Super siblings. 

  April 10th was National Siblings day. And as you can probably imagine,being the sibling to someone with autism isn’t easy at all. You often don’t get to go places you’d like to go because it isn’t a favourite place of your brothers or you get some of your belongings ripped up or broken when he has a melt down and is trashing anything in sight. You genuinely don’t know what each day will bring. You also get a set of parents that are so burnt out mentally and emotionally that at the end of the day there’s not a lot to give you and truthfully sometimes may take their frustrations out on you. 
But if you’re lucky like Parker is, you have two incredible older siblings. Ones who love him unconditionally . Ones who are proud of his achievements and who celebrate all the small victories in life. Ones that, despite all the heart ache and sometimes disappointment, are still there for him 100%

I’m so proud of the patience they’ve shown on this journey ,with all the sacrifices they’ve had to make, while we figured out how to keep our family happy and whole. 

You can see by the way Parker looks at his brother and sister how much he loves them and how important they are to him. It calms my spirit to know he has them always there for him, not begrudgingly, but because they truly love him. 

So in our house every day is national siblings day. I celebrate my other two very special kids and the amazing people they are growing up to be. 
Tonja 

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Autism awareness. 

  “I am more than Autism”
This is what I would think my son would say to me if he could speak. As a parent with a child with autism it’s easy to only focus on that one single bit of who your child is. It’s always in the fore front, in his inability to speak or his preference to watch the same 10 minutes of a show over and over. 

But it’s so important to step back and look at the whole canvas of who your child is. You can’t properly see the full picture if your nose is pressed up against it. You need to step back to see all the bits and pieces that make the picture whole. The cheeky sense of humour, the love of a good tight hug. The way his face lights up when he sees it’s you picking him up from school. The way he can hear a song just one time and “sing” it perfectly. And the way that no matter how much you feel you might have screwed up as a parent, he’s there with unconditional love. 

Today is autism awareness day. But I’d prefer that everyone be aware that my son is so much more than his autism. He works so hard every single day to fit into the mold that society thinks he should, constantly having to fight his desire to do things that are deemed “too autistic”. I can’t even imagine how hard that must be for him. He’s challenged every day with trying to communicate his needs to those that care for him. Imagine living in a world where you don’t speak the same language! 

So for today and every day I want everyone to be aware that my son is an amazing individual who is funny, caring, sarcastic and loving. He has hopes and dreams and desires just like every other person on the planet. He just also happens to have autism. 
Tonja

Forms- the cursed F word. 

Even before your child is diagnosed with autism the first thing anyone wants you to do is fill out forms. What date did he do that or when did he start that. Ask anyone who’s had a few kids, by the time the 3rd one comes around you’re not quite as strict with writing down every milestone. It’s a sad true fact, there’s often less photos and less baby book entries. It’s not cause you love them less, it’s just cause you have so many kids! It’s busy! 

So whenever I’m faced with the daunting task of filling out forms I feel like I’m back in high school avoiding doing homework at any cost. I just really hate it. So much. But I also know it’s a necessary evil. We were part of a study for a few years through UBC and every time they came for a visit and assessment I would get a stack of forms to fill out. No exaggeration, there were usually 10-15 different questionnaires, and assessment forms. They gave me usually about 90 minutes to get them done. Ugh can you say writers cramp?

The forms have gotten less and less over the last few years thank goodness. But currently I’m about 2 weeks late handing in a form to my social worker. And she’s hounding me and I’m avoiding her like the good high school rebel I am.  I’ll get it done. I always do-eventually. I think mostly I just get tired of being reminded of how far behind my kiddo was at any given age. 

Anyhow off I go, putting off filling the form in for just a little longer,  at least until this evening anyway. 
Tonja 

Autism Daddy

I found autism daddy’s blog quite a while ago now and from the first moment I started reading I felt like we were kindred spirits. Seriously. It’s like this guy was in my brain. His son is so similar to Parker it’s kinda crazy! I have met other parents locally who have children in the spectrum, but they are all on the higher functioning end. Our struggles are very different so it can be hard to relate to them. So when I read posts like the one Autism Daddy wrote today I want to yell from the mountain tops “SOMEONE ELSE GETS IT!!!” and then I kinda wanna stalk him and go hang out with him, because I can’t imagine how incredible it would be to sit down over coffee with someone going through so much of the same things. 

So because I can’t put into words any better than he has done I will share his post from today called “Why autism supermoms make me feel bad” 

http://www.theautismdaddy.com/2016/03/why-autism-supermoms-make-me-feel-bad.html?m=1 
Enjoy! 

Tonja 

Easy to forget. 

  Last night Parker stayed home for the night as it is spring break. So today being a beautiful spring day we decided to head out for “family adventure day” We packed up the jeep and headed to the river for a fire and fresh air. 

We had a great afternoon, Jackson felled some trees, Rachel chilled in the sunshine and Parker played in the jeep. We spent a couple hours enjoying nature and then in true B.C. fashion it began to rain. So we packed up and headed home. But not all of us. And this is the part that’s easy to forget. In moments when the 5 of us are together and we’ve had a great day, it’s easy to forget about the  choice we made almost 2 years ago. The choice we made that had us today, like many other days, heading across town to drop Parker off at “his house” before the rest of us headed home. 

In those moments the guilt comes flooding back at full force. The weight of our decision like a boulder crashing through our great day. I hate how sad he sometimes gets and especially when the tears start rolling down his face. I hate that our decision is the cause for his sadness. All I want to do is grab him and head straight for home and never look back. But it’s also easy to forget why we are here in the first place. Easy to forget the stress, frustration and helplessness that lead us to our decision in the first place. 

Making that decision was by far the scariest and hardest thing we’ve  done so far in our lives. But I try not to forget why we made it. I do not want to live with regret for not having done what we needed to be the best version of our family we could be. 

Hello weekend!

  
I love weekends. Not because I’m off very weekend. I work in health care. There are no weekends. But because it’s the time of week when all my kiddos are under one roof.  When Parker first transitioned to living at the resource we waited a few months to have him home for the night. We wanted to make it less confusing during an already stressful and tumultuous time. I still don’t know if we transitioned him well or not. We had no guidance and no one to talk to about our situation because we don’t know anyone else who has gone through it. But that’s a whole different post. But during those first months even though I saw Parker every day, when I was at home it always felt like something was missing. I always thought I heard him and was always still “on” all the time. It felt very unnatural to sit still and not be checking on him every few minutes. 

Once he started coming home for sleepovers, I finally felt more connected and at ease. It’s certainly not a natural thing having your child living somewhere other than you are, so it’s no big surprise to me looking back at it hindsight, that I felt so off center. 

So it’s my happiest times when I can look around the house and see all 3 kiddos doing their thing, because that’s how it should be in a perfect typical world. 

Fellow Warrior & Keeping Positive

It’s always so great to meet other parents that “get it” Parents who understand the torture of a day of stimming, or a day of watching the same movie over and over and over again.  By chance today at work I was chatting with a lady that comes in to do housekeeping for one of our residents. I’ve chatted a lot in the past to her, but today it came up in conversation that her son has Autism along with his DS.  Her son is grown now at 22 years old while my son is 12 but she’s been where I am. We talked about school issues (ie sensitive butt-hurt principals), family issues ( family who don’t try to interact with our affected kiddos and how hurtful it is)  We also discussed how hard it is to find good people to work with our kids, and how when you do get a really good one you never, ever want to see them go! I swear I would make someone sign a contract in blood to never move, have a baby, change careers and so on until Parker is 18! I raved about one of Parker’s workers and how lucky we were to have her. ( She is really great) It was just great to talk to someone else in the “trenches” so to speak. The feeling of camaraderie kept me going for the rest of my work day.

Then right after work I went to pick Parker up and got the news that our amazing worker had just put in her two weeks notice today. I was gutted. Scared. Sad. Worried. the whole gamut of emotions. I immediately started worrying about how it was going to affect Parker and in turn affect all of us. Could we possibly get lucky enough to find someone new who cared about Parker the same way? Someone who would actively advocate for him. Someone who is basically a rock star?

I definitely could feel my stress level shooting through the roof. I was plunged back in time to those first days when Parker moved to the resource. The guilt, anxiety all coming back to me. But I don’t want to live like that. Focusing on the negative isn’t going to help. I have to think that maybe our rock star was only meant to be in our lives for a certain amount of time. Change isn’t always a bad thing- I repeat, change is not always a bad thing. So I’m going to keep my fingers crossed and hope that the universe is kind enough to shoot another star our way.

How we got here. 

In 2014 we made a very hard decision. One that I haven’t shared with everyone in our life for various reasons. But for whatever reason it feels like the right time in our journey to do so now. 582 days.

It seems like only yesterday and much longer all at the same time.

582 days since our little boy has lived full time at home.

582 days since my heart was ripped from my chest and left with him all the way across town.

I read recently something about grief that perfectly describes how I’m still dealing with our decision;

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life. ”

We made a decision we thought we were years from making. We needed help. We could not keep our heads above water. We were all drowning. We didn’t want us all to become casualties in the “battle” with autism. We didn’t want resentments to grow, and fracture the very core of our family and the love we all share.

But along with this decision comes heartbreak and all consuming shame. ” Why am I not strong enough?” “We are horrible parents” ” I am so weak” just a few of the many things that went through our heads.

582 days later and there are still people in my life I haven’t told. People who don’t know Parker is living in his own house across town being looked after by people other than us.

Has it been perfect. Hell no. But was it the right thing to do? Absolutely. There is now joy in the time we are together ( and there’s A LOT of time together). There’s happiness and laughter where there was once frustration and anger.

By hiding behind my shame I haven’t honoured the fact that we have some really incredible people in our lives now. People who take amazing care of Parker while respecting that we are still Mom and Dad , we make all the decisions, and nothing will change that. People who truly love Parker and look out for him 100%

With these amazing people in our corner we are able to be the very best version of our family that we can be. And I can’t see any shame in that anymore. Yes I still have hard days when I battle with my feelings of regret and shame and sadness. But more often than not I’m just grateful that we were able to get the help we needed. The proof of our decision being the right one lies in Parker. He’s happy, loving, growing by leaps and bounds. And he’s still mommy’s boy.

So I’m no longer hiding behind my guilt and shame. This is who we are as a family now and just because it doesn’t look like everyone else’s family, it doesn’t make it any less loving, caring and strong.