Wednesday 26 March 2014

Just another day ~ a few more words ~ steps ahead to witness change & ~Acceptance~


Semantics in shades of blue....

 
We might lose our way in shades of blue...

We offer our world versions of rosy pink & for our family ~yellow & orange~
& well, ~All The Colours~
We frame it all by listening to & reading the words of others

Yet try to find & define our own voices & have our voices – all of our voices heard

Semantics cloud our views
Differences can create waves yet we learn to ride them out
We are in the middle, on the fence and just trying to live our daily lives
Yet are being encouraged and pushed and pulled in various directions

Life is never one dimensional...

... a spectrum a fitting term
We are not just blue ~ we are indeed “All Colours” and “All Voices” looking for acceptance

We are vibrant and alive and speak in different ways
...seeking acceptance ~ living our own version of acceptance

Without that one element ~ without acceptance
No matter what colour it appears to be

We could continue to be defined by the Blues & in the Blues and the Semantics
~~~
Or perhaps we will allow all of the colours we live day-to-day to light our way....


Photo Credits to Nicolas ~
he took them when he was 6 years old ~
May 2012 ~ School Trip to Around The Bend Farm
near Newmarket, ON
 


 

Monday 18 November 2013

You can't blaze trails without us ~~ Flash.Blog.11.18.13 - What Autism Means To Me - #thisisautism



I love somebody with Autism ~ I love many people with Autism or those who consider themselves Autistic or perhaps led lives undiagnosed or are still discovering how Autism touches their own lives.

Our youngest children have challenges that might at first glance appear to be “behavioural”.  I had always feared that term & since our son’s diagnosis have avoided using it.  I have felt put into a corner during a pre-interview for our local ABA services & felt that the term was being used to blame him for the things that he faced in his everyday life.  Was this because that is how it was framed or was this because he is bright & therefore would try to manipulate the situation?  Far from me to be an expert in the area of Autism or A.D.H.D. back then or even today, even I was guilty of tending to be so confused by his bright mind & his need to negotiate to the point that it would just became exhausting.

Today I DELIBERATELY  do not use the term “behaviour”  ~
for I get him – I believe I always have – I just didn’t know how to express it to him, for him or in his everyday life to support him.  Now I do – he has Autism & I will Never.Ever use this as an excuse to explain away his behaviour...

As he matures – he can sure be challenging & sometimes I can determine when he might be trying to get his way ~ as is human nature ~ but I can guarantee I can tell when it is about his sensory issues, his executive function challenges & his need to be busy almost all of the time (it’s like a little Brain.Gym the way he always seems to be asking what’s next to fill gaps of pre-planned activities) & I will continue to use those areas of need to support him & even challenge him ~ for these areas can sometimes be used as strengths too & that is how we’ve found our greatest success so far.

As for how Autism can be a less visible disability ~ for our daughter – it might appear to those who don’t know her at all & for some who think they know her would see her anxiety as defiance when it is usually just  about the need to try in some way, any way to control her environment & to feel safe....  I could continue with how we are just now seeing similarities in her areas of need with those of her brother (hers seem to be much more noticeable now or somehow developing through her experiences in everyday life) ~ & with her being that much older – I foresee people thinking they get who she is – when they might be surprised to find out she too is dealing with Autism.


***There are symptoms or daily challenges &/or secondary disabilities which aren’t always obvious to others (who just don’t happen to be touched by Autism directly or indirectly or to have become familiar through various campaigns or even news items) & sometimes even with those who do:

Emotional Dysregulation & Stamina Levels have been central with our children – but not necessarily constant or daily issues.  Motor planning, Learning Disabilities, Low Muscle Tone, Digestive or “Gut” Issues, Food Sensitivities & Intolerances & even more common or commonly recognized Food or General Allergies. 

Many of these circle right back to the Sensory System & although I feel I learn more & more every single day, I make an effort in some areas & sometimes just by living day.to.day with Autism in our family & yet I still feel overwhelmed by it all ~ as I’m certain our children do too!  For I have always felt that to live a good, healthy & fulfilling life is to understand our children & that was set in motion the day they were born or even while I was pregnant with them & even while we planned & hoped to get pregnant & to have children together.  This did not change with the diagnosis of our son nor the journey our daughter is now on to confirm, she too has Autism.

So today I share stories of our young children ~ for we are in the trenches with how we hope to navigate, support & advocate for & with them in a world where we are supposed to have better awareness ~ to hopefully enlighten you & ask that you also find it in your heart to accept them for who they are... 
 

& what does Autism really mean to me ~ it might be best to say ~ Acceptance & Inclusion for our children & for anyone with Autism &/or within the Autistic community in all areas of life ~ at this moment in time we don’t have different dreams or hopes for our children  before his Autism was suspected and eventually diagnosed nor before we started to understand how she might be struggling too ~  we do however know that in order for them to Dream for themselves & succeed in their own dreams – we will have to continue to teach the way they learn best & that is quite often ~Very Different~ than the way mainstream society teaches & expects them to learn & grow ~~ we will help  them to develop their own voices – by any means necessary & we hope to advocate enough that society at large understands & accepts that providing a safety net for them while they are young does not mean they won’t learn to stand on their own & use their own voices ~ however those voices communicate!!

 
Thank you for taking the time to read & share this Blog Post – on this Flash.Blog.Day!

Saturday 21 January 2012

Chapter II - as it relates to our daughter & our lives

Micaela is a lovely - wonderful - chirpy little lady - 3 1/2 years old now - just reflecting how time just - melts away - when Nick started J.K. in 2010 - she was just 2 - for her - a Wonderful Stage....

& today's post - isn't about her changing - from that Wonderful Stage or her full of Pepper self - but about another necessary evil - during our early journey with Autism~~~


This time around ~ it isn't with the same ignorance - this time around....
just the sight of these words = such pain in my heart!

*but I just read about how we grieve - as parents of children who might not be what we envisioned - for how our hopes, dreams & expectations for our children change when there is an official "Label" or Diagnosis - how we feel we have to grieve the loss of this version of the child we know today - I don't know if I ever used that word for how we felt with Nicolas - in hindsight - I sure hope not - it isn't that we lose her or a part of her or even expectations of how life looks or looked before any interpretation of an Early Screening or further into these questions - into an actual assessment - it is about not having known a bit sooner - (for Nick especially) but even now with Mica - just a bit more confident sooner than here & now - that there was just something, or perhaps - just "Nothing"?

Last year it was just exploring the kinds of things that had us questioning our challenges with Nicolas.
This year - it is beyond our understanding that Micaela would have enough similar traits (both positive & negative) - or **Flags** which have moved us to take action - it may be to just to allay our fears & although not "unfounded" - but yes indeed our suspicions....

Several people have suggested that Mica could be "mirroring" her brother's symptoms or traits...
but after compiling a list - we are now under the sincere impression that it is more than this - even if it isn't quite the same as Nicolas's diagnosis - we believe that we will need support to understand what is going on ~ &/or how we can move forward & work forward.

Tuesday 13 December 2011

In December - there will be so much Joy - so much to celebrate but some tears too....

 

You might read today or shortly after I post - but maybe come back again - I'll probably add some more....

Nicolas doesn't know this yet ~ but we have had an opportunity to place him in a very specialized class - a brand new program in a school not too far from our home - which will allow him to grow and mature and move forward in ways he would continue to experience extreme challenges with at his present school....

That is not to say they aren't indredible & amazing & that they Couldn't have kept him....

Quite possibly one week from this coming Monday - he will board a school bus for his new class ~ new school & our new approach to this continuing journey - in particular his education ~ however this translates into his everyday success too....

I am so sad - not to say I'm sad about who he is.... we've known him all his life - & he is just the same - although now we know him better & continue to grow with him (& his little sister) that is always a part of the way we parented them....

I am sad - becuase he should be able to stay where he is - "should" - in 2011 ~ in Canada there should be programming and budget reserves for just such a placement - where he could be worked with for at least a full year - to truly see if his entry into primary school could happen in a "Main~Stream" or an "Inclusive" environment....

so we can hope that our decisions allow him to learn more about himself and about how he will be back to his "Home School" or within a setting more like he was introduced....
I will show him our excitement about how "They Invited Him" - how they just knew they had great things designed just for him & that he would be allowed to do so many of the things he truly loves and is good at....
We will celebrate this as the gift that it is -
We will also support him through however he feels the need to transition through this "Big Change" - so we'll just try not to show him that taking this step (isn't truly the way it should be) is an Adventure, one that we hope to keep a record and keep updates on....

We have also agreed to have our daughter Micaela screened with our Region if our Family Doctor & or Paediatrician agree......

Tuesday 29 November 2011

~Start~From~ *Now*

The Best of Summer 2011

The object of my affection can turn my complexion from white to rosy red....

& he turns 50 in less than 1 week....

With this wonderful man, whom I have loved since I first met him in 1985 ~~ we have shared our lives for ~ 20 years together this past summer - + raised one young man into adulthood (albeit with a map that was completely uncharted),

& with YEARS Worth of memories of being, feeling & living so very "Young & Restless"!;

I am (We are) now raising a new generation - in 2006, early spring & a year to the day that we were married we had our second son (hubby's first biologically) & then our daughter in the summer of 2008.

 

and then.... we moved - from a suburb to a Town - which is more like a suburban HUB if you will - as our new Town (city really) feeds many surrounding cities/towns & rural communities...

from that move to present - our lives have been on another uncharted course - but this is life - or life's journey for many people....

 

Let me catch my breath and bring you all into the present day; our times & adventures - just over one year ago - we attended a screening - & I can tell you - it was a real life screening

beyond compare - not a movie but in hindsight - indeed - it is a pivotal moment in "The Story that is our Life Today"...

We were referred to our Regional Early Intervention Services by our son's brand new school - brand new as he had just entered J.K. - but also brand new - as it was the School's second year in operation.  We knew our son had a "Strong-Will" he is Bright - had attended no daycare, nor nursery, nor pre-school programming, early on this ~~ was mostly by choice - then it became apparent later - maybe halfway into his 4th year & certainly from then on - that he might be a "handful" and we were more resistant to placing him until an actual school program.

He had attended gym classes x 3 sessions (approx. 10 classes per) in our new town & we didn't really have hesitations about registering him for soccer - we knew we would - just not sure if it would be the Spring before school or sometime after he started school - & that spring of 2010 is when we really saw things which in hindsight - appeared somewhat "Behavioural" but by halfway through his season - somewhat "Alarming" - he finished the season - missing only a couple of events - due to scheduling for one & apprehension for another - but he finished the season & has "GREAT Memories" thankfully -

& can't wait for us to let him try again (& we will - in time & maybe after a specialized program) - so back on track - before school started (words - too much repetition?) - we set up a Dr.'s appt. - we had already spoken with our *New* Family Dr. about Nick's learning style & then about our concerns - Sensory seemed to be the focus & her advice was school was the best place for him & this would sort itself out from there.... (they were well versed - had exp. with all kinds of children) - but were they ready for our guy!?  "Dynamo"! - a Busy Boy, with a sweet nature and a very sweet smile (with this little tilt of the head - this may have sustained the love of many...)

& even though we had researched to some degree & beat ourselves up with questions about our parenting style & sought other parents advice & exp. & hub.'s family was often consulted by him - nobody - had any idea....  even the term Sensroy really wasn't on our radar - he was a busy boy - but we were indeed struggling.....

Autism - never for one moment - entered our vocabulary - sure we would review the "Signs" - but it was indeed excluded - by us - "The Experts" - >>>

 

 

I am back to the paid work*force 2 months new - & this Blog has been in my heart since the last week of Oct. 2010 ~~ which would present all of the daily.daily life that makes us "Who we are & who we will become" & another passion....>>>>>>

Real Estate - from the home.sellers & purchasers point of view - >>> with some input from the Agents - & both the blog & the Real Estate angle to it - are a from this Novice's Approach - an approach which is def. grey - but to be

a full spectrum of Life - that I can promise!


 
& here are the Three Best **acutally my entire content - or "other" Blog Posts - which are a part of the Face.Book - I had to share - I had to find a way to journal ~

https://www.facebook.com/?ref=logo#!/note.php?note_id=10150300456019071

https://www.facebook.com/?ref=logo#!/note.php?note_id=10150166832854071


Tweeter-Dee or Twitter-Dom - it will be one heck of a ride.
Thanks to http://www.todaysparent.com/ for giving me just a little bit of "Ooomph" to push this blog into reality...