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.