Tag: Autism

The journey through Autism isn’t always easy

Posted on by laughloveandlife

Last week I attended an Autism conference by KidsAbility in Waterloo and had the privilege of listening to a very honest, heartwarming and heartbreaking dialogue between Dylan Thomas (a 22 year old U of W student with Aspergers) and his mother, each describing their point of view of what it was like growing up with Autism. The closeness of their relationship as mother and son as well as their unique perspectives gave me moments of laughing my ass off with Dylan’s straight shooter depiction of thinking of people as animals to that large lump that gets in your throat as his mom described the constant challenges they faced in navigating the school system on Dylan’s behalf.

That presentation as amazing as it was, somehow turned me into a sobbing mess on the way home, an ache in my heart that felt so heavy as I thought about the road ahead and what we might have to face as T grows up.

That was Friday and it somehow opened the floodgates for the weekend as my most amazing husband sent me off to the cottage with the girls to regroup, relax and reconnect with lovely ladies I hadn’t had a chance to catch up with for quite a while. These are beautiful friends, women that I know very well, enjoy their senses of humour, and can easily talk about anything. Yet I found myself, worn out from a fairly exhausting month of work, unable to prevent the crack in my voice and the floodgates to open when we were having a simple conversation about Autism. I’m not sure if it’s that I don’t want to talk about it in case in starts to ostracize people or if I don’t like talking about it because I don’t want it to define who T is and who we are. I surprised myself by admitting that anyone who gives me that sympathetic, “I’m sorry” head tilt, I want to slap and I find myself putting the word “Autism” out there as almost a dare for anyone to react in a way that is anything different from normal.

T is doing really well right now. He is engaging in social conversation, he is doing way better at looking people in the eyes, his frustration freak outs are almost non-existent. He is doing well because we are working hard at managing a household that works for Autism. We go to Speech Path weekly, we practice at home, we work with his teachers, we know what sets him off and create plans that don’t contribute to those ugly moments.

No one ever said the road would be straight…

But he still has Autism.

He still has repetitive behaviours, over-stimulation issues, sound and texture sensitivities, communication and social challenges.

We always try to take a very positive approach to this journey but I have to admit, after a month of school field trips, volunteering in the classroom, school dance, and most recently an end of year performance where the kids go to dance, we are emotionally exhausted. Every time we go to one of these events, my heart is FULL of love for our little guy..we feel so incredibly proud of what he has achieved. But there is a part of me that is really sad…sad when he checks out into his own world in the middle of a performance, sad that kids aren’t connecting to him in school activities, sad that he is left out…sad because we can’t make a difference in those moments.

I know this just a moment in his life but its one I wish we could speed through and get to the other side.

After hearing the Thomas’ story, it seems like the road is a long one.

Trying to talk Teenage while crossing off my list

Posted on by laughloveandlife

So here’s the scoop…

I started my Bronze Medallion at the St. James Civic Centre in Winnipeg at age 13. I have absolutely no recollection why exactly I didn’t finish the course but life somehow got in the way and I didn’t think it was a big deal to not complete.

I promptly forgot about it for the next 17 years. But like getting my motorcycle license, it was has been on a particular list in my head for years. A TO DO I wanted to complete, something in the back of my brain about the fact that I never actually finished something I started. So when my running partner and another equally fabulous friend decided that we should go for a ‘Try Triathalon’ this summer, I somehow found the perfect training ground for the endurance swim that we would have to accomplish on the Tri circuit…AND finish something I had always meant to. Killing two birds with one stone per se.

So I signed up. But what I DIDN’T think about is that I might be a little older than the average participant in the Bronze Medallion course. Hilarity ensues at what I am now affectionately calling the Social Experiment.

I showed up the first week having no idea what exactly to expect and ran into another mom at the entrance, asking the direction to the Bronze Medallion class. I sigh with relief and say “Oh, are you taking the course too? That’s great! We can be partners!” (maybe a bit too enthusiastically). She promptly looks me up and down and says “Uhhhh nooooo, I was checking for my 11 year old son” ..11? They are seriously as young as 11? You gotta be flippin kidding me!

So I walk in to the theory part of the class and it is me and 20 11-13 year olds. I go to my mat (yes,mat…cause young people can sit on mats for 1 1/2 hrs whereas us evolved really do prefer a chair) and we are subjected to 2-18 year old instructors who truly believe that yelling at us is the most effective form of teaching (Umm, yeah: intro to management course!) We then go into the pool for the next hour and a half and have to perform varying acts of self-rescue and rescue techniques. Fabulous if you have a butt who has not experienced any form of weight gain, child birth, age in general. Not so fabulous as you have to huff out of the pool as if you are climbing out of “mock” ice break incident and thinking really…how much cheek did I just show these poor kids?

I find it a challenge to relate to these young bucks. There are some seriously hilarious conversations I have been witness to, laughing to myself MANY times throughout this adventure and wishing there was someone there I could share a snicker with. My favorite conversation so far was one of a girl asking everyone in the class where their family background was from. As she went through the line, Ukrainian, Polish, Scottish, etc…she came across a guy who indicated his background was Indian and Dutch. Her response “OMG! That is sooooo sick! (Thought sick was out by now?)  I would love to be Indian but I don’t like Indian food!” COMEON! This is the future of our youth today?

I am now in my 5th week of the course and have found a camaraderie of sorts with the girls in the class…In part because of an exchange of discussing the Hunger Games (OMG! I SO think Gale is cuter !) , part because I know a lot of answers to the quizzes when we are practicing for a theory exam. I have 4 more weeks to go and then I will have completed that elusive certification. As much as I don’t get the kids in my class, it was totally worth it. I completed a 500m endurance test today as part of the qualifications and was beyond excited to NOT be the last finishing the laps. This has been a lesson in connecting with the younger generation, age discrimination, weight discrimination, staying cool in the height of an emergency and staying focused in managing through a crisis

I am particularly proud that I will be able to pass on this “completion of starting something” with my kids and only hope they can take cues from the fact that mommy will never quit unless it’s really serious. In the meantime, get out and swim…it’s seriously one of the best forms of exercise I have ever been a part of.

Here’s to the next one…

 

We LIT IT UP……Blue for Autism Awareness

Posted on by laughloveandlife

We LIT IT UP BLUE

Autism Support
Light it up Blue on April 2, 2012

As I came home last night and approached our house, the shining blue spotlights clearly made a statement. I love that we chose to do this as a way of showing our support for World Autism Awareness Day. It demonstrated part of our commitment in raising awareness for Autism but in my mind, also made me keenly aware of how different we are from our neighbours. As they went on with their nightly activities, I came home…poured a drink…cuddled into my husband and had a good cry.

I was so overwhelmed by yesterday.

Throughout the day, I felt incredibly proud of how people in the world were coming together on one singular day to raise as much awareness as possible. It seemed every store I had stopped into recently- Toys R Us, Home Depot- there was a message about raising awareness. The Autism Speaks website had an incredible amount of shots of structures around the world Lighting It Up Blue in support. Amazing.

I found myself reading a ton of blogs, following a number of streams on Twitter, posted on Facebook, and received messages of support via email, direct message and posts on my walls from friends who generously reached out to make their statement about Autism.

My heart hurt with how many people wrote honestly and with raw truth on what it feels to be a parent with a child with special needs. The one that hit the nail on the head was 7 Things You Don’t Know About a Special Needs Parent. I appreciated so much what Maria Lin wrote in terms of the feelings you have as a parent in this situation.

When I was online after first hearing the diagnosis, I wish I had seen this. Instead I went through months of guilty feelings trying to get past that life will be different now but not really knowing how to move on. (Thus the running)

I feel like the cog in the awareness wheel is finally starting to move a little bit. That people are more and more aware of Autism (and an increasing number of kids are getting diagnosed with some form of ASD) but they still don’t really understand it. No one really does.

Now I find part of me is filled with an unruly amount of impatience. I want to do something. I want to fix something. I want to see change.

I keep thinking we need to look at things just a little bit differently..to better understand Autism and how it works, we could come up with stronger answers on how to help them manage through the key challenges they have in daily life. I used the example to my husband of one of those 3D puzzles you have in the paper. Looking at it, its just a series of spots..but if you let your eyes relax, suddenly you see an entire picture that wasn’t there a second ago.

I am trying to relax… my eyes…just a little bit more.

Autism Diagnosis – 1 year later…It gets better

Posted on by laughloveandlife

We’ve officially just passed our first year with an ASD diagnosis.

It’s sometimes hard to believe that it was only a year ago that we first got sucker-punched with the announcement that our 4 yr old son (at the time) was on the spectrum. This year became a test of everything. A test of our patience, a test on our marriage, a test on our ability to learn, to cope, to support, to stay positive, and ultimately to keep laughing.

For those of you new to a diagnosis, here is a snapshot of what might happen within the first year of discovering your child has Autism. (NB: I’m being brutally honest here in hopes to pass on a realistic viewpoint and let you know that you are not alone)

First 2-3 months: Feels like you’re in a foggy haze. I have seen people react many different ways to a diagnosis. Self-pity, frustration, anger, heartbreak. As much as I tried to be positive, there were still moments I felt like I wanted to scream. I couldn’t comprehend why us, didn’t think he was really that far off from regular kids to be defined as Autistic, embarrassed by how often when someone asked me about it I couldn’t hold it together. There will be many tears, often from frustration as you fumble through trying to figure out what you are supposed to do (especially when it comes to finding support and school). You might feel useless, overwhelmed, sad, disappointed and still completely (if not more so) madly in love with your child.

A dear friend gave us a copy of The first 100 Days by Autism Speaks. It helped. Although my husband and I are both Do’ers- I’m an event planner and he’s a project manager and we didn’t get the sit back and process mode, instead stupidly tried to project manage the Autism right out of our little guy.

100 Days of Autism Diagnosis

Source: etsy.com via Jennifer on Pinterest

 

The next 4-8 months: Once we finally got to the realization that indeed our son was Autistic, that this was going to be a lifelong venture and we needed to start adjusting the how to’s in managing his success, we (or should I say I more so than my husband) had a really difficult time informing people of T’s ASD diagnosis. It felt often that people were a bit stunned and didn’t know what to say..choosing to say something like “well, he doesn’t seem Autistic to me” (hated that)..or gave us that dreaded pity look (hated that more). Then there are those friends who say something brilliant and just help you get through. Best examples of peeps we love and their originality that helped so much..

J- Simply said “Oh..so he’ll be an engineer” That matter of fact..like ASD would help guide his career path to a place where other socially awkward folks might hang out..that there was a pre-existing destination that would be completely accepting of the way he functions

G- Who sent a lovely email with “I don’t know what to say” (love her honesty) and that she was there..on call…standing by if we needed her.

T- Who let me just bawl and agreed it sucked and let me rant to her more than once and asked me how I felt…that rarely happened and I would rarely talk to anyone how I was feeling but T and I are that kind of veritable friend soul mate..who can call you out, ask you tough questions and you love them for it

W-Who is one of the most generous hearts I know and also has had a ton of experience in Autism given that she has family who are as well. She was the greatest listener and advice giver ever. Having a ton of wonderful matter of fact conversations that helped me better understand what Autism is all about.

School

In this time period, we also felt the massive and crushing experience of “working” with the school system to get T some help. It blows my mind how often we heard “the squeaky wheel gets the oil”…and they’re right. Chris and I are both very much sit in the camp of you get more bees with honey but this is one example I can truly say, YOU GOTTA FIGHT! FOR YOUR RIGHT…to have your children supported in school. Many parents who went before me with the an ASD diagnosis, kept telling me to advocate for my son. I truly didn’t know what that meant until dealing with his education. It felt like a battle from the word go.. and we have to say we are incredibly fortunate to have a principal we feel supports us and lucked out with an EA who T and another boy share. The key issue..budget. There is 4X as many Autism diagnosis than in 2002 in our province and yet they have not changed the budget significantly to manage how many kids are needing help.This is something I plan to go on a crusade about once we get our lives in order.

Help

Another key change we did was coordinate help. We went to the Triple P parenting class offered by the Geneva Centre for Autism, which I highly recommend for a number of reasons. 1) You get to talk to other parents who are having similar struggles at home 2) The videos might be a bit hokey but they give you great foundations to work with not only your special needs children but parenting in general 3) You start developing a series of strategies for managing through the day to day to keep your spirits high and your energy focused on the positive. We also worked with an Occupational Therapist to look at ways to help him manage (we discovered he is a deep sensory kid and that a really big squeeze hug will help often when he gets overwhelmed). It also explained a lot why he doesn’t like certain textures..(right now jeans are on the outs) as the OT explained for him, its more like sandpaper than comfort..and why he gets really excitable in loud scenarios (his hearing is super sensitive as well) One of our worst moments was in the midst of a fire alarm. A situation I will never forget. The most valuable we are finding is working with a Speech Pathologist. She has made incredible strides with T in making eye contact when he is talking, taking time to think through what he is saying and learning how to be quiet and not talk..something I didn’t realize how important until we started using this as a technique at home. When he is really excited, we put our finger to our lips (for quiet), gesture for him to focus on what we are pointing at and wait quietly while he accomplishes the task. I tell you, getting dressed went from hellish to happy simply by using that strategy.

8-12 months: I think it wasn’t until then that I was actually able to get out the words Special Needs without cringing at the response I was about to get from people. We still get the pity look but I now realize that its simply because they don’t understand. Who I did feel totally got it was all the teachers in my life. One, an old friend from high school, Jamie M simply asked was kind of savant quality had and talked about the 5 kids he has in his class (this makes total sense as he is an absolute ham and would completely “GET” an Autistic sense of humour). The other, my cousin, shared a beautiful poem with us about truly understanding Autism in the form of the Night Before Christmas. It made me cry but also  made me realize how she and many others are part of that quiet strength we have in our corner. Friends and family are what you need to help you get through sometimes. Talking is good.

Marriage

Speaking of talking, the one thing I can’t stress enough is to keep the dialogue open with your spouse. As I was initially researching Autism, I came across a stat that 80% of marriages with special needs end in divorce. It freaked the crap out of me. So a key thing we concentrated on was keeping our relationship strong to be able to stay strong as a family. We set up and maintained date nights, met at the kitchen table for wine, tears and conversation, banded together to fight the school system. We are (what I would say) one of the strongest “teams” around and even then we faltered on occasion- getting frustrated at each other because of being frustrated with the system or bottling up the heartache we had that life wasn’t going to be ordinary in certain ways. That T might or might not do well in team sports, social situations, school..but talking about it and sharing our struggles made sure that neither of us felt alone in this journey. Check out Our Son Destined for a Team for our perspective on sports.

One Year Later

Life is moving forward and we are seeing some great progress in T’s development.I was starting to feel like he was really behind in the way he interacted with kids but he is starting to integrate a ton better and we are working on social situations. In speaking with his support team at daycare/school, turns out he has lots of friends and in that beautiful way that kids are, when he starts getting upset, they somehow have figured out strategies to keep him relaxed throughout the day. (They gave us a great example of T starting to get agitated and one little girl coming over and handing him a train to hold onto…seriously, I turned into a mushy mess in the middle of the meeting).

To anyone out there who might have recently received an ASD diagnosis, it will get better. You will learn to adjust to the changes in your life and the grieving period will start to subside. You might be surprised by how much of a protector, fighter, lover, or comedian you will become. It will likely change you somehow. If it does, be sure to figure out what you need to get through. For me, its been exercise and laughter and an invaluable support system behind us.

Make yourself strong. Mentally, Physically, Spiritually…so that you can help your kids have the best adventure of their life.

Source: etsy.com via Christine on Pinterest

To Oui or Not to Oui?

Posted on by laughloveandlife

That’s OUR question..

We talk often about our victories and challenges with our autistic son but we haven’t written a lot on our daughter, N. N is a gregarious, lively, effervescent little 4 year old. She might occasionally be accused of being a bit of a drama queen but her endearing kindness and generosity of heart is something we are so incredibly proud of, we surrender to the “fancy pants” nature of her dramatics and just let her be.

She is too smart for her own good. We have been told more than once that she’s a chatty cathy at school, more so because she’s bored with the curriculum than disrespecting authority. She is extraordinarily creative and is constantly creating her own songs, painting pictures, telling us about the gang of imaginary friends and what they are doing “hanging out” in her room.

All this to say that we are now at one of our first mega cross roads in making a parenting decision that could significantly affect N’s school career and either put her on a path of great success and adventure or have her starting the list of “things my parents did to make me turn out this way”. The decision?

French Immersion.

I know…this is truly not the most agonizing decision a parent needs to make but there are a lot of little pieces to the puzzle that are effecting our decision on this. In part, the decision is being swayed by the fact that N has an autistic brother… very close in age that (over the past year) has really grown into a reliance on each other that I’m not 100% sure we want to change anytime soon.

The Pros

  1. Establishing learning of a new language which could greatly assist in career decisions, travel, and so much more
  2. Learning french at a young age would potentially set her up to be capable of learning other languages easier as she grows up
  3. This could provide her the challenge she needs to keep her engaged and enjoying school
  4. This could be something that is hers…and hers alone. I often worry about her getting her fair attention from us. We are so very cognizant these days of making sure SHE gets big props when she accomplishes something, gets alone time with each parent and even gets disciplined in the same way we treat T.
The Cons
  1. N (as young as she is) has taken on a maternal protection of T at school and helps guide him when they are at daycare together or when they come home having done the same curriculum. Conversely, T adores N and protects her if ANYONE gets upset with her. Their connection as brother and sister at this age is fierce and they truly play and interact almost as if they are twins than 18 mths apart. It’s beautiful and I’m not sure how drastically it would affect both of them if we made this choice.
  2. As much as she is bright, I have heard some terrible stories of how much kids struggle in learning regular subjects in a different language, so much so that if they choose to leave the french program, they are years behind other kids and occasionally have trouble catching up
  3. The daycare and school we have the both of them at right now are amazing and we worked hard with them in the development of assistance for T, not to mention the wonderful friends that N has at the school where she would have none at the new school. This would mean two drop-offs, two pick-ups, twice the school activities

There you have it. My quick synopsis of where we are struggling and time is running out. I ran into another mom the other day and she indicated that they are close to a waiting list at the French Immersion and we had better get a move on. She also indicated that the school is darker, dingier and the staff don’t seem to be AS interested in working with parents on their kids success. Fabulous!

So I am appealing to you, the reader, to let me know your thoughts on whether we should move ahead or stay status quo?

How the IPad has saved my bacon..and kept me smiling at my kids

Posted on by laughloveandlife

I know this post might create a bit of animosity with certain peeps. You know, the ones who don’t believe in TV..but this is an homage to today’s world of technology and finding a way to live the life of sanity in a world that is chock a block full of flurried activities, kids hopped up on goofballs, media infusing into every dimension of our lives, and the constant desire for “balance”.

So it is here I make the statement, that I truly think the Ipad saved my bacon (or at least for now, my sanity)…and had it not been for its beauty of creating the ability to compromise, share, educate, entertain and satiate the desires of one 5 year old Autistic little guy and his 4 year old bossy boots sister, I’m not sure I would be in such a happy place at the start of 2012.

Here are 3 examples of how our lives have personally changed with the addition of a valuable piece of technology.

Mornings

  • Mornings were a disaster. Full of hyped up, non-listening moments of repetitive requests to get dressed, eat breakfast, brush your teeth and get out the door. Usually ended up with a meltdown (Depending on the day it could either be a parent OR a kid- take your pick) but nonetheless, it wasn’t typically a happy experience. But one crazy day in the fall, my darling husband introduced the IPad and the insanely fabulous games it can produce (like Angry Birds) and suddenly our little guy turned into an angel. Why? Because we employed the First (list of all tasks required to get ready for school) and Then tactic (you can have 5 minutes of playing games before we go). We don’t have to give promise playing every morning now, its just the matter of T has started to recognize that good behaviour reaps good rewards and it is working amazingly well.
Restaurants
  • Any regular kid gets tired of waiting at a restaurant for food. Our daughter is exceptionally driven by food and can turn Medusa on you in a nano-second if she’s hungry (she gets that from her mom) whereas T often finds the crayon drawing papers to be an exercise in frustration as he loses focus quickly and finds challenges when he can’t pick something up or stay in the lines. Enter the IPad, a portable chance for brother and sister to amicably take turns playing a game together, doing word recognition, drawing, spelling, you name it (they know if they don’t play nice its gone) and mom and dad to have a small chance at catching up with each other without having to be on 100% of the time we are out.
Grocery Shopping
  • Quite often in the past would translate directly to H E Double hockey sticks if I had the kids with me. Imagine Groundhog Day and every time I went, it would be a battle ROYALE…constantly asking to stay in the cart, (or close to the cart), Don’t disappear around the corner- (I grew up with a mom who has the kids kidnapped the minute i lose sight of them), singing ridiculous songs to keep them entertained, begging T not to hide under the cart for fear of appendage loss. The entire experience would have the kids upset, me upset and ready for a drink the minute I walked in the door. Voila, we share the Ipad now with me downloading our whole shopping list via epicurious while the kids play and often we are playing against each other while shopping. This has taken something that was causing me to go grocery shopping at 11pm or to suffer through avec the kids to something I actually find enjoyable with them now.

Yes, I know some of you are horrified that it sounds like I am using the Ipad as a babysitter. Maybe I am but I am doing it responsibly and in ways that help my family manage that illustrious balance we all desire and keeps a much happier group together when we get home. I’m not reaching for the wine and I am finding I am smiling more when we roll into the parking lot after our adventures. Think about it.

** I’d like to salute those who have gone before us without technology at their side. The pioneers of parenthood if you will. I once asked my grandma how she managed to raise 4 kids and stay relatively jovial..her answer..”Sometimes, you’d just have to leave the kids with the neighbours, go for a walk and treat yourself to a glass of wine”. Grandma, I’m in!

Our Autistic son destined for a team?

Posted on by laughloveandlife

I sit here. Watching my guy skirting around the ice, wobbling, “hockey ready” (our translation: keeping the stick aka:weapon on the ground) and holding my breath till he gets off the ice.

T is loving hockey. Like loves it in a way that he will put down the mouse, step away from the computer, go get dressed, stop doing whatever he is doing to happily head to hockey and get his skates on. You can tell he feels part of a team and embraces the notion of having friends at hockey that he loves to see.

We thought because of his enthusiasm, this might not be as bad as we expected..and that he would come out of this Hockey Skills program with the possibility of playing for an actual team…the verdict is still out..

There are good weeks (many of them in fact) as I watch, amazed, as he gets up and falls down, gets up and falls down, tries and retries to get the puck in the net, over and over again with an incredible amount of determination to keep going.

Then there are bad weeks. The kind of weeks were he is all over the place, skating off in numerous directions, nearly pelting his fellow players with his stick, not listening to the coaches, and seeing them get frustrated over his lack of focus.

They know he is Autistic and has trouble with broad or multiple instructions but you can tell with certain instructors, this is simply 1 of a dozen classes they are teaching this week and taking the time to chunk things down is way too much energy. I don’t blame them…most of them are young guys just making cash to do other things and working with a special needs kid is not necessarily something on their agenda. I’m not sure that at their age, I would have been any different.

So we watch, hardly breathing…keeping count of the good moments to compensate for the not so good ones…reassuring ourselves that he’s not the only one lying on the ice, getting into it with another player, or taking off because he simply does not want to listen anymore.

A couple of examples of our not so great moments..

1) The moment I had to run down to the ice to reinforce that your hockey stick should not actually be held like a tomahawk and attempting to show a friend that he was being mean by responding like a tomahawk was not the solution (he was like THIS close to schmuckin this poor kid in the helmet)

2) Having to watch a repeated antagonist (let’s call him a poop disturber) who constantly jars/jabs/hooks kids (especially T)  and then complains to the coach that one of the kids retaliated and pushed him back. Let’s just say I have already pegged this guy as one of the mean guys on Glee who throw slushies in everyone’s face to make up for their own inadequacy.

and a few great moments…

1) Watching the little guy head towards the goal…focused, driven, bound to score…and then he missed…and missed..and missed…but the fact that he would try, miss and go grab the puck to reposition in front of the net until he actually scored was phenomenal and a proud triumph for our whole family.

2) The time where he walked away from that antagonist…just asked him to leave him alone and simply skated away ??? #epicwin

I’m not sure if T will ever actually be a part of a hockey team (if he does ends up participating, for sure he will be a bruiser Defenseman…making sure NOBODY got near his goal) but for now…we have hope. Hope that this is an experience that he can continue to be a part of, not hurt anyone in the process, enjoy and take tremendous pride in what he accomplishes. That’s all we care about. Nothing more.

Well…and I hope if he makes the big leagues that he plays for the JETS 🙂 They are my hometown team after all ..:)

Goals & Autism- It’s all about Changing Perspective

Posted on by laughloveandlife

You wouldn’t know our son is Autistic if you looked at him. In fact, you wouldn’t even know if you spoke with him. (Most of the time) But sometimes… when things get hairy, loud, overexciting, you start to see that tiny minute difference creep out in the way he is responding to stimulating circumstances. At that moment, you can almost physically see the switch flip in his brain and slightly cringe at what that means you are about to get next.

Sometimes, its an abundance of energy so heightened that you think he might literally bounce off the wall..sometimes a disconnection to the situation that I often wonder if he suddenly disappeared to a planet all on his own..and sometimes an uncontrollable upset or anger that will take quite awhile to get him back to a calm state. Eventually we do

get him back to calm and move on to the next moment, challenged with figuring out what set him off and what we can do better the next time.

We struggle a lot with how much of the energy, excitement, etc.. is just that of a 5 year old boy and how much of it is Autistic behaviour? As this first year of diagnosis journeys on, I’ve noticed we are becoming far quicker to recognize where the set off points might be and some of the measures we can take to better manage through those potential challenging situations.

A big challenge is when T completely disengages from an activity. At first, we didn’t know whether it was necessary to share t

hat he was Autistic to a teacher, hoping that he was going to be so interested in the activity that it wouldn’t be noticeable. Yeah…no…not so much. We have learned that it is much better to explain than watch them get frustrated with his behaviour, explaining that you need to “chunk” down instructions instead of a quick overview. A simple example would be rather than saying “Get Dressed”, it’s better to say “Put your pants on, your t-shirt on and then your socks”.

Far more successful in solo activities that with team oriented sports (Soccer was a disaster but skiing was phenomenal) my husband and I came to a header this year. Do we or don’t we sign him up for hockey? Every dad dreams of his kid playing hockey but given our experience with soccer, nei

ther of us wanted to endure the frustration and challenges that might come with it. Our comprimise was a Hockey Tips for Tots…it got him out on the ice and learning the technique to play hockey without the actual pressure of the game.

So we took a big deep breath, and bit the bullet. The first practice went about as well as

expected, with challenges in getting all the unfamiliar awkward gear on but then, by the second week, T started asking when he was going to get to play hockey next. We were shocked and pleasantly surprised that he was open to going again. We would watch him as he got on the ice and fall..over and over and over again. But he’d get back up and every week as we continue to go, he can’t wait to get out on the ice and be with his “Hockey buddies”.

Our perspective is totally different than those parents around us. While they want their kids to skate fast and score a goal, we’re ecstatic that T is listening to instruction, managing the drills and willing to keep making efforts towards to getting the puck in the net.We are noticing our “goals” in life are changing but if you saw us watching T out there, so proud of how hard he was working and obviously having so much fun out on the ice, you would have thought he had scored in the final round of the Stanley Cup Finals. And that’s exactly how we want him to feel.