Autism has changed HOW we are..

I like looking at a glass half full. I believe everything happens for a reason. I always try to stay positive within a situation.

Wish is partly why I haven’t written in a while. I didn’t want to be a disability parent who just mopes around all over the internet.

6 words.

“There’s Something Wrong with That Kid”.

Those words took down a 250 lb linebacker of a dad and a (we really don’t need to talk about my weight) pretty strong character of a mom.

It was at a hockey practice with our team and the other team we played earlier in the day. They didn’t know T had Autism. My husband was on the ice to work with T and other kids from our team to help them. T was tired and started meandering aimlessly through the practice, having a hard time staying on task and completing the necessary drills. They didn’t realize my husband was T’s dad and after watching a particularly challenging exercise,  one coach made that comment to the other.

Chris, my dear husband, protector of our family, hit a complete crossroads at that point. He was proud of himself later for not slugging the guy right there on the ice and totally disappointed that he didn’t get a chance to punch him in the face. Amazing isn’t it how one phrase can stir up such intense emotion?

Original source: Arham1234 on Fanpop.com
Original source: Arham1234 on Fanpop.com

You see, it’s starting to show that T is different. Up until this point, we kind of flew under the radar. His outbursts of movie content, overly sensitivity when someone yelled (he actually told a hockey mom once that she needed to stop yelling at her son and that made him “VERY angry” – clenched fists and all), kissing and hugging (inappropriately) friends, parent of friends, teachers, daycare providers and his speech pathologist kind of came off as endearing and young. So much so that we were often asked if we were “sure” that T had a diagnosis of ASD.

In some ways, he is doing a 1,000 X better in terms of social. The new WiiU he got for Christmas has allowed him to engage with his friends in something that he loves to do and is proficient at so that he can provide advice to his friends and find a way for them to play together and on the same team. But he is also starting to demonstrate those tell-tale signs of Autism- he doesn’t connect with how loud he is, can’t quite gain control of physical responses and often “over does it” when excited or stimulated, he gets very upset if you get angry with anything (most recently it was a friend’s dog who he adores that was getting into trouble for eating off the table), and his friends are noticing his repetition, nonsensical statements and lack of interest in common games typical of a 6-year-old.

On the bright side, he doesn’t lie, has a laugh that is so pure and honest, you want to bottle it up and save it, and his empathy is such that he spent an entire period of hockey making sure that everyone was ok who had fallen down.

This is yet another phase we are learning about on this journey and what we have recently discovered is that it doesn’t define WHO we are but often does define HOW we are.

And part of HOW we are going to be is to always try to stay positive, and overlook the times when people are ignorant in what they say but at the same time are telling the truth. There IS something different about him.

Something awesome.

Thinking positive- ASD

 

Get down? or Get back on track?: Depression nearly got me

Yesterday felt like the lowest of the low kind of days. I felt like it simply took EVERYTHING inside of me just to get out of bed..to keep going…to keep working towards getting T help in school…

All parts of me felt on the verge of hiding under the covers and simply going back to sleep, avoiding the challenges we have been facing for a simpler, quieter, easier kind of day.

Was I depressed? Absolutely. Is this depression…I don’t think so. But easily see how if I were to give in to that desire to stop ,it could easily be there in a heartbeat.

As a family, we’re exhausted…we’ve been working with the school board in trying to find a solution to support our son in school. It’s been incredibly draining and the amount of meetings/emails/conversations we have had about it has us living in survival mode to just get through each day. We are continuing to advocate for T and won’t stop… but its taking every piece of energy we have.

Add that to the fact that I have been injured over the summer, have hardly exercised and ballooned in weight because of it. I just hit a wall. I started seriously questioning whether I needed to consider going to see someone professionally by mid afternoon??

But then we had an Autism Meetup last night. A group we started to support Parents in the city of Toronto who want to look at different ways to manage through Autism, look to each other for support, get advice on different solutions and talk through the victories and challenges we have.

It helped. But this morning helped even more.

I decided I can’t let this get to me. I know we have to keep fighting and I need to keep energy high to take care of our life. I need to be there to support our kids as they begin the school year, my husband, who is writing the most well-articulated letters to anyone and everyone willing (or not willing) to listen and my business, that I need to keep going in order to maintain the flexible schedule we need to access therapies/resources for T throughout the day.

I decided to try to go for a run…and then someone woke up early and agreed to come for a run with me. T…agreeing to come along if he could run in his pajamas.

Sometimes we need a little reminder what we’re fighting for

We raced…full force…fast…as hard as we could…and I remembered why I started running in the first place.

Running helped me work through the diagnosis of ASD, helped me gear up for the fight and I realized that I REALLY need that element in my life to stay sane.

I might not be as fast as I was awhile back, but I’m back.

Warning: Acting like you’re 17 can have adverse affects on your health

So I thought I was being wimpy.

We had bought this boat to rediscover the hubs and I’s love for watersports and felt it was that time to get the kids engaged in a whole new different world at the cottage. I grew up waterskiing every weekend and couldn’t WAIT to get back out on skis. So we dropped the boat in on May Long Weekend and I braved the water temp to enjoy one of my favorite feelings of all time..the tug of the boat, the speed, jumping across wakes and going slalom…ahem…wait…did you say slalom?….Did I forget the fact that I haven’t skied in nearly 15 years…??

N and her fave part of summer. Getting thrown in the lake

As I got up on 2 skis, my arrogance  and adventurous nature of youth came careening back into my soul and I somehow forgot that I am living in a 37 year old body and instead felt like I was about 17 again. Not a problem unless that exaggerated sense of competence leads you to believe that you should drop one ski the first time out in said 15 years…so as I come sailing by the dock I think, “I can do this!!”  and promptly loosen out of one of my skis…and then promptly have one of the wickedest falls of my entire waterskiing history. 🙁

I felt a slight ache in the back of my leg but didn’t pay much heed to it until we went tubing later on…crashed (in a fun, “OMG I feel like I’m 17 again”, weeeee kind of way!) and hit the same spot on my leg.

That was May 24 and when I started out running the next week to maintain our training schedule for our next half, I just couldn’t do it. Everything about my leg felt sore and painful. I talked to my physio, went to massage and Active release therapy and nothing was fixing it. I just stopped running. Even walking or sitting in a chair was enough of a trial that I realized I had tweaked it somehow and needed to give it rest.

But here’s the problem with summer…with summer comes fun, food, drinks and parties…missing out on the exercise that counteracts all that fun gains you back the pounds shed over the last year and a bit. We all know it’s a cycle, you are either on the healthy train or you’re off and with this injury I fell off…and how! I ultimately went for an ultrasound on my leg and discovered I have torn my hamstring in two places. What does that mean? 8-12 weeks of recovery and physio to get it back in working order. I am starting to come to terms that the half I had planned is not going to happen but what I NEED to do is get back on the train.

So today I went out for my first run this morning since the week after May Long. I accomplished 2.5km…

At first I thought..2.5k? Yuck! I’m starting all over again. And then I realized..”Hey, I’m starting all over again…if that’s what it takes, that’s what I’ll do as long as I am doing!”

The other thing I realized is that part of why I haven’t been writing on the blog is because running always helped me decompress, sort out my thoughts and decide what I wanted to write about. Without that outlet, I really feel like I have been lost these past two months.

I have bought my ticket and I am getting on the train (I look at it that I was temporarily in the station). The journey feels like it will be longer this time but look forward to what’s next in the adventure.

Magnum, our friends dog getting the most out of the boat

Training…finding time in the midst of tired

Morning with a view of the CN tower...jussssst off in the background. You see it?

I have something like a dozen half finished posts in my drafts these days. It seems that whenever I get a chance to sit down and truly concentrate on writing a post I think is worth value, it comes at a time where my eyes are getting heavy and my body is shutting down. I’m in a constant state of craving that much sought after sleep that (these days) feels a little elusive. Its not that I stay up that late, our challenge exists between the hours of 2-6am. Hours which normal sane people would be fast asleep in deep REM mode but our children have decided in this phase of familyhood, that they are prone to  getting up and acting as if its bright and sunny daytime rather than the dark cloak of night.

Like clockwork, one of them (BING! ) is awake, chatting about all sorts of gobbledy gook, not just awake but WIDE awake which (If we don’t get to them in time) might just wake up the other one. A much worse proposition. My husband and I love to dance but this dance LEFT-RIGHT-STUMBLE TO BED-GET UP–LIE DOWN WITH KID-BACK TO OUR BED-TAG OFF-REPEAT is one that we’re not as much fans as say a good foxtrot!

You might think that we have really young kids…a baby perhaps or a toddler…ummmmm no. Our kids are 4 & 6 and seem to have been leaping in and out of this phase for their entire existence. We know they can stay in bed. All sorts of threats, negotiations, deals and more though seem to get thrown out the window as soon as they say those words that breaks the heart of every parent its been said to..”Mommy…I had a nightmare…will you cuddle with me?” Ouch! Stab me right through the heart, because whether or not they really did have a bad dream, (I had many growing up) I want to be there to help comfort them when they need it.

I am not helping the matter of being tired. As I mentioned, I actually enjoyed the accomplishment of the half marathon we did last year so much that we are doing it again. May 6th is our official race day and we are now in the high teens in terms of long runs along with other short runs/training 3-4 times a week. So I am getting my exercise and training hard for this run. We also have begun training for a Try Triathalon. This is something that a) I never in a million years entertained I would be doing and b) find monsterously more appealing than say and actual Triathalon as its more likely going to be a 500m swim, 20k bike and a 5 k run. All elements I know I can handle. Its just whether I can handle them together?

A few friends have commented recently on where I have found the time or the energy. The answer is two fold.

The time…I have a really awesome partner in a husband who has come to the brilliant conclusion that when I exercise, I am a happier person…ergo, he supports me and the training schedule I am working against (and often keeps me motivated by telling me how proud he is that I am going after a goal and sticking to it). I also try to manage runs during times that don’t impact our family as much…which is why I am getting out of my cozy warm comfy bad at 5:45am to meet up with my neighbour and get in the 7k we need to do before 7am tomorrow. Yuck!

The energy…I think since I started this I have more energy overall…I am eating healthier, I am sleeping better (when the kids don’t wake us up) and I am feeling fit. But truth be told, in the confession outlet that is this blog post, I drop the ball. I have a long overdue list of phone calls to make, emails to catch up on, taxes to be done, garage sale stuff to be organized…I can go on…

But I know for me, to stay healthy and in fighting form to tackle the constant challenges we keep getting faced with, this is what I need to do. My friends know I love them and someday we will catch up (definitely over a glass of wine), the taxes will eventually get accomplished, the garage sale stuff purged…

and emails…I don’t think anyone ever catches up on emails…like ever.