The gift of free time

"Kids need time to be bored; that is how creativity is born" - Melanie Jean Juneau 

When I was a child, summer was my favourite time of year. I would wake up each morning knowing that the day was mine, that anything could happen, and that as long as I showed up relatively unscathed at mealtimes my mother would ask very few questions about how I was spending my time. My brothers and sisters and I explored, created, imagined, read, and ran free. Summertime felt endless and we were the luckiest of people. If I had to point to one factor in the successful development of my happily eccentric brain, it would be that yearly summer freedom.

School can be hard and confining, especially for an active person with an unusual flavour of mind. I feel very strongly that summer programs for individuals on the autism spectrum should not be anything like the school year. As the old saying goes, "a change is as good as a rest", and summertime is perfect for releasing arbitrary structures and giving those unusual and interesting minds a chance to run free, led by their own curiosity, imagination and interests.

Allow me to share the summer chapter of my young friend Kieran's artistic, communication and intellectual development

(to read the back story, click here - part 1 and here - part 2 )

I'll let Kieran (in pictures) and his mom (in words) tell the story themselves:

E-mail #1: Kieran found the Usborne book "Playtime Activities" in his room. I explained that these were instructions on how to draw different things. I love this lion he drew!

E-mail #2: He' s on a roll- he just drew this in my notebook:

He has been talking to me about building a growing machine for the last few days, which I connected to one of the Little Critter stories (I think it's When I Get Bigger) ... I told him that he couldn't make a growing machine out of wood, but that he could make one out of Lego. I'm guessing he didn't like that idea and decided to draw one instead.

I'm delighted that it made your day!

E-mail #3: Here's a car crusher that he built yesterday after watching Mighty Machines. The car crusher is lego and he wrapped some toy cars to crush.

Your advice to let him have an unstructured summer was perfect.

It is a damaging myth that people on the autism spectrum lack imagination and creativity (food for thought: read this blog post from Jonathan Alderson ). The development of creativity and imagination require less-structured (or unstructured) time and open-ended situations. When we fill up every minute in the day with "educational" activities, when we set up learning environments where there are limited "right" answers, when we allow no time for a person to follow their own interests and ideas, we stifle the growth of what is arguably the most important intellectual ability that humans can possess.

“I am enough of an artist to draw freely upon my imagination. Imagination is more important than knowledge. Knowledge is limited. Imagination encircles the world.”               ~ Albert Einstein 

Give unstructured time a try - you won't regret it and your kids will remember it for a lifetime 

Drawing to Communicate: making sure your message is received!

This morning I received the kind of message that totally recharges my "therapist batteries".

In a recent post (click here to read "Drawing for Communication: how to get things started"), I wrote about Kieran, a young boy on the autism spectrum, who was beginning to use his newly developed drawing skills to communicate. Earlier today, his mom sent me an update by e-mail:

"We were chatting about having an outing ... either to Carp Market or the beach at Fitzroy Harbour Provincial Park. Kieran was in the room when we were talking and said that he wanted to go to the beach. We acknowledged his input, but I think he wanted to make really sure that we understood - he got a piece of paper and a pencil and drew this for us!"

Yay, triple yay for Kieran! He used his new drawing communication skills to make sure that his important message was received by his family (who were happy to accommodate his wishes in the family schedule for the day).

Being able to clearly communicate your thoughts and wishes to others (who will listen to and respect that communication) is the strongest strategy for short-circuiting difficult behaviour and melt-downs - knowing that you're "heard" makes all the difference.

Thanks so much to Kieran and his family for allowing us to share this story .... Sheila B


Posted using BlogPress from my iPad

Drawing Together for Communication: how to get things started

Drawing can be a useful tool for developing communication skills in young children, and in older children (and teens and adults) with communication delays.

One of the techniques I commonly use in therapy is "collaborative drawing", where each person contributes to the larger drawing, and the drawing itself acts as a visual record of the conversation or story. Take a look at this video (made with my typically developing nephew Will when he was 4 years old) for a short demonstration of this technique:

click this link if video does not automatically appear in your browser

 

 

Today I want to share with you some interesting developments from one of my young friends on the autism spectrum. Kieran is a bright active young boy (in grade 4) with delays in the development of his verbal language. He is very visual and is a whiz at math and putting together complicated building toys using diagram instructions. For the past two years, his family and I have been drawing things for him, making visual representations of what happens in our toy play and also of situations and interactions from the larger world around him.

During our early sessions, he was happy to have others do the drawing. The drawing was a good anchor for our conversations during play and this helped his focus, his comprehension and his verbal language development. Following our drawing/play sessions he liked to have the big drawings posted on the walls at home so he could look at them, think about them and talk about them with his family.


Then, at the beginning of this calendar year, Kieran started to take a more active role in the drawing process.


He began to frequently tell me what to draw and how to draw it. For example, this "portrait" of him and his cat was drawn in January according to his very detailed instructions:

portrait of Kieran in cowboy hat & tractor pyjamas (drawn by me, directed verbally by him)

He started drawing spontaneously to express himself - here is a picture, also from January, that he drew when his mom was drawing out some challenges from the school day (his suggestion ... how about going to Monster University?):

"I want to go to Monster University"

He has begun to draw collaboratively, adding details and figures to our large drawings (that we do beside our toy play), so now those drawings include his direct visual thoughts as well as his play ideas and what he has verbally directed me to add.

Here's a drawing from February where we explored the difficulty of loud noises and emotional responses to various situations - at the end of our session, he spontaneously added his two cats:



this "big picture" is done on 2 ft x 3 ft paper beside our toy play area
(this day we were playing with trains & plasticine figures)

Kieran's cat Ginger

Keiran's cat Spooky

 

Then at our last session in April, he added multiple details to our picture about Thomas the Tank Engine and friends:

 

Kieran added tracks and faces and smokestacks and many other details

What are the benefits of going after communication in this context?

 

First and foremost, it's fun and relaxed, and it makes formidably difficult skills (communication and social interaction) more approachable and accessible.

 

Second, it stimulates communication development in a very natural context, so the language learned is already generalized to where it's functional and fits.

 

Third, it lets the individual (who is the target of the therapy) set the pace - you can be certain that the information is going in, and they will show you when they have enough information and confidence to give the new skills a try.

 

 

 

 

Because we have never forced the issue, Kieran continues to willingly taking steps forward, trying new things and gaining confidence daily.

 

I leave you with his latest creation, a plasticine cat modeled after the many little plasticine animals I have made for him during our play over the last year - as you can see, it's a great cat with lots of personality and a happy disposition ... just like the young artist who made it.

 

Kieran's clay creation

 

 

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.

More Gifts of Learning from 2013

As promised, just in time for Christmas, some more interesting and entertaining pictures created by my students this year:

From Michael (whose favourite pop music radio station is "Hot 89.9") - here are the album covers he imagines for some of this year's hit songs:

 

From Emma (a lover of Disney movies & royal fashion) some pictures of princes and princesses drawn on the iPad app "Drawing with Carl":

Prince & Princess

Prince

Princess

Princess

More iPad drawing from Kevin and Adam, using the app Sketchbook Pro (which allows you to draw in layers & has many professional artist tools):

"Hobbes" by Adam

"Calvin" by Kevin

"Mr. Bean shoots Teddy out of a cannon" by Kevin

More scenes with Mr. Bean, Teddy, Kevin and his brother Raymond - drawn by Kevin in a "Scrambled Sentences" language comprehension activity:

 

And finally, some thoughts from Michael on "good vs bad behaviour":

 

(and I agree whole-heartedly with the rule he came up with!)

People on the autism spectrum can't always express themselves clearly through verbal language. Unconventional modes of communication, like drawing, can help the rest of us to see the true creativity, intelligence, humour and imagination that exist behind the unusual exterior.

Have a safe and happy holiday season .... wishing you a creative and interesting 2014!!

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)

 

 

 

 

Classroom Solutions - helping noise-sensitive students to cope

September can be a difficult month in the school system, as everyone (students, teachers, parents) gets used to new classrooms, new groups, and new expectations. 

 

 

 

This picture, drawn by Owen (and used with his permission), for me perfectly encapsulates the feelings of distress and irritation that can develop on all sides of the classroom dynamic, especially during the early weeks of the school term.

Here are some ideas to help you and your noise-sensitive students through any current rough spots, while laying the ground-work to create a learning environment that will be effective for the school year ahead:

1. Look at the problem from all sides:

Owen drew his perspective for me, clearly showing that he felt his noisy classroom situation was not working out for him, but also not working for the other students and the teacher. During our discussion, we used clues and tried to "guess" what was in the minds of the other people in the situation. This helped Owen to understand why some of the other students might be distracted and having trouble settling down to work, also why the teacher might be finding it frustrating as well (trying to teach when people weren't focused and listening).

It was important to him that I shared his drawn perspective with the teachers, so that he was sure they were aware of how upset he felt.

2. Figure out what you control and what you don't:

This is a critical part of the problem-solving process, because anger and frustration are driven by feeling powerless to change a difficult situation. Finding out where your power is (what do you control?) gives a starting point for effective solutions.

Here is a simple visual that I have often drawn for my students to show them what they control and what they don't:

Essentially, you have direct control over everything that is connected to your brain - your thoughts/feelings, your words, your actions. Your words and actions may "influence" another person's choices (this is the world of social cues), but you can't control what another person chooses to do, say, think or feel.

* aside: it's interesting how often I have to remind myself of this exact thing when I'm sorting out difficult situations in my own life *

3. Define the problem and generate a list of possible solutions:

Owen is extremely noise sensitive and his ability to process spoken information in the presence of background noise is not strong. The classroom was noisy and several students were being disruptive. Owen was able to define his core problems as: (1) clearly receiving the teacher's lesson and instructions, and (2) being able to focus and do his work.

Once we had clarified what the real problems were, Owen and I were able to come up with a list of potential solutions:

 

Notice that all of these strategies have to do with things that Owen has direct control over in the situation - they let him know that he does have power to change things for the better.

4. Get help for what is out of your control:

Even with the above solutions, this is a difficult on-going situation for Owen to manage (noise is a huge irritant that disrupts his thinking). Owen and I have known each other a long time, and he has confidence that I will act as his advocate and "go-between", explaining his distress to the other adults. He also has great confidence in the teachers at his school - they have helped him solve difficult situations many times over the years, and he is 100% certain that they "have his back".

True solutions to challenging school situations require on-going collaboration between the student, teachers, parents and any other professionals involved. Keeping good lines of communication going helps everyone to stay calm and have confidence that solutions can be found (no matter how difficult the events of the day may have been)

Long-term success in autism ... How will you feed the joy?

Today on the blog we welcome a "guest blogger": Carole, mom of Kevin (whose art work has been featured in previous blog posts). Kevin is a young adult on the autism spectrum with limited verbal language who uses drawing for communication.

Kevin playing the drums

Those of you who have been following our blog for a while may remember reading a bit about Kevin's early days in a post called A glimpse back at where one boy's drawing for communication started - the post included links to video clips of young Kevin and older Kevin, giving an idea of how far he has come. I recommend that you take a look at those clips before you read what his mom has to say:

How Will You Feed the Joy? by Carole G

(originally published in the Fall 2013 Access Integration newsletter of CISS Ottawa)

I’m sure there is not a parent among us raising a child with special needs, who does not have forever imprinted on their minds and in their hearts, the day their child was diagnosed. For our little family, it was the virtual blow from a two by four to the gut; the breathless shock to the system; the blood rushing to your face and the feeling that you needed to sink to your knees as some faceless voice uttered “severely autistic”. It’s amazing what power a few little words, quietly spoken, can have on a whole bunch of lives. Then comes the ricochet effect as the power of love for your child sends you hurtling into action as if on a permanent adrenaline rush: therapy, preschool, social programs, interventions, doctors, what program, how many hours, what can we afford, who are the best service providers and how much can we fit into a day? All the while, like an irritating song stuck in your head, the words so many will utter without truly understanding the impact they will have; “there’s a window of opportunity, and then development slows or stops.”

Hindsight is a wonderful thing. It occurs once we’ve made our mistakes, and we’ve experienced the learning curve. So I thought I’d share a couple of the things I see so clearly now, as we progress on our journey with Kevin who is now a young man of 20.

Yes, therapy is tantamount to success! Thank heavens, no matter how we bemoan the waiting lists, the cost, and what we feel is a lack of service, there is so much more available today than when we entered the system. Information and support is now out there in abundance, a few keystrokes away to any home that owns a computer. But what is success? We took our little boy on a marathon journey of learning. We enrolled him in Thursday’s Child Nursery School. We took parenting courses in behaviour modification. We used Children at Risk, which at the time provided supervision of behavioural programming and I worked with my son, as did a couple of special needs workers. The little boy who screamed and whined constantly in frustration, tantrumed continually, hit and kicked and couldn’t bare to be touched, was stubborn and defiant and who lived in a world that completely separated him from us, made gradual and very slow changes. Then we decided to take him to a doctor who practiced fundamental medicine, to look at his eating and digestive issues and low weight. While we waited for our first appointment he sent us a questionnaire. The first question was, “what are you hoping to achieve?” Such a simple question, but for me it opened the flood gates that culminated in a philosophy for our home, our child and our family.

What I wanted was for my son to experience calm, to reduce his pain, to calm his overactive senses, to be able to exist in his own skin and to have a quality of life and experience joy. By extension I wanted this for every member of the family and I wanted Autism to be a part of our lives and not the driving force. Yes, I wanted to teach my son and continually raise the bar so that he moved towards his potential. Yes, I wanted to feed his mind, and treat him like any other child, with some added supports to accommodate the autistic characteristics, but what I really wanted was to feed his soul. I felt that any child with as many hurdles to jump just to make it through the day and who was being forced to live in a world that really suits us and not him, should absolutely be given a reason to love life.

So, I watched him like a hawk trying to discover what fueled his interest. It really wasn’t hard to figure out that music calmed him. As he rocked to the beat, his body seemed to ease and he beamed in absolute delight. I looked for something to engage Kevin and sought to find things that would also provide entertainment for Raymond, his older brother. It is rarely discussed, but when you add a disability to a family unit, your plan of action has to include every member, and take into consideration how they relate to each other. Raymond chose drumming. Kevin, who couldn’t abide certain noises, who had to be taught to touch his nose with the aid of a mirror, who didn’t cross the midline to pick up a pen with a preferred hand for an eternity and who was clumsy and uncoordinated was about to embark on drum lessons. I found a local music school (www.jeffsdrumacademy.com) and sat with the two of them for an hour a week. Fate, kismet, a guardian angel, call it whatever fits your beliefs but we were matched with a wonderful young man who was patient, fun, not only didn’t mind Kevin’s rote scripting of movies, but joined in. He willingly turned to me and asked for teaching suggestions. He accommodated the diagnosis, and expected Kevin to learn like any other student. The boys loved it.

Kevin has been playing drums for over a decade. He now has barely any noise sensitivities and he’s able to count out music at incredible speed. He is well coordinated while playing and continually improves. He reads music at a university level and most importantly he loves it. He looks forward to his lesson, is thrilled to see his teacher and has a face bathed in bliss as he plays along to the music, confident and proud. The brothers share a common enjoyment and this feeds their mutual love of music. One of the best gifts Kevin ever received was a website made by his brother. It contains all the music videos Kevin loves and the commercials that send him into fits of laughter. I’m sure Raymond thought he was just creating a gift that his brother would enjoy. I saw it as an example of a brother’s love. He took the time to create something that was perfectly suited for a differently abled sibling and one that fed into the interests they shared and a place they connected.

In a similar fashion, we have long used the services of the most incredible, out of the box thinking speech therapist. This wonderful lady forged an amazing bond with both Kevin and our family. She taught Kevin to draw and paired that skill with language (www.autismandtheartofcommunication.com).

Once Kevin began to draw he didn’t stop. When he picks up a pen, his face relaxes, he becomes spellbound and competent. His art is his love and is pervasive in his life, almost like a visual dictionary that he uses to order, understand, and relay his life. I am very grateful for a way to communicate with my son and him to me. When a situation arises that I need to explain or prepare him for, I pick up a pen and draw a comic strip. When I need to understand him, I will draw a picture and ask him to finish it. He shows me in pictures what any other child would describe in a conversation.

Kevin ticked all the boxes on the Autism diagnosis criteria save one, he didn’t spin objects. He was loved and challenging, big time. It has been a long, gradual journey. Kevin could not speak, tolerate sounds, touch, textures and taste.  He was distant and isolated, screamed and hit and lived in constant frustration. He was in pain often, slept rarely and appeared to be on the edge of a cliff always.

Today Kevin is barely verbal but communicates with us. He is calm, joyful, affectionate and can tolerate anything with a little preparation. He is smart, eager to learn, helpful, and does anything and goes anywhere you would expect of a young man his age. We taught him, fed his mind, helped find and develop his loves to create his joy.

What is success? It is ongoing and our journey continues. We still have a long way to go, but success hit me like that initial two by four at diagnosis, albeit with a much different effect, when our family attended Raymond’s university graduation. Success was never thinking for a minute that Kevin wouldn’t be there to share that joy. It was also watching Kevin, gently rocking with a smile pasted on his face as he listened to the quartet play as we waited for the service. He sat quietly through a long, hot service, getting up and cheering beside us as Raymond walked the stage. Raymond caught sight of us and sent a special wave specifically for the brother he is connected to. We were a family sharing a day of pride and meaning, where Autism was present but not the driving force.

So as you embark on a journey that will push you to your limits, my suggestion is, as you race to do all the things you can for your child, take a moment to relax and consider; how will you feed the joy?

 

Untangling the "Why?"

Probably the most common questions I've fielded over my years working with individuals on the autism spectrum all start with the same word: "Why ... ?"

Why is he doing that?
Why doesn't he look at me?
Why did she run away?
Why did he melt down?

Some autism professionals will tell you that all of the information you need to know (to answer your question) can be found by observing the person's behaviour in the environment where it occurs. I would agree that this can be a good place to start (especially if the person is non-verbal) because you get some clues about what might have gone wrong, what might have irritated, upset or overwhelmed that person. But it's just a starting point.

Many human actions and reactions are more complex than "if this, then that" - they are driven by thoughts, feelings, perception, understanding - to figure them out, you will need to find a way to ask the ASD person what the situation looked like from their perspective and you will also need to listen to, respect and act on the answer you get.

So, a few personal stories to illustrate:

First, a story that I've mentioned previously in this blog. When Adam was in elementary school, a social goal was written into his IEP (Individual Education Plan) stating that he would learn to say "hi" to other students in the hallway. From the start, Adam was clearly (and observably) upset by this program. So, I drew a picture to "ask" him what was wrong - here's what he drew:



#1 is my picture "question" to Adam - pictures #2-4 are his "answer"

Picture #3 was the most compelling for me - Adam is inside the locker, hiding from the horrible smiling greeting girl (visible in pieces through the locker vents), his distress and upset clear for anyone to see (no lack of emotion on his part). While we still didn't know "why" it was so awful for him, there was no doubt that it was, so the "greeting program" was scrapped.

Respect for his perspective. In retrospect, my guess is that he was not able to process faces and voices very well at that point in time, so he couldn't really tell who was talking to him (or why they would be). When he got to high school, he seemed to suddenly be more comfortable with other people and started to spontaneously greet them and call them by name - because they were the same height as him? because his neurology had developed to the point the he could distinguish one person's face/voice from another? because life in general was more comprehensible to him? - maybe one or all of these reasons (or something else entirely). Interesting, but not as important as listening to him and respecting the fact that a program meant to be helpful was actually not.

Second story, also from elementary school, involves a different young boy with a diagnosis of Asperger's Syndrome. We had been doing a lot of visual work to help him figure out social dynamics on the playground (an environment that was full of conflict and distress for him). Suddenly, his EA (Educational Assistant) made a worrisome observation - the boy's eyes were rolling up in his head when he was out on the playground with his peers. Some of you may have jumped to the same conclusion that we did - fearing he was starting to have seizures, we discussed a referral to the pediatric neurologist. But just before we did that paperwork, I realized we hadn't really asked him what those incidents were like from his perspective.

So, I drew him a visual "question" (although this boy was verbal, his language often failed him when he was trying to discuss more abstract or emotional topics). The question looked something like this:

I asked him to fill in the thought bubble, and this is what he wrote: "I don't want them to read my mind". Interesting. We had been having a lot of discussions about the "invisible" social cues (facial expression, tone of voice, body language) and about how eye contact was important because it let you "read" these social cues and make guesses about what another person was thinking (to help navigate a social situation more successfully). This boy was very intelligent. He decided he wasn't all that comfortable with having other people know what he was thinking, so he purposely denied them eye contact to prevent them from reading his mind. A logical and reasonable conclusion based on the information he had been given.

So, we had a new discussion about the difference between guessing and knowing, and the fact that the other kids couldn't actually read his mind. Once he felt reassured that his thoughts were still private and it was his choice which ones he wanted to make public, the eye rolling stopped immediately, and the neurology referral was no longer necessary.

Not a "why" that could be figured out in any other way than by asking the person doing the behaviour.

Third and last story. This one is about another beautiful and sensitive young boy with a diagnosis of autism, preschool age, who suddenly seemed to go backward in his toilet training. It turned out that he was fearful of the noise made by the public bathroom hand-dryers and his fear quickly extended to all toilets. A psychologist suggested to the mom that she make the boy go into the public bathroom (drag him, I guess), stand him under the dryer and repeatedly turn it on until his "avoidance" response was extinguished. The mom didn't think this sounded like a good idea, so she asked me for a second opinion. I strongly backed up her intuition that this was a very bad idea.

Observation showed that the boy was terrified by the hand dryer noise, although he couldn't articulate "why". Parental common sense says that you protect your child from fearful situations, rather than purposely exposing them to scary and overwhelming situations (because that's abusive).

Here's what we did instead. I made him a tape of sounds - ones he liked (like my piano) and ones he didn't (like the hair dryer). Then I let him be the boss of the tape machine (this was a while ago, it was a cassette tape). He controlled the on/off, the volume, which ones we played and which ones we didn't. Very interesting because he would choose to listen to the "fearful" sounds in this context, very softly to be sure, but he seemed to want to figure them out.

At the same time, we got him some "over the ear" noise protection headphones from the hardware store, and he wore these many places outside of his house to control his personal noise intake. I can still clearly picture the day he arrived at my house with a determined look on his face, headphones in hand and announced: "Sheila, get the broom ... we're setting off the fire alarm!" ... and we did ... and then he asked me to get the hairdryer so he could turn it on and off while cautiously lifting up one cup of his headphones. A very brave boy, facing his fears on his terms.

What was important here? Listening to his perspective. Giving him respect for the magnitude of his fearful response to certain sounds. Giving him control over that scary part of his everyday environment. Giving him strategies to manage the overwhelming cacophony of the larger world.

And here's the most interesting part. The "why" of his reaction, which was revealed as he grew older. This boy is a musical genius. His auditory system is so fine-tuned that he can play back multi-part harmony after hearing a musical piece only once. His auditory processing is far too exquisite for the yammering jack-hammer nature of our mundane world, and that's why he was overwhelmed by everyday noises when he was a little boy. As a grown-up, he is an accomplished musician with a rare talent. Beautiful boy indeed.

WHY is the most common question, and also the most important question.

 

Always seek out the perspective of the person on the autism spectrum. Respect the answer that you get, even if it's not convenient or the answer you hoped for. Bend the world to accommodate the ASD person, smooth the rough edges, make things comprehensible, give them control and the power to choose what they want and don't want, what they will or won't do. Respect them as independent intelligent human beings who may not want to comply with your arbitrary demands, but so what?

 

Defiance tends to lead to more interesting and unusual places than compliance anyway.

Michael's Father's Day Gift

Here's a story that Michael's mom sent me via e-mail yesterday. Michael wrote it for his dad, and with the family's kind permission, I am sharing the story with all of you:

First, an introduction by Michael's mom:

"Soon, he will have enough stories for a book. About six months ago Michael threw out an important wire and (his dad) was very upset, but there's been no talk of it since. How thoughtful of Michael to want to replace that wire ;-)"

And now, Michael's Father's Day e-mail to his dad:

"Dear, Dad,

I made a note for you for Father's day. I hope you like this.

Love your favorite son, Michael

It was Father's Day on Sunday, & Michael wanted something really special for his father. "Hmmm," said Michael. "I wonder what should I give my dad?" He decided if he wants a new wire for dad's radio. He looked at The Canada Computers Store for help. He looked & looked & looked & looked but the wire wasn't there. "Aw, tarter sauce!" cried Michael. "The wire is gone!" He went inside Future Shop & he finally found the wire in the wire box. He paid for it & puts it in his pocket & took it home. "I like my new present," said his father. "Awww, it was nothing," said Michael. "I promise never to throw the wire away again." His father doesn't really like the pink wire. He likes the black wire."

And a final comment from Michael's mom:

"In this story, we realized that the reason Michael threw out the wire was because it was pink.

Love how these stories give us insight into why Michael does what he does."

A beautiful illustration of the importance of opening alternate communication channels in autism, so that ASD individuals can express the reasoning behind the actions that can sometimes get them into trouble ... and there's always a reason.


- Posted using BlogPress from my iPad