Life on the Line: Autism (Aspergers) and ADD in Adolescent Boys

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

2012-08-31T09:50:00.001-07:00

    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

2012-01-22T08:11:00.000-08:00

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

2012-01-21T18:30:00.000-08:00

   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

2012-01-21T16:28:00.000-08:00

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

2012-01-21T16:02:00.000-08:00

   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

2011-12-16T12:40:00.000-08:00

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

2011-12-16T11:06:00.000-08:00

    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

A Thread of Hope- It Is Working

2011-12-12T14:17:00.000-08:00

    I got home from work on Friday, and as per my usual routine, I stopped to get the mail. Flipping through the envelopes one caught my eye and I opened it to find my son's "report card" from his Social Skills group at the Miseracordia hospital.

    Backing up a bit, upon getting our diagnosis, we were put on a list for this Social Skills group. There was an 18 month waiting list. Talk about scarcity of essential resources. We got the call 11 weeks ago and although he was reluctant, I didn't let him wiggle out of it and he just finished the program. It was once a week with a group of adolescents, parents, social workers and a psychiatrist. The program was aimed at assessing where their areas of deficiency were in terms of social interactions and skills and then teaching to those specific areas.

    I read the final report as I sat at my kitchen island thinking about the journey over the last year and a half. About the incredible progress we have already made. About half way down the page was the following statement " he took a real leadership role in participating in the group..... in fact the multidisciplinary team found very little expression of Asperger symptoms... mild OCD tendancies remain and some ADHD as well..... very pleased with his progress".

    To be honest my first reaction was resistance. I felt really threatened. And it took me a minute to understand why. My first reaction was that they were trying to tell me he had been misdiagnosed. That once again we were hanging in the wind. And then I thought, that's not it at all. 18 months ago I sat in a multidisciplinary team meeting where they told me without a doubt that my son has High Functioning Autism, Asperger's. When I asked if there could be some mistake, they said "listen, if we had missed him in one area we would have picked him up on the other eight! " We were diagnosed at the Autism Centre for Excellence in Alberta.

    So what happened? Guess what. The diet works. The fourty pills a day helped. To all the professionals that told me I had my head up my .......this is for you. My son is one piece in the puzzle. Once single piece. But I have proof. And he is dressing up for Halloween, asking if he can help me in the kitchen, asking if I am tired after work!!!! He is making huge progress and he can see it himself.
The last year and a half have been like a science fiction episode! We have made the jump to light speed and the progress has been at a speed that has outstripped anything we did in his first 11 years. And more than that, he is happy for the first time in his life. His brother has become his friend, he is doing amazing at school ( honours in everything you can get honours in) and he understands himself. He believes in himself. His favorite character is Sheldon on "The Big Bang Theory". He is Sheldon on the Big Bang Theory! My hat is off to the television industry for helping us bring humour and awareness to this issue. It is so helpful when ordinary people can have an attachment and compassion for a character like Sheldon. It translates in a very real way into my son's life.

     We have a long way to go but today's message is don't give up. Try whatever you feel you have to try. The professionals don't have all the answers, so don't give up when they tell you there is nothing they can do. I have a medical background and I am telling you we do not know everything. We know as much of the puzzle as we can see today. And sometimes the more we uncover, we realize that the white piece we thought was snow was actually part of a big cloud, or a daisy petal. Sometimes even when we are sure we are right time reveals we have only had a limited perspective. Parents are the most persistant advocates these kids could ever need. Keep sharing your journeys, so that together we can piece together what works and offer hope and help to each other. Someday all of those pieces will fit together and we will be able to back up and see what this complicated picture really looks like. We will need to with diagnosis rates at 1 in 90. We will need to understand this soon because we are going to be innundated with cases. Autism is rapidly becoming a norm, and we need to know why.

    Question antibiotic use for every menial childhood infection. We know we are over using these drugs. We want instant results, but at what cost? As a dentist we have almost eliminated antibiotic use except in situations except severe infections and limited coverage for Heart and prosthetic valves and joints. We do not give antibiotics for every little issue. We cannot continue to ignore the evidence that is mounting that we were doing more harm than good. If we continue as we have, soon the bugs that we need to fight will be resistant to the drugs that we have and then we really will be in trouble. And if we overuse them in kids, we may, and I say may at this point be tipping the scales towards more cases of autism by changing the bacterial colonies that inhabit our kids digestive systems. We are complex organisms and we need to act responsibly with our bodies. If not, it will be like introducing rabbits to New Zealand, an island with no natural predators. Our actions all have consequences and sometimes we cannot see the outcome until we are overrun with rabbits. We need to think ahead.

     My reaction bothered me for several reasons. At first I thought Munchaussen Syndrome. Do I need him to have Autism? Shake my head. I think it was again about feeling invalidated. I didn't want to read one more person telling me I had it wrong. It has been a long fight to get here. And I realize in the same instant that I don't have to fight anymore. I know where we have been, and I know where we are going. No one can tell me what this path has been because no one has walked it but me and my family. I am getting passed the anger and the frustration, and perhaps that is the first stone on the way to acceptance.
Instead of resistance I am going to choose to feel joy and feel proud of how hard he has worked and how far he has come. My boys are my hero's every single day. Today was just a day to celebrate!!!!!!!!!!!!

   In love and light,
Kathryn

CBC special on Autism- The Nature of Things

2011-12-11T11:22:00.000-08:00

    Thank you to all of you who facebooked me about this program, especially because I am not much of a TV watcher and as such I would totally have missed it! Any of you who did miss it can still catch it if you go to the CBC home page, select TV and then The Nature of Things. It will lead you to the link for the Autism special and you can watch it online.

     I sat quietly at my desk watching it Friday after work with my partner Clair behind me who also has an autistic son. In my office, there are three of us including one of my Assistants. That alone is kind of stunning. In the entire population, out of 21 of us, three have autistic children. We both were totally engrosed in the statistics. One in 90 children now. One in 90.

    There was a fascinating correlation between the incidence of antibiotic use ( we suffered through a long period of ear infections with my youngest) and our north american diet which correlates with everything I have experienced with my own children and their intestinal issues.

    The most stunning discussion for me was around the four year old boy who regressed after multiple courses of antibiotics and when his mother started to try to research without any medical background at all, what could have been the cause ( doesn't this sound familiar to all of us? ) when all of the medical establishment is saying "it just happens". This is a testiment to the courage of parents who have children with this issue. Thank God we don't just give up and accept the status quo.

        The link between changes in their intestinal flora, which correlates with the all of the research that I have done over the years and in fact the discussion about Clostridium spores. The interesting thing is that in dentistry we learn about this in a whole different arena around use of an antibiotic called Clindamycin. Clindamycin use, can in some patients result in such a change in the intestinal flora of a patient that they end up with an infection of Clostridium Difficile which is exceedingly hard to kill. The four year old boy they treated got remarkably better when treated with Vancomycin, but the issue was that Clostridium persists in spore form and spores are almost impossible to kill. It is why we use them to test the efficiency of our dental sterilizers. It takes the intense steam and heat from the sterilizer to kill them. But how, can you kill them inside a small boy? When they discontinued the use of the vancomycin, the remaining spores germinated and he regressed again. It was heartbreaking to watch, and yet it made so much sense.

    Everything I have read about neural development talks about the importance of timing. That in fact we are born with millions too many connections in our brains, and that growth and development are in fact a process of pruning, not adding connections. We shape and reduce them to create meaningful pathways. If we miss the timing on those things they are gone forever. I remember a discussion at the Autism conference last year about handwriting teaching in schools. There has been a myriad of research that proves handwriting is governed by a section of the brain that develops around 5 years old. With preschools now pushing printing at three and four, what happens is that a non- specialized area of the brain tries to take over handwriting but isn't equiped to do so, and when the right part of the brain develops ready to do it, the lesser part of the brain is already attached to that. So the part of the brain that is designed to do that function properly never does. And the acquisition of handwriting will always be less perfect than it could have been. This applies across the board and yet we ignore the experts and keep pushing our kids when they are not ready to acquire these skills. When this young boy was treated with the Vancomycin he was young enough that he was able to acquire some skills and when he regressed he did maintain them. They caught a small window in his neural development.

      There are no perfect answers about Autism. No cure alls. We need to keep asking the questions. Keep the dialogue open and not be so quick to dismiss ideas when they come up. This is quickly becoming a cultural epidemic and we will suffer the consequences of ignoring this issue as an entire society. These children need our help and as parents we must keep looking, keep searching for answers to reach them. For what I know from my learning with my own son, there is an amazing human being in there. Someone who has travelled a different path from my own and has many lessons to share with me. He counts on me to keep fighting this battle for him. To keep the discussion open and find answers to the many unanswered questions.

      We speak for those who cannot speak for themselves. Thank you to CBC for running this program.
It is one view and hopefully through increased discussion and research we will find answers to help these children. I am confident that this is such a complex multifactoral issue that there will not be one bandaid for all. We are complex biochemical beings. There are no easy answers.

In love and light,
Kathryn

The Art and Science of Discipline

2011-11-20T08:04:00.000-08:00

Let me start again by saying thank you for all the emails and feedback. Your questions make me look into my own process and organize my thoughts. That alone is very helpful.

   Discipline. Difficult to be consistent with under normal circumstances. How do we approach it with kids on the spectrum?

   Let me start with a little story about how this all started. I realized that my youngest sons understanding of the world was somehow "different" when he was about three. I was having all sorts of trouble disciplining him, where I had none with my older son. Being fairly academic, I bought a book. I decided that I needed another approach. The book I bought and read was called "1-2-3 Magic". Very simply it is about classical conditioning. Don't talk a lot. They do something wrong, you immediately and quietly take them to their room for a time out equaling the number of years old they are ( minutes that is). So one Saturday that was what I did. All day. By the end of the day I was a weeping mess and so was he. There was absolutely no logic for him in this process.

    You see " 1-2-3 Magic assumes that children who are misbehaving have some idea what the right behavior looks like and just are choosing not to do it. Knowing my older son, I would say this is pretty accurate. For my youngest however, life is a series of random events. He was not born able to intuit social norms the way the rest of us seem to. They don't absorb through his skin. So each and every time he had a time out he would come down and try another totally random, equally wrong option. It was exasperating and there was no learning for either of us. It started me on my quest for a diagnosis.

    Within a year, we saw a psychologist who explained to me that he had a "social intuition disorder" which actually doesn't exist as a diagnosis. We know that now. It was Asperger's without the title. But the advice he gave me, worked. These kids have so much anxiety when they are small because nothing makes sense. It is all random. No rules, no patterns evolve for them. It is very, very hard. "Start small," he said. "And always start with, I am not mad at you. That was just the wrong behaviour in this situation. This is what the right behaviour looks like. Let's practice that again." Patience is the key. And repetition. In my sessions with him, he explained that if their intellect is sufficient, and my son's was very high, they can learn all these rules like the rest of us learn times tables. It has been a process of stacking blocks of understanding , one upon the other until they begin to take shape in his mind. Don't look too far ahead. Stay in the moment. If you look to the future what you need to accomplish will look like trying to build a pyramid with a pair of tweezers. Just take one moment at a time and be kind to yourself. When your child suddenly understands that you see them, everything changes.

     I remember the first time he looked in my eyes and saw that I could really see into his world. It was like all the pain he was carrying around inside his little soul was released. He could breathe. His anxiety decreased almost immediately. It strengthened our bond beyond words. He trusts me absolutely. Don't get me wrong, we still have our struggles, but beneath that, we both know what is true.

     The other night he walked into the kitchen while I was cleaning up and he kind of nudged me and gave me a big smile. " You know, I am soooo a Momma's boy aren't I? "he said , "That's good right? "
I laughed. Your wife might feel differently I thought to myself, but we'll work with that when we get there.
"Yes" I said, "That's really good!" and I hugged him with all my might. Almost six feet tall now this Momma's boy.

    The irony of life is that he attends a social skills group once a week and the book that they follow is - You guessed it, "1-2-3 Magic". That knocked me on my ass laughing. I have come full circle. But now, there is a foundation and he is able to understand the way the rest of us do. The group is full of teenagers and has been helpful in learning to read the body language of other people. Teens are especially critical and especially cruel. We needed some help.

     The other thing that helped me was that these kids have "areas of special interest" otherwise known as obsessions! Things that are more important to them than anything else. You can very effectively start to use threat of withdrawing those things to mold behaviour once they are old enough to understand.

      I hope this is helpful! And thank you again for reaching out. Anything you are struggling with, any questions you have, if I don't have an answer I will find one for you. Thank you for reading and sharing my journey.

In love and light,
Kathryn

Snowflakes

2011-11-19T10:38:00.000-08:00

   Snowflakes. They are a symbol for me of perfection in the universe. Crystalline, clear, pure, and not two that are the same. ( Really, I am curious how they know that, but that is just my busy mind ).

   I am sitting here this cold winter morning, watching the snow fall out my window as the wind blows it around in my back yard. My mind and my heart are full.

   I received a short email this morning from a reader that touched my heart. She only wrote a few lines, a brief thank you for sharing this journey. Sarah, thank you for listening. I was checking my emails and didn't recognize your address. I sat for a few moments reading and then I put the phone down and just let the emotion flow through me. I forget sometimes that there is anyone reading this. It feels most nights like it is a conversation between myself and the divine. A way to check in and let anyone up there who is watching or listening know that we are here, and that we are okay. When I started this blog, it was a way for me to feel less alone in this experience. I couldn't stand the thought that even one family would have to survive what we had been through and end up feeling like there was no one out there who could understand.

    Children on the spectrum, of which I have two, are very much like snowflakes. Each unique in the challenges that they present with, pure in the sense that they are somehow different, set apart from this world in various ways. Clear in the sense that they often don't understand the ways the rest of us complicate things with language or white lies or omissions, or what we pass off as rules of social engagement. Each singular in the beauty they possess, and in their special gifts and talents.

    Those of us that have been asked to raise Indigo children are on a unique vision quest. For in the journey there is as much to learn about who we are as about who they are. We do not create children and what they become, even when they are not on the spectrum. We water a seed. We guide it's growth, but what that seed becomes is reliant upon what the seed knows it is. You cannot grow a watermelon from a rose seed. Nor can you tell from looking at a seed at the beginning what it's potential is or even what it will grow up to be. Thinking we know that is an illusion, even with neurotypical kids. So really what we are asked to do is stay present. Leave worrying about the past or the future behind. To live in the moment with open arms and surrender to what is. To acknowledge how we feel when we feel it, but not judge those emotions as good or bad.

    My children are very high functioning. I do not have children that struggled with language skills or basic living skills. My hearts go out to those of you who have. Any time a parent realizes they have a child that has some sort of challenge, the grief and suffering is the same. All any of us knows is our own experience, what we have had to confront ourselves on our own journey. To have a child labelled as "other" or " challenged " is very difficult. We must remind ourselves that no one knows the future for their child, special or not. We must be careful not to limit them with our labels. And then confront the absurdity that we needed those very labels to get them help. I try very hard to explain to my boys that there are no limits. That we simply need to find different doors. If one doesn't open we will just keep walking until we find one that opens for them. We just need to be creative, that is all. To be open and willing. To allow their lives to unfold without resistance. To approach what comes to us from a place of growth and love, instead of reaction.

     Our quest in each moment is to have faith that we are on the right path. That if we stop struggling so hard, the people we need will simply show up when we need them. That if we keep walking forward, we will arrive where we are supposed to arrive. Hope lives in this house. Hope lives in my heart.

      Thank you Sarah for the gift. You planted a small seed in my heart today.

In love and light,
Kathryn

Gratitude

2011-11-19T00:28:00.000-08:00

    Just an update on where we are since it has been a while since I have been compelled to blog on this topic. I am sitting quietly by the fire tonight after an evening of laughter and discussion with one of my dearest friends and I am filled with gratitude for all that I have in my life. Especially my wonderful boys.

    I think of the path we have walked in the past year and a half since diagnosis, and really, the path that has been ours since their birth, and I am quietly overcome with the significance of their having been given to me in this life. Not a day has passed that I have not questioned whether I will be able to do enough, to teach them what they need to learn to survive. The importance of the roll I have been chosen to play sometimes feels overwhelming and there are moments I feel very ill equiped.

    They are both in private school now doing exceptionally well. We had on the last report card six honours subjects each. But that doesn't really tell the whole story. The fact that moving my youngest up a grade because there was no grade six class and they felt academically he was up to the challenge ended up putting him in classes with his older brother part time due to the small class sizes. That this changed his status in our house from odd little brother with "challenges" to "peer" and even "friend". How a lonely little boy who had trouble fitting in, had his world dramatically change because his older brother's best friend took a "big brother" interest in him and never left him out. Both of my boys are walking taller, wrestling each other, sharing jokes and interests. They are quietly best friends ( though both would deny it if asked! Just like brothers!).  When they come in at the end of the day joking and laughing about what happened at school my heart squeezes in my chest as I watch them together.

      My oldest is tall and gentle with a sharp sense of humour and an incredible kindness to him. He stalks me around the kitchen as I am trying to make dinner saying "hugs". Normally I am ducking and weaving shooting comments like "come on buddy or we are never going to eat! " But I am reading a book right now that is reminding me to stay in the moment and in the car on the way home the other day I looked at him and I told him that one of the things I love the most about him is how affectionate he was. I promised that from that moment on I would stand still when he needed a hug, not try to wiggle out of it and just enjoy the fact that I was lucky enough to have a 14 year old son who actually wants to hug me!!!! He couldn't stop smiling and he reminds me now several times a day I promised to stand still!

      At Halloween, they both went out, but it is my youngest that is still big on trick or treating. My parents love to see them dressed up so we closed it down at home when the kids stopped coming and headed out to their acreage. My dad and my youngest disappeared and were gone for an hour and showed up with an entire pillow case full of candy giggling like a couple of kids who had just pulled off the greatest caper in history. They had a ball together. On the way home, he said from the backseat how he was almost too old to trick or treat anymore, but he really couldn't help it because Grandma and Grandpa make it so darn fun. He asked if he could use my phone to text them to tell them that. In the darkness that filled the car, with tears in my eyes that he couldn't see I handed him my phone and thought about how very far we have come. He is starting to think about the feelings of other people. For a person with Asperger's, this is huge progress. He is learning how important it is to tell people that what they do makes a difference to him. He is learning more of these things everyday. I realize I want to be better at doing the same. We are not so very different. It takes courage to share with the people you love exactly how you feel in the moment without feeling shy about that.

        I remember early on feeling very hopeless and very alone. I don't feel that way anymore. In fact I feel blessed and lucky. The lessons these boys teach me every day make me so very grateful to have been given such compassionate teachers. Such gentle souls. We are in a good place, and we have each other. I look forward to the future as I have never been able to before where they are concerned, not as an enemy or something to be fought through, but instead as a bringer of mystery, of possibility and finally of hope. We speak openly and honestly with one another and we work through issues when they come up the best we can. And as they get older the possibilities and understanding get deeper and wider and the relationships we are building stronger with every moment we share, every difficulty we manouever through.

        A dear friend who was doing a reading for me, said something that affected me profoundly. She said you feel tremendous guilt about what these boys deal with, as though it were your fault. They both chose their incarnations, as do we all, because there were things they wanted to learn. And the truth of that is, then so did I choose this incarnation, because it was what I needed to learn as well.

         Gratitude is about being grateful for all you have been given, and I can honestly say that I truly am. My cup runeth over and my hands are full of blessings. I wish you all the same.

In love and light,
Kathryn

Costumes- The Masks We Wear

2011-10-31T22:09:00.000-07:00

Sometimes the simplest moments give me the most profound epiphanies.

Halloween is a Big Event in my household. We are all a little nutty and there is nothing we like more than dressing up on the 31st. This year we had a myriad of Halloween Events to attend.

Both of my kids are enrolled in a Leadership In Training Program at the YMCA. Their mother's misguided attempt to make them morally responsible citizens. Anyway. Last weekend they put on a huge Halloween party for all the kids at the Y. They dressed up and manned booths for events like pumkin bowling, hauted houses, touch this gross thing that is supposed to feel like eye balls, you know.

It was about 5 hours long and at the end of it I went to pick them up and they weren't quite done. We were meeting my mom for sushi and so they agreed they would walk across the parking lot when they were done and meet us.

   They stumbled in giggling their heads off and my oldest says of his brother "He is like dancing Dan, that guy in the west end who dances on the corner! People were waving, honking! "
And my youngest started to demonstrate his moves with a big smile on his face in his stretchy green suit. Who is this confident young guy and where is my shy son? Both of them had a real sense of mischievious fun about them. They were in their element.

   My oldest had a great costume he got off the internet that made him look older and very handsome and confident. He looked good and he knew it! My youngest carried his banana costume to school singing the peanut butter jelly song and I laughed to myself.

   Sometimes we are more ourselves in costume than out. Behind the mask we can be silly, fun and confident. Something we should practice more often. Laughing at ourselves!

In love and light,
Kathryn

Why Can't The Walls Be Transparent In This Place?

2011-10-18T10:39:00.000-07:00

Okay. Sounds like an odd title I know. But let me draw you a funny picture.

   So we are having problems right now with my twelve year old and some of his behaviours. Two of such behaviours are related to hiding garbage and toilet seats. Now some of you are already laughing and about to enlighten me that this is teenage boy and has nothing at all to do with Autism or ADD, but wait...

   So the kids go on holidays with my parents to their float cabin out at the coast this summer. My mom tells me when they get back that she has found an odd behaviour occuring. My youngest will squirrel wrappers behind every door even if a garbage is within arms reach. And dirty socks go under the couch where you don't find them except for the strong smell that drags me in like a blood hound weeks later. My mom thought it was just related to her trying to discipline him ( sort of a flip Grandma the bird! as it were). Now the added complication is that we have a wonderful Nanny who is amazing with the kids. I had no idea he was doing this because she cleans it up all the time and he just continues to do it. Not a lot of learning going on there and he better get a good job because he is going to need her for life if he doesn't figure this out!

   Toilet etiquette is the other bain of my existence! And I know you are all laughing but really? Come on!!

   Now here is the catch. Autistic kids are like houses, as are we all. The wiring that runs connecting things is all covered in drywall. Now for most of us, if there is a wall and a plug, we pretty much can assume there is a wire connecting the two. Not for our kids. Sometimes there is a plug and a wall and there is nothing strung between the two. And without a wire, there cannot be a signal no matter how many times you plug that damn lamp in.

   There are moments I wish his house had transparent walls. So that I could see where there are wires and where there are not. My frustrations as a parent and my feelings of guilt and failure are so very tied to not wanting to punish him where he has no connections and not wanting to let him down as a parent where those lessons are teachable and the wires are connected, but perhaps underdeveloped.
It is an ongoing struggle.

    I have been divorced now for almost four years, and on Sunday night when he was leaving to go to his Dad's, he stopped and looked at me. With a kind of concerned look on his face he said " I feel guilty going tonight and leaving you all alone." You could have knocked me over with a feather. EMPATHY.
Where did that come from? Who cares. It's here. I smiled and told him I would be fine, and that I loved him. And that it mattered so much to me that he would think of me, and he could phone me if he was thinking I would be lonely. He smiled. And then it was like it never happened. But it was a spark.
There is a wire there even if it is one tiny thread. And that, I can work with.

In love and light,
Kathryn

How Much of This is Just Adolescence?

2011-09-15T11:51:00.000-07:00

   Welcome to the world of teenagers and hormones. Mix that with the world of Autism and ADD and we have a recipe for some fairly complex behaviour patterns!

   I am tremendously lucky according to friends. I have two amazing boys. Having been a teenage girl once long, long ago, I must admit, I am counting my lucky stars. But the complex period of adolescence takes on a whole nother twist when you are trying to ferrit out which behaviors are normal teenage "angst" things and which things are new hurdles to manage in terms of the spectrum.

   One thing that has been a long standing issue for us is the destruction of personal property. I have done lots of online research and apparently it is pretty common in Aspergers, but that doesn't make it any less worrisome or frustrating. It started when he was little. Small things that would show up broken, ususally not things of any significance but broken none the less. At first we didn't put two and two together. It is like what the cat does when it is mad at you. You go to the door and the cat has pissed in your shoe. Not your husbands or the kids, just yours. Once we figured it out we could correlate what had been broken with frustration towards a certain person. We have addressed it out in the open, but often it is weeks or months before we find the object and by that point there is no correlation in his mind between the event and the damage.

   The Apsie brain is an interesting road map, some areas have tons of wiring and others have none. I have blogged before about the seat belt issue. He can do 324 times 54 in his head, but he can't remember to put on a seat belt. There are a billion wires for math but none to connect the wires for seatbelt. There is no rhyme or reason for which are connected and which aren't. I only figure them out when they are not correctable. It is a slow imperfect, frustrating process.

    Recently we had an incident where a toque was fed into a vaccum and quietly put away without discussion. We made him give up the money he earned for his report card to pay to fix the vaccuum cleaner.
We are trying to make the consequences significant for him to try to extinguish the behaviour. He is constantly trying to earn money so we figured that might make some impact. There are not many things that really seem to have an impact for him.

    These things are frustrating and significant because to function in the world we must all use our communication skills. If I am mad at my boss and I feed his jacket through the shredder, that is considered vandalism and I will not only be charged I will be fired!!! I am trying to impress that words must be used to help others understand why and what you are frustrated about. That destruction of property is not an option. The price of doing this will be set high and hard. There is no other way to slam home this lesson.

    I feel like I walk a minefield sometimes trying to figure out which are real and which are dummies, and even when I think I have it figured out, there is really no way to be sure. How do we accomodate the things they cannot change, without empowering them to use being on the spectrum as a crutch? How do I encourage them to be motivated and self reliant without losing my temper over having to repeat every instruction a thousand times before I lose it and decide to use a visual aid? I wish sometimes they came with a wiring map.   A bit of an electrical blue print so that I wouldn't feel like I was on a brand new job site every day.

   The risk I see as a parent is giving them a "pass" for something they can actually do that they are pretending they can't. And the only way I know is history. How long I have been trying to diligently modify that particular behaviour before I give in. From the outside to family, it looks very non scientific. I agree, it's not.
I simply haven't found any other way to cope. And cope each day I must.

    I am certain that in many ways it is a similar if not the same process every parent must find to survive adolescence. And so, I carry on another day and hope not to find any other broken surprises at home.

In love and light,
Kathryn

An Update on Our Progress!

2011-08-30T11:17:00.000-07:00

Well here we are at the start of another school year! Where does the time go? The boys are now starting grade 8 and grade 9, and are anxious to get back and see their friends at Edmonton Academy.

We have had a great summer aside from the weather and a long one as the kids finished early June 9th. In order to side track them from 12 hour days of video games while we were at work we arranged some camps, a trip to Kelowna and a fishing trip with Dad and Grandma and Grandpa, and their cousins and grandmother from Ontario came to visit as well.

Golf camp was a big success funny enough! The instructors at RedTail Landing were amazing and patient and the kids thoroughly enjoyed themselves. In Kelowna they got the chance to do some tubing, surfing and wakeboarding with great friends of ours and strut their stuff meeting new friends in the process.

We arrived home and hit our first hitch when I decided to repaint the entire house. I had never put my mark on it when we moved in and now that our gluten free- casein free life had settled in and become routine, it was time. When moving furniture to paint, we came across hundreds and hundreds of the boys pills stashed under anything that wasn't glued down. If I could only tell you how expensive the stupid things were you would understand completely my moment of utter failure!!!! Heart failure that is! I sat down and held my breath for a moment. Suddenly it all made sense. The conversation with the doctor over the last set of testing and why he seemed perplexed that their levels hadn't changed. How could they with the pills in the cushions of the couch and under every coffee table! I was lucky our pets weren't becoming hyper sentient!!!

In that moment by myself with a handful of pills I stared and them and started to laugh. My God I couldn't take 40 pills a day even if it meant my life! How in the heck did I think the kids could do that?

I made a decision that moment that the pills were done. They had done so well on the diet and Ididn't want to lose that. So we compromised. And that was that. Do they probably still have some deficiencies? Sure. Would I if I was tested ? Probably. In the grand scheme of things, we do what we can manage and call it a day. We added back all the food that had been taken away except the gluten and casein and the boys are eating better, happier and finally putting on some healthy weight for their heights.

In the end I am still finding their stashes. I stop for a moment and think about what wonderful boys I have and then scoop them up and into the garbage. My house however, has never been cleaner!

Sometimes it is about finding balance. One footstep at a time.

In love and light,

Kathryn

Unbelievable Frustration- How Can This Be In Alberta?

2011-06-23T07:33:00.000-07:00

   I have to vent my energy around this today. Normally I try to see the upside of most situations. This morning I am so angry I could scream. Yesterday, the third person in my office had their child officially diagnosed with Autism. And for the third time, I heard exactly the same scenario.

   "I am very sorry to inform you that the completion of your testing has revealed to us that your child has Autism. Here is our Welcome to Autism package and at the end you will find a lovely reading list. Good luck!"
    That's it. Welcome to the club. No assistance. No here is where you go for services, let's get you signed right up! After three years of trying to get this diagnosis I am sure you are anxious to get started!

    When she told me, it was like a PTS ( post traumatic stress ) moment. I wanted to escape. I actually sat and cried in the car on my way home. How could this be what happens to people in a province with a Center of Excellence for Autism? How hard could this be? I don't diagnose cavities and then send people out the door saying "good luck! Hope those don't get too bad for you!" NO! We tell you what types of fillings you can have, what they cost, how long it will take to treat you and we book you. That is called diagnosis and treatment.

    We seem to have an exceptional diagnostic arm ( once you actually find your way in- which in our case took 8 years of digging and begging) and an amputated limb on the other side. No treatment other than what you can cobble together.

     In January at the Autism conference in Edmonton there was a parent conference on the last day. Experienced parents who stayed behind to share their stories and help the rest of us figure some of this out. I stood up at the end, and I couldn't help it. Half way through my question I was standing exposed in the middle of the room feeling like a total idiot, bawling, so emotional I could hardly choke out the words. Where do I go from here? How do I find help? Five parents in the room told me that I was not alone. One set of parents had non-verbal twins. They too were told the same story and given the same damn reading list.

    There is an Autism Follow up clinic. The name sounded promising. When we called they said, no, this is actually a misnomer. We don't follow you up, we are just here in case you have a specific question. Actually, I have a thousand questions. My child has just been diagnosed with Autism!!!!!!!!!!!!!!!!!!!!!! The family with non verbal twins told me that it takes the average family two years to sort things out, find a connection, funding and services on their own or with help from other Autism families. What about two parent working familiies? Who sorts all of this out and does all the research to figure out where to start?

     Sometimes these moments bring incredible clarity for me. Anger and chaos roiling in my gut may just birth something worthwhile. This cannot continue for the families and children of Alberta. We need to create some sort of safety net as the numbers of these children being diagnosed is escalating. These families need help and more than that, they need hope.

In love and light,
Kathryn

February 20, 9999

2011-06-17T11:00:00.000-07:00

   I came home tired from work last night to be faced with another "learning moment". I had to laugh. There was no other option.

   My oldest son came up the stairs about to disolve, explaining to me that he had asked some online guy for help in his game. Upon receiving said "help" he instantly received a message on the Xbox saying he had been banned from Xbox 360 until February 20, 9999. Without laughing, I had to agree that was a pretty long time. He would be gone long before that deadline expired. We sat down and I asked for the accountable version of what happened. He explained that there was another character on line who had something he wanted. He asked the guy how he got it and it he could help him get one. He claimed he had no idea what he was asking was against the rules.

    The Xbox people of course were not helpful and told him via "no reply" email, there was nothing they could do. I was in a rush to go to an obedience class in the thunderstorm that I was late for because one of my partners ended up with an abscessed tooth. My son looking at me in complete meltdown mode and I am totally without any ideas. This is not my area of expertise. In fact I am completely useless at gaming.

    " Log on and find a phone number and an email address, call while I am gone or email and explain exactly what happened. I will help you when I get home." And with that I had to go.

    By the time I got home, he told me he had found the information, emailed and they told him there was a chance that the decision would be reversed. We had a full conversation around " you never get something for nothing" and the consequences of that are sometimes pretty tough to take. Tough way to learn a life lesson when as a teenager your whole life revolves around these games, but as a parent, it did hammer the lesson home in a way that few other things would. This part I am good at. The lesson stuff!

     We await the Xbox people's decision and hope that this will be one of those times they make an exception and allow some learning to occur. God our generation had it easy didn't we? There was at least a bit more slack somehow to learn lessons with one get out of jail free card. Doesn't seem like it so much anymore!

In love and light,
Kathryn

Technical Aspects of Asperger Holidays !

2011-06-05T21:30:00.000-07:00

    There are a variety of things we have to consider that just don't even factor for other families. I alluded to the food. Where in South America, am I going to find Gluten free food? Or how about the physical aspects of hiking the Inca trail? The steep drop offs, and the height of the rise between the steps or the ten thousand steps themselves, is a bit of an issue for a kid with gross motor struggles.

    We are going with Gap Tours, and these are things I never even thought of until my parents came over for dinner. We were talking about the trip and my mom noticed that the option I had picked was rated a 4 out of 5 on the physical scale of how hard it would be and what shape you needed to be in. I somehow missed that! She explained that family friends of ours had done the Inca trail and they are both in fantastic shape and described it as "challenging". Which would translate to "damn near impossible" for me and two Spectrum teens.

    I want the trip to be fun and amazing, not difficult and terrifying! We looked further into the other trips available and found the perfect one that combined a cruise of the Galapagos Islands complete with zodiac trips on shore and guided walks ( totally doable) and the flight and train ride up to Manchu Pichu with hotel stays instead of five days of walking uphill and camping about (15 km at high altitudes per day). Parents can you translate that into how many meltdowns could be expected over 75 km of hiking? LOL? Kill me now!!!

    Anyway, thank god for the presence of mind of parents who see things we miss! The kids have done such and amazing job in school this year and with the crazy pills and diet that I think we can manage to avoid bread, cheese and flour for the most part to see this amazing part of the world. We are getting to be pro's. We've got it down to a fine science. A meat, fish or chicken, rice or rice pasta, fruit and veggies and eggs. They must have all those things in South America! Red beans and rice here we come!

    Just the chance to see all that amazing wildlife before human beings do something else equally stupid like dump more radioactive water into the sea and jeopardize these incredible animals. Maybe by educating more kids about what happens to our food chain when we make decisions like that, we will save ourselves from extinction some day.

     And Manchu Pichu, well , what more can you say? One of the most spiritual places on the planet. Perhaps a place of awakening. Definitely a place I am called to. What impression will it make on them, I wonder.

     I can't wait to start planning the trip in more detail,

In love and light,
Kathryn

Manchu Pichu and the Galapagos, 2012

2011-06-05T21:01:00.000-07:00

   I am planning the trip of a lifetime with my boys. It has been on my vision board for the last five years and now I am making it real. It started out as a trip just for me, but little by little it has become a family topic, and now it seems it will be a trek for three! Don't ask me about the gluten free part yet. I am not that far along yet. I am leaving the "how" up to the Universe on that one. Goat is gluten free, isn't it?

   I wasn't sure that the boys would be interested in Manchu Pichu, or the Galapagos Islands. Neither destination has much to do with Playstation 3 or Xbox 360! I have decided to make this year about exploring myself and my world. While I was pouring over guide books and travel magazines I would often look up to find someone pouring over my shoulder. I finally looked at my oldest and said "What do you think? Wanna go with me on an adventure?"
"Really?You bet! I'm in!!"

   My youngest son's reaction was a bit more humerous.
"Hmm. Let me give it some thought."
Then he sat down on the couch with a book of lined paper and a pen.
"What are you doing?" I asked.
"I am making a list of good things and bad things."
Good things and bad things? Things about the trip of course. This kid is endlessly creative.

   I sat two feet away on the couch, grinning to myself trying not to let my amusement with his process get away on me. Finally he finished and said " They are equal. Six and six. I am going to have to tell you later if I can go. I could stay with Grandma and Grandpa right?"
"Yup."
"Okay, I will give it some more thought."

   And with that, he put down the list and went to study for his finals. I picked it up and read what he had written on the page. Two neat columns. At the top GOOD and BAD printed with a line underneath.

In the GOOD column, was the following:   In the BAD column was the following:
          Endangered Species                   Canoes ( are canoes bad?)
          Architecture                             Hot ( maybe just a bit it is South America)
          Sights                                       Long ( well two and a half weeks with mom)
          Sounds                                     no Xbox 360 (true enough)
          Learn about nature                Bugs ( yes, might be a few Jurrasic park sized ones)
         Activities                                bad things can happen ( what does that mean?lol)

   I was laughing so hard I was crying! Honestly what a gift my boys are. My oldest would follow me to the ends of the earth and my youngest would, but only after making a list of pro's and con's. Loyalty and creativity. What a dynamic duo. We are going to rock the continent of South America June 2012 baby. The three amigos!!! I can't wait to share this amazing journey with my two favorite guys,

   In love and light,
Kathryn

Aspie Mood Swings- Hormones or Symptoms?

2011-05-22T23:27:00.000-07:00

   I have had a special request to talk about mood swings and Aspergers. Depending on the age of your child it can get very difficult to decide whether the mood swings are related to early pubescent hormone changes, bipolar disorder, or whether they are actually related to the Asperger's itself.

   The dear friend who has asked me, has a nine year old daughter and so early puberty is a bit unlikely. But the mood swings are definitely apparent. The other day when her mother asked her to do something she got a full "hhrumph" and a some real attitude and eye rolling which was a new occurance. She has told me one of the things she has always noticed about her daughter is that she seems " not to care" about much of anything.
She does have some special interests, but when asked by her siblings what she thinks about something she often replies "I don't care".

   Mood swings in Aspie kids are quite common and when negative are often related to changes in routine, sensory issues or some sort of disruption. It can sometimes feel like they are a bit bipolar. They can swing from giggly and cuddly, laughing at all sorts of things that are inappropriate, into a total funk, almost a depression. True bipolarism is exceedingly rare in children and cannot be controlled by a change in topic. A way to test this is when your child is behaving in a depressed manner, try talking to them about their special interest. Someone with Asperger's can be turned very quickly from depression to "giddy" simply by engaging them in this manner. You cannot do this with someone bipolar.

    Some people with Asperger's do end up taking medications or mood stabilizers to help with this, but it seems to me as a parent watching my own son, that a lot of it can be managed with careful attention to schedules, trying to give enough warning of change, and the occasional simple changes of topic. Glorified distraction techniques! Hey! Look over there! I think I see some Lego!

    An increase in mood swings would be an indication that your child is experiencing stress or overstimulation in some area of life, often at school. They are very sensitive to energy and expectation and if in a conflict situation with a teacher or authority figure they can get very upset and start acting very unpredictably, and in fact their normal Asperger symptoms can become way out of proportion to what you normally see.

    They can often be quite exasperated with the rest of us, whom they perceive as quite non-logical! Being highly logical and rational and often very literal means that when dealing with neurotypicals, they are a bit like Mr. Spock, except not so emotionally controlled. They watch our behaviour with an air of detachment except when it confounds what they want to do! Then it becomes an exercise in frustration and they have trouble disguising their feelings.

    My son is twelve and we are now starting to experience more mood swings that seem related to puberty. The main factor again is the unpredictability of neurotypicals. We make no sense. More so as adolescents. They are all trying out what kind of people they want to be and what behaviours they want to exhibit. None of it makes a lot of sense so imagine watching that from the perspective of someone who finds human behaviour confusing at the best of time. Adults are at least fairly predictable. Kids are not. I do expect that this causes him a lot more stress and the fall out of that is a lot more confusion and frustration.

In love and light,
Kathryn

The Divine Goddess Journey

2011-05-18T22:10:00.000-07:00

Well, this is a bit off the track of autism, but it is my journey and a very worthy blog topic so here goes anyway!

So in the middle of some fairly major life changes for me, the opportunity came up to take a workshop on Divine Goddess Energy and the exploration of the Feminine Divine. Tonight was the first night. I know some of you are already laughing and picturing hand mirrors but that is not what this was about. The facilitator started the evening with the discussion about yin and yang energy. Both reside in all of us whether we are male or female. Yin energy is female energy and yang energy is male. To be balanced is the ideal, as the black and white symbol we are all familiar with shows, the circle must be half and half. The world today is somewhat out of balance in our yin energy. To encourage expression of that in all of us would go a great distance towards healing where we are in the global sense.

   We did some guided meditation about our own beliefs around sexuality and sensuality and we did some creative movement and dance. It was interesting to observe where I got stuck, which parts were easy and the emotions that came up around them. There were a lot of insights that were really helpful about my beliefs about myself. Which things are truly me and which things have been imposed upon me but do not belong to me.

At the end she gave us a small gift. A silken pouch full of special things. We were to pick one without looking and trust that what was in it was meant for us. I chose the orange one, not because I like orange but because the divine feminine for me is all about the second chakra which is orange. I opened the bag and inside was a goddess necklace for the goddess of water.

   Water is a huge symbol, a recurring symbol in my life. We have had four major house floods, and I am very connected to the image of life as a river, and the flow, not going against the current. The card speaks about the water goddess being constantly in motion ( sound like anyone you know) and being full of depths, darkness and currents only she knows. She mirrors every woman. Her body is home to millions of beings and she in part lives through them. Although she is whole herself, she absorbs light and air within her fluidity and thus nourishes all things. It is beautiful.

The scent included was to nourish the green or heart chakra, an area in which I am truly in need of healing right now. The message was perfect. It said Compassion, Self love and Emotional stability. Clears up any chest congestion ( how did it know I have bronchitis) connects you to compassion and self love, opens you up to give and receive. Those of you who know me. know that receive has been an area of challenge for me for a long time.

    Interestingly enough in terms of sexuality, the divine feminine is the archetype for receive. We are the chalice, the container of all life, the receiver. So perhaps as always, I have found myself once again in exactly the right place. Thank you to the universe for arranging it all so nicely. Our homework ( and yours should you choose to follow) is to spend seven days exploring all of the senses, smell, sight taste, touch and sound. Reawaken our ability to feel and sense the world around us. Reawaken to the beauty and the sensuality of every moment.

   This workshop is four Wednesdays so tune in if you are interested and I will do some off topic blogs to celebrate the process.

In love and light,
Kathryn

The Invisible Disability

2011-05-16T11:03:00.000-07:00

If you are missing an arm or a leg, people can tell there is a problem. If you have a crutch or a cane, accomodations are made. What about if you have a disability no one can see?

I was speaking to a collegue, who was asking about my kids and how they were doing. He said he could so sympathise as he had just dealt with a family whose son was considered very autistic, and had a discussion about the issues that they face with this little guy. The most difficult thing was the attitudes and comments from complete strangers. They had been travelling by air, and their son went into a complete meltdown as our kids are sometimes known to do. As any of you with an autistic child know, there is no reasoning with them. The best we hope for is that they exhaust themselves and run out of steam. Sometimes the more you interfere the worse it gets.

   People were telling them to get control of their child, making rude and cruel comments and they basically wanted to fall through the floor. Their stress level was at about a 10 anyway and the jeering comments fell upon them like hammers. An already difficult situation now a humiliating one.

   I have many experiences over the years that were very similar. My added complication was kids that were 98 percentile for size. People expected them to act years older than there were chronologically and add the autism on top of that, you've got a recipe for disaster. It got me thinking this morning, about how we perhaps could preempt some of these issues by educating those around us in a quiet gentle way before we run into issues. A little understanding goes a long way and brings an invisible disability into the light. When people are aware, my experience has been that they cannot be helpful enough. Can you imagine yelling at someone who fell with a cane? Get control of your legs?

   Over the years I am developing thicker skin and a better sense of humour. And I am less afraid to tell people where we are at. And I am happy to say we have not had an incident like the one I heard about this morning in a very long time. But if my spider sense is tingling I do not hesitate to prep those around me about what may happen. I have yet to find anyone who was snarky to us once they understood the issues.

May we someday get to a place where we all learn to be more helpful than critical of each other.
In love and light,
Kathryn

Contracts of Forgiveness

2011-05-08T11:39:00.000-07:00

   Someone once told me that Autistic children actually choose their incarnation. The indigo children, the rainbow keepers. It feels true to me in my heart as in fact I believe we all choose our incarnations.

   A few years ago I came across a book called " The Little Soul and the Sun". It is a children's book, but as is often true there was far deeper meaning buried in the text. The long and the short of it is, that we are all little souls, perfect in the eyes of the creator. One little soul starts to ask questions about itself. It decides that it would like to be light. The creator says " but you are light, we all are". That puzzles the little soul. How to experience itself as light if we all are? Well says the creator, perhaps I could create darkness, and within that context you would then experience yourself as light.

   As the story progresses the little soul begins to understand that before we come to earth we all ask the creator to learn some specific lessons during our incarnation here. In order for that to happen, other little souls have to agree to interact with us down here, sometimes in a positive way and sometimes in a negative way.

   The little soul asks to learn forgiveness, but realizes that to do so, someone must do something that needs to be forgiven. Another little soul steps forward and says " I love you. I would do this for you. Only in the moment I smite you, I will have to make myself so heavy and so dark that for a moment I will forget who I am. You must remember I am also a little soul, for if you forget, we will both become terribly lost possibly forever."

The little soul is overcome. " You would do this for me? "
" Of course, you have done it for me many times, for such is the dance of life."

   We live our lives here in the context of many relationships, many joys and hurts. Think of how differently we could live if we only remembered that the people we are in conflict with, although they remember it not at the time, or perhaps at all in this life, have generously agreed to enter into contracts with us so that we may learn what we have asked to learn. Doesn't that change how you look at the person you are having difficulty with? May it fill you with gratitude instead of anger for the gift and the learning.

   In love and light,
Kathryn

Round Two of Testing

2011-05-04T21:31:00.000-07:00

   Well we are now four months into the supplements and B12 shots, and seven months into the diet. The B12 shots are given just under the skin every three days. These were not popular to start but the boys are finding them much better now. Ice cubes to numb the skin really help! We have just completed round two of all the testing, urine collection ( standard, as well as pre and post medication ), stool samples, saliva samples, blood tests that would make any normal kid cringe. We are hoping that some of their levels will have returned to normal now that we have reduced the inflammation going on in their digestive systems as a result of the diet.

   That would mean a reduction in the number of supplements they have to take every day and I have to tell you we are all praying for that. It is late, and it has become once a week routine to count out all of their pills into a daily labelled container for morning and night. It is challenging to fit all of this stuff in around the normal routine of getting everyone ready in the morning as you can all imagine. We are not perfect every day, but we do our best.

   My youngest is truly hoping that this round of testing will have eliminated the yeast from his gut, as well as the bacterial infection and the parasite. This stops him from being able to have anything with sugar in it. Simple things like agave syrup on pancakes. He is allergic to cane sugar, but someone recently told me that Alberta sugar is actually beet sugar! So I need to check up on that as it would make a big difference to baking. He is very thin and so we try everything we can to add a bit of weight to him ( tricky with no carbohydrates! ) I am fairly sure we have accomplished our goal as he has recently gained about 13 pounds which Dr. Hoffman said would happen once his gut was clean. His feeling was that he was not absorbing much of anything before.

My oldest is suffering through his pills every day as he has a very strong gag reflex. My cousin suggested straws would help and so we are going to try that. I have a feeling that in the end it is the diet that is the big savior for him. What I hope is that his other levels have returned and we can dramatically cut down his supplements. His brother tosses them down without water which drives him crazy. For him every pill is torture!

   One of the things I have had good success with in terms of adding a bit of weight on both of them is a product from Planet organic which is a smoothie mix with vanilla and almond powder. We mix it with an egg, a banana and frozen berries and it is a great source of protein and it tastes amazing.

   Well wish us luck, I will fill you in on the results as soon as we get them back.

Good night!
Kathryn