Educating the Educators Part 1

My next 2 posts are going to centre on schools. It’s a subject that has been on my mind 24/7 since I made the difficult decision to homeschool Simon for his Grade 1 year, while we searched for the right school to meet his needs. We believe we have found that school, and they seem to really ‘get’ Simon, and enjoy him for who he is. But… BUT, they need the funding to accommodate him next year. So we’ll be starting that process of applying for government funding, and praying for the best results for Simon.

Today’s post will give examples of some of the worst of the worst – in my opinion. Examples from the news and my son’s own experience which closely mirrors one of them. The next post will look at the flip side of educators who go that extra mile in recognizing and meeting their students’ needs.

In November of last year, we were at a crossroads with Simon’s school. His homeroom teacher seemed lost and overwhelmed, she couldn’t keep up with Simon’s vocabulary, let alone his activity level, craving for constant knowledge, and need for vestibular and proprioceptive sensory input. At that time, Simon’s SPD had not been diagnosed, and given the textbook behaviours he was exhibiting, I am shocked and dismayed that none of his teachers recognized any of the classic signs. With friends in the education field, I know these teachers take paid days off (called Professional Development days here) to learn about these types of signs and symptoms, and to learn strategies to manage them and communicate with parents about them. All we received were daily phone calls from exasperated teachers, one of whom informed me that Simon was merely “a cheeky little boy who never wants to do what he’s told”.

The breaking point for us, and for Simon himself, was the day his teacher – a trusted authority figure in his young life – called a class meeting where she instructed all the children to tell Simon what they didn’t like about him. He sat his super-sensitive self down on a little chair, and listened to each child in the room tell him he was annoying, weird, loud, etc. So if you’re wondering why I advocate for cameras in the classroom, now you know. As a mother, it feels like I let him down by sending him into that environment. As a citizen, I demand a better definition of ‘education’ for all of our children.

I recognize this is not the norm – but it’s also not an isolated case. In my research on Aspergers, I came across this article that almost mirrors Simon’s experience. This teacher orchestrated a meeting in her kindergarten class for students to ‘vote out’ an autistic boy, after telling him what they didn’t like about him. That little 5 year old listened to words like “disgusting”, and after losing the vote 14-2, he was sent out of the classroom to spend the rest of the day with the school nurse.

That teacher was suspended for a year without pay. But I have found nothing yet that indicates she understands why her actions were so incredibly deplorable.

There is a movement gaining momentum right now to change legislation in the United States, preventing restraint and seclusion for disabled children. This article from NPR outlines the need for this legislation.

My goal with this post is not to paint all educators with a broad brush of criticism. Rather, I would hope that educators who define themselves by their professional integrity would express nothing less than total disgust for these examples of abuse and misconduct. I don’t believe in demonizing OR sainting any profession. There are good and bad teachers, but what they have in common is the need for an education in sensory and autism spectrum disorders. Even a good teacher can find themselves making a poor decision about the restraint of a child, if they’ve never been educated in how to prevent or manage those situations. We need to educate our educators, and advocate for a higher standard in the compassionate care of our children.

I know there are wonderful teachers out there. The next post will look at the Gold Standard in education.

Brag Fridays! Science Fair Project

One of the Yahoo discussion groups I belong to has a fun feature called Brag Fridays. For a group that exists solely to discuss our concerns, fears, worries, questions, and needs surrounding kids with ASD, it is a welcome relief to take a little day trip on Fridays to that more normative parenting paradise: the Land of Brag. I haven’t posted a brag yet – not for want of one, just haven’t had the time yet. But this Friday I am definitely posting Simon’s Science Fair project.

A few summers ago, Simon found a fascinating rock-like object with ribs or ridges on it. It looked a lot like a fossil, so we contacted the Manitoba Museum and met with their Paleontologist. He took Simon to the fossil exhibits and showed him the creature his ‘rock’ had come from (ammonite cephalopod). How old was Simon’s fossil? 460 million years! Simon was amazed. I wonder what a 6 year old brain uses as a reference point for conceptualizing a number like 460 million!

He entered his project on Fossils in a local homeschool project fair. He chose to be judged (I was hoping he wouldn’t, as he’s sooooooooooo sensitive about that stuff) but he handled it beautifully. The judges were two University of Manitoba science students, and they were great with the kids. What struck me – and I mean REALLY struck me – was how keenly they listened to Simon’s, shall we say… thorough…. discussion of his fossil. I have spent years watching everyone from the grocery store clerk to his psychologist pretend to listen to his… thorough…discussions, only to cut him off half way through when their attention span ran out. But these students were genuinely interested, impressed, and engaged in what he was sharing with them. This really meshes with the Aspergers diagnosis which indicates a tendency in AS kids to relate better to adults than to children. It was a relief to finally see an environment where Simon could really shine and feel ‘normal’.

Simon did all the work for the project himself, with the exception of the typing, and the reading of research materials. He went up to the children’s librarian and asked for books on fossils, and I did most of the reading out loud with Simon advising me which pieces of information he felt should be used, and which should be left out. I helped him organize his information into categories, and he came up with the titles for each write-up. He drew a detailed picture of what the full creature looked like, and he took photos in the Museum and made a photo book of their fossil exhibits. He was able to articulate for the judges how a fossil is created, why we study them, what type of creature his fossil was, and of course, he gave them each a gummy dinosaur for making a guess about its age.

Simon needed a lot of encouragement to get his fossil project done (which strikes me as entirely normal for a child his age), and he needed a fair bit of encouragement to open up to the judges when his turn came around. But after evaluating his project {including his understanding of the subject and the amount of work he did himself) they gave him an A, giving him a great boost of confidence as both a learner and as a teacher. More importantly, everyone knows an A at the project fair is a ticket to McDonald’s :)

That’s my Brag! What’s yours?

If Simon Could Make the School Rules:

1. All children are cherished as whole people.

2. No child is ever shamed into submission.

3. No child is ever tied into a chair.

4. There are no more than 20 children in each class, and each class has 2 teachers.

5. Every child who needs an EA, gets one.

6. 50% of all teachers are men.

7. Only teachers who actually like children are allowed.

8. Friendly, qualified OTs on staff, all day, every day.

9. There is heavy work and movement during and between each subject.

10. Cameras record everything happening in the classroom. Parents can link in at any time to observe.

11. Uttering the words “Sit still!” is grounds for dismissal.

12. Pants are optional (ok this one might be pushing it)...

13. The first order of business in the classroom each morning is telling jokes.

14. Following curriculum is half as important, following tangents is twice as important.

15. Standing still in straight lines is strictly prohibited. Zigzaggy, crazy wavy, twirly whirly lines only. Bonus points for standing in line on your head.

16. Art class is every day.

17. Differences are celebrated (with gluten-free dairy-free soy-free cake)!

18. Free gumball machines in every classroom.

19. There are two cafeterias: Oral Seeking and Oral Defensive. Food from one NEVER touches food from the other.

20. Instead of nasty comments about neatness, gold stars are given for the ability to morph the number 64 into a doodle of Luke Skywalker battling Darth Vader on your math worksheets!

Sighhhhh. I can dream can't I :)

"My Child Thinks In Rainbows"

I came across that phrase in a post written by Robert Vincent in a discussion forum recently. He kindly allowed me to cite him here. I was so struck by how accurate this description is for Simon and, from what I’m reading, most high-functioning autistics including Robert’s child. I think it also aptly describes the key reason why school is such an issue for these kids. As Robert put it, “The school wants my child to think in black and white, but she thinks in rainbows”.

It’s almost counter-intuitive, as Aspergers kids are supposed to be characterized by black and white thinking. And to a very large extent they are. Issues of injustice are rarely ever entitled to a gray area, explaining the concept of opinion vs fact is nearly impossible. Yet by making blanket statements like ‘high-functioning autistics think in black and white’, we are painting only half the masterpiece.

When Simon was in Grade 1 at public school, he sang Oh Canada every morning like all the other kids. Well, not quite like all the other kids. He sang it “opera style”. He wasn’t making fun of our nation’s anthem. He just likes to sing that way sometimes. Unfortunately his teacher didn’t see this skill as one of the colours in his rainbow, and she sent him outside the classroom each time he did it. He really struggled to understand how this penchant for operatic flourishes made him a bad student. So do I.

One morning when Simon was about 4, I realized the house had been uncharacteristically quiet. Things with Simon were never quiet for more than a few minutes at a time. I remember telling myself I was being paranoid, and I went back to my work. A few minutes later, Simon emerged… he looked like this

He had snuck into my purse, opened my makeup bag, and covered himself with my brown eyeshadow (using an applicator the size of a pinky fingernail). And this is the tale he wove from that ‘black and white’ mind of his:

"Mama, while you were cooking I just stepped out on the front porch, just for a minute, and the Lost Boys were there with Peter Pan and well… I got a little dirty playing with them there on the front porch..."

Then there’s the truly fascinating element of synesthesia – defined roughly as experiencing one sense as another, or a blending of the senses. In Simon’s case, he often describes a taste as loud or quiet, a scent as purple or green, a sound as warm or icy. This is not necessarily synesthesia, but it occurs so frequently for Simon that I'm sure it must be related to the same neurological basis as his SPD and/or Aspergers. The literary critic in me considers these metaphors pure brilliance. You know that little a-ha feeling you get when reading a really good book, the author making a remarkably insightful metaphor that carries you so much deeper into the story than you otherwise could have gone. Like traveling … on words. This is definitely part of Simon’s rainbow.

Then there are the moments when Simon expresses deep emotions in a way that can sometimes be so profoundly moving. We were recently snowed in at a little town, while making a return day trip back to our city. Simon is still talking about how much he loved that little adventure. Yesterday while playing lego, out of the blue he said “Mama, my chest never felt so warm as it did that day”. I think it was more than just the excitement of the moment… I think on a very real level Simon understands that what’s making him sensitive and different, is the same thing that’s behind his departure from school, his struggles in play situations, his challenges with attention in busy environments, his occasional meltdowns over clothing. And I think in that moment when he realized that all bets were off, all roads were closed, all plans were changed and we were not immediately returning to our ‘normal’ life that evening - in that moment he felt freedom. When we turned the van around and headed for the hotel he saw, through windy waves of snow being plowed back and forth across the windshield, a road that would temporarily take him to a magical place where he was just Simon the six year old. Not Simon the SPD/Aspergers/Gifted/Homeschooled six year old. And I can tell you that night and the following morning, he was the happiest six year old on a waterslide in the middle of a snowstorm, you’ve ever seen. And as we pulled away from the hotel and headed home the next day, Simon said it was “like living in a sparkly snowglobe for a day”. Amen.

To me, these are not the thoughts, words, or actions of a simple black and white thinker. Perhaps the reason so many of us, schools especially, continue to struggle with how to teach these rainbow thinkers, is because we have not yet learned to recognize the colours in their spectrum. Have you ever tried to imagine a colour you have never seen? Try it.

I think imagining that colour is the best analogy for us neurotypicals trying to imagine how an autistic mind works. And that colour, the one never before seen…. no walls painted in it, no crayons named for it, no flowers revealing it to the morning sun… isn’t that colour all the more beautiful for its enduring mystery?

A single rose in Baby's Breath, Simon's Valentine gift to me.

How Ironic

I had the most bizarre, yet enlightening experience last night thanks to Yahoo. I had joined a Yahoo discussion group for parents of kids with Aspergers, and posted a few questions. One was a question about socialization ‘training’, and people’s experience with this approach. I was interested in whether people felt it had been helpful for their kids, or if it had been futile and made their children feel more alienated (which was a position I had read in many articles written by older Aspies). Simon is scheduled to begin social skills training classes in fall (they don’t start till age 7 in the clinic he goes to).

I was really impressed by the wisdom and variety in the responses I received. Lots of parents felt their children absolutely needed these skills and the training to get them. Many others, most with teenagers, expressed regret at the volume of training and therapies they had forced their children to attend over the years, to no avail. For many of them, their journey had come to a point where they realized that, for their kids, AS was an integral part of who they were, and as such their kids needed acceptance not conversion. Others eloquently explained that their mission was to equip their kids with the skills to achieve the dreams their children had expressed for themselves (friends, marriage, college, etc) and their job was to push their kids beyond their comfort zones in order to get there. Each position made good sense and I learned much from both ‘sides’.

Then the most bizarre situation occurred. A woman began posting these bitter tyrades against people who chose not to force socialization training on their kids. She argued that fitting in was essentially a requirement to be a worthy human being. She described people with AS who wanted to be accepted for who they were as people who “didn’t have a clue” and who were “whiners and complainers”. She explained that it was “nice, nice, very nice” for parents to accept their kids for who they are, but they shouldn’t complain in 20 years when their kids are drooling in diapers.

???????

People who responded to her with more moderate positions were met with the most venomous and sarcastic put-downs I’ve ever seen on a board of this kind. I thought to myself, there’s always one in the bunch! But what really struck me, was the sheer irony of her position.

Here she was, arguing that kids with AS should have forced socialization training, and she was making her arguments with the most anti-social, immature, offensive communication style I’ve seen in years. Those are three key communication issues that AS socialization training targets – but of course the difference is people with AS don’t intend their words to hurt, and aren’t generally capable of twisting insults into sarcasm for maximum offensiveness.

And this irony totally escaped her.

For those of you who know me, you gotta know I could not bite my tongue on this one. I composed a few very restrained and (what I like to think were) very reasonable posts encouraging her to tone down her rhetoric. Then I received an email in my yahoo account saying my posts were “not approved”. The email was from her.

She is THE MODERATOR of the group! Unbelievable. I have to say it was almost a humourous situation – there was no end to the irony! But it just brought me back to the understanding that social challenges are part of the human experience, not just the AS experience. The only thing that left me with a twinge of sadness was realizing that this situation was so much like the ones my little Simon will need to face as he grows up: a big loudmouthed bully hurling insults at him as a result of their own ignorance and insecurities. I think I will have to add ‘skin-thickening classes’ to his repertoire of therapies.

Anyhow, clearly that was not a group for open minded discussion, unless your opinions happened to match the moderator’s, so I promptly left and found another one of the hundreds of yahoo groups dedicated to Aspergers. Along the way I found this remarkable blog by a fellow named Gavin. And in yet ANOTHER twist of irony, his latest post is all about intolerance – on both sides of the AS experience.

Practice some random acts of tolerance today :)

Drama Club and a Template

Well, we have certainly had our share of drama around here in the past week. First Simon's diagnosis, then on Friday we were snowed in during a blizzard at a town outside of Winnipeg (thank heavens for hotels with waterslides!), then baby Seth ended up in children's ER with a really bad case of croup, followed by me ending up in ER last night for nearly fainting from dehydration (the result of having the same virus as Seth - and everyone else in the house)! I am still awfully sick, but Mark has been amazing looking after all of us while being sick himself.

In lieu of my usual musings which I am just too sick to undertake today, I'm posting the letter we gave to our church ministers, to explain Simon's situation in regards to his participation in sunday school. This was before his Aspergers diagnosis, so it focusses on the impact that SPD has. I thought it might be helpful to anyone looking to write a letter to a school, club, or church etc. explaining why their child may appear to behave differently than other children. Feel free to use this and modify it based on your own child and their needs.

Dear Rainbow Leaders and Helpers:

This is a letter to help you understand why Simon may act very differently than most of the other children in Rainbow Kids.

Simon has a neurological disorder called SPD (Sensory Processing Disorder). You and I have neurons in our brain that interpret sensory information around us every second of every day in a normal way. Your brain tells you where your arms and legs are without you having to think about it; when you put socks on and walk, your brain does not register the very tiny feeling of the fabric moving against your skin; when you are in snow you feel cold not hot; when someone whispers from far away you cannot hear them so you are not distracted by it.

Simon’s brain is very different. His neurons do not tell his brain where his body is, unless it gets a very strong physical message like a super-tight hug or a fall to the ground. If Simon is grabbing people, falling, climbing, running or crashing – that is his way of feeding important information to his brain about where his body is in relation to the things around him. Try to imagine what it would feel like if you were uncertain about where your limbs were in relation to the space around you, and you can imagine how difficult it can be for Simon to remain focused and calm. Allowing him to crash into walls or climb over furniture (where safe) without reprimanding him, would help him give his neurons the information they are seeking. Occassional very firm hugs, for those of you who are comfortable doing this, would also help.

Simon’s brain also does not interpret temperature or tactile sensations the way ours do. To him, a cool bath feels very hot. A piece of clothing moving even the tiniest bit against his skin, or a bit of glue on his hands, sends a powerful neurological message to his brain that his skin is being attacked or irritated. Again, this can make focus challenging for Simon.

Another important element of Simon’s sensory differences is that he has an extremely advanced sense of hearing. Many children with SPD can detect audio frequencies that don’t even exist for you and I. An example is that as a baby, he would always wake up to the almost undetectable sound of a light switch being flicked on in the room next to his, even when all the doors to both rooms were closed. We call this Simon’s superpower, but it can cause Simon to become easily overwhelmed by loud and busy places, as he is hearing EVERYTHING from the tiniest to the loudest noise. This again can affect how well he is able to cope and manage in Rainbow Kids.

Simon loves going to church but has expressed that he feels everyone in Rainbow Kids thinks he is “weird” and doesn’t like him. We are hoping that we can help ensure Simon integrates appropriately and feels welcome in Rainbow, even though he is very different. There are lots of ‘differences’ in Rainbow, and perhaps doing a few weeks on this theme of accepting people’s differences without judging, could be considered. Simon may even be willing to talk a little about his SPD differences to the group if we talk with him about it beforehand. Perhaps there are other children who would like to share their differences as well.

There are some activities that may need to be modified for Simon. For example, he may not want to do, or may ask for help with, activities that involve glue or sticky materials. Simon has red coiled ‘chewlery’ that he is allowed to chew on to help keep his neurons happy by feeding them constant sensory information. Activities like running around too much or taking in too much noise, will push his brain’s ability to process sensory information over the edge, and he will appear hyper or out of control because he is overwhelmed. At those times when he is really out of control, taking him gently aside and offering to let him to do a calm activity like a puzzle, lego, or even a video game would be appropriate.

It is important to remember that as much as it looks like Simon is showing ‘bad behaviour’, he does not have a behaviour problem, he has a neurological one. This can be a major adjustment, because generally you would not ‘reward’ bad behaviour with something like a game or computer time. But for Simon, he is largely not in control of the way he reacts to neurological information, and he needs an adult to help him find a way to calm down without making him feel badly about himself. Disciplining him for something he cannot control will hurt his self-esteem (of course, this does not mean Simon never does anything willingly that requires discipline, it just means we need to be careful in deciding whether he is making a bad choice that he can control, or just reacting to the messages his neurons are sending him). Because neurons fire differently in the brain at different times, Simon has some days where he is neurologically well-organized, and others where he is not. He can learn, very gradually over time with occupational therapy and age, how to better control his neurological reactions. But for now, Simon needs a LOT of patience and understanding, and we are hoping Rainbow leaders and helpers will provide this for him.

Thank so much for reading our long letter and for volunteering your time with the Rainbow Kids!

Sincerely,

Mark and Caitlin

Animal School

Second Thoughts

"Autism to me, says that I accept my child wholly. I celebrate his differences and his quirky-ness. I advocate diversity. I try to empower him. I am proud of his successes, no matter how small they seem. I hope he holds onto the compassion he has in his heart into adulthood. I do not think he needs “fixing”. I am proud that he is my son, and sometimes I am humbled by that very same thought."
“mommy~dearest” at The Quirk Factor: Resistance Is Futile

So I’ve had a few days to let the diagnosis set in. A little time to do some reading on Aspergers (check out this very cool Aspergers blog featuring the quotes I’ve used here). And as much as this diagnosis brings a whole new dimension to understanding Simon and how he experiences the world… it also takes me right back to where I was back in September before any of the diagnoses, trying to reconcile the need to fit Simon into a school ‘system’, while allowing him to be uniquely himself. When Simon’s doctor says he can essentially ‘learn his way out of Aspergers’ – what exactly does that mean? I assumed this could only be a good thing when she first said it, but over the past few days I’ve read many essays and articles by ‘Aspies’, and they have a remarkably legitimate perspective on this concept of training a child to ‘not be’ autistic.

A successful speaker, husband and father with Aspergers (and three Autistic sons) Brian King expresses it with the mantra “Why should neurotypicals make all the rules?” Neurotypicals are those of us without any neurological ‘disorders’, 'Spectrumites' are those who do. In the fascinating article "The Strength to Connect", he explores the beautifully logical reasons why neurotypicals might want to reconsider the way we do things, rather than expecting Spectrumites to fit into our narrow definition of ‘normal’. There is a valuable lesson in the story of the Aspie teenager who was told to socialize in the chaotic lunch room…

This is in line with the question of whether Aspergers or high-functioning autism, should really be considered a ‘disorder’ at all, or whether they are simply differences. Sometimes, those differences are exactly what the world needs. Are we depriving the world of a gift, and depriving a child of their identity, when we try to ‘train them out of’ Aspergers?

"Autism is about having a pure heart and being very sensitive… It is about finding a way to survive in an overwhelming, confusing world…Autistic beings develop and bloom if their spirits, talents and self-esteem are not destroyed by bullies, prejudice, ‘doggie-training’, and being forced to be ‘normal’." Trisha Van Berkel

Here in Canada, the big news is the Vancouver Winter Olympics, hosted by our province of British Columbia. Canadians know that west coasters have a distinct identity (like most regions will form for themselves), and in Vancouver it’s a dichotomous culture of sophisticated tree huggers, fashionista environmentalists, pot smoking professors. There are plenty of other folks too – I don’t want to stereotype BC, but overall this is the identity they are associated with. So imagine how ludicrous it was when, in anticipation of hosting the Winter Olympics, the government distributed an entire manual of suggestions for how British Columbians should present themselves to the world. No white socks with black pants, no short socks with skirts, smile – but not too big, no clothes that are too tight and while you’re at it no clothes that are too loose…. page after page of instructions on how BC should essentially pretend it’s …. not BC. And if BC wasn’t unique and special, if it was average and ordinary and never smiled ‘too big’ – would it ever have been good enough to host the Olympics in the first place?

I wonder if this is what we do to kids with Aspergers and high-functioning Autism when we decide they should be more like us, and less like… themselves.

"This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces." Jim Sinclair

But there is a fine line here. I haven’t figured out its coordinates yet but I know it’s there. A child who is unhappy, isolated, unable to speak, unable to learn… those are not aspects of a unique personality, but rather challenges to be overcome. The question is where do we start and stop with training a child out of a mild form of these ‘disorders’. It used to be clear to me that this is exactly what we should be doing – ‘helping’ them out of their disorderly status… but I have to admit I have had to temper that judgement since reading testaments by adults with Aspergers or high-functioning Autism. Many say they don’t have a disorder, that they are different and should be accepted as such. Many say that these differences often carry them to success, not failure, but only when neurotypicals accept them rather than isolating them.

There is no question that when a child is not happy, action is required. Therapy, treatment, possibly medications depending on the cause. But how far do some approaches go in treating the disorder – do they sometimes flow over that invisible barrier between disorder and person, and start erasing the person, along with their disorder?

Is there a higher purpose and a deeper meaning to these differences? Is there a treasure here, that our carbon-copy, efficiency-driven culture doesn’t have the time – or the attention span – to recognize….

"Autism is not something I have. It is integral to who I am. Eliminate the autism, and you eliminate me. When you say you want a cure, you are saying I should be put to death. Think about it." Parrish S. Knight

The Day That Nothing and Everything Changed

A few short days ago I was musing on Simon’s challenges, having gradually opened my eyes to the extent of his differences…and as I was still at that time living in my relatively comfortable SPD bubble, I felt secure in casually tossing out my guesses about Aspergers Syndrome. We had finally gotten to a point where I felt I understood about as much as I could about SPD, had a suitcase full of strategies to help Simon through each day. I felt like I was at least within sight of the peak and eventually we would conquer the mountain and descend the other side. After all, kids can often ‘outgrow’ sensory issues insofar as they learn to manage them.

Kids don’t outgrow Autism.

Today… well today we heard it straight from the doctor’s mouth – almost in slow motion like in the movies: Aaaaaaassssspppppeeeeerrrrrrgggggeeeerrrrsssss.

Simon has Aspergers Syndrome. Specifically he has a trifecta of Aspergers/SPD/Giftedness.

I know it’s not the most sophisticated way to handle this news, but I admit I have an empty bottle of Yellowtail Shiraz on my counter now. I usually can’t make it through a bottle of wine by the time it’s past its prime. This one took me less than 24 hours.

So the good news is that Dr. Moser believes Simon’s level of intelligence will, given the right Applied Behaviour Therapy over time, allow him to essentially teach himself how to *not have* Aspergers (finally, a “gift” in the giftedness label)! She said there is a chance he won’t be markedly different from his peers when he’s older, as long as we get him the resources he needs now. But for the moment… he’s definitely different than his peers.

Aspergers is High Functioning Autism. It’s one thing to hear someone tell you your child is Autistic, it’s another to come home and let it sink in over a glass of wine and a bazillion google searches. Searches that bring up links to heart-wrenching documentaries and heart broken parents.

Simon’s up against something big here. He may be at the highest end of Autism, he may be very smart, there may be all sorts of silver linings and quotes we can apply like salves (“Einstein and Edison had Aspergers”) …. but it's still Autism…. AUTISM. I have to keep saying the word. It’s not sinking in.

I don’t want the world to be this hard for my sweet, almost painfully innocent little boy. I don’t want him judged. I don’t want him tormented. I don’t want him to suffer.

And then it hits me… I’m so focused on this word, and what I don’t want for Simon, but what does Simon want? He wants me to look at him the same way I did before I heard that word. He wants me not to judge him. He wants the same things he wanted yesterday.

Simon is no different today than he was yesterday. He is the same sparkling little soul, full of the same infinite potential. His future is no worse, in fact – his future is all the brighter because now we know what we’re dealing with. We know where to look for answers, for treatments, for… hope.

That google frenzy resulted in many shining lights for the path ahead. Examples of happy, successful adults who not only live with Aspergers but excel because of it. Who are who they are, because of it.

If Simon is who he is because of Autism, then I adore Autism, because I adore Simon. And I adore him today as I did yesterday, and will with all my heart all the days of my life.

A Recipe for Disorder

1 part love
1 part beautiful child
1 part nature
1 part nurture
1 part secret ingredient

What is this secret ingredient? A genetic mistake? Coincidental neuron mix-up? Evolutionary adaptation (see The Orchid Child), or Environmental contamination? A God-given gift with a purpose?

Sometimes this stuff makes my head spin. I am a problem solver. On those personality tests, I come out as this type to the extreme. So our riddle of the day is: How do you solve a problem with no cause?

I admit I’m the type of person who likes to have all the answers, and even when I don’t have them, my colleagues will tell you I’m damn good at convincing people I do. But here I find myself in a place where answers are like water in a desert of questions: no where to be found.

The other day I was lamenting how I wasn’t religious enough in taking my prenatal vitamins. I have a very healthy diet rich in veggies and fruits, so I cut myself a lot of slack on the vitamins, but now of course I am on the hunt for the culprit. The shadowy figure who ‘gave’ my son this condition. Am I that shadowy figure? Is my husband (or his genes – I’d love to lay this one on my mother-in-law)…

The SPD Foundation says this: “the causes of SPD are among the subjects that researchers at SPD Foundation and their collaborators elsewhere have been studying. Preliminary research suggests that SPD is often inherited. If so, the causes of SPD are coded into the child's genetic material. Prenatal and birth complications have also been implicated, and environmental factors may be involved. Of course, as with any developmental and/or behavioral disorder, the causes of SPD are likely to be the result of factors that are both genetic and environmental. Only with more research will it be possible to identify the role of each”.

So, it looks like it's partly my Mother-in-Law and partly the environment. When I look around at the sheer volume of pollutants and contaminants and carcinogens and chemicals – it seems almost impossible that these aren’t a factor. And those are just the ones we know about – pesticides aren’t listed on labels, the genes from the lizard used to grow the corn aren’t listed. Doesn’t it seem almost inconceivable that we have messed around with Nature to this extent without affecting our children?

Here is what http://www.sensory-processing-disorder.com/ says about causes: "As for causes and individuals who are "at risk" for developing SPD? Well, we do know that SPD is a neurological disorder that can begin in utero, or as a young child, due to many factors which can disrupt normal neurological development. If you understand that neurological development is a maturational developmental process that every child goes through, then you can also understand when factors might negatively impact that development".

According to them, children at risk for having or developing SPD are those who:

1. Have Autism, Aspergers, PDD, or other spectrum disorders (which are neurologically based too).
2. Have been institutionalized or understimulated during critical periods of neurological development.
3. Have been tube fed for extended periods of time (due to decreased oral stimulation and proper oral motor development).
4. Have Fragile X Syndrome, Fetal Alcohol Syndrome, Down Syndrome, ADD/ADHD and other developmental delays and neurological disorders.
5. Were drug addicted during fetal development.
6. Have relatives with SPD, especially parents or siblings.
7. Do not receive proper, or enough, stimulation to all senses during development.
8. Had extended hospital stays, especially in the first year.
9. Have been exposed to a variety of environmental toxins.
10. Have food allergies.
11. Those with mental health issues (although the chicken/egg theory can be argued here), as it increasingly becomes apparent in adults.
12. Are gifted.

Simon has a few of those for certain, a few more are possible. But would I even know if he'd been exposed to an environmental contaminant? In this photo from a few years ago, Simon has a temporary tatoo, he's painting an easter egg with a set from the dollar store, and in the background is a new rug. Any or all of those could have been an environmental contaminant. It's almost too overwhelming to think about - when I do pause to consider it all, I get that same whoooosh sensation as when I pause to contemplate the origins and boundaries of the Universe itself. Has any child not been exposed to a contaminant in this modern world?

Is a vaccine a contaminant? I know my son’s pediatrician is skeptical about the vaccine debate. At Seth’s last appointment, I told her I wanted all his vaccines split up from now on. She gave me a bit of a look – not a condescending one, just a “really?” kind of look. So I explained my rationale: Simon has clear neurological issues, he had a wheat allergy under a year of age, he had significant childhood asthma until he was 6. Now Seth has a significant allergy to dairy and soy. My boys are telling me with their physiological reactions that their systems are sensitive to what the world is throwing at them, that they can’t handle it without their bodies reacting with illness. I don’t know why they are like this, and I don’t know how to fix it. But I do know that there are things I can do to improve their odds, and one of them is to break up their vaccines into individual doses.
She seemed to agree that their sensitivities warranted a more cautious approach with vaccines, and so - no more medical cocktails for them.

When my son was 5 his pediatrician put him on a new asthma medication. It was supposed to be an alternative to steroids, without the side effects of a stimulant. WOW, were they wrong. Within hours Simon was like a different child. He ran through the grocery store pushing things off shelves, he jumped into the street until we caught him, he literally spun in circles like a tornado and he became so angry. He while he was doing this he would be crying and saying “I can’t calm down, I can’t calm down, mama! I want to be good, why can’t I be good?” I called his doctor and she said the medication shouldn’t cause that behaviour. But my instincts told me otherwise. So I googled it. Pages and pages of testimonials from parents saying this medication caused these exact reactions in their children, and that the behaviour stopped when the medication did. So I called the doctor back and she agreed we should stop the medication. Behaviour resolved within days.

The lesson I learned that day was not merely to trust my instincts, but moreover to not back down even when ‘evidence’ or ‘experts’ don’t support your instincts. We may not know the causes of sensory processing issues, but we do know what that little voice inside our head sounds like when something isn’t right. If you believe there are things in your child’s life that are causing them harm, trust your instincts and don’t back down when you encounter skepticism. Whether the cause of harm is relatives convincing you to discipline your child more harshly for better behaviour, a teacher implying your child needs to be medicated, a doctor prescribing something that affects your child negatively, clothing that irritates them, or foods you suspect they react to. You may never know the overall cause of your beautiful child’s struggle. But with a little education and a lot of determination, you can be the cause of their liberation from it, to the greatest extent possible.

The First Duty of Love

“The first duty of love is to listen.” Paul Tillich

I wish all parenting and baby books would begin with this quote. As parents, I think it is the greatest gift we can give our children - to truly listen to them. I think most of us believe we are listening, but are we… really?

When Simon was very little, I think I was a very good listener. When he was still learning to communicate, I gave him my full attention, to help him express what he was feeling/wanting/needing. But at some point between the ages of 2 and 5, Simon became so proficient with words that I not only felt he didn’t need my help and attention as much, but frankly, I had to ask him to take ‘talking breaks’ when I became overwhelmed with how much he was communicating. He could literally go for 30 minutes without pausing for more than a short breath. He wanted to know everything he didn’t know, share everything he did know, relay everything he saw, ask everything he didn’t understand…

And like most parents, I tuned him out on many occasions. I ‘heard’ him but I wasn’t listening. I was preparing dinner, or cleaning the house, or doing laundry, or working on the computer, or reading a magazine with one eye while the other one tried to appear as though I was looking at him while he spoke to me about … what? I don’t recall, because I wasn’t really listening. How many times have your kids caught you in this parenting pitfall – they ramble on about something enthusiastically and you don’t even really notice that you aren’t listening – you are hearing but not really registering what they are saying, and they say “don’t you think so?” and you say “um… what was that again honey? I didn’t hear that last part”…

"So when you are listening to somebody, completely, attentively, then you are listening not only to the words, but also to the feeling of what is being conveyed, to the whole of it, not part of it.” ~ Jiddu Krishnamurti

I was ALWAYS multitasking. Wasting time was not a luxury I could afford. Kids, work, home, volunteering, dinner, budgeting, romance… there was a big to do list at the start of every day and not a single one of those lists had “listen to your kids” written on it.

Then a friend of mine lost her 16 month old son to cancer and I thought… what would she give to hear her son’s sweet voice again? What would she trade for a thin slice of time to listen completely with her whole being to his beautiful childish ramblings… And so I started listening to my kids. REALLY listening. I decided that listening to my kids was a necessity I couldn’t afford to waste. Now, if I catch that wandering eye of mine trying to do something while the other one is pretending to listen to my kids, I snap myself back into the ‘hear and now’ and just listen to what they are truly communicating to me, with my full attention.

My son is seeing an educational psychologist for a learning assessment and while I try not to judge people too hastily, I admit I decided on the first visit that I didn’t care for her in terms of her ability to work with children. Why? Simon was speaking to her, full of gusto about some Star Wars something-er-other (I do listen – I just don’t understand Star Wars!) and instead of getting down to his level and looking him in the eye and asking him about this exciting tidbit of trivia – she looked at me, and just started talking to me about his assessment. He had barely gotten to his second sentence by the time she decided he wasn’t worth listening to, and turned her attention to me. She talked right over him, and didn’t even notice. Simon noticed. His face went from lively and bright and enthusiastic, to reserved and disappointed and almost embarrassed that he had been silly enough to think she would care what he had to say. His once-exuberant sentence trailed off as he stared down at his feet.

When she was done talking to me, I got down and asked Simon to repeat what he had been saying to her, and told him I cared about what he had to say. It can be exhausting, and I can’t always listen when he wants to talk – but I CAN make certain that he knows I care, that I will listen as soon as I can give him my full attention, and that his voice means something in this world.

“To listen takes great effort. To just hear has no merit. A duck hears also.” Igor Stavinsky

Queen of Denial?

No, I am not the Queen of Denial. I am soooo far above the Queen in rank, that she seems hardly bigger than a speck of sand as I gaze down upon her from these dizzying heights. Queen of Denial, bah! I am its Goddess, and long have I reigned. Here I am, looking happy, 'cause everything is juuuuuust fine. Until I allow myself for just a moment, to consider one of my greatest fears: that I have robbed Simon of years of crucial therapy while I wove a complex tapestry of reasons and excuses for why there was nothing about my sweet boy that required any “special” attention. Despite having nagging unspoken suspicions that Simon was different, possibly profoundly different, than other children since he was a baby, I banned the word "special" from my lexicon. I did the opposite of burying my head in the sand. Instead, I craned my neck as far as it would extend, holding my head up high with pride in my normal family and my normal life. This post is gonna be long, but I hope by the end you can glean something from it that shines even the faintest light on your own denials, and your own gifts.

Some days, it really does look remarkably normal around here. Simon is calm, attentive, happy. He glides through his school work, and asks for more challenging grade levels. He doesn’t dwell on mistakes, maintains a positive outlook and is cheerful and well-regulated all day. He lives his day to its full potential.  These are the days when his neurons are all getting along, cooperating for him, firing in sequences that work.

Then, there are days like today.

Getting dressed: underwear and pants cause excrutiating agony followed by Simon screaming, writhing, begging for relief from these unbearable sensations.

Math: After breezing through a pile of challenging flash cards with complete ease, he gets to the easiest one in the bunch: 3+1 (which he has known for years) – and is completely stumped. You can see in his eyes he knows it, it’s in there, but he can’t pull it out. There is something blocking his recall on simple facts, and not just in math. He can talk your ear off on a subject of interest but if you ask him a simple question that he obviously knows the answer to, he will draw a blank. "I'm just feeling mixed up Mom" he'll say, and I used to take that statement for granted but the more often this occurs, the more I think he really MEANS that literally. Simon may be telling me, in his own 6 year old way, that he has what many call a "learning disability", but which I prefer to call a learning "difference". This is a big one for the Goddess, I've been resisting this one because I feel like my plate is just not big enough to hold this extra side dish.


Piano practice: As he plays the tune his teacher has assigned, his fingers accidentally touch a key that wasn’t meant to be touched – not enough to even make a sound but still – there was a touched key – perfection is lost again and the emotional devastation of being imperfect with a single piano key overwhelms him as if the world was depending on him and he has let us all down.

Friends: A playdate reveals the most significant hurdle we have to conquer – the one that I have only recently realized – that as social as Simon is/wants to be, he is displaying significant signs of social challenges in line with a developmental diagnosis that lines up with either Asperger’s Syndrome or giftedness, or both since they statistically coexist in many children. Who ever assigned the term ‘gifted’ must have been a die-hard optimist, because on days like today, it does not feel like a gift. He talks incessantly, and friends can hardly get a word in edgewise; he is enormously empathetic to homeless people, starving children, his baby brother, even me if he sees me cry – but he seems completely incapable of being able to prioritize the feelings of his friends during play. He can recognize and relate to them, he can appreciate them, but he cannot flip that switch in his brain that says “I need to accommodate their feelings, I need to compromise to make this situation work”. It’s like a toddler who is not developmentally ready to interact in a give-and-take social situation. Except my toddler is 6 years old and has the vocabulary of a high school student.

He does not do this out of malice or disregard, he almost physically tries to force himself to accommodate his friends in play. But something is preventing him from making these social interactions work, and it’s something that’s stronger than his very strong will to make it work. Simon is starting to perceive that other children – mostly ones without any eccentricities whatsoever – are treating him differently, excluding him, whispering about him. And if you listen carefully, over those whispers you’ll hear his heart breaking, and mine.

From my research, this looks to be either the developmental social delay common in gifted kids (ie, they are years ahead intellectually but years behind emotionally), or possibly Asperger’s Syndrome. Here – here is where my penchant for denial is really kicking in, because I desperately just want to say “everything is fine, everything is fine” but if Simon is not happy, then everything is not fine.

Fears: by this point in the day, he can barely make sense of the slightest sensation or emotion and he is on the brink of what the SPD community calls a meltdown. They are common when kids become completely overwhelmed – and I mean OVERWHELMED – by external stimuli. By this point his basic ability to reason is exhausted. He reaches out for help with the most absurd tasks. He needs to put his socks on to go to the library with Dad, but his socks are in the hallway – which we are both sitting in front of, can see clearly, fully lit with daylight. He is terrified to go in the hallway. A hallway he walks through by himself dozens of times each day without issue. But at this moment he is spent, every ounce of tolerance for people and feelings and efforts and failures, has been depleted. He wants an escort down the hallway.

But I cannot bring myself to hold his hand down the hallway to get his socks. I know he is letting his fears overwhelm him and I know he must learn to take control of them. So I encourage and I support and I coax him to go down that hallway and get those socks, and he begs and he weeps and the terror in his eyes is REAL. Eventually, with Dad leaving out the door and his chance for the library slipping away, he dashes down the hall and snatches the socks off the floor. He whips back, and then melts into sobs as he realizes how horrific that trip was, and how amazing it is that he survived. He is not being dramatic. That is genuinely how he feels.

I give him giant hugs and heap praises on him for taking control of his fears, not being controlled by them. He smiles through a sheet of tears, a real “I did it!” smile. And I smile on the outside because I am honestly proud of him; but inside I am bound up in anxiety because I know that I can no longer diminish these tremendous challenges that my beautiful boy is struggling with. Anxious too, because this feels like a risky adventure to find the secret to my son’s future wellbeing, and they neglected to give me a map or even a compass.

And so I take a deep breath, and I grab some perspective. I jot down one of my my trademark to-do lists: call the behavioural therapist recommended by a friend, arrange an appointment with a naturopath and a chiropractor, make the menu plan for eliminating wheat and dairy and soy, contact the compounding pharmacist for a custom vitamin regimen, finish a few months of curriculum planning, attend the open house for a school we’re considering, order a few more SPD books, cuddle the baby and cherish his wee smile, and give Simon a heartfelt kiss on his just-a-hint-of-still-chubby cheek.

I say thank you silently to Simon for teaching me to open my mind and let go of my preconceived notions about “special” kids, for teaching me to toss out subconscious prejudices I carried around about being a “normal” family, for not just helping me find perspective but for being my perspective when I needed him to be. One day when he is old enough to understand, I will say thank you out loud for these gifts - and for making me into a Mother, surely a gift as infinite and timeless as the Universe itself.