January Autism Conference in Edmonton 2012

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

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

   The speakers on Friday and Saturday are as follows:

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

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

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

In love and light,

Kathryn
       

Bringers of Light

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

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

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

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

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

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

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

A Thread of Hope- It Is Working

    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

    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