If I Had Known What You Would Remember......

    I had a beautiful evening with my boys. One of those spontaneous times that you can't plan where we didn't even do anything particularly special.

   It was my day off and as we are all doing these days, I spent my day rushing around doing a hundred little errands that needed to be done before the kids go back to school. Groceries, farmer's market to get the summer's last berries for jam.

   I came home and was a little miffed to find two boys shirtless, in jeans hanging lower than mother likes them to hang, "Markie mark" type underwear emerging from the top, kitchen filthy and nothing done. I had a moment of frustration since they had been off hanging around all day and I had been running around like a crazy person. They are pretty good at sensing my moods and as they surveyed the scene, one disappeared into the garage to unload the groceries and the other suddenly became aware of the mess he had avoided seeing all day.  The chaos that was the kitchen disappeared into the dishwasher and they both hung around to visit in the tv room with me while I started dinner.

   My oldest is now a "BBQ master", so he got steaks ready, and onto the engine shaped BBQ he had to have last fall at a fundraiser we attended. We enjoyed a lovely meal and then without me having to ask they both cleaned up the kitchen and then sat down to watch a bit of TV.

   I have this thing. This crazy earth mother thing where I buy a ton of produce in the summer, freeze it and then try to make homemade jams, tomatoe sauces and stuff for the kids in the fall and winter. It drives them crazy because they would rather eat Kraft jam with all the chemicals, but I keep doing it anyway. It makes me feel like I am looking after them in some odd way.

   I was really tired, but I had three flats of berries to deal with so I dug in with both hands and started getting them ready for the freezer. About a half hour in, my youngest looks up and says, "You look tired Mom, do you want some help?" Not a big deal for a neuro typical kid, but for an Aspie to look at you and make an assesment like that is kind of a huge thing! He came to the table and decided to keep me company. My oldest drifted up the stairs and sat down with us and we started laughing as the conversation meandered around things they were thinking, school, and the topics of the day. They were both eating as I was hulling and sorting and laughing at their antics.  "You are crazy Mom" came the comment with berries practically spilling out of his mouth "why do you buy all these berries? " And as I watched them enjoying the moment I thought, this, this is why I do everything I do. To share moments, precious moments with my two amazing kids.

    I was so filled with gratitude that I got to work the next morning and tried to find an old email that I loved. It was one of those emails where I should have saved it but I didn't at the time and know I have tried to locate it a hundred times but can't. It was a letter from a parent to a child about the things they wished they had known. A dear friend suggested maybe if I couldn't find it I should write my own version and so that it what I did.

  In the moment I realized that night, that the big moments we try to create for our children are rarely the things that they cherish and remember. I know they weren't for me. The things that created the richest tapestry of memories for me are the things that they never would have known were that significant.
   
    I hope you are touched for a moment and that it takes you into your own heart.

If I Had Known What You Would Remember

I would have done it more often,

More tenderly,

And with my full attention

 

My imagination races with ideas

Creating a careful map

Of Childhood wonder

Hoping your recollections

Will be as full and colourful as my own

 

I fall into bed exhausted

Certain that today will have been

That perfect day

 

And I dream of the things that I remember

And I realize that it was her beige corduroy pants

The feel of her suede jacket under my fingers

So proud of her at my school

Of the thousand outfits she must have worn

I remember that one

 

His prickly, tickly mustache and the way it itched me

When he kissed me good night.

Riding in his truck at Christmas time

Doing errands, getting chubby “pop shoppe” sodas

Singing as loud as we could in the car

To the 8 track player and the Eagles

 

The ring of their laughter

With all of their friends

When I was supposed to be fast asleep

 

The way she absently stroked my hair around behind my ears

As she was talking, and my head lay in her lap

And she thought I was already asleep

 

My memories are full of the moments

I am sure they never knew

And they are more dear to me

Than anything they could have planned.

 

And I realize life is perfect

And they will remember what is important

Without me ever knowing.

 

 

 

 

 

 

Changelings- The Fairie Children and the Historical Face of Autism

 Have you ever noticed that within all Fairy tales or children's fables, there is always a thread of truth? Some lesson that is meant to be imparted? Or warning given?

  My own spiritual journey has taken me deep within my Celtic roots. I am predominantly Scottish with a wee bit of Irish thrown in. In September I spent a week with a group doing healing circles in the sacred stone circle sites in Southern Ireland. It was a truly profound experience. I was amazed that in Ireland, where they have fiercely preserved the Gaelic language ( it is still compulsary in school) that they have also preserved a rich history of the Celtic paegan beliefs as well. All over Ireland are holy wells and ancient places that are still a part of daily life.  These belief are rich in tradition, tales and wisdom that speak deeply to my soul. Many of the practices that I take for granted today, like meditating and reading Runes would have branded me as a Witch in that time. In fact I am sure that probably actually occured once or twice as the Atma or soul of who we are is constant, and mine is fairly outspoken! Anyway, I digress.

   One of the strongest Celtic legends is that of the Changeling Children. Fairies and their world, were a real presence for Celtic people, a strong part of their belief system. The Fairie Realm was separated from the realm of man by a thin veil and the Fairies crossed that veil all the time to warn, help, play tricks. They were thought to congregate beneath Hawthorne trees. This belief is still so strong that while I was in Ireland, our bus driver told us that when they were building the freeway, there was a single Hawthorne tree in the way. None of the workers would move it believing that cutting it down would bring a lifetime of menace from the fairies. This was less than twenty years ago!!! In the end, the freeway was diverted around the tree and the tree stands where it has stood for eternity in the same place today. 

  Although there was a healthy respect for the powers of Fairies, they were not really feared, except in one respect by mothers. It was said that if you had a particularly beautiful child, sometimes the Fairies got jealous and they would come to take the child and leave one of theirs in it's place. The Fairie children were odd and silent and did not like to be touched. Occasionally they behaved like devils, as though they were possessed.  They would not look in your eyes. Mothers were told never to dress their babes in green ribbons as the Fairies had a preference for that colour ( that made me want to do a study on whether Aspie parents have a preference for the colour green! There is usually some truth embedded within). Everyone knew that the Fairies preferred boy children so it was a common practice to let boys hair grow into long ringlets so that they would be mistaken for girls. 

    If you realized the Fairies had stolen your child, you were to take it to the top of a hillside and leave it exposed for the Fairies to retrieve. The reality was that these children would have died of exposure or been eaten by wild animals. Imagine the parents anguish at being told to leave a child to that fate. Stories like Romulus and Remus, the twin boys abandonned who were suckled by wolves, Tarzan and his apes, Mowgli in India with Baloo his bear, all of these would have likely been fairy tales created to sooth parents who were socially pressured to leave their children in the wilderness. These were comfort stories to give some hope to parents that they were not abandonning them to certain death, but perhaps another animal in creation would take pity and raise them.

   Autism is not new. It has likely existed as long as mankind. It is embedded in our history, in our stories and our cultures, hidden in the fabric of legends because it was made up of the things we couldn't understand. The realm of magic. I was facinated to realize the the stories I loved as a child are now linked to my present. The Fairies are still part of my world.....lol

In love and light,
Kathryn

Help Boxes - Visual Supports for Success from Emily Rubin

   Emily Rubin is a very talented Speech and Language Pathologist, an amazing professional committed to kids on the spectrum. She gave me a very important understanding today. She explained another difference between us and kids on the spectrum. Kids on the spectrum view us as objects, not people. Their brains categorize us much the same way as they interpret circles, squares or triangles.  When they watch videos involving shapes that move and a stick box that opens and closes, Neurotypicals ( us) will attribute social stories to the scenario, for example, assign genders to the shapes, make inferences about their "relationships" to each other. Kids on the spectrum will just report the movements of the objects but not make any stories. They can't infer relationships or read anything past the objectively visible movement. It is the same issue they have with us. They can't predict our reactions or behaviour.We are objects that do seemingly random things and we are not trustworthy or predictable.

    She gave this very common example that illustrated this very clearly for me. An aide in the school shows up to take "Tommy" for speech and language pathology. She stands in the doorway. He sees her in the doorway but ignores her. He is not being rude, he simply does not interpret intentions and the fact that she has come before doesn't matter because he also has difficulty generalizing contexts. He only sees her as an object standing in the doorway. There is no visual support to indicate the next steps he should take. Now imagine that because he hasn't moved she is going to approach him and move him. Now she has become a big unpredictable crane that is going to violate his space. You know how this story ends. When we understand how their minds work we can learn to lure them to tasks using visual supports rather than causing them huge amounts of stress and engaging them physically which is very stressful for them. Visual supports act as a road map to support their progress with tasks giving them predictability and more success.

    In order to make our kids successful within the context of life, we need to teach them to fall in love with people, to study them. To treat us as a library project and learn everything they can about our reactions and our behaviour. That will not happen if we are unable to reach them without confusing or traumatizing their systems. We need to understand how they see us and work around that. Emily talked about how these neurological differences impact social competence. She discussed three distinct areas.

    The first area is "Transitions". Kids on the spectrum have great difficulty with transitions. When shifting from one activity to another without visual supports or cues, there is a lot of heightened anxiety. Visual supports provide a lifeline, a visual schedule that they can follow. Autistic kids are often labelled oppositional defiant, when in fact they have no idea what we want. They are confused and need visual support.

   The second area is their difficulty with "active engagement and functional communication". An example of this is a teacher places math problems on the desk in front of one of our kids. If the student can't predict the purpose of this task, they are not likely going to do the problems. We use statements like you can't go for recess until your problems are done. What does recess have to do with math? Sometimes we can use the child's special interest to make the math problems relevant for them. that gets them interested and we become interesting.  We need to teach our kids and adolescent's to self advocate and ask what the purpose is. Autistic kids will not engage in meaningless, purposeless activity. We must learn to engage the "what's in it for me factor" according to Emily.

   The last area is "reliance on immature or unconventional emotional expression and coping strategies." When we are not a predictable or reliable source of emotional support , coping strategies tend to center around self soothing behaviors. These involve repetetive, rhythmic, soothing behaviours. Involving envirnomental adaptations and learning supports has a very significant impact on supporting our kids abilities to work on their social competence. When we become predictable, reliable sources of support they need their self soothing behaviours less and less.

    One of the best ideas that Emily offered for use in the classroom and home were "Help Boxes".
A help box is as easy as this. It can be a spot on the teachers white board that is consistent so the students know where to look for it. For any task requiring multiple stepped instructions, you write the number and a word or a brief phrase based on the language abilities of the child. Simple is better. Here is an example she gave. One kindergarden teacher was having trouble with her class at the end of the day getting organized. Her help box looked something like this.
       Help Box
1. read
2. bathroom
3. mailbox
4. backpack
5. read
The funny thing, is that it was every bit as effective for the neurotypical kids as is was for the spectrum kids!! We all benefit from supports! Imagine a home help box, perhaps one about personal grooming and getting ready in the morning. We can post it on the mirror. The key is to enlist the class and the child's help in creating the help box which engages them in it.

   As our kids progress through their education, Emily suggests we create help box cards for anything that we or they feel they need added support with. They can be laminated and could extend to concepts like "what to do when you get to the airport". These supports have the potential to increase their independence and self fullfillment as they progess through life.

    PECS or the picture exchange system, which you can google if you haven't heard of it actually has the ability to create vertical removable help box strips off of a linear velcro schedule for the day. It is a really great option and the help boxes can be removed to complete a task and then readded to the master schedule.

    Thank you Emily for another great lecture and some wonderful pearls..
In love and light,
Kathryn

Mirror Neurons - A New Understanding of Autistic Processing

  We returned from lunch to enjoy another session with Eustacia that was equally stimulating on Thursday.  She had decided to speak on the problems going on within Autism that are disorienting us. Society today is very different from our history. The last hundred years may as well have been a thousand in terms of the differences in the way that we live.

   Historically Autistic kids were more easily absorbed into society than they are today. Life was often rural in nature which allows a variety of opportunities for those on the spectrum. Young adults driving farm equipment from the time they can barely see over the steering wheel that perhaps would never have the opportunity to drive if they had to deal with urban traffic and noise. They could milk cows, care for livestock,  and find meaningful purpose to their lives. Our lives get increasingly more complex to cope with on a daily basis , which is a concern for our children as they reach ages where they would like to be independent. The society itself valued a child brave enough ( fearlessly autistic) to climb to the top of a ships mast in a storm and make sure every rope was carefully, obsessively tied. Their special abilities were often of great value although narrow in scope.  Our current culture places real strain on our spectrum kids.

    She gave two definitions. Empathy and Sympathy. Empathy, is where if you cut yourself I can actually feel the pain of that cut. Sympathy is the imaginative act of a concious mind to imagine how someone else might feel. Empathy is why we are able to function as a tribe or group. It is the essence of our humanity.

   Mirror Neurons are a new field of study. They are essentially "empathy" neurons. Neurons that respond in the premotor cortex that can be activated by imitation or actual motor operation, or even simply thinking about an action. It is a whole new area of neurological study being conducted by Dr. Ramachandra and Dr. Eric Kandel. One study she described involved them wiring up the brain of a live monkey and watching her responses. The day was very hot in the laboratory and one of the lab workers walked in with an ice cream. The monkeys brain lit up like a christmas tree in the exact area of her brain that she would use to lick the ice cream herself!

    Mirror neurons don't work the same way for those on the spectrum. Autistic kids can come to sympathy through intellect, but not through emotion. Emotion is required for empathy. Spectrum kids have trouble imitating the actions of others because this is all related to the mirror neurons system. Human beings generally learn by imitation even now, right from early speech to doctors and interns and trades. Autism reminds us that the self emerges from a reciprocity with other human beings. When it withdraws, it barely exists. We characters in a play that doesn't have the same depth if there is only one player. There is isolation.

    Eustacia spoke of a researcher who was looking at isolating the gene for Autism and her experience with a young Asperger's man in the audience. The young man stood up at the end of her presentation and asked her if she was trying to eliminate him. She was very upset by the exchange and explained that it was important to find the gene responsible. At the end of the lecture she approached Eustacia and talked about the exchange and they discussed that if they did isolate the gene perhaps Autism would no longer exist. The ramifications of that for that young man were deeply disturbing since that was his identity. Imagine a world without Bill Gates, Einstein, and countless others? It makes me wonder if the absolute elimination of autism will somehow hasten the exinction of the human race. People on the spectrum make a contribution to our lives and to humanity every day. Elimination of anyone for me is a disquieting thought.

      I do look forward to advances and hearing more about this research in hopes that we can continue to enhance the quality of life for people who live out their lives on the spectrum. This research promises hope.

 In love and light,
Kathryn

A Mother's Reflections- Meeting Eustacia Cutler

   She stood at the front of the room in a softly constructed orange jacket and black pants,with a large white lily type silk flower with fine gray filaments springing from it's center. She has tumbled salt and peppered curly hair and a voice that is melodic and soothing. I instantly like her.

   Eustacia Cutler has a gentle wit, and a strong New England accent. She is able to point out the humour in this journey because she has travelled this road before us, when there was not so much as a foot path to follow. More of a game trail. She reaches deep within us, touches our wounds and puts us all at ease.

   One of the first things she says is so haunting that I can't put it out of my mind even now, two days later. "In the midst of our confusion, comes the soul destroying feeling that we are no good as parents. We lose our sense of identity. A baby needs a mother, but equally a mother needs a baby to feel like a mother." All too commonly our children are beyond our reach, beyond our ability to comfort, which leaves us both adrift in the abyss.

   She spoke of the difference between mothers and fathers and how they cope. As women, we are hard wired for adaptation. Evolution has designed us to bear children. For our bodies to swell and ripen, deliver and retract to normal again. Our breasts fill with milk, are nursed and then empty again. We learn to follow the monthly cycles and rhythms that gently guide our existence. It is what we know. We are designed to be flexible. To fill and to empty. When faced with the problem of autism, we start looking for options and coping mechanisms, ways to adapt to this staggering shift. Men's bodies are more rigid, solid. They are built to hold fast , to stand up to honour. Men often struggle deeply with the diagnosis, feeling that in their human reactions to what they are trying to manage, they are no longer the honourable people they thought they were. Shame is a deeply rooted emotion that can drive a spike into the core of any human being. Some ache to leave their families, to somehow regain that honour, but know they can't do it.

  Strangers watching us managing uncontrollable random outbursts and meltdowns often are uncomfortable and frightened. Even harshly judgemental,  but then they feel the guilt that they are being unkind. They move away quickly and thank God above that they are not us.  As parents we feel like failures at what seems to come so naturally to everyone else, and no one sees that we have done all the same things they have done, it just doesn't work the same way with our kids. Our challenges are so very different, our successes so very precious and sometimes too few.  Society is complicated and shallow. No one is in the present moment. We do our best under the barage of advice from friends, family and even well meaning strangers, and sometimes get buried under the weight of "shoulds" and "judgements" about what we could be doing better.

   As human beings we harbour an extraordinary capacity for change. All of us. We are a blank states, fluid in our ever changing capacity, ever expanding and adding to the abilities of our brains. For a parent of a child with autism, our task is very similar to being asked to build a pyramid with tweezers out of sand. One grain at a time we place small pieces of learning and understanding within them, our precious children, hoping that we will create for them reliable structure within their lives. Teaching children on the spectrum requires dedication and repetition. Finding many ways to approach and reinforce the lessons, to generalize knowledge from context to context. The task is mammoth in it's vastness, and as such we keep our gaze short, just to the next hurdle, just to the next brick.  Our children do grow and change. They can learn to be fullfilled as they would like to be fulfilled. She said Temple told her last year that the older she gets, the less autistic she is. She isn't cured of her Autism, but she is fullfilled as she would choose to be. She has learned to adapt.

    She left us with this statement. "There are no sign posts to Heaven. Only choices. If it doesn't work, change it. Even when choosing and changing can seem a threat."

   She is right. And I think about how blessed we are to have these children in this time in the history of the world. I watch Eustacia, and after listening to her story about raising Temple in the 50's in Martha's Vineyard, at a time when women were to be beautiful, respectful, quiet "June Cleaver" type mothers, I am struck by the risk she took by protecting Temple. To be ostracized by her social peers, to have her husband treat her as the enemy and try to have her committed to a mental assylum because she wouldn't allow him to put Temple in an institution. An attempt narrowly averted by a doctor who alerted her that her husband was keeping a journal on her activities. In that time, on his word alone she could have lost all of her rights and forfeited her children. She is a genteel woman when she speaks, but under that veneer is a renegade. A woman of incredible strength and courage. I admire her. And as hard as I sometimes find this path I realize without her and the contributions she and Temple have made, it would be much harder.
Society is embracing our children, the media popularizing shows like the Big Bang Theory. My son's hero has Asperger's just like him. And he lives very sucessfully on his own. What a great role model. Finding success is possible.

   Eustacia understands our tremedous feelings of inadequacy. She lived through the era that believed Autism was caused by "refridgerator mothers". It was not a good era for women. The blame was placed squarely in their laps while the fathers were let off the hook. But in the end truly, none of us were let off the hook. That is the forgiveness we must provide for ourselves, knowing that in each day we do the very best that we can.
Today families work together and share the load often with one parent staying home to manage the child while the other works multiple jobs to cover the staggering costs associated that are not covered by any programs. But research is making progress and there are new options available to us all the time. New understanding and skilled professionals to guide and help us nurture our beloved children. We have made progess, and we are progressing at a rate that is amazing. It has only been 55 years that have passed for Eustacia. It seems like lifetime's ago that we would be so narrow minded in our humanity. So inhuman in our treatment of people already dealing with so very much.

     Thank you Eustacia for your fearless devotion to your children, for your amazing courage and leadership. Thank you for having the conviction to speak your truth. It was an honour to meet you in person,

In love and light,
Kathryn
  

January Autism Conference in Edmonton 2012

  This is a must attend conference for anyone with kids on the spectrum, including ADD and ADHD.
Last year was my first year to attend with our recent diagnosis and this was the most incredible group of speakers and best information I have received to date.

   The conference runs from January 19 to 21st, a Thursday to a Saturday. Temple Grandin's mother is the keynote speaker on Thursday and she should be fantastic. I read her book called "A Thorn in my Pocket" about her journey parenting Temple in a time where it was strongly advised that Autistic children be institutionalized and forgotten. Her courage as a mother and her fight to help Temple lead a life with meaning is inspirational to all of us with these children. She never backed down even when faced with incredible odds and doctors who were borderline abusive to her. She was Harvard educated in a time when few women attended post secondary education at all.

   The speakers on Friday and Saturday are as follows:

 Winnie Dunn: Sensory Processing in School, Home and Community- How to Make the Best of  Every Moment
Pat Mirenda: Video Modelling : What, Why and How and Using AAC for Social Interaction
Sue Mitchell: Promoting Independence: Strategies for Developing Self Help Skills
Emily Rubin: Addressing Social Communication Skills in Children and Adolescents with High   
                     Functioning Autism   
David Nicholas: Pervasive Parenting Dilemmas in ASD: Families in Complex Terrain

  There is an exhibitors area with great books and toys, games etc relating to teaching our kids as well as many opportunities to speak to speech and OT professionals and network with other parents. Last year there was a parent pannel which was really helpful to me in particular.

   I hope to see you all there. You can register at the following link : http://www.childrensautism.ca/web/conference.html

In love and light,

Kathryn
       

Bringers of Light

    Each of us holds within our center a flame. A brilliant, blinding source of love and light, that often we cover up and hide from the world as a result of our hurts and scars as we move through life. They are points of divinity within us here on earth, points of reference to guide us through this life.

    When I meditate I can feel that flame growing inside me to the point where I sometimes feel heat coming our of my chest and my hands. I am starting to feel like that light is finding its way to the surface of my skin. To become visible to those who are also seeking to see.

    I left yoga the other day in the afternoon and a homeless man on the street came up behind me asking for change, I felt terrible. I had nothing with me. The friend I was with gave him all the change he had and then the man walked away. My friend turned to go to his car and from behind someone gently but firmly came up and wrapped his arms around me, gave me a squeeze and gently let me go. It had such warmth to it that I actually thought it was someone that I knew. I never thought to be afraid. I was surprised and as I turned to see who it was he looked over his shoulder it was the homeless man, and he smiled at me with a mouth full of broken teeth as he made his way down the street away from me. I felt strangely blessed, like I had been touched by an angel. I turned to see if my friend had witnessed what had happened but he was nowhere in sight.  I was profoundly affected by this moment in time.

    Last night I spent the night helping a friend move furniture, and then we met another friend for coffee and dessert at a little out of the way cafe. I have been very conflicted about seeing this friend because I started doing yoga at her studio and ended up training somewhere else because I couldn't make the times work. I feel like I have been "unfaithful" to her and it was eating me inside. I have thought a thousand times of how I could tell her so that there wasn't this block in my energy with her. During the conversation I took a deep breath and I said " I need to share something with you." I told her how conflicted I was feeling and how desperate I was for her to understand how much I value her. How important this journey has been to me and how grateful I was for her guidance. She is very spiritual, and very self aware. She shared with me her own in the moment honesty and her feelings of jealously around that. And you know what, I sat and let those feelings land for me.  But in the end she thanked me for sharing my truth and told me that it was the journey that was important, and the relationship we have is sacred and precious. I felt tears in my eyes at the clean-ness I felt between us in that moment. A brightening of my internal flame. I felt grateful I found the courage to be true to myself, and to her, in that moment.

     There was an italian man working in the shop who had been flirting with us all night. He was funny and engaging and clearly enjoying the brightness of the energy that surrounded our table as we laughed and giggled the night away in intense conversation. He came and sat with us at one point and then just before we left, he came over with three little white bags each with a beautiful pastry inside. He thanked us for the evening and hugged us, sending us each out with a little treat and begging us to return soon. He was gallant and chivalrous and reminded me that small acts have profound meaning in the lives of others. I left feeling beautiful and precious with that small white bag between my hands and I said a small prayer of thanks on his threshold, for sharing the flame inside him, that divine point of light, with the three of us.

     May you see in this beautiful season, your own flame, reflected in the faces of strangers and loved ones as we all make our way home.

I send you blessings of love and light,
for my own cup overflows,
Kathryn