life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

Open April 21, 2013

On my way home from work on Friday I had the windows down and the volume turned way up.  I was singing along with a song (linked below) that I know very well, but for the 1st time, I felt the lyrics in my bones.

Then, my good friend posted this on facebook:

The highest level of confidence is when you’re not afraid of revealing your insecurities.”

I’m naturally pretty private and I grew up in a family that would rather brush problems under the rug and pretend that everyone didn’t know what was really going on than talk about them, or worse, share them openly with others.  We pretended that we were perfect and that we were good examples to follow.

Here’s my truth … I’m flawed.  Seriously messed up in a lot of ways.  I have made a ton of mistakes on many different levels.  Because of Jay and his Autism and to a lesser extent, Ace and his ADHD, I have had to make the choice about the kind of parent I’m going to be.  Would I keep silent – sticking to what is comfortable –  pretend like everything is fine, when sometimes it’s not?  Would I try to make my children as “normal” as possible and hope that people didn’t see that they are different?  Would I hide out at home?  Decline invitations?

NO.

That just wouldn’t do.  That wouldn’t help me and it damn sure wouldn’t help my children.  All I care about is making the world as accessible and as welcoming for my children as possible.  To do that, I have been forced to face my own insecurities and fears.  I have been forced to open the doors and the window shades on my life so that outsiders can see my children for who they really are instead of some statistic or symptom.

 

We (in the autism community) like to talk about awareness and acceptance and understanding.  We like to see buildings (and finger nails) lit up blue and we (not me) have puzzle piece ribbon magnets on our cars.  We say “autism is one word, but there is no one autism”  We also like to emphasize that “if you know one person with autism, you know one person with autism

It’s true.  Autism is not a one size fits all disorder.  But how will anyone who doesn’t live with it everyday ever get to know all the different autisms if we don’t share it with them?

The good – Because there is so much good – at least for me.

The bad – Because there’s plenty of that to go around.

The evenings when you get home from work and sit in your car for 15 minutes before going inside because you need that time to just breathe in and out.

The afternoons when you’re trying to type a blog post and you grin widely because your son – who the experts say can’t “pretend” – walks into the living room holding a banana to his ear and has a conversation into it.

 

I share it all here on my blog but I wasn’t sharing my blog with the people who I should.  I was only sharing it with the people who I felt comfortable with already.  I can’t do that anymore.  I’m calling myself out on my own bullshit.

I need everyone to know the truth about this life.  I need them to know the truth about my children.  That is the best way I know to help break down the walls of ignorance that are between my sweet boys and the world in which they live.

 

 

 

You’ve got the words to change a nation but you’re biting your tongue

You’ve spent a life time stuck in silence afraid you’ll say something wrong

If no-one ever hears it how we gonna learn your song?

So come on ,come on Come on, come on

You’ve got a heart as loud as lions So why let your voice be tamed?

Baby we’re a little different there’s no need to be ashamed

You’ve got the light to fight the shadows so stop hiding it away

Come on come on
I wanna sing, I wanna shout I wanna scream till the words dry out so put it in all of the papers, I’m not afraid they can read all about it read all about it oh

At night we’re waking up the neighbours while we sing away the blues

Making sure that we remember yeah cause we all matter too

If the truth has been forbidden then we’re breaking all the rules

So come on, come on come on, come on, 

Lets get the tv and the radio to play our tune again

Its ’bout time we got some airplay of our version of events

There’s no need to be afraid I will sing with you my friend

Come on, come on

Yeah we’re all wonderful, wonderful people so when did we all get so fearful?

Now we’re finally finding our voices so take a chance, come help me sing this


 

 

 

 

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5 Responses to “Open”

  1. Brinabird Says:

    It’s hard to be open and admit the bad with the good as a mum and a parent. I think it is brave for any mother to share her experiences with others so in my book that makes you brave and honest and I really appreciate that. Thank you x

  2. Tamara Haynes-Rampasard Says:

    Deenie, my sweet thank you for sharing your life with us. You are not alone and so loved, respected, and supported. As I was reading I was smiling because, we all are connected in some way. My kids are not autistic but, gosh darn it I sit in the car or stay at work a little longer just to breathe before going in. I am sure every Mother can relate to the fact that there is so much good that come with children and also enough bad to go around. You sharing your story has caused a few things to happen for me. One, I am so hungry for knowledge on Autism and I am going to get more involved. Two, my respect and LOVE for your hubby, and you has grown OMG, words cannot describe how much. Three, you have influenced me to be more patient with my children. You are a role model for us all. You make us want to work harder. Our situations may be different but, at the end of it all we are all Mothers, you my sweet Mother Deenie has changed my life for good!!!!

  3. Cyn Says:

    ” But how will anyone who doesn’t live with it everyday ever get to know all the different autisms if we don’t share it with them?” Wow….I remembered when I first started writing my blog I did it for myself and to share with a few friends on another blogging platform. At some point I started asking myself the same hard questions about being “open” and truly sharing experiences. I worried about sharing with “all” of my friends and family and what would they think and I worried if I shared would I start to unconsciously censor my thoughts. You are doing a great job sharing on your blog and you inspire all of us to share as much as we can.

    • Hi Cyn. I didn’t sleep well for a couple of nights after I “opened up” because I was thinking about past posts and if I had ever said anything that I shouldn’t have. Now, I am worried about censoring myself going forward. I’m going to try to keep writing as if no-one is reading. I hope I did the right thing. I think I did.

      • Cyn Says:

        I am guilty of going back and looking at stuff….questioning myself…especially since my mother-n-law is now reading but then she told me that after reading everything she now saw a side of her grandson that didn’t always sinc up with the smiley boy that she knows. I flinched but then she said that it helps her understand what we are up against and gives her understanding of the times that she has been with him and was at a loss for his behaviour and now she “gets it”. So one person at a time right? I also feel like I censor myself in terms of some family we spend time with because they don’t seem to want to see the autism…they say “oh he’s okay”. Yes he is but please listen…there is a reason why this is happening. Psst…you did the right thing 🙂


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