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

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