Advent & Christmas & All is Not Calm

So today is the 1st of December.  
Advent & the countdown to Christmas Day has begun.

Everyone is jollier, everything is sparklier, everything is different ~ & therein lies the challenge.

One child is unable to make school.  

One refused to even look at the trees strewn with lights last night, claiming no interest in Christmas until December.  Actually, an impressively mature coping strategy from such a junior person.

Christmas will mean different things to different people, a time to kick back & relax a little more, reflect on what we're most grateful for, a time to make more time for family & friends, to socialise, party & gather together, to indulge a little more, a time to be a little kinder maybe, or to share good fortune with the less fortunate.

However Christmas manifests itself for you, & whether you love it or loathe it, it inevitably involves change - change in routines, change in our surroundings, change in what we eat & drink & how we dress even, change in the way people behave.

And if you're autistic, change is not good, however sparkly it is, however beautifully wrapped & presented.  Change is hugely challenging & anxiety inducing.  Routine & familiarity is safe.  It provides grounding, a sense of wellbeing in a world that is difficult enough to work out at the best of times.  Change is the removal of safe.  Change is dangerous.  Dangerous situations cause fight or flight responses.  Christmas brings many changes each day, every day, in every way.  So Christmas inevitably generates adverse behaviours brought about by the need to fight or flee.

So what do we do?

Well, if we were to follow the advice of our CAMHS Consultant, we'd have no visitors.  We'd try & keep things as normal as possible, with as little change as possible, no socialising, no drama over Christmas dinner - it's just another meal & if it's to be eaten on a tray in a bedroom then so be it.

I'm OK with that.  But what about everyone & everything else?

There are many articles giving good advice to survive the Christmas period.  I'll add some links below.  I certainly don't have all the answers but I know we will try & keep things as normal as possible while indulging the children (& ourselves) as far as we dare in the magic of Christmas, being ready to deal with the inevitable sensory overloads, the panic attacks & what seems like everyone's need to 'take control' (disastrous when this occurs concurrently).

My advice, or my mantra, in a (mixed) nutshell: 

* * Sparkles with Strategies * * 

Wishing you a calm Christmas time.

Photo by Stellie Chavez on Flickr

Top tips for a calmer Christmas from the National Autistic Society.

This article on Autism & Thanksgiving is relevant also.  I'm not a fan of the source BUT the content of this article is sound, in my opinion ~ it flags potential issues & suggests how to avoid.

An article via The Mighty by Catherine Contillo who describes her 
3 biggest challenges of the holiday season as someone with autism.


 17 Tips to make Thanksgiving more comfortable for kids, from The Mighty again.
Personally, we do No. 6 every time which also makes most of the others easy to implement!

Finally, in the words of Benjamin Franklin:

"By failing to prepare, you are preparing to fail."

Arriving in Holland

... & happy to be here.

Autism arriving in the family is like arriving in Holland when you'd actually expected to tip up in Italy.

"Welcome to Holland" was written by Emily Perl Kingsley, in her words "to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel."

I came across this early in our journey & it's sentiment resonated strongly with me so I'm sharing it now."

A point of note though ~ with autism & other 'hidden' developmental conditions, there is no announcement from the stewardess before you disembark the 'plane so you continue on your journey still thinking you've arrived in Italy, trying to implement the plans you've made for Italy & to speak Italian, until someone, somewhere, years down the line, finally recognises your struggle & explains that you're not actually in Italy ~ you've been in Holland all along! 

And, for the record, I feel blessed to have arrived in Holland.  It's not as easy or relaxing a trip as I'd planned (someone always has to keep a finger in the dyke) ~ but having settled, & as I continue to explore, I've found it to be a fascinating destination.

Welcome to Holland 

by Emily Perl Kingsley circa 1987

When you're going to have a baby, it's like planning a fabulous vacation trip ~ to Italy.  You buy a bunch of guidebooks & make your wonderful plans.  The Coliseum, the Michelangelo David, the gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags & off you go.  Several hours later, the 'plane lands.

The stewardess comes in & says, 
"Welcome to Holland".

"Holland?!" you say.  "What do you mean, Holland?  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  You've landed in Holland & there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine & disease.  It's just a different place.

So you must go out & buy a new guidebook.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower paced than Italy, less flashy than Italy.  But after you've been there for a while & you catch your breath, you look around, & you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming & going from Italy, & they're all bragging about what a wonderful time they had there.  And for the rest of your life you will say, 
"Yes, that's where I was supposed to go.  That's what I had planned."

The pain of that will never, ever go away because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

End.

via Pinterest (original source unknown)

Angels in our Midst

I'm driven to believe today 
that there really are angels in our midst.

Before the days of knowing anything about autism ~ indeed before the days of knowing I needed to know anything about autism ~ I was so intent on trying to fathom why the parenting I continuously tried to improve still wasn't doing the trick that I wouldn't have been aware of an angel if it bit me on the behind, let alone waft me with their wings.

But after an autism diagnosis, despite the turmoil that ensues, angels actually materialise.  Obviously not in the form of diaphanous, winged beings descending from golden skies above ~ even though the sky this morning appeared ideally suited to angel flight ~ no, more in the way some people just are & how that makes you feel.

And I just wanted to pause to acknowledge & give thanks to some 'angels' who've been at my shoulder recently, providing guidance, calm, sanctuary, acceptance & hope in humanity.

Spookily, given the date, their names all begin with 'A'.  Who would have thought?

Mr A

The founding patron of a very special school that has come to our salvation ~ today is the first day of a new chapter; today is the day we really can start to move forward.  Thank you.

Alastair

The IPSEA case worker who so patiently listened, advised & guided us along the process of appeal to secure a more appropriate educational setting for 'one of us'.  
Thank you.

Abraham

The Orthodontist who has waited patiently (for 4 years) until we were ready & able to attend an appointment.  Who then welcomed us & explained very appropriately for his audience what he was doing & what he would be doing at future appointments & why, what very special TLC he would give & why & what he needed in return.
Thank you.  

'A'

Who, for 'others of us' & separate to the challenge above, accompanied me on meetings with SENCOs at local mainstream secondary schools, armed with a long list of questions around how they accommodate children with autism, to help me find the best possible provision.  
Thank you.

Allan

My dad.  Who died when I was 10 years old.  He (or the thought of him) really is an invisible force at my shoulder & I like very much to think that he was keeping a watchful, approving eye from behind those high, golden, puff ball clouds that dotted this morning's bright blue sky as we drove to Mr A's very special school. 
Thank you & I love you, always.

Angels in our midst, as I say.

And to those angels not yet acknowledged, I am thankful to you all.

Bust of an Angel from skitterphoto.com

Autism Friendly Design

So, I had this light bulb moment recently about how I might bring together a life-long special interest in art & design with my new special interest in autism ~ autism friendly design.

And it turns out The National Autistic Society are running a one day conference on 1st November 2016 in Manchester on 
Autism Friendly Design.

Since autism became part of our life I've had many opportunities to observe, & experience first hand, how ill-suited many environments can be for autistic people & the very real difficulties caused by autism unfriendly environments.  Schools, shops, leisure centres, transport hubs, homes even, the list goes on.

Having literally given up the day job in 2013 to focus on the unexpected demands of family life with autism, my plan was always to return to the workplace once 'things had settled' & we'd found our 'new normal'.

After a couple of false starts, we've still not reached a 'new normal'.  But that hasn't stopped me pondering the retraining opportunities a forced career break might open up.  Could this be my chance to pursue the creative education I'd not had the confidence to pursue way back when or should I find a way to formally build on the knowledge I'm acquiring now about autism with a view to helping others - after all, demand is clearly outstripping supply in terms of diagnosis & therapeutic support whether relating to autism, sensory processing or the mental health issues that can ensue.

Then it dawned on me that there might be a way of combining the two ~ & clearly I'm not alone!

Could I, should I, am I too old, will I be taken seriously, or do I come at it from another angle, from within the autistic community?

That internal debate continues to rage so watch this space.

Pastel Stained Glass via LOVETHISPIC

An Adage

"Sticks and stones may break my bones but words will never hurt me."

Hmmmm ~ I guess we all know that's not true.  

This is especially true for people with autism for a number of reasons:

(a) our differences make us vulnerable to abuse, verbal & otherwise;

(b) our tendency for black & white thinking, literal interpretation & naive egocentricity leave us vulnerable to miscommunication, misinterpretation & to taking things personally;

(c) our tendency to dwell on hurtful experiences, rather than to simply 'shake off', can fuel already heightened levels of anxiety or anger

Today, World Mental Health Day, this untruth is particularly poignant as was illustrated during BBC Breakfast News & their report on the schockingly high levels of disability hate crime suffered by people with learning disabilities & autism.

On #WorldMentalHealthDay we hear that convictions for disability hate crime have risen 40% in the last year... pic.twitter.com/MzpAG2zrAG

— BBC Breakfast (@BBCBreakfast) 10 October 2016

Why Aesthetics & the Arts?

Alongside autism, another area of special interest for me is in a self-defined category of 'aesthetics & the arts'.

I would quickly add that I consider myself an amateur in this arena too ~ I'm certainly no expert in the arts, individually or collectively, nor am I an expert in any associated formal discipline.

But, I really do take great pleasure from pictures & words, and from music & drama, popular & otherwise.  And I can become absorbed by anything I find to be aesthetically or sensorily rewarding, from single pieces of art to images of the wider world around us, naturally occurring or designed, as seen through my own eyes or through the eyes of others.

The arts ~ art in particular & now authoring ~ have been an effective escape for me, even a refuge on occasions.  I used to lose hours to art, to writing too sometimes, to listening to music, even to creating ideas that never saw the light of day (just the bottom of a bin).  And now I stay awake far too late at night collecting aesthetics (or pictures) & words, courtesy of Pinterest ~ a visual thinker's dream social media channel, in my view, & an easy way for me to communicate what's in my head.  Whether anyone else understands my clumsy attempts at non-verbal, visualised communication is another matter but it is all in the pictures.

Interestingly, while aesthetics & the arts are my arenas for escape & expression, these subjects do link strongly back to autism.  Certain autistic traits lend themselves to creative pursuits, like:

• an ability to focus for an extraordinarily long time on one thing (if of interest!)
• a very keen eye for detail
• an idiosyncratic, sometimes advanced, vocabulary
• an ability to think differently, outside the box
• an intense alertness & awareness of surroundings 
• extreme empathy & sensitivity  

So, actually, there is a satisfying synergy & logic bringing these interests together in one place with the anticipation of exploring further in future posts.

And, you know, maybe my passion & autistic traits actually do make me a little bit more than an amateur in those specific areas of the arts that I focus on.  After all, it's a growing frustration in the autism community that autistic special interests are often dismissed as being "unhealthy obsessions" yet if non-autistics were to show similar focus, it would be regarded as dedication, commitment & expertise.

Many an autistic expert is hidden away in their bedroom ... undervalued, overlooked ... their unique skills & expertise untapped & unutilised (I may have made that word up ... if it doesn't exist, it should!). 

The Harvest by Helen Tilbury 2011

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An Armour On Day

An Armour On Day was nearly the name of my blog.  It sums up the bad days when you have to ready yourself for battle, with yourself, with (or for) your children, with family, with school, with strangers.  But I wanted this blog to be more than just about autism & I certainly wanted this blog to be more than just about the bad days.  Because, while autism throws up very unexpected challenges ~ & demands a different type of parenting ~ it also offers magic & sparkles.

For the bad days, though, & even in making the good days good, this quote resonates ... I have acquired patience beyond belief & have discovered the value in making & taking time ... & I mean real, drawn out time ... to listen, to prepare, to plan, to do ... with patience & time by my side my armour is lighter & my battles more easily won.

"The two most powerful warriors are

 patience & time."

~ Leo Tolstoy 

Lovely Girl

Why An Affinity with A?

I always thought I had a connection with 'b' ~ I like the sound, the shape, where & when it occurs, I hunted it down to assert the belief ... but after a recent period of enforced reflection I realise I may well have a greater affinity with 'a'. 

Not a surprise, being such a commonly occurring letter.  But, as well as favouring me in the game of Red Letters, 'a' features in the names of significant people & every company I've ever worked for (pubs & clubs aside ... where D, I & N are the common letters!), leads the way in the addresses of homes that have kept me safe & in subjects of special interests.

One of the most significant of these is autism which arrived announced into our family 28 months prior to launching this blog.  Attempting to make itself known to us for years, in ever more pronounced ways, autism eventually ambushed our lives one memorable May day in 2014.  Out of necessity & desire I acquired an awareness & understanding of autism, a condition previously alien to me, I thought.  It's fascinating, awe inspiring & challenging.  I've met, or recognised, new levels of bravery, courage, anxiety, anger, ambition ... the list goes on.  I've learned a great deal but I'm hungry to learn more & I'm passionate about broadening understanding & acceptance in others.

An Affinity with A will help, I hope.

As will my own diagnosis.

Almost inevitable, but revealing I knew ... I know ... more about autism than I realised, I received my diagnosis at The Lorna Wing Centre for Autism in September 2017.  I'm reluctant to reveal at what age but will describe it as the very early part of the second half century of my life ~ which I hope will be long because with diagnosis comes a feeling of, & a need for, new beginnings ... for living a life meant for the autistic me rather than someone else's idea of me.

However, at the time of launching this blog, my own diagnosis remained a secretly held suspicion so, in pursuit of open & honest communication, I felt I could only publicly claim an affinity with autism.  

This all said: I am ~ we are ~ more than all about the 'a' word alone.  Other 'a' words contribute to my being & politely ask for attention, hence An Affinity with A 
(rather than An Affinity with Autism).

This blog will allow me to indulge in all the 'a' words that are important to me, to collate & share in one place relevant &, I hope, interesting content.  
And I'll flirt with 'b', maybe even 'c' & 'd' on occasion, as an aside.  I hope my posts will appeal to any likeminded visitor ambling by.

Please do take the time to let me know.  

And feel free to contribute & share, acknowledging any original content please (as I will always aim to credit others' content referenced here).   

Fair's fair & credit where credit's due.

I'm Sara (Sarah without the 'h').  Muddling Autistic Ma to our #autismrich family.  Sucking @ Social (a pun my pun-loving angel fish would be most proud of).

Why autism rich?  
I wanted to acknowledge a number of autistic family members (including myself) without specifying who is or isn't autistic.  I'm conscious that all my children should own how they present themselves to the wider world so I hope this term succinctly hints at multiples within our family & reasonable lived experiences, as well as conveying a pride in our differences & strengths, promoting a general attitude of positivity that I hope non-autistics especially will register & fellow autistics appreciate, despite our often disabling society.

I genuinely believe our neuro-divergence enriches.  
But for us & others to benefit fully from those riches we need environments ~ societies ~ that better recognise & value our differences, that enable more than they disable us, & this is where a seismic shift is needed. 

via Pinterest (original source unknown)