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

The Art and Science of Discipline

  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

   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

    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

  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?

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?

   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