :-)

Natalie

Post-Sunday blog: The perfect autism quote

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away.

- Henry David Thoreau

Saturday's pre-blog: Escape from autism

We will be unable to get to a computer tomorrow, so here's our Saturday post - a day early.

Matt and I are currently in California - headed for the Northern California beach town of Half Moon Bay with our great friends Kevin and Amy. All of this is to celebrate Matt's 40th (coming in a month!) and have the opportunity to escape.

All parents have a need to escape from the kids every once in a while to refresh, reprioritize and just have some time to think. :-) But I think it's especially true for those parents of kids with special needs. It's so easy to get caught up in the day-to-day, the stresses, the frustrating tantrums about whatever is keeping Evan from doing what he wants to be doing. We work really hard to make sure that Evan's emotional and social issues don't completely overwhelm our family - that our family isn't all about Evan, but is balanced and everyone's needs are being met, especially Bennett's.

So it feels good to be a little bit selfish, knowing that the boys are well taken care of by Papa and Grandma Rust (thank you, thank you, thank you). Here's to time by the sea, a romantic inn, special friends, good wine, and time to be quiet.

Love,
Natalie

What Evan has that many autistic kids don't

There is probably nothing more important to a family facing life with an autistic child than a supportive extended family. When grandparents, especially, try to pretend that nothing's wrong, or blame your lack of parenting skills, or try to tell you exactly what to do ... well, let's just say it's not helpful.

We have been blessed with incredibly supportive families on both the Morris and Rust sides. People who love Evan unconditionally, forgive his rudeness, melt at his sincere apologies, listen to detailed descriptions of Spider-man battles (or nicely excuse themselves), have already forgotten that we left most holiday events for years because of Evan's angry and overstimulated rages, and celebrate every achievement and step forward.

These are aunts, uncles, cousins and grandparents who have spent hours and days with our family and have had a glimpse of how unpredictable and emotional our beloved son can be. They've seen us stress out, handle situations with compassion, break down in tears, freak out. They've taught the cousins to be kind and gracious and flexible with Evan even when that is not easy. They've kept their mouths shut when they would have handled things differently and they've offered words of loving encouragement when they knew we needed it.

Thank you to each and every one of you. You have carried us through these last five years ... and more importantly you are helping to create a smart little boy who knows he's loved, understands why silliness is essential to life, and just happens to have Asperger's Syndrome.

Cows 'R' Us

Evan loves cows. I can't explain it. It started before he turned two - possibly inspired by "Old MacDonald" - a song which I thought at one point would drive me mad if I heard or sang it one more time.

Cows have survived other revolving obsessions like the Backstreet Boys, the Bruce Sprinsteen Live DVD, Power Rangers SPD, Spider-man, Leopards, Star Wars. They are "special interest" numero uno - and Evan still claims that he wants to be a farmer when he grows up.

Our area of South Chandler rests on the edge of suburban and rural. We still have horses and sheep and cows on various acreages near our house. In fact, there's a dairy farm directly on our way to the freeway.

It never fails that my 9 year old son has to point out each and every cow that he sees - and then he'll throw in the horses for good measure.

"Mom, did you see that cow?"

Yes, I did. And I saw it this morning when we drove past it, and yesterday on the way to the mall, and last week on the way to your guitar lesson, and I'm sure it will be there tomorrow. Just like Evan's love of cows.

The "spectrum" of autism

One of the things that is most confusing to the general public and most frustrating to me about autism is that it's a "spectrum disorder." So on one end of the spectrum you have those individuals who cannot speak or communicate, have low IQs, and rock or otherwise "stim" incessently. These are kids that you could most likely pick out of a crowd as not "normal." On the other end you have those like Evan who look like every other kid (well, even more dashingly handsome in his case!), speak very well - often with a large vocabulary, and have normal to high intelligence. Then you have every combination inbetween.

There is no "typical" autistic person. There is no "typical" experience of parenting a child with an ASD. There is no "typical" course for how to best help your autistic child or grandchild or nephew or friend navigate the world. Obviously there are similar issues, but all to varying degrees. Most people have no idea what autism really is, particularly not Asperger's Syndrome, and if they do, they're basing it on something they heard about a friend's colleague's son one time. Or maybe they saw celebrities discussing it on Larry King last year or read an article in a magazine.

This lack of understanding isn't really anyone's fault - it's simply the reality of a complicated disorder that defies any effort to put it in a box.

Here's a little piece of life with Asperger's. Yesterday, as you know, was April Fool's Day. After Evan left for school Bennett and I discussed the idea for a couple of minutes and I immediately saw a new twinkle in his eye. And so, for the rest of the day, Bennett played April Fool's tricks on me constantly, tried a few with Matt and Evan, and even pulled one over on my dad.

After dinner, the four of us were talking about April Fool's Day and Evan said that kids kept doing tricks to him all day and eventually he got tired of it. Matt asked him ... "Well, did you keep falling for the tricks?" and he said yes. Obviously this wasn't a big deal, but it reminded us that although Evan is very smart, he can be incredibly naive and has trouble seeing into the intentions of others, even when something keeps happening over and over.

More later...

"Happy" National Autism Awareness Month?

Yes, April is National Autism Awareness Month. Ensuring that folks across the country are educated about autism spectrum disorders (ASD) is a great thing. Of course in our family, autism awareness happens every month ... every day ... almost every hour.

Evan having Asperger's Syndrome (AS) is a bittersweet part of our family life. Parenting a child with AS or any ASD is hard work, to put it mildly. But if Evan didn't have Asperger's he wouldn't really be our Evan, would he?

In honor of this special month, we're planning to blog on the subject of autism every day. Thank you for indulging us. In return, we hope to give you a closer view into Evan's world and what it's like to live in the world of autism and Asperger's Syndrome.

Here are a couple of links to get you started:
- From CNN - Asperger's: My life as an earthbound alien
- Asperger's Syndrom OASIS