How much of your life have you spent (wasted?) trying to be normal? I constructed my life around the mythical land of Normal, but someone has different plans for me. Last year we were told our son wasn't 'normal', so now we're packing up old prejudices, our preconceived notions and unrealistic expectations, and we're moving out of Normal to a different... possibly better neighbourhood.

You too will find yourself, no matter who you are, joining me in this place where the only true measure of normal is which kind of weird you are. This blog will explore a journey most of us will take at some point: letting go of preconceptions about ‘normal’, peeling our fingers off the image we had of what our lives ‘should’ look like, and having the courage to re-imagine the piece of time we are given in this world.

You are now leaving Normal.

"A nice place to visit, but I wouldn't want to live there!"

Saturday, April 23, 2011

On My Love Affair with Autism

Bet you weren't expecting that title huh? Tonight those are the words that came to my mind, sauntered in all on their own. And this time they came alone. They left their little friend "but", at home.

We bloggers are always and forever writing posts that celebrate autism's gifts, and then customarily acknowledge its challenges. That is a worthwhile approach, and it's what I've done for most of the past year and a half. But I've been struggling to decide what to write for Autism Awareness month, that I haven't already written before. And this is it.

Because tonight, I just dont feel like writing about our challenges. Tonight I feel like giving Autism a great big hug. Don't particularly know why, except maybe that it's been too long since we last embraced. I was thinking tonight about how it's taken me a long, long time to get to a point in my life where I really understand what I love, and conversely, to recognize all that which is superfluous to a rich, rewarding life.

What do I love? I love my disordered little family; I love our smaller-than-we-could-afford-but-not-moving-because-we-love-our-neighbours little house; I love vintage fabrics sewn into cushions on a window seat; I love fresh flowers in the house and opening windows in spring; I love spending my days with the two little people I created and brought into the world; and I love a glass of red wine on the front porch while Daddy puts our creations to bed.

And as I write this list of things I love, it occurrs to me that Autism belongs here. It belongs on my Love List. I'll tell you why:

I love Autism because it made my son one of the most charming, engaging, beguiling, enchanting little boys ever in the history of always. Strangers routinely stopped me to comment on how he seemed to almost... glow. I love his glow.

I love Autism because it opened my mind and challenged me on long-held stereotypes that I never ever would have confronted without it. For example, it turns out not every homeschooler is a sister wife. Go figure!

I love Autism because it forced me to reconsider my priorities, and it relentlessly hounded me until I got them straight.

I love Autism because it inspired me - enought to pull me back to my true love: writing.
 
I love Autism because it has brought me here, to meet you. To learn from and share with you, to forge deeply meaningful friendships and wide reaching connections that I will not only cherish for my entire life, but which I could not possibly imagine my life without.

I love Autism because it has brought me more patience, clarity of thought, confidence in advocacy, and passion for living a genuine life, than I ever could have achieved without it.

I love Autism because diversity and yes, even difficulty, make the world a richer place.

I love Austim because many believe that some of the greatest minds in history have been autistic, and I am one of those believers. While I'm no scientist, I do believe that Autism - and the way we respond to Autism's differences - makes our species stronger, not weaker. 

But most of all I love Autism because it, as much as I, created my son. And if you met him you would know that he is passion and compassion, beauty and wisdom, humour and fear, and darkness and light, all embodied. He is Autism, and I love them both.

Monday, April 18, 2011

April Archives: Why My Child Will Be A Mouseketeer When Pigs Fly


Oh how do I detest thee Disney, let me count the ways...


As a woman who’s grown up in North America during the second half of the Disney Dynasty, I have a love-hate relationship with this megalithic manufacturer of cultural expectations and disappointments. I could never relate to the Princess pack as a small child. But oh… how I longed to.

Everything is so simple in the Land of Disney. And my childhood could have used a dose of simple. But it never came… I never went to a prom (didn’t really have those in rural Canada), never wore a frilly dress, never got swept off my feet by a handsome prince. I’m less bitter than I am… perplexed. How is it that I actually have a sense of inadequacy because of this? Despite a University degree, a great career, loving husband, magical kids, comfortable lifestyle... How is it possible that I could still, as an intelligent woman, allow myself to feel this way, all on account of a company who’s mascot is a rather tiresome cartoon mouse?

When I think about Disney, I think about unattainable standards, narrowly defined roles, reinforced stereotypes, and generations destined for disappointment. I think about a boat that never rocks, an establishment never challenged. Sure, if you are in the 2% of the population who fits all the requirements to actually be a Disney Princess, I suppose they don't seem so evil. But as harmless as an entertainment company may seem, I believe Disney’s powerful reach extends right to the very heart of our culture. Moreover, I believe it is particularly devastating to a culture that seeks a wide circle of acceptance for neurodiversity.

So what does all this have to do with kids who are markedly different than the ‘norm’ you ask? Well, this thought process all began after I read a post on a discussion group a month or so ago. It was a mother desperately pleading for reasons why her life had gone so wrong, lamenting why she had been given an Autistic child instead of a ‘normal’ one. Her comments paraphrased: ‘I was supposed to be driving my kids to little league or Boy Scouts, instead I’m driving all over to therapy appointments. It wasn’t supposed to be this way.’

Now the problem for me as I read the post was two-fold. First, her child’s diagnosis was not new. It had been in place for several years, so it wasn't an initial raw reaction that was being shared. Second, her child was not far into the spectrum in terms of what is widely referred to as ‘severity’. So at first, I was internally quite indignant at her complaints that destiny had let her down. I wanted to give her a good shake and say this is your destiny! This child is a beautiful soul and you were meant to be his mother; this miracle we call life is about so much more than Little League or Boy Scouts!

And then I did that thing we moms sometimes get brave enough to do… I went to that sometimes dark corner of my spirit where I keep The Truth safely guarded. I opened my mind to how she was feeling, and while I cannot relate to her sentiments at this point in my journey… I allowed myself to understand the roots of her disappointment. And those roots are showing - in places like Disney Land. Now I’m no conspiracy theorist, and I’m not being literal in my blame of the Disney behemoth. But I am being real. Disney is the embodiment of a culture that promulgates standards of ‘normal’ and ‘perfect’ that are completely unattainable for that woman’s autistic child, a culture that so narrowly defined her role as “mother” based on Little League games and Boy Scout meetings, that set her up to envision a life that was based on someone else’s stereotype, and now – the inevitable result: lasting disappointment.

I emphasize lasting because I can’t really imagine any parent not feeling some measure of disappointment when they first receive news of a significant developmental diagnosis. It’s a very specific brand of ‘disappointment’, unique to parenthood. And if we are honest with ourselves, if I am brave enough to share a little of that Truth we all keep somewhere deep inside, I think we need to admit that it comes from expectations which have nothing to do with who our child is, and everything to do with who we envisioned they would be.

Despite our best intentions to love unconditionally from the moment of our child’s conception… we are products of a culture that values princesses and knights in shining armor, Mileys and Mouseketeers. And so, it becomes almost impossible to remain completely untouched by the Disney Effect. Disney, who takes the naturally sweet beauty of human diversity and, deeming it unpalatable, soaks it in artificial colours and flavours until everyone looks like the same brand of lollipop. I like Licorice Allsorts – where are all the Licorice Allsorts??? Would they hire an autistic Mouseketeer? Are stimming and perseverations welcome in the Mickey Mouse Clubhouse? Is Disney a cultural icon that I can imagine embracing and reflecting publicly my son’s neurodiversity? I think Porky Pigs will fly before we see that day.

And so having come to terms with my inner Truth about the cultural expectations I held for my son, and how they had everything to do with my own inadequacies as a mother, and nothing whatsoever to do with his as a child… I return to the mother who was drowning in a lake of lasting disappointments. Allowing that otherwise fleeting sense of disappointment to persevere, to persist, to fester? That’s not the kind of ride I want to spend my life on. That’s where I get off the perpetual merry-go-round of "what ifs" and "why me’s” and head straight for the roller coaster of acceptance, advocacy, passion, and peace.

And maybe, just maybe... if an obnoxious little cartoon rodent can net $35 Billion, then perhaps flying pigs are not such a lost cause after all.

Tuesday, March 29, 2011

Different Enough

I've got a new post up at HLW3B: thoughts on how Asperger's and SPD can be the best and worst of both worlds for kids. Expressed a little differently than usual... click here to read it.

Thursday, March 24, 2011

YES! Your child CAN go to camp!

If you are anything like me, you fluctuate wildly between over and underestimating what your child can handle at any given time. About 75%  of the time I land in the middle and get it just right: that razor-thin line where we are nudging them lovingly to their potential, neither expecting too much nor too little. When I achieve that fine balance, I get that warm fuzzy feeling that comes from really knowing and understanding my child's needs.

The other 25% of the time... well... it's the cold pricklies for pushing him too far too fast, or conversely, undervaluing his ability to tolerate change and growth.

One of the best examples of this fine balance, is the decision about camp. I live in a province in Canada, and we arguably have the highest percentage of campers in the world. Here, camp is a right of passage for children and youth. It's just what we do. And along with knowing how to swim, and knowing how to skate, this is one of the things I really felt was a necessity for my son to experience.

But he's only 7... so sending him away to camp just isn't something I'm comfortable with yet. That doesn't mean we've abandoned camp at this age though, it just means we've looked around at our options and for us, camp right now means day camp at the local museum. Simon loves the museum and has been there so many times throughout his childhood that he feels really comfortable there. In addition, when I discussed Simon's specific Aspergers and SPD needs, they felt confident in their ability to provide a great experience for him, since they have been working under an inclusion policy for years.

When I was first debating whether Simon was ready for a 'mainstream' daycamp, I was genuinely torn. But this year will be his second year of Spring and Summer break day camps there, and he's starting to feel like a seasoned pro.

Spring Break for us starts on Monday, and Simon will head off for a week of exploring dinosaurs, tall ships, local history, and the ancient sea that once teemed with life where our city now sits. Along the way he'll stumble over social misunderstandings, and unearth new friendships. Each day he will be inching his way closer to more and more independence, and more exciting camp experiences in his future.

In honour of Simon's upcoming Spring Break camp, I'm sharing an article from this month's Autism Aspergers Digest magazine that will help parents start thinking and making decisions about camp. If you think there's even a chance that you might want your child to attend some kind of camp this summer, now is the time to start planning as camps fill up fast. And if you're considering a subscription to Autism Aspergers Digest, now is the time (to celebrate Autism Awareness Month they're offering 50% off your second year when you subscribe for 2 years - www.autismdigest.com). Here's the article:

Summer Camp & Spectrum Kids: Let’s Create Fun!
Excerpted from the article, “Going Off to Camp: Information and Encouragement for Parents” that appears in the March/April 2011 issue of Autism Asperger’s Digest magazine. Reprinted with permission.
Spring has yet to arrive, so why are we talking about summer camp for kids with ASD? Because you’ll need plenty of time to find a camp and then prepare your child for this important experience. But also because camps are already accepting applications and time is running out.

Whether you’ve made the decision to send your child with autism or Asperger’s to summer camp, or you’re still unsure – possibly torn between pros, cons, or where to begin – this article will help you through the process. Four camp directors shared their expertise, several parents offered advice from their camp experience, and all that information is combined here to give you tips and information to ensure a successful camp experience.

Before You Begin…

Consider these tips from the parents and camp directors to get you started:

• Know what you want; determine your goals. Many parents use summer camp primarily as an opportunity for their child to be away from home, socialize and build self-confidence. Others have a more specific goal, such as a therapeutic environment, academics, or a camp specializing in sports, arts, computers and other interests.

• Perform an honest assessment. Decide whether you and your child are ready for camp. This step is just as – and sometimes more – difficult for parents.

• Gather information. If you’re having a hard time making a decision, finish reading this article, target a few camps you like and talk to the camp directors. This will give you a sense about whether that camp is a good fit and the directors will help you work through concerns to make a decision.

• Prepare a list of questions. Don’t count on remembering everything you want to ask the camp director. Make a very thorough list covering every concern.

What to Look For in a Camp

You can count on this advice because it comes straight from experienced professionals managing camps for kids on the spectrum. Sylvia Van Meerton (Dragonfly Forest), Linda Tatsapaugh (Talisman Camps), Debbie Sasson (Camp Akeela), and Elsa Berndt (Camp Lakey Gap) generously offered some great information about what to look for in a summer camp. The parents added 100% agreement with these recommendations:

1. Size of camp. Most camps specializing in ASD have fewer campers at each session, however you may also want to ask about size as it relates to how many campers bunk together or the number of kids in group activities.

2. Ratio of campers to counselors. Special needs camps typically have ratios of 1:1 to 1:4 compared to regular camps that have 1:20+. Is there enough staff to allow individual attention to campers whenever necessary

3. Accreditation. Is the camp accredited by the American Camp Association? This is a good indicator of overall quality.

4. References. Will they put you in touch with another parent whose spectrum child has attended the camp?

5. Application form. This should be extensive so parents provide comprehensive information. This allows staff to get to know the family and the child - what causes meltdowns, fears, when to give cues or warnings. It also builds parents’ confidence in the camp’s ability to manage their child.

6. Staff training and background. How much autism-specific training is provided? By whom? This is a deal breaker because you must be confident that camp counselors understand autism and how to manage each child’s needs. At Camp Lakey Gap, counselors receive two weeks of training provided by experts from TEACCH and the Autism Society of America, and they interact with local special needs kids for experience.

7. Communication. Are phone calls from parents welcome? Do staff members regularly call home? Can parents talk to their child? Some camps find that conversations between campers and parents seldom help homesickness; other camps leave it to the parents’ discretion. This is another reason why it’s important for parents to trust the camp staff. Also ask if they do anything to facilitate ongoing communication between campers throughout the year. Camp Akeela fosters a sense of community through newsletters containing updates about individual campers all year long.

8. Homesickness. How do they deal with homesickness? At Talisman Camps, they encourage the children to write home, expressing how homesick they are. One mother said she was worried when she received a letter saying, “I hate camp. I’m 100% homesick.” But with each subsequent letter, her child’s rating of how homesick he was improved, creating a great visual tool for both parents and campers to see how well they were adjusting.

9. Medical personnel. Who oversees medication management? Do they have a nurse available 24/7? What are their procedures in case of an emergency?

10. Autism support. What specific supports do they provide? For example, at Dragonfly Forest, counselors use a whiteboard at each activity to prepare the kids by writing down the rules, what will happen, and what to say if they need a break. The counselors also carry a backpack with schedules, timers, paper/pen and a common high interest and/or soothing activity.

11. Behavior management. How do they manage difficult behaviors? What happens when a child has a meltdown? Ask how they’ll deal with specific challenges faced by your child. When do they call parents?

12. Daily schedule. What is a typical daily plan? Is it tailored for the child’s interests and needs? Is it flexible? Look for a structure that allows children to do activities at their own pace rather than being forced to keep up with the group.

13. Breaks and downtime. How do they allow for breaks? Are they built into the schedule? Do they have a quiet place or sensory room? Are procedures in place to allow a child to opt-out of an activity when needed? Do they teach campers how to express the need to opt-out?

14. Activities. Does the camp offer something your child will be interested in? Are there enough choices and different types of activities? In addition to summer activities like swimming and hiking, are there other less typical choices like cooking or wood shop?

15. Special diets. Can the kitchen accommodate your child’s special dietary needs? Who will monitor the child’s diet if he can’t/doesn’t himself?

16. Overall environment. This includes the physical and philosophical environment. Does the camp fit your child’s unique needs? What is their overall approach for dealing with autism?
__________________________________________________
Note: the article also includes sections on “How to Prepare for Camp” and “Anticipate the Unexpected.” Three additional strategy-packed articles are available to AADigest subscribers, in their Read More Online section of the website:

1. Decisions! Decisions! Questions to Guide You in Making a Camp Choice.

Many pieces of information must be collected and considered when you’re thinking about sending your child with autism/Asperger’s to camp. Let this printable list guide the process and help keep you organized!

2. Stumbling Blocks: Special Considerations for Special Needs Campers

Our Decisions! Decisions! list is a great cheat-sheet to print out and use as a guide. But some special considerations are likely to present a bigger stumbling block than others. We discuss distance to camp, dietary accommodations, neurotypical versus a special needs camp (with tips for each), and financial considerations (includes ideas for making camp happen no matter what the family’s financial status).

3. Words of Wisdom: From Parents and a Sibling About the Camp Experience
_________________________________________________
Copyright © Autism Asperger’s Digest. 2011. All Rights Reserved.


Distribution via print or electronic means prohibited without written permission of publisher.

Tuesday, March 15, 2011

The Atypical Learners Conference

I received an email recently from an organizer of The Atypical Learners Conference, asking me to share the following information with you. A link to the conference website can be found at the end of this post:

"The Focus Foundation is a nonprofit organization dedicated to helping kids with X and Y Chromosome disorders, dyslexia, dyspraxia and other conditions that lead to language-based disabilities, motor planning deficits, reading dysfunction and attention and behavioral disorders.

We are holding a conference in Annapolis, MD this April 8-10, 2011. We will be discussing a disorder that occurs in 1 out of every 500 school children and focus on finding an explanation for children with learning disorders and developmental delays. Based on 20 years of experience in working with children we have found that there is treatment for many of these disorders both medically and developmentally and we will cover much of this in our conference.

Our conference will feature such speakers as Pete Wright, Esquire- author and attorney for children with special education needs. Pete is a nationally recognized speaker on this subject and has a lot of knowledge to offer. We will also have Carol Stock Kranowitz, author of several books and publications including "The Out-of-Sync Child" books. (You can see our other speakers on our announcement/registration page)

Throughout this event we hope to focus on providing families with the knowledge and skills to advocate effectively with school personnel for their children, causes for some children with learning disabilities and strategies for targeted treatment and recovery. A full announcement and conference registration are available here."

Friday, March 11, 2011

Don't Fix What's Broken


Yes, you read that right. Don’t fix what’s broken. I decided to look back at what I was writing about one year ago in March of 2010, and at that time I had just read a hilarious article by Paul Baswick in which he makes the case for why he, as a husband and father, wisely chooses to NOT fix what’s broken in his house. A truly insightful man! I used that as the inspiration for my special needs parents’ Top 10 Things to Not Fix - and I'm sharing them with you again as we head into spring 2011:

1. The paint colour – or any other ‘keeping up with the Joneses’ home renos. Priorities people! Unless it’s affecting your mood or making your life difficult, leave your house alone and unsubscribe from HGTV and TLC. Besides, chances are your kids HATE changes and love consistency – right down to the colour of your paint!

2. The lightbulbs – florescents may be ecofriendly but they are not SPD friendly.

3. Your kid’s picky eating habits. This is one to embrace if your child has sensory issues or is on the spectrum. Of course this doesn’t apply in extreme cases where your child is at risk of malnutrition, but if your pediatrician is happy with your child’s growth and diet, then let this one go. I have spent countless hours fretting about and trying to fix what Simon is or is not eating, but his pediatrician always reassures me with a few simple rules for good nutrition: is he routinely getting a green or yellow/orange vegetable, a protein, calcium, and a healthy fat? That can translate into is a diet as simple as sugar snap peas or sweet potato fries, a burger or chicken nuggets (lots of healthy brands nowadays), chocolate milk/rice milk, and some olive or flaxseed or fish oil hidden in his meals or taken with his vitamins. And yes, even if he eats that every day, you are OK. If you can answer yes to those, and your pediatrician is happy with your child’s diet and growth, then don’t fix it because it isn’t really broken. Sure variety is the spice of life but it’s not worth wasting your life to attain.

4. The McDonald’s deep fryer. As far as Simon knew, it was pretty much perpetually “broken”. This is because with the exception of peanut butter, the only protein Simon would eat until last year was McDonald’s burgers and chicken nuggets. So once a week I let him have a burger AND nuggets, but no fries. “Why mama?”, “Because the French fry machine is broken honey”. It worked beautifully until the day the kid at the counter responded cheerily with “No it’s not”. “YES, it is” I replied, but despite me winking at him like a cougar (am I old enough to qualify as a cougar?) he did not catch on to my scheme and responded insistently “No, really, it’s working fine… see?” And he proceeded to walk over to the vat of fries and show Simon that Mama was indeed lying through her teeth. I do not regret this lie as I figure I saved his arteries a zillion grams of trans fat. So if your child is still gullible enough to fall for this one, keep the fry machine on the fritz.

5. Your child’s shoes. Laces are soooo 1950. Come on! This North American obsession with the tying of shoes being a ‘developmental milestone’ is completely outdated and ludicrous. Spare yourself the stress and buy Velcro. Once they are too old for Velcro, use bungee laces. Fine motor skills can be developed in ways that don’t make you late for every appointment and arriving in tears.

6. Your child’s handwriting. Let’s face it: as much as I would love to live in a Jane Austen world of letters and journals written with lacey feathers at high tea, our kids are more likely to be flying around with personal jet packs than they are to be judged ‘in the real world’ by their handwriting. Working on fine motor skills is good, shedding tears or losing marks because of handwriting is NOT.

7. Your child’s quirks – don’t correct them, CELEBRATE THEM!!! Truly they are a gift to the Universe of diversity and tolerance.

8. Your housekeeping – North Americans have an obsession with ‘clean’ while we busily pollute the environment with unnecesary chemicals. Keep the house tidy-ish and sanitary, and use all that extra time to enjoy a more meaningful activity than swiffering with your family!

9. Your relatives’ opinions. Give them the information they need to be patient and understanding with your child, but don’t stress out if some of them just don’t ‘get’ it. You can’t force them to understand and you don't need to own their ignorance, so learn to let go of your need for their approval.

10. Your Self. Remember that you are no more a broken person than your child is. They love you and are doing their best, and you love them and are doing your best. This is the human condition, and we are here to learn from the journey. Most parents tend to be self-critical and guilty about their child rearing skills, but I think that is ten-fold for those of us with high-needs kids. Don’t judge yourself or be impatient with yourself. Hold your head up high, take a deep breath, and love yourself first.

Friday, February 25, 2011

Planning a Simple Sensory Garden for All 8 Senses

I recently guest posted at HLW3B about the benefits and joys of a creating a simple sensory garden with your children. Whether it's a backyard in ground, raised bed, or even just a handful of containers on a patio, this plan adapts to all lifestyles. You can check it out here.

Tuesday, February 22, 2011

The Oprah Issue: Her Mistake, and Ours

You may - or may not - have heard that Oprah recently dedicated an entire episode to the story of a "7 Year Old Boy Who Tried to Kill His Mother". Yes that's the actual title. The boy's name is Zach.

In the clips advertising the show they mentioned "Sensory Integration Disorder" - the old term for SPD, so I set my tv recorder to record the episode. I was really surprised by two things: first, that a child with SPD was trying to kill their parent, and secondly, that they were featuring SPD on Oprah - since there has been a campaign to make this happen for some time now, and I was sure we would have heard something from the professional organizations or SPD groups if they were aware of it.

Well, the first problem is that - they weren't aware of it. At least it doesn't appear, at this point, that Oprah's producers made any attempt to contact or feature any of the prominent SPD experts. The second problem, is that the version that aired - all across the world - appears to have been edited in such a way that there is a total absence of quality, accurate information on SPD (or any other of the disorders affecting this child) and in a way that specifically leads viewers to believe SPD is a mental illness, and to associate SPD with violent, potentially murderous behaviours. Clearly this is not an accurate depiction of the behaviours associated with SPD.

It IS an accurate depiction of behaviours associated with serious mental illnesses, such as bipolar or schitzophrenia. Later in the show (much later) Oprah mentioned - almost in passing - that Zach has been diagnosed with various mental illnesses, none of them named on air, but bipolar is named in the online Oprah article.

There has been a flurry of discussion in the SPD online community about this episode of Oprah. Lots of good discussion. But there has also been... a tone. A distinct tone in many of the comments I've read on Facebook pages and blogs, that is making me uneasy. It's a tone I completely understand and recognize as second nature for many - but it is a tone that I think we need to explore and challenge in our role as advocates for children.

It's this tone: "MY child isn't like THAT child"... "MY child doesn't have a MENTAL ILLNESS".

For those of us who's kids have labels, but not one that falls into the category of mental illness, we fear the stigma of mental illness, because it casts such a dark shadow. Much darker, we likely feel, than the ones our kids' labels carry. They don't make movies about OUR kids killing people in psychotic rampages. They don't lock OUR kids up for unspeakable crimes. While we may never say it, the implication here is that our kids are better than that.

In the neurodiversity community, there has been much talk about the need to eliminate the sense of an autistic hierarchy - where those who are non-verbal and score low on IQ tests, are viewed automatically as less than those who are verbal and have average or above average IQ scores. In your own life - have you not felt the inherent awareness that others are viewing your child as less than his or her peers, when your child's behaviour is so different and misunderstood? Many of us have had our SPD kids accused of aggresive or violent behaviours when they hug someone too tightly, tackle another child, or grab someone's neck - not recognizing how much force they are using because their neurons are not sending the right signals to their brain.

I think there is a temptation for us to distance ourselves - and our kids - from the dreaded world of mental illness, because we are tired of our kids being the less thans, and without really recognizing it, we are elevating them above another group of less thans. Similarly, it irks many of us (me included) that Autism (and possibly SPD in the future) have to be placed into a diagnostic manual for "mental disorders" given that neither really ARE mental disorders. But if we are honest with ourselves, we're not irked because it's inaccurate so much as we are a bit ashamed to share a book with the crazy people.

But we shouldn't delude ourselves: ignorance is ignorance. Prejudice is prejudice. Someone who stigmatizes a child with a mental illness out of ignorance about their condition, is just as likely to stigmatize your child out of ignorance about theirs. Prejudice does not discriminate between disorders, it merely discriminates against them all.

Distancing ourselves from the stigma of one disorder (mental illness) does NOTHING to address the pervasion of stigma in the first place - and ALL of our kids are suffering from that pervasion of stigma. It touches everyone who is perceived as "different", and who's behaviours and conditions are misunderstood due to a lack of compassion and awareness.

Which takes me back to Oprah. I view this regrettable episode as one giant missed opportunity. An opportunity to spread awareness about so much more than one beautiful little boy who grabbed a knife in his mother's kitchen - so much more than a sensational headline. This was a missed opportunity to share accurate information. To encourage awareness and compassion for kids who bear the burden of heavy labels, whether it's SPD, Autism, Bipolar, Schitzophrenia, or any other widely misunderstood diagnosis.

The bottom line is that we're all in this together, regardless of the label we wear. If the goal is to destroy the menace of stigma, then we will only be successful when all of our children shed the weight of it. And we will only get there by resisting the temptation to finally be a better than.

Wednesday, February 16, 2011

More Human Than I: An Evening with Liane Holliday Willey Part 2


A few weeks ago I shared the details of a seminar I attended with renowned Asperger self-advocate and speaker, Liane Holliday Willey. From a practical perspective, it was jam-packed with phenomenal insights into life as a child, and now as a mother to a child, with Aspergers. But something happened in the seminar that had nothing whatsoever to do with the practical. It was an insight into what, despite the often exhausting and heart breaking challenges, makes Autism beautiful.

Let's begin in the middle: because it was in the middle of the seminar that Liane began to speak about the foundation her father (who also had Aspergers) laid for her from early childhood. What happened at this point in the seminar solidified my long-standing belief that one of the core assumptions about Autism is entirely backward. That being the assuption that Autistic people don't feel as much as we do. That they don't connect, don't empathize, don't experience emotions to the extent the rest of us do.

It was the point in the presentation where Liane began speaking about her father, who recently passed away. In Part 1, I shared how Liane's father had been her everything, the one and only person on the planet who truly understood her. So powerful was their bond, that she feels she may not have been able to go on living after his death, if she had not had children of her own to consider. Her sorrow was that profound.

I think most of us with kids on the spectrum have seen glimpses of that kind of profound sorrow and sensitivity in our own children. That ability to go to a very dark and distant place, very quickly. Liane expressed something I have sensed about my son often, but never really knew how to specifically identify: she said that autistics don't become emotionally close to very many people, but when they do choose to be close to you - they do it with their whole heart, their entire being, with complete abandon.

So when that person leaves or is lost, the pain is magnified immensely - to almost unbearable levels. It is for this reason that she emphasized the need for a parent to ensure they are not the only person in the world who understands and adores their autistic child. Share that love, intentionally, among others who you trust to be close to your child. Don't give up until you've created multiple, lasting, very close emotional relationships for your child with another family member, caregiver or mentor.

After sharing this with us, she tried to speak about him without losing her composure, and the room fell silent - out of somber respect yes, but moreso - we were all in a kind of neurotypical trance. It was something I will never forget - because it was possibly the most moving, and completely guileless display of human emotion I have ever seen. It was something so organic, I'm honestly not sure a neurotypical would even be capable of it. Because regardless of the depths of our own emotions, they are always shared in an emotionally charged environment - one which recognizes and responds (even subconsciously) to the perspectives, interpretations, and presence of others. We can never quite liberate ourselves from that awareness of others and how they are receiving us, so even our best attempts to be genuine are shackled by it.

Liane's was not.

As she spoke of her father, it was clear she had not anticipated becomming upset. Upset in that hallmark autistic way: raw, bare emotion. She began to crumple, physically, as she described how her Aspie daughter was the person who saw her dad fall and heard the crack of his head against cement, and was the person with him for his final words. I don't think she even intended to share these painful details with us - they were just streaming through her. We felt a lifetime of invisible memories flood the room - and we were all awash in them, unspoken though they were. Her pain was child-like in its disgregard for the presence and comfort of others. And because of that, it was pure. It was, in a heart-breaking way, almost magical to watch.

And this brings me to why Liane's seminar was transformative for me: no matter how firmly I believe my son is whole and perfect in his own right, no matter how much I write about my distaste for curative approaches to Autism - there is no escaping the fact that all conversations about Autism are underpinned by an unspoken assumption that they need to be more like us. That somehow - though it may never be openly discussed in these terms - somehow their humanity is incomplete, along with their neurology. This 'sub-human' concept has fallen like a shadow onto all groups of differently-abled people throughout history. Those with visible disabilities have begun to emerge from that shadow, but those with invisible ones still often find themselves there.

But the experience in Liane's seminar shatters that misconception. And it begs the question of neurotypicals: Are we closer to our own humanity at the moment of our birth, than we are in our adulthood? I have long since lost my connection to raw emotion, a connection I am certain I had in my youth. I am far too concerned with appearances and the judgements of others to ever lay myself bare the way that she did. But which of those 'ways of being' is closer to the heart of what it is to be Human?

The naked, awkward way in which Liane allowed herself to be overcome as she spoke about her profound love for her father - it was fundamentally autistic. And when I think about what fundamentally makes us human... I wonder. I wonder if the 36 years I've spent building up my neurotypical armour has, in effect, shielded me from what it really means to be human.

What I know, is that in that moment where I was pulled along with a room full of strangers into Liane's naked pain - in that moment I felt keenly... that she was more human than I.

Friday, February 4, 2011