The Autism Gratitude Project 2012

For the last two years I've joined a lovely facebook in friend doing an Autism Gratitude Project during April to mark Autism Awareness Month....  I have had one HELLUVA year since last year's gratitude project and after the near demise of my marriage AND near demise of me (see this post for further info on THAT), in large part due to the stress of autism, it would be easy to focus on all the negative things that autism has brought into my life.

 

I am going to do The Autism Gratitude Project again this year though as it just might be what I need to remind me of all the wonderful things are in my life also in large part due to autism and to maybe even see that the near demise is indeed something to be grateful for one day as it's my hope that the events that damn near broke me will eventually be the step in my journey that strengthened my stride into unbreakable.

 

So on the day before Autism Awareness Month officially started I marked my gratitude by acknowledging that I'm grateful the above statement reads, NEAR demise on both counts and not ACTUAL demise..... Small but significant steps are being made to move further away from any kind of demise every day. 

Here we go though, it is now April 1st and that means Autism Awareness Month is officially underway.

Happy Autism Awareness Month and please join us on facebook or post below in my comments section if you prefer or maybe just write a journal for yourself but why not join those of us who choose to see the gifts of autism by stating one thing you are grateful or each day during April because autism entered your world.  It can be a positive thought, a happy/flappy story, anything.  I'll start......

Autism Gratitude Project 2012 - Day 1: I am absolutely filled with gratitude to be surrounded by the love and support of some truly remarkable people I've met through autism. The real everyday heroes who literally change the world through their tenacious courage to advocate and constantly fight for their children but who's cup is never running so empty that they can't offer a drink of love and support to their friends fighting beside them. Bravo to my amazingly brave, brilliant, talented and exhausted friends who give a new definition to the word strength. I am grateful for each and every one of you who I would never have met if not for entering this different world of autism/additional needs. You know who you are and each and every one of you raise me up.

Much love to all of those in my world who inspire each other and me.

Before and After

Here's my view as I write this post......  The horizon.

It's quite symbolic as I look towards brighter horizons actually.

To bring the reader up to speed with events gone by from previous posts I promised to update about...  The Wiggles concert was a total hit with my H, the local show I talked about in a previous post that we were attempting with the boys combined with ferris wheels, animal rides and showbags was also a successful family day out, we have meetings to start J's school transition booked and things look fairly promising with regards to that.  BUT......  both boys anxiety, meltdowns and challenging behaviours have increased over the last few weeks and I think it could be a case of my energy being transferred onto them if I am honest with myself.

I have not had much creative time of late as I've been too busy putting out fires in our everyday life here at home, working and feeling a bit blue.  (The putting out fires is quite literal but it's a long story best saved for another, more light hearted post).

I've been asked to participate in some wonderful opportunities to raise the voice of families living with autism which via speaking engagements that I should probably (and briefly did) feel incredibly proud about.

I have also been given the gift of a makeover on national television (see here) and I should really be looking forward to it as I rarely do anything for myself and cannot remember when I even bought anything just for me so to have someone buy me some clothes and help me with some styling issues is very welcome.  I am feeling low though that I am neither currently proud of being asked to speak nor am I looking forward to being publicly made over as I have allowed myself to buy into negativity that may or may not be intentionally being sent my way.  I accept that letting negativity in is actually my own choice though and I am working to fix this.  The makeover might be just a superficial pick me up to some but it is deeper for me than clothes I now realise.

This post can be considered my "BEFORE" picture if you like.  It's not a picture of the literal sense it's more of a picture or insight via my written thoughts and words into why I felt I needed to apply for an opportunity to even have an "AFTER" picture for myself.  This Before picture gives you the info about the place I was in when writing my tentative email to receive the makeover.  So trivial in the grand scheme of things and nothing like what I would ever normally put myself up for.

So here is my "BEFORE" in all it's truthful, honest and possibly pitiful glory.......

I am a completely different shape and size (and person really) than before I had children.  Since I have had children I've been caught up in a whirlwind of family dramas and turmoil that eventuated in two autism diagnoses among other things including health issues and weight gain but confidence, friendship and certain freedom loss.  I have had no idea as to what suits me anymore and no time to even care about what I look like.  I have no real interests anymore aside from my boys and their futures. 

I barely have time to catch up with friends and when I do all I can think about is what autism related therapy I need to be thinking about next and it's probably all I talk about too.  I know some friends are avoiding asking me to catch ups. It is devastating when I know that my company is so draining for some friends they would simply rather keep the catch up secret than invite me and endure an hour with me, my anxiety and my one track conversation.  Of course they don't tell me this is the case.  I assume that is to spare my feelings but I can read between the lines...... Or maybe I am in a low spot and simply misunderstand.  I don't know and simply hope I am wrong in honesty.

Whilst on this "BEFORE" and honest track....  I often pretend I don't care what people think of me.  I pretend I don't care about a lot of things.  I sometimes do though. Who in honesty doesn't?

I'm sure the fact that I care about my boys' outcomes is obvious.  The fact I care about autism awareness is certainly obvious too as it's related to how much I care about those beautiful boys.  That's about it though that would be obvious to most.  I don't have a life outside this strange but oh so interesting little world so I am unpractised in the ways of the outside world these days so it's difficult to be feeling excluded from that little world too.

I've lost some connections in the autism world recently. Those broken connections seem more difficult to understand than being excluded from the "old world" of typicality I once lived in I think as those in my ASD world would know how it feels to feel excluded.  It was one of those things I pretended I didn't care about too.  I do though. That is quite difficult to admit.

I once pondered that if we are all in the same boat why must we constantly muddy each others waters and create unnecessary waves?  Surely we should all be grabbing an oar and getting on with the job of paddling to safety together, handing each other a life jacket and sometimes riding out the stormy waters together.....?

Everything I do with regards to raising autism awareness is about my boys and the friends I've been blessed enough to find in this world.  Nothing I do with regards to autism awareness is to do with my ego. It's ironic if it's perceived this way considering what I have disclosed here (and to many of the people swimming along in these muddy waters at one time or another) about my low self esteem.  Ego?  What ego?  Anyone with self esteem low enough to care that someone has misjudged her has no ego. 

I just want to get on with the business of raising my boys to be confident about who they are. That's a bit difficult though if my own confidence is less than zero in the "BEFORE" honesty (yep again with the "BEFORE" and the honesty).

I might be preaching confidence to the boys but I am sure not practising it at the moment.

I don't know who I am outside of autism anymore.  I wrote this in my application to have that makeover.  I really don't know what else is out there in the typical world that I don't live in anymore.  I exist within ASD to be closer to my children who live on the spectrum.  I try and live within the spectrum and see from within it's perspective as often as I can so I can understand my babies and help the rest of the world understand them too.  Yes I want to help them and that was my original motivation to become involved with raising awareness.  Personal experience is something that will always be your motivation to get involved in a world where awareness is so sadly lacking and help for our kids is so scant.  Isn't it about time we just welcomed all help and supported each other in the way we want our kids supported? The only agenda I have is to help raise awareness for autism (and also families living with other special needs actually).  I'm in a position to do that through experience and empathy.  Some appreciate it.

Regardless of how your brand of support is best offered, we are all different and possess different strengths.
Sometimes, if well supported, difference can be wonderful and combining our different approaches can get a job done much better than going it alone and not sharing the hardships.

This is what I'm desperately preaching to my own children? Difference can be a strength. Show people what you CAN do and ask for assistance on the things you are still learning about or need a hand with and put that same hand up when you feel low.

Why am I so open?  Why do I write about this?  Why would anyone be so willing to openly admit they feel low and excluded sometimes?  Because my honesty and openness might ring true for another person feeling low today too.  If there are people reading along who gain no comfort from shared experience or the expression of ideas then this honesty would be of no use to them and that's ok.  I do believe it might be of help to some though, including me through expressing it.  I'm also so open here because it's my way of talking to others.  I've used the word isolation when discussing families living with ASD before.  This is my way of showing and sharing isolation by seeking conversation and connection.

I guess I'm now getting into where I want to be for the "AFTER" .....

I am no longer interested in answering to negativity or letting myself feel that it's ok to put up with feeling less worthy to have an independantly thinking brain and voice.  My willingness to continue letting that in is even further below zero than my confidence.  I'm letting go of hard feelings (yep, I admit to having had them).  They are not worth it and they are sapping my already low confidence to the point that I have changed who I am lately to NOT feel proud of any of my endeavours.  I have devalued myself and my work because of some "chinese whispers."

After allowing myself to buy into it all, I didn't feel proud of anything I've done to help raise awareness.  I just felt small, worthless and as though I should hide my accomplishments and actions to avoid judgement.  I am so terrified my boys may one day feel excluded, worthless and small. It's agony.  Judgement is something ASD families unfortunately learn to live with even though we hate it and sometimes we see judgement where there may not even be any due to being on the defensive just in case.  It's a catch 22 and I have been totally sucked into it of late.  That's why I've been so quiet over here.

I forgot that when you put yourself out there, not everyone will ever approve and not everyone will like you. I forgot that that's ok.  Everyone is different.  Isn't that the point I try and get accross for my boys?  It's ok to think differently even if you are a grown up just doing your best and sometimes feel lost.  Our kids must feel lost a lot as children trying to navigate a world they are differently wired to deal with.  It's not a nice feeling at all to feel lost or small.  It makes me sad but determined to listen to those in my life who are behind me and if I listen hard enough seems to be a whole lot more people than those who are not.

I forgot that what I am trying to teach my boys is a good lesson for everyone whether living in the ASD world or not.  We are what we are and what we are is probably flawed but that's soooo ok.

I have not been listening to my family who are proud of me, my friends who are proud of me and any of the people who thought enough of what I have to say to ask me to participate in any of these events.  I'm going to start listening to them again though.  This is how isolation can be turned from defensiveness into reconnection with the world outside of the catch 22.  To listen and to let some sun in, as a friend of mine who's inspired me to remember that I do NOT have to be perfect because I am already perfectly me...  Yes, a fellow mummy with a very sunny attitude who preaches AND practises being positive and being proud to be yourself (Sunny Mummy) has helped me remember it's perfectly ok to be who I am and remember to shine.  The perfect "AFTER" outcome.  Some nice new clothes, a bit of pampering and a more open attitude to positive over negative.

I'm hoping this physical makeover will help build my emotional confidence up enough to rally for my boys again and resume fighting for them so my energy will be transferring onto them in a much more positive way too and allowing the sun to shine upon their pretty heads.

Isolation, honesty and hurt. Sounds like a big "poor me" even to myself.  I might well be criticised for this post but in honesty I'd rather be criticised for who am am than who I am not.

It would be nice if we lived in a perfect world.  We don't live in that world though so I accept it's not within my control to change people's perceptions.  We do live in a world where you are in control of your own actions and perceptions though.  If I can talk the talk for my boys, I had better start walking the walk.

Speaking of walks, I'd best try and go for a walk to help me shift some of that unwanted physical weight along with the emotional weight I've been unnecessarily carrying of late.........

Who knows what the "AFTER" will really look or feel like?  Hopefully it's more attractive in that positive sense than my current "BEFORE" but only time, some hard work from me and the makeover people will tell.  It's not about feeling beautiful on the outside for me.  I want to feel beuatiful on the inside again I want to grasp onto seeing the inner beauty in me that I can clearly see in my special boys.  I need to feel that again.  I WILL feel that again.

In the meantime I gratefully welcome anyone with an oar to help me stay afloat until a more light hearted post of daily My Story Our Story shenanigans........  (Coming soon)....