Halloween 2010

Jenn does up mini pumpkins or peppers for the front step (yes, that's snow on the car there):



Cosumes all made by Jenn. Featuring:

Alex wearing Nathan's Elmo costume:



Nathan wearing Alex's Captain Feathersword costume:



Jenn as Supermom:



...and Dave as Cookie Monster:

The Wiggles Tour, Ottawa 2010

Nathan and Murray compare wardrobes:



Jeff tries to disentangle himself from Alex:



Nathan is moved by the music:

Letter from Autism

(I found this on a mailing list. Our family has been exceptionally understanding and supportive, and for that all of us are grateful. (David))

Dear Family and Friends-

I understand that we may be visiting each other for some get-togethers this year. Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, I am challenged by a hidden disability called Autism. Autism is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt or silly and out of control, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities. Some may not speak, some will write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are ALL different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you – I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Get-togethers are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if I had a private place set up to where I could retreat every time I go to get-togethers.

If I cannot sit at the meal table, do not think I am misbehaved or my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people – I just have to get up and move about. Please don’t hold up your meal for me – go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not picky – I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.

Don’t be disappointed if Mom hasn’t dressed me in the best clothes there are. It’s because she knows how much stiff and frilly clothes drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear crabby. Things have to be done in ways I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things – just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self-regulation” or “stimming.” I might rock, hum, flick my fingers, tap a string, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, laughing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kinda like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverating behaviors are good to a certain degree because they help me calm down.

Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over-protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support and not rude remarks.

Gatherings are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person – an interesting person. I will find my place at these celebrations that is comfortable for us all, as long as you’ll try to view the world through my eyes!

-Author Unknown

Visiting with Santa and a new job

Yesterday was Nathan's Christmas party at preschool. He was doing very well with the crowd and the entertainment. We did have a bit of a problem in that the group doing the entertainment was obviously not used to very young children and one of them shouted at Nathan for touching one of the props. (For the record, it was sitting right in front of him and had been just left there). Nathan crumpled into tears thinking that he was in trouble. He settled fairly quickly with a hug from Mommy and the guy obviously felt bad and gave him a special set of sticks to bang on for the show.

Nathan was having lots of fun playing with the other children. In fact, he was having so much fun that he was very resistant to coming to see Santa and get his present. Ah well, he wasn't the only one in tears on seeing the big red man. :) Overall, I think he had a good time but it was definitely a little overwhelming and stressful for him. He's been doing very well with all the other Christmas preparations. Tonight we're going to try decorating a gingerbread house. I'll let you all know how it goes.

I've begun a new job which has me working some late nights. So far, I'm doing okay with it. I've discovered I'm still a natural night person and have no trouble with the staying up. It's the getting up the next morning that's a challenge. But that's why the gods invented caffeine. The boys are a little anxious about the change. Alex especially seems to miss me, which makes sense. I spend a lot of time with Nathan during the day and he goes to bed shortly after I leave. Alex is in therapy all day and then has a couple of hours after I leave. I miss them both but it is good to have some extra money coming in.

Hello, here we go, it's the Wiggles' Show!

We had an awesome time on Friday taking the boys to see the Wiggles in concert. They tend to do international tours every two to three years and so the timing worked out perfectly where both the boys love the show right now. We had three adults to take care of the two boys and I'll admit that I was nervous about the whole thing. Yes, they love the Wiggles and their music but would they get overwhelmed in the arena? Would they be willing to stay in their seats (as opposed to wanting to run on the stairs or try and get on stage)? Would Alex get upset if they played a song he didn't like? There were a lot of unknown factors but I decided it was worth it to give a try.

I could not be happier with how things went. They were a little bored with waiting but we let them wander around the arena, which made them happy. Nathan made several circuits, including right up to the stage. Avi bought them each a lightstick to wave around and a little plush Big Red Car. (The BRC was a big hit with Alex, he cuddled it throughout the entire concert.)

Once the first notes of "Toot, toot, chugga, chugga" started, Alex's face just lit up and he started jumping up and down in front of his seat with a huge grin on his face. He was singing along and dancing and it was just so wonderful to see. Nathan was a little more uncertain but he was just as excited. Both of them looked a little confused at first that the Wiggles were right there (as opposed to being confined to the TV screen). But they got over that pretty quickly.

The show was fantastic, a lot of acrobatics and they covered a lot of their classic favourites. My personal favourite moment (other than toot, toot) was when they did Twinkle, Twinkle Little Star and dimmed all the lights and had the kids waving their lightsticks and adults waving cell phones and a dim blue light sparkling around from a disco ball in the ceiling. It looked really beautiful and wonderful. I only have two very minor complaints. They didn't do a lot from the "Go Bananas" album, which is the newest one and has some real favourites of the boys. And when Murray and Sam came into the audience to say hi to the kids, they both were one aisle over from where we were, so the boys didn't get to say hi.

Alex actually watched Murray the entire time, tracking him with a hopeful grin. We had to hold on to both boys to keep them from running out to tackle the man. I feel a little guilty because at first he stopped at a large open area on the floor and several children approached him. I didn't let the boys go down because I thought he would come up right past us.

You can tell from watching them that they all really love kids and really love what they do. Everyone was having a good time. They took the time to read all of the signs that kids made and collected cards and flowers and pointed out the kids in costume. It really touched me to see how devoted they all are. And it was nice to see them doing some improvisation around the few mistakes that were made. It was very relaxed, very fun.

I made Wiggles' shirts for the boys, which delighted them both. I hand copied the Wiggles' logo onto construction paper and coloured it in. Then Mom sewed the paper to red turtlenecks that I had (I ran out of time so she graciously agreed to do it). The boys were very excited when they saw them. Alex immediately wanted to put on his "Wiggle shirt". He even asked for it again today but the paper didn't survive the night. I'll have to see about making some iron-on decals for them. Nathan even let us change his shirt without a protest. It's the first time in months that's happened.

I'm so proud of them and I'm so glad they had a good time. I know that there's a good chance that Alex will actually remember this. I hope so. Right now, I know that I'm the best Mom in the world in their eyes. And I think that it counts as their best day ever.

Alex asked today to go to the Wiggly concert and I had to tell him no, that it was just one day, a special occasion. They've both been singing the music all day and dancing around.

I don't know if I can express how much of an achievement this is. How badly this could have gone. It gives me a lot of hope and frankly, it was a rare occasion to share something that they truly love. A rare opportunity to make them happy. The sort of blissful happy joy that children are supposed to experience. This was a huge, huge deal and it means a lot to all of us.

The boys were getting a little bored by the end. Nathan kept asking to go on stage and looking at me with grave disappointment when I stopped him. His expression was almost "But my audience needs me!" Alex asked to go play during the final few songs but settled fairly happily when I told him that he had to wait until after the concert.

Another memorably cute moment was when Avi came with nachos. Immediately Nathan got up and switched seats to sit next to his grandfather, all big smiles. Avi graciously offered him some chips and showed him how to dip them in the plasticheese. Nathan wasn't impressed with the cheese but happily munched on the chips. Avi paused at one point to look around and Nathan stealthily took the chip right out of his hand.

I am so glad that we all had a good time. It's a memory that I'm going to treasure for a long time. And I'd like to take this opportunity to thank Anthony, Murray, Sam, Jeff, Paul, Greg and the rest of the Wiggles team. You have created something that delights my boys as few other things do. You put on an amazing show and it was our privilege to attend. Thank you all.

Cute Moment

I came in last night and Nathan was curled up sound asleep with his arms wrapped around the book "I Wish That I Had Duck Feet." It's been his favourite the last few weeks and he's taken to cuddling up with it just like a teddy bear.

I think I have myself a reader. :)

Newspaper Article and Walkathon

As some of you know, our family was profiled in the local newspaper. The article was very well done and presented a fair perspective. We were interviewed because of the difference in how early each of our sons was diagnosed and the differences it made. With Alex, there was such a lengthly period between first thinking something might be wrong and actually getting the diagnosis and then again before we could actually begin treatment (especially the publicly-funded treatment). I think that in some ways we lost some good chances, but at the same time, I know that we did the best that we could with the resources and information we had. Nathan got the benefit of our education with Alex. Now, to be fair, he also seems to have fewer challenges, especially on a sensory level. But he also had less time to retreat into himself and set patterns of behaviour. His progress has been much faster than Alex's. The article focused on that difference and was promoting a new clinic that promises diagnosis and treatment information much faster.

In other news, Nathan's preschool had a walkathon this weekend. It was quite cute to see all of the little ones, some in their school t-shirts over heavy winter coats and others in their Hallowe'en costumes. We met at a local park and walked around the duck pond. Nathan made three circuits, which I think is quite impressive for a little guy who isn't quite three yet. Dave took some pictures so hopefully we'll get some up on here so that everyone can see. Alex also joined us (it was the least he could do since he's an alumni of the same preschool) and he did a long walk along the outer circuit of the park with his aide. I had to stay put at the meeting place to collect people's pledge forms. I don't know how much money we raised but it was certainly a thick sheaf of paper, enough to fill both my pockets! I'm sure we did very well. It was pretty cold, below zero in the wind and ice on the smaller streams, so the boys only stayed for about forty minutes before Dave took them home. Then they came to collect their somewhat frozen mother a few hours later. Overall, I think it was a good success. The kids had fun, no huge tantrums or tearbursts. The adults seemed to enjoy themselves, too. A few even showed up in costume (Bob the Builder, a bunny and Merlin getting my personal thumbs-up). There was even an adorable little miniature fluffy dog wearing a little cap with horns.