Help! I've fallen and I can't get up!

"Falling down is part of life, getting back up is living.

 Even the Sun falls down everyday but gets back up the next morning." ~ Unknown

Here is a visual question I gave Adam back in 2001, when he was 11 years old and just starting to tell us his thoughts through his drawing:

Translated to traditional language, I guess it would be: "What will the man do now that his hat has fallen off his head and over a cliff?" (a classic cartoon set-up). Does the man value the hat? Will he take a risk to retrieve it? or will he turn his back, curse his luck and buy another?

In Adam's visual "answer", the man decides to take a risk and go after his hat. Did he slip while reaching? Did he not think it through and just jump? I don't know, but he does seem a bit surprised by the outcome.

As luck would have it, he manages to grab the small stick protruding from the cliff. Whew! Sometimes in life, a bit of luck and quick reflexes allow us to save ourselves from rash choices or bad circumstances. I love how pleased (and unsurprised) the little guy is with this turn of events.

But of course, this is life and one fall can often be followed by another (especially when the author of your life story has a sense of humour like Adam's). The stick breaks and the little person is once again plummeting down the side of the cliff, wearing another expression of surprise at the hand life has dealt him.

And sooner or later, in real life or cartoon life, we have to hit bottom. Going by the man's face, this was a hard landing (one that would have you sitting on a donut pillow for at least a week or so).


We all fall down. Sometimes we fall multiple times without rising in-between - we can fall far and hit bottom very hard. We get the wind knocked out of us figuratively and literally. We may say to ourselves "I don't know how to recover from this one, it's too big, it's too hard, it's one too many, I can't get up". So we lay there for a while ... but then what?

In Adam's story, the man simply takes a breath, retrieves his hat (which he had the good luck to fall beside, rather than on), dusts it off, puts it on his head, stands up and walks on.

The drawn end of this story is very interesting to me in light of who Adam has revealed himself to be over the past 13 years since he drew this story. He is a person who faces many challenges every day, including communication disconnects, sensory overload, debilitating allergies and medical conditions ( click here for a piece of the medical back story ). I have seen him laid low time and again, and time and again I have seen him stand up, pick up his figurative hat, and walk forward. He doesn't get angry, he doesn't do "poor me", he just gets up and goes on.



Here's some advice that I give to the kids and families I work with (and that I follow myself when I'm having a "smart day"):

When you've fallen and you don't think you can get up, consider your alternatives: staying where you are is not usually a good one, and if you're as low as you can go almost any choice or action could potentially put you in a better spot.

So take action. Do something. It's a strategy I use when I clean up a particularly large mess (I hate housework): if I think about it too hard, I'm frozen into inaction ("this mess is too big", "no one could clean this up", "we just have to move"). So instead, I go "round and round" doing something: "this coat doesn't belong in the sink, I'll hang it up", "no one needs 4 hockey sticks in the living room, so I'll put 3 in the garage", "why is there a live turtle in the dining room? don't think, just put it back in the pond" (I have 3 boys and a small house, we have had some memorable messes). As each bit of mess goes away, the overall picture changes and new ideas and solutions present themselves ("oh look, the broom was buried under the dirty laundry! the perfect tool for sweeping the baking soda & vinegar science project volcano eruption off the ceiling!"). Before you know it, you step back and realize that this problem might be fixable after all.

When you fall down, don't just lie there .. do something. Take one small step and then another. No matter the problems or circumstances, action feels better than inaction, and each action plants seeds that can change things for the better.

Postscript (courtesy of my good friend Bernadette who recently sent this video my way)

A final musical word from the late great Pete Seeger - as I tackle problems big and small, this song (one of my favourites) reminds me that things usually work out better when I manage to put aside my worries, take action, plant the seeds and see what happens:

 

 

Inch by inch, row by row,
Gonna make this garden grow.
Gonna mulch it deep and low,
Gonna make it fertile ground.
Inch by inch, row by row,
Please bless these seeds I sow.
Please keep them safe below
'Til the rain comes tumbling down.

Live Squirrels in the Bedroom (the fine line between coping & losing it completely)

We've all had those times in our lives ... a lot is happening both good and bad, crises are coming up but we're managing, maybe we're even bold or foolhardy enough to congratulate ourselves that where lesser mortals might fall down we're still standing and maybe even winning ... and then that one extra thing happens that tips it all over the edge ...



 

For me, it was a "scritch scritch" window screen sound on a morning when I finally thought I might be getting ahead of the stream of crises that seem to define my work-life every fall. I got up from my computer, strolled down the hallway, opened my bedroom door, did a double-take, screamed, slammed the door and let out a few "star words" (you know, the kind you put ** into when you write them in a public forum) ... there was a squirrel, a cute little red squirrel (think Beatrix Potter), on the INSIDE of my bedroom window screen, running up and down my curtains.

My personal life experience (which I won't go into here since it involves a series of improbable tales that are frequently Monty Python-esque) actually includes more than one other story where a live squirrel has ended up inside our house, so I did possess the tools (live traps) and experience to meet the challenge. But when this particular rodent decided to make itself at home in my bedroom curtains, I didn't react calmly or heroically ... instead, I dissolved into a moment of pure panic and meltdown (as I'm writing this now, I'm really hoping that none of my neighbours were near enough to hear the ** words that came out quickly, colourfully and at a pretty good volume) ... and I was hit with the sudden realization (think cartoon hammer bonk to the head) that I was not coping with all the change and constant crisis nearly as well as I thought I was.

Long story short: I pulled myself back together, set a trap, left the house to go to work, found solutions for a couple more crises, came home and (mercifully) found a small peanut-butter covered squirrel in the trap (and squirrel poop on my bed). In my younger years, this wouldn't have worn me out ... in my older (saner?) years, I was surprised at how much it knocked me back (I think I said "I'm getting too old for this star word").

Still, good story (especially in the longer version with more detailed descriptions of the squirrel's moves and my counter-moves), so when I went to see Adam and his family the next day, I was looking forward to entertaining them with it.


Only to have my story totally overshadowed by what had happened at Adam's house the previous day ... while I was chasing a squirrel, Beth (Adam's mom) was putting out a fire (a real one, in her kitchen, by herself ... she's so competitive).

Let me explain:

Adam is extremely particular about his food. He has a very limited diet, and will not eat any alternatives if his particular brand of a certain "approved" food is not available. Before lunch, Beth (his mom) discovered that they were out of his apple juice, so off to the store, which as luck would have it was out of his brand of juice that day. Quick trip home to drop off the groceries they had bought, with Beth's mind only on whether Adam could tolerate yet another unplanned trip to a second store to get the apple juice (needed for him to have the lunch he expected). Second store had the juice, Adam managed the trip, and the single thought in Beth's mind as they got to their front door was helping Adam keep his balance by getting him his lunch as quickly as possible.

For those of you who have autism in the family, that series of events won't sound unfamiliar. Each person on the spectrum has things that they can and can't tolerate, and the consequences of taking a person with autism over the edge of what they can manage are often severe. When you live this way for many years, your priorities shift, with almost everything taking a back seat to helping the ASD person maintain their equilibrium ... which explains the series of events that happened next:

When they opened the front door, there was smoke coming from the kitchen. In situations like this, the human mind goes on auto-pilot. As Beth's mind quickly and automatically sifted through the list of priorities, getting Adam back on track (by making him lunch) still hit the top. She told Adam not to worry, left him at the door and ran in to find that a stove burner on low had started a grocery box on fire.

So what did she do? Scream? Cry? Run out? No .. in Adam's words (see below) she "cleaned the kitchen" .. no hysterics, no fuss, just coolly and calmly put out the fire.

 

And even at this point, the fire didn't reach the top of the priority/panic list, other than as an obstacle to cooking Adam his lunch.

 

The fire was not the tipping point, but the fact that the microwave and stove were now unusable could have been. Why? Because Adam has a narrow definition of what makes an acceptable lunch and all of the menu options require cooking. Fortunately for everyone, Adam decided that when your stove catches fire, toast is allowed for lunch - he ate at the kitchen counter and Beth cleaned up the rest of the fire mess (without the luxury of pitching a fit like I did when I first saw the squirrel).

 

 

Story the third (don't worry, it all ties together!):

 

 

 

A few nights ago, I had a vivid dream about a zombie apocalypse. The zombie mayhem happened at a cocktail party, so prior to the attack I had been looking pretty spiffy. I had a "worst case scenario" outcome I guess, because my next conscious moment was rising from the dead as an undead zombie. My first thought was "hey, this isn't as bad as I feared it might be", followed quickly by "yay, what luck, I managed to keep hold of my sparkly bedazzled evening purse!" As my fellow undead and I gathered on the dance floor, I was extremely popular because my evening purse turned out to be full of lip gloss (tubes and tubes of it) which I shared around after realizing that getting a cold sore wasn't a problem anymore (and zombie lips really do need a little colour).

 

Then I spotted my husband John, who had escaped becoming undead. For some reason he seemed terrified of me. Wanting to reassure him that I was okay and that being a zombie wasn't as bad as everyone had made out, I demonstrated to him (with giant scissors that suddenly appeared in my hand) how I could easily trim off damaged and decomposing body parts because my new body was like a plastic doll. I woke up with a strong feeling of surprise because it was obvious that my demo was not calming John down.

 

While a mental health professional might have something to say about the underlying mix of thoughts and experiences that would cough up a night-time story of this nature, it was actually a very happy dream for me: the worst happened, I was changed but not defeated, and I even found a way to bring a little joy and colour back to the party. Win, win, win!

 

 

Life has a habit of throwing surprises at us, and not all of them are positive or easy to deal with. When our lives include people on the autism spectrum, we have the extra challenge of supporting and shielding a person who doesn't do well with unexpected events, and it's easy to get into a state where your mental "panic button" is always partially engaged.

 

My best suggestion is to embrace the craziness of life rather than fighting it. Find the humour, celebrate the absurd, and collect friends who do the same. When you tip over the edge, lie there for a minute, use some "star words", then get up and jump right back into the zombie apocalypse party.

 

 

 

  

 

... and if you're looking for me and my "crew", I'll be the one wearing bright red lip gloss and holding a sparkly purse with a squirrel in it, my girl Beth will be wearing a determined expression and toting a fire extinguisher, and my friend Adam will be smiling and thoroughly enjoying the ghoulish ambience (because monsters and zombies and all things "Halloweeny" have always been his favourite)

 

 

 

 

Through the Eyes of Autism - part 4

 

How many little kids are "too many little kids"? What follows is a story of autism and spring-time, love, respect, understanding, and family ties.

 

 

 

 

To understand the events of this story, you first need to know that spring is a very difficult time for Adam. He has allergies to multiple substances that appear as soon as the snow starts to melt. He suffers traditional allergic reactions (sniffling, sneezing, congestion), but also experiences multiple sensory and cognitive changes in the spring-time months. His sensory hyper-sensitivities increase, his ability to process language and new information drops, and his tolerance for dealing with the challenges of everyday life out in the world is sharply reduced.

 

For more background details, take a look at this previous blog post:

Seasonal Allergies and Autism - April 2011

Here's the story: 

A couple of weeks ago, in the middle of the spring-time melt in Ottawa, Adam's sister Laura and her boyfriend Ryan took Adam out for a "fun" afternoon. Adam loves McDonald's, and on previous outings, starting off with lunch at McD's had worked out really well .... but not that day.

I have written previously about Adam's views on "babies" - a category that includes "little kids" (see blog post: ... of babies and monsters for more details). They are too short, too loud, too active and too unpredictable for Adam to feel comfortable and safe when they're around.

They get to McDonald's ... the moment Adam entered with his sister and her boyfriend, they all realized there was a problem. The restaurant was full of little kids. They were loud, they were active, they were everywhere. Laura and Ryan did what they could - helped Adam find a table that was less chaotic, tag-teamed at the counter to order the food - and Adam did what he could, distracting himself with his iPad. They managed McDonald's, but it cost all of them energy and sanity.

Adam entered the book store (next on the "fun" afternoon agenda) with few reserves left. What had been envisioned as a long relaxed browse through one of Adam's favourite stores instead became a "dash, grab, buy & leave" mission. Laura and Ryan understood this and were totally prepared to go with Adam's altered agenda.

And then they got to the cash ...

Problem ...

 

 

Laura had forgotten her wallet, and Ryan didn't have any cash either .... Adam was on the ropes, but he held it together.

 

Thinking quickly, Ryan suggested that he could go next door to Walmart and get some cash with his bank card:

 

 

 

When Ryan and Laura were relating this story (post-trip) to Adam's parents, they described their state of high panic in these moments, knowing that Adam was feeling stressed and very close to the edge of what he could manage - they had tried to present a calm exterior, and were hopeful they had not broadcast their distress to Adam. But look at Adam's drawings, the facial expressions, the hand-waving .... he knew their emotional state, he absorbed it, dealt with it and later drew it quite accurately ....

 

Fortunately, the story has a happy ending:

 

 

Ryan was able to get some cash (and chips) at Walmart. Laura and Adam waited in the car (the chips and iPad helped Adam to stay calm) while Ryan ran back to the book store, paid for the items Adam had picked out and brought them to the car. Then they drove home and all separately collapsed.

 

Whew! Triple whew! (one for each of them)

I said at the beginning that this was a story of love, respect, understanding and family ties.

From the earliest days, when Adam was a small, non-verbal, incredibly complex, medically fragile boy, his family has always treated him with respect - seeing him as intelligent with his own view-point and perspective, following at times the faintest of clues to figure out what he needed and wanted, paying attention to his reactions to decide what was tolerable and what was not, giving him choices and power over the direction of his own life, apologizing if they accidentally took him over the edge. As a result, Adam has developed a cool confidence - confidence that he will be heard, that "his people" won't intentionally ask him to do things that are beyond his ability or desire to manage, and that they will understand and help him out when the world coughs up situations that are not reasonable.

Great story, great kid, great family.

Love (and true liking), respect and understanding are the best gifts that families can give to their ASD relatives ... when the world gets tough, it helps to know your family has your back

P.S ... oh, and humour, the story is about humour .... finding comedy in the chaos .... the picture of "there are too many little kids at McDonald's" took over an hour to draw, with Adam periodically pausing, sitting back, reconsidering and adding more and more kids to the picture .... Adam's mom and I were laughing (so hard I had tears in my eyes) and Adam was looking at us sideways and smiling and drawing more kids .... then Adam's dad came in, saw the picture and burst out laughing too .... and when that picture was done, it was scanned and immediately sent out via e-mail for Laura and Ryan to enjoy ... humour is the other key tie that binds this family together ...




note: the concept of ASD individuals having a finite amount of energy to spend daily is well-put by Karla, an ASD adult who is an advocate and a mentor for others on the spectrum (click the link for more information on her "Token Theory"):
Karla's ASD Page - Token Theory

What's it all about?

Life is short. I know that ... and sometimes life is too short and people leave before we're ready to say good-bye to them, before they've done all the things that they hoped to do.

A friend died this week. Too young ... my age, in fact pretty much exactly my age (we used to joke that we were "litter mates", born in the same month, same year). I met him almost 25 years ago when we both worked at a school educating teens and young adults with autism. A good man with a wicked grin and a kind heart.

His loss leaves a big hole in the local autism community, and a far bigger hole in the hearts of the friends and family who loved him.

And today I'm once again thinking about how short life is ...

... my daughter died of cancer when I was 29 and she was almost 3. I couldn't make sense of it, couldn't see how to go on past that point. All of the things that had seemed so important - employment, income, professional standing - were blown to dust in this new shockingly clearer view of life and death. My only regrets were the times that I had let my fears and worries stop me from fully living, loving and laughing in the moments I had with her.

My work with individuals on the autism spectrum came after this point. When I deal with an ASD individual and their family, my primary goal is always to maximize the enjoyment of the present moment - it doesn't matter that things are not perfect, they rarely are, and really (as I frequently tell my students) perfect is a bit boring. There's always something that's going right, something that's funny and endearing and quirky. It's not naive or silly to focus on the positive, it's essential to helping people blossom and reach their potential. And you just don't know how long you have.

And so with this in mind, and in honour of my friend Roc, here's a cartoon drawn by Adam a few years ago featuring a baby and a skeleton (I think Roc would appreciate the humour):

Live your life fully with an open heart, laugh until you snort tea out your nose, let tears fall when they want to and leave your legacy written in people who count themselves better for having known you.