An Update on Our Progress!

  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?

   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

   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 !

    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

   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?

   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

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