Autism and Expectations

My son is autistic.  He also has a receptive and expressive speech disorder and sensory processing disorder.  This means he has some challenges with social situations, motor development, coordination, communication, understanding, and certain environments (depending on lighting, weather, noise, movement, etc.).  While this sounds like a lot to deal with, and it is for him, it's our normal.  I forget; I don't view him through the lens of any diagnosis unless something requires me to, because it's just not on my radar.  He's just Little G, blue-haired superhero, cat lover, math whiz.  But sometimes, I am reminded.

Reezle, who also has a diagnosis on the autism spectrum, struggled a lot with learning how to pedal a bicycle.  She outgrew her tricycle before ever learning how to pedal it, and we finally bought her a scooter so she could enjoy a ride-on toy until she mastered the art of pedaling.  Though they are two years apart in age, Little G was pedaling like a pro before his sister really got it.  I assumed that riding a bike would always come fairly easy to him.  A big mistake when you're parenting an autistic child is to make assumptions about anything.

By age 7, I was riding a bike with tons of confidence.  This year, I decided, my son was going to learn to ride without training wheels.  I wanted him to have that same confidence, the fun of bike riding that only two wheels can provide.  We could ride on trails, then, I told him.  He liked that idea.  When he got his new green bike, because he finally, just barely outgrew his toddler-size one recently, I told him that I would teach him to ride it without training wheels.  He was stoked.  He was ready.  He was going to do this!

Little G on his new big boy bike

Or, you know, not so much.  I held the back of the bike as we rode around the driveway, becoming quickly aware of the fact that he had absolutely no ability to balance without my assistance.  He's tiny, but that little bike is quite heavy, and it became impossible for me to keep holding him up.  So, on the training wheels went, and we removed the pedals from the previous bike so he can learn to balance.  Little G has decided that he doesn't want to try riding without training wheels until next year.  Fair enough, this is his journey.

I had high expectations because of my own age when I learned to ride a bike without training wheels (I was 6).  Additionally, I recently watched a video of a friend's son, who is days older than Little G, riding like a pro around a bike track without any training wheels.  I immediately thought, hey, this is definitely something 7 year-olds can do, so maybe I'm slacking on the teaching or encouragement here.  But then I remind myself that Little G is not a typical 7 year-old, and it's not a fair comparison.

Little G has his strengths.  He is exceptionally bright, and a very fast, strong runner.  Socially and emotionally he is very young.  That is a point for me to remember as well; he is not the size of a child his age, nor is he socially like children his age.  It's just hard to remember, when I have a 7 year-old doing 4th grade workbooks and speaking with an impressive vocabulary, that he has any limitations.

My outdoor artist

I will keep encouraging him to pursue his talents, and to practice patience where he struggles.  Whether he rides his bike without training wheels doesn't seem to matter much to him, so I need to manage my own expectations.  I never want to underestimate him, but I also don't want to put unreasonable expectations upon him.  But speaking of expectations...

Harvesting some zucchini and tomatoes

Little G has been picking and eating vegetables that he planted in the spring.  "They really grew into food!" he says, every time we go out there.  He says he will be planting even more next year.  He is definitely great at gardening, so I will make sure he has all the room he wants and needs to garden to his heart's content.

State Testing: An Education Super Fail

It's 4:16 AM.  Instead of sleeping, I'm here drinking coffee and blogging.  Why?  Because today was absolute utter hell in my home, and my daughter just got to sleep about two hours ago.  I'm still running on pure adrenaline and righteous anger.

Let me back up a bit.

Last year, I began homeschooling my children.  The reasons are many, but it mostly comes down to my belief that education is not one size fits all.  My children are both diagnosed with autism spectrum disorders, and my son additionally has a diagnosis of expressive/receptive speech disorder.  Both of them also have sensory processing disorder.  Mostly, in everyday life, this means little.  They have coping skills, they are really great kids, and they deal with the things that pose challenges like a couple of champs.  We realize, though, that it is having the freedom to be who they are in a supportive and loving environment which allows them to really shine like they do.  A public bricks and mortar school was not that environment.

K12 seemed to be a perfect fit for us.  I loved the curriculum.  Yes, I am using past tense words here, because I am beginning to realize that K12 is susceptible to the very same pitfalls, in terms of actual education, that any other public school suffers.  Perhaps it hit me extra hard this year because the language arts curriculum reading materials were severely slashed in terms of quantity, while at the same time we received a pile of test preparation materials which seemed more than a bit over the top.  The only reason I can think of to remove so much of the reading materials is that kids struggled with the amount of it, and spending additional time working through it would mean less time spent on test preparedness.  It also affects the kids' grades, and thus the school's reputation.  Now, I'm not blaming K12 for this at all; the state regulates their schools just like any other public school.  If anything, I think K12 is fucntioning exceptionally well given the circumstances and all of the red tape.

I wondered to myself, what would a curriculum look like if the schools were not being judged and the children were not being dragged through this nightmare known as state testing?

Today, I sat beside my daughter as she worked through a math Scantron assessment, her eyes welling up with tears, shaking with frustration, rocking back and forth.  She is good at math, but she hates it.  Her mind is definitely geared more toward right-brain activities than the logic-based, left-brain activities involved in math.  She hates math that is typical for her grade level, but this is the type of problem she had to work on:

Forgive me, since it's been quite some time since this was first introduced to me, but isn't this something you'd expect 7th-9th grade students to be working on?  I know a lot of adults who would struggle with this.  I almost wonder if they gave her the wrong assessment or something, because the problems were almost all at this level of difficulty and this was complete and utter torture for a 3rd grade child who detests math to begin with.

I have no idea what is in store on the actual state testing, but if it's anything like this, I have no idea at all what the goal is.  This is ridiculous.

I hope I feel better about things at some point, but right now I've had a rough day and I'm not feeling very warm or fuzzy about any of this.  Kids should not have to go through what my daughter went through today.  And you know, I'm quite sure that these state tests and district scores won't mean a damn thing in 100 years, but the contributions these children make to the world because of actual knowledge and experiential learning (read: not from tests for pretests for pretests to prepare for the pretest for the actual test) will.  Einstein, Tesla, George Washington, Hippocrates, and Galileo did just fine without all of this state testing crap.

Alrighty, then.

Special Needs Kids

From a blog called Bringing The Sunshine, I felt compelled to share the following quote:

"When you’re a mom of a kid with special needs, people tend to put you on a pedestal. They admire you from afar and say things like, “God only gives special children to special people,” while simultaneously thanking their lucky stars that they aren’t you, because they “couldn’t handle it.” We aren’t worthy of the pedestal, and we handle it not because we’re strong, but because it’s the hand we’ve been dealt."

I had an almost identical conversation with my grandmother last week, and several times previous since deciding to homeschool my children.  Others have said similar things to me about how "amazing" it is that I "am able" to handle raising, let alone teaching, a child with autism and a speech disorder.  The universe must have chosen me for this, because surely there was no other parent that could handle this exact child.

I don't believe any of that.  We rise to the occasion as parents.  There are a lot of families out there raising children with various special needs, from autism to down syndrome, premature birth to traumatic brain injuries, and even gifted children who present their own surprising challenges.  We don't belong on pedestals, and we don't want to be on them.  We're not any different from you, we just do things based on the unique needs of our unique families, which is really no different than what anyone else does.  We don't need to be told how difficult our lives are, because most of us believe that the rewards are equal to the extra effort; and while understanding is the message most people intend to convey, it often comes across as pity.  With the exception of a rough day here or there, we don't feel sorry for ourselves.  Now, I realize there are exceptions to this rule, but the majority of special needs parents I've spoken to share similar viewpoints on this.

Sure, raising a child with special needs can be challenging, but raising any child is challenging at times!

Aimsweb and A Boy With Speech Disorders

At the beginning of the year, my children both participated in an Aimsweb assessment. At the time, I felt it was accurate; it assessed them both as "Well Above Average". They are. No problem.

I'm not one of those parents who demands that my children attain some specific standard, or who believes my children are somehow exceptionally gifted just because they're mine. However, they are academically advanced beyond grade level, and would like for testing to reflect that.

Mid-year, Little G's scores dipped somewhat. He was annoyed with the testing; he remembered he had been assessed using these same measures in the past and he is not one who likes to repeat. Getting him to cooperate was a feat of monumental proportions. So when he had to do it for a third time this spring, he just wasn't having it. Typically, before we sit down for our assessments, I have some time to briefly discuss what we will be doing and why. This time, I was experiencing technical issues with my computer (a Dell N5110, another topic; don't buy a Dell), and I didn't have the time to talk with Little G because I was busy trying to evoke some signs of life from my computer. The test is timed, and he spent the majority of that time shooting me dirty, disgruntled looks and throwing his head back to stare at the ceiling in silent protest. His autism and his enormous ego are sometimes a bit of a challenge.

At the conclusion of the testing, Little G scored Below Average. I was extremely annoyed, and having difficulty pretending I wasn't. I told the teacher assessing him as much, and said I should probably discuss the results at another time. She was extremely understanding and offered me some phone numbers of some people I could contact regarding my feelings on the matter and what I felt ought to be done differently. After all, I said in protest, they were assessing a child taking 1st grade curriculum as a Kindergartner. He certainly would have been less frustrated and the picture would have been more accurate had they assessed him based on where he was actually working. I realized I was launching into an epic rant once again, which I was trying to avoid since the issues I was facing were not the teacher's fault and she didn't deserve to be on the receiving end of my dissatisfaction. I accepted her offer of the contact info, and I decided to focus on anything other than Aimsweb.

But I couldn't. A few days passed. The teacher (she's awesome, I'm pretty sure I have mentioned this) agreed to allow Little G to take the assessment again on a day when we were not experiencing massive technical issues and he could truly focus. As it turned out, we still had some technical issues (did I mention Dell sucks?) but she came up with ways to work around it. And when all was said and done, Little G scored in the Average to Above Average categories across the board. I felt better. Little G felt better.



But during the testing, something occurred to me. My son is not typical. My son is autistic and has a speech disorder which affects his expressive and receptive communication. Even if he had truly scored in the below average range for letter sounds, would it have been because of a lack of understanding or learning? No! His speech disorder complicates matters extensively, and the fact that he is able to compensate as well as he does is highly impressive. Here I was spending all of my time focused on the fact that this standardized test failed in an epic way at assessing my son's actual abilities and progress, to the point that I forgot an extremely important variable: my son's language disability.

Little G knew his alphabet and numbers 1-10 by his second birthday, despite his inability to speak (ah, the wonders of computers). He is anything but below average. I bristled at the scores on the latest assessment, an assessment of the boy who has been tutoring his similarly gifted sister since he was just a preschooler. How could he be able to correct Reezle's spelling and grammar errors and he is scoring Below Average on Aimsweb!? Actually, for nonsense word reading, he scored Well Above Average; it was only the things directly related to how he processes speech sounds which became an issue. Duh. Sometimes I fail to think. And yet, standard tests fail to really assess his knowledge and ability because they do not take his disability into account.

Standardized tests are just a part of the story.

Review: Different Like Me, My Book of Autism Heroes

The other night, just before bed, my 6 year-old son proudly proclaimed, "I'm HAPPY I have autism!" He went on to tell me it's because his brain is "interesting and smart". I can't argue with him there.

We had just read some of the book Different Like Me, and he found Nikola Tesla and Temple Grandin most interesting. My daughter liked Einstein and Tesla best.

I love that there is a book like this, which celebrates the positives of being on the spectrum. I firmly believe there are gifts in every challenge, and autism is absolutely one of the most profound examples of that. Though it is not possible to say with certainty whether all of the individuals in this book would have received a diagnosis on the autism spectrum, they do at least share many familiar traits. In a society that seems all too eager to point out what cannot be accomplished because of autism, this book is about possibilities and potentials, about focusing on strengths and developing one's gifts, and about how much one person can contribute to the world in spite of challenges and differences.

The book might be a bit dry for younger children, but probably great for the 8 and up group who are beginning to understand what their diagnosis is and what it means. I love positive and empowering children's books, and this is definitely among them. Rather than the redundant, patronizing attempts at "acceptance" that too many other books throw out at us, this book focuses more on the individual and their accomplishments and contributions to the world - without the seemingly obligatory "even though they had autism" qualifier.

Autism

I'd like to tell you that autism is all about gifts and abilities and geniuses people like Einstein and Nicola Tesla and Temple Grandin. I'd like to say that I've never felt like a bad mom because of autism's challenges and the epic patience it sometimes calls for, and that every day is just as simple for us as it is for any family.



But I can't tell you that.

Every day, there is more confirmation for me that I made the right choice for my son with regard to homeschooling. Intellectually, he's ahead of his sister and often helps her study her spelling words or understand a math problem. Emotionally, he's very, very young.

Knee-jerk reactions have to be avoided when you have an autistic child. It's easy to look at a kid who is beating the living hell out of a stuffed toy, growling hateful words about himself because he didn't meet his own perfectionistic criteria or because he heard the words "no" or "wait", and think to yourself, little dude needs a time-out. It's much more difficult to consider what he's actually feeling.

To most people, it looks like he just threw a screaming fit because I put his ketchup too close to his green beans. But Little G feels everything so deeply, every emotion and sensation in his sensory world. At all times, he's making a very effortful and conscious attempt to filter the sensory stimuli most of us don't even notice; our brains have excellent gatekeepers that tell us which sensory input is important and which is not. G does not have this feature, so his world is BRIGHT, LOUD, CLOSE, AND IN CONSTANT MOTION. It's like living life with the volume on everything turned up just to the point where it's really annoying and you can barely function unless it gets turned down. Only, he can't turn it down.

And not only is he dealing with the sensory overload aspect, but also the fact that he feels very deeply, very intensely, every emotion that he experiences. He feels emotion to the point of excess, basically, and it is overwhelming - especially when the emotion is anger or based on some injustice, either perceived or actual.

I get all of this, I do. But I also walk on eggshells somewhat. I love the moments where is personality shines through all the junk he has to cope with daily. Even though it looks like he has no patience, I will argue that he has more than most adults need to cope with daily life. But I find myself frustrated sometimes, and today was one of those days.

There are many books on autism, anger, autism and anger, and so forth. And I think I've read a library's worth of them. I've bought just about every children's book on the topic I could find. The results of trying to deal with this from an anger standpoint have basically yielded no results. Conceptually, he gets it; he just can't seem to implement it. So I'm trying a new approach now. I'm going to introduce my son to mindfulness and meditation. He can't change his feelings, but he can change how he responds. Acceptance, like riding the wave to shore instead of trying to fight through it to the other side, may be the path he needs to try now.

I know he struggles. He's my baby, and knowing how miserable he is so much of the time makes me hurt. I want to fix it. The right tools are out there, to empower him. I just need to find what works.

My Brother Charlie Book Review

I recently picked up a copy of My Brother Charlie for my kids after seeing some rave reviews of it online. Because it was so highly-rated, I didn't even flip through it until I had it home. Mistake.

The very first things that made me say, uh oh, this might not be what I was looking for... were the puzzle pieces scattered on the inside of the book jacket. I know some people like to say that autistic children are little puzzles, but I absolutely detest that metaphor. My child isn't a puzzle, he's a person. Just because he thinks differently and sometimes acts differently than children his age doesn't mean he's a puzzle that needs to be solved. But I wasn't going to let the artwork make my decision on the book. And, as it turns out, it didn't have to.

The general feel of the supposed "acceptance" message in this book felt condescending, like "Yeah, Charlie is broken, but we love him anyway," rather than true acceptance. Granted, the boy in the story was non-verbal, but even that aspect could have had a more positive spin than talking about how Mommy cried because the doctors told her Charlie would never say 'I Love You'. Yes, poor Mommy, because her son isn't going to express love the way she wants him to, to make her feel good. My son didn't need words to express love. I'm fairy certain no one does. I absolutely loathe how the world has such a narrow view of what people should be and how they should act.

In another part of the story, Charlie's sister discusses how he sometimes "ruins" playdates by, well, being himself. Apparently, in his family, needing to be alone and away from people is unacceptable and highly annoying.

Another thing I found abrasive was the statement, "Charlie has autism. But autism doesn't have Charlie." I would expect someone to say this about a disease, like diabetes or cancer. Autism is a neurological difference. Of course it doesn't "have" anyone. That bit reminded me of the horrific I Am Autism video that the deplorable organization Autism Speaks put out not long ago as part of their fear propaganda. It made my skin crawl.

I mean, I don't know. Children are naturally a bit selfish, and maybe that's why the book has those undertones to it. For the purpose of relating. But I thought it was so bad that I didn't even give it to my kids to read, I just took it back.

My position on autism may be different from that of others. For me, my hopes are that my son lives a happy, fulfilling, meaningful, rich life, whatever that means for him. I really don't care about anything else, or anyone else's opinions. I wouldn't change him for anything, because everyone has challenges and this just happens to be the one we deal with.

He Wins

I've been debating what to do about Little G and his obsession with math. Right now, he is a Kindergarten student, technically, but he is taking 1st grade math and language arts. He was taking 1st grade phonics as well, but he completed it. If I let him work at his own pace, he would have finished 1st grade math as well. Part of me thinks just letting him finish and move up to the next grade level in math would be better for him. Originally, I felt this would place undue burden on him and stress him out. But, as it turns out, he's a lot like his mama - if his mind doesn't have something to work on all the time, he gets moody and his mind finds things to work on.

The little dude has always loved numbers and math. He could add and subtract by preschool, and by the start of Kindergarten he was begging to do multiplication flashcards all the time. He loves chess and card games, can kick my butt at Sudoku, and is at his happiest when he is challenged. (But he hates to lose and has no tolerance for anything less than perfection from himself, which means meltdowns and tantrums...)

I'm at a point with him where I feel like pacing him with the rest of the 1st grade students in math is unfair to him. During math lessons, G is typically lying on the floor, answering questions I ask aloud, rolling his eyes and saying, "I know this already, mom. It's like preschool baby stuff." And I tell him, "Yes, G, but you have to demonstrate that you know this, so we have to at least do the assessments." His reward for getting through it is always something he enjoys that is also math-related (Sudoku puzzles, a website that has flashcard games, or workbooks, usually). I keep some grades 2 and 3 math workbooks on hand, hidden as a special treat; but he found and finished the remaining half of a 250-pager the other day when I thought he was coloring. It took him an hour. So, I think we'll start letting him do as much as he wants, and see where this leads.

In other G-related news, my little boy is growing up and developing a mind (and attitude!) of his own. I'm sad, nostalgic, and somewhat uncomfortable with his growing independence, and yet I am also proud of his developments. The fact that he has been so dependent on me for so long makes the transition difficult for me, I'll be honest. Heh, I know, I know, that's the selfish, but-he's-my-baby! part of me talking. He still has many needs (basics, like dressing, brushing his teeth, washing his hands) where he needs much more assistance than his age-matched peers, but intellectually he is light years ahead of the game. He gets so frustrated, knowing what he wants or needs to do, and having the hypotonia and motor issues that make his body a bit slow to catch up. We're doing a lot of sensory diet and OT activities, which change frequently to meet his ever-changing needs, and the results are coming quicker these days.

People always say that kids grow up so fast. It's amazing, though, as a parent. It all seems to happen in fast-forward, and I've come to a point where I try to savor the little moments because I know, before I know it, I will be thinking about how ages 8 and 6 were really so little.

Potentials

My son taught me how to quickly calculate larger numbers in my head.

He was 5 when he taught me this trick.

It was 38 + 42 that brought us to this epiphany. He spat the answer out in seconds. I asked, G, how did you do that so fast? The answer was 80. He said, "Moooom, it's easy. You break apart the numbers. Give the 2 to the 38 and make it 40, so then it's just 40 + 40, and that is super easy...80!."

Uh, woah.

And he was right. When he put it in those terms, it was super easy. That's now his mind works naturally. He's a problem solver by nature. I'm not built that way. I can learn, but it isn't built into my make-up like it is for Little G.

When Little G was just 23 months old, we learned that he is autistic. Just a short time later, we were told that he has hypotonia (low muscle tone) and a speech disorder (not just delay). And at the same time, we were also told that he might have a genetic condition (Beckwith-Wiedemann) that sometimes causes childhood cancer. Yes, I kinda freaked out. After leaving the geneticist's office that day, I smiled at my baby son, walked him in his stroller over to the gift shop where they had toy kitties (his fave), and hugged him to me as I choked back tears that I believe to this day could have flooded the building. But I never let on.

There was no speech therapist available through Early Intervention, so I just learned ASL (American Sign Language) and taught it to the kids and my husband. Because that's what had to be done. He started to communicate. I had great hopes for him, and yet, he still managed to surpass my wildest expectations.

I didn't expect my son to be skipping grade levels in school. I didn't expect him to be speaking so clearly and meaningfully at age 6 like he is, much less using that speech to teach me things about math. The kid is brilliant. And I want to tell all of you, with children who are diagnosed with autism and global developmental delays like my son was, that this IS NOT the end of the road. It is not a prediction. It is not a set-in-stone Way Things Will Be. Trust. Hope. Keep your minds open. And you will be surprised at what your child can do. Do not let anyone place limitations on your child. He or she holds more potential than anyone can see, think, feel, or predict. It will rock your world, if you let it.

Autism and Feelings

Little G came up to me the other night, tugged on my shirt and said, "Mama? I want to tell you about something." I said okay. He said, "When you talk to daddy for a long time, I feel jealous." I asked why. He said, "Because I want your attention and when you are talking with daddy, I can't have your attention all for myself." ♥

Sort of dispels that whole 'autistics don't feel' stereotype, doesn't it?

Autistics Speaking Day

November 1st has been designated as Autistics Speaking Day. (It's also 11/1/11, which is numerically and symmetrically awesome, in my humble opinion.) My son wasn't aware of Autistics Speaking Day, but he did make a contribution which may help to disprove one of the most frustrating stereotypes about people on the autism spectrum. The myth: people with autism feel less than other people. The fact: people with autism feel at least as much as everyone else. My son did a beautiful job of illustrating this point.

Little G often uses his magnetic drawing boards to say what he otherwise cannot when his words "won't come out right". He also likes to draw pictures sometimes before bed. The other night, he made this:

I asked what it was about, and he said, "It's called Things I Feel." Top, from left: sad, happy, surprised. Bottom, from left: angry, silly, talky.

People with autism often express their feelings differently, or in less obvious or outward ways than typical people, but this doesn't mean they don't feel. Little G might not tell you, "I am so happy right now!" But he probably will draw a picture of himself with a huge smile, surrounded by things that bring him joy.

Autism Awareness