Wednesday, 28 February 2018

Autism & Chiropractic

On the seventh day, God realised he had an awful lot of time to kill, so to give him an endless source of entertainment, he erased the common sense setting in the human brain, and replaced it with a slack-jawed fascination with all things bizarre. 
Like moths to a flame, we are drawn to things that defy all reason and logic and cheerfully ignore evidence in favour of the ridiculous.  It seems that the Big G is a bit mean-spirited behind all his holiness, but I suppose he needs a few belly laughs to help him through eternity.  At some point he mixed it up by throwing in a handful of alternative therapies, and the combination must have had him chuckling into his cosmic ZZ Top beard for centuries.  Humans and homeopathy, aromatherapy and chiropractic (as well as the other usual suspects)  have proved better entertainment than binging on any Netflix box set.  Chiropractic, in particular, is fascinating as it's hugely popular for absolutely no reason.  When we aim to entertain God, we really go for it.

Chiropractic is the external manual manipulation of the spine and joints to treat disorders.  It was founded in the 1890's by David Palmer who, in an event of singular convenience, received his training from "the other world".  I think I may have attended the same school as him when studying parenting skills, where I received a BSc in Threats & Bribery and a Post-Grad Diploma in low grade Substance Abuse .  My son will do just about anything for a packet of salt & vinegar crisps, but if the going gets tough I sometimes have to resort to threatening to dismember Bob the Builder with his own power tools to get him to toe the line.  If these measures fail, there is always wine. 
Luckily, parenting isn't a popularity contest.

Palmer advocated that misalignment of the vertebrae is the source of all illnesses and disorders,  and that adjustments can be applied to the spine, or joints, to restore balance.  No medicine or surgery is required, but some alarming sounding techniques have been imported from the 'other world' to cure all the world's ails;  craniosacral therapy (where the unfused sutures of an infant's skull are 'massaged'), the 'toggle drop method' (where the practitioner performs quick thrusts on the spine with their hands) and the 'activator technique' (where a spring loaded device is used to apply force to a joint) are just a few of the methods used.  Bearing in mind the esoteric origins of Chiropractic I'm a bit disappointed at the lack of dragons and unicorns, and feel it could be really tarted up with a bit of purple smoke and a few glittery crystals.  Battering people's bones and squishing babies skulls seem like pedestrian skills to learn in the spiritual dimension,  but if you don't mind being contorted into positions normally only seen on adult TV channels, then maybe it's the therapy for you.

Most chiropractors seem to peddle the treatment of back-pain as their main bread and butter, but predictably there are no shortage of therapists claiming to treat a colourful array of conditions including Autism, Bells Palsy, hearing loss, IBS, sleep disorders, depression and anxiety, hypertension, ADHD, PMS, migraine etc etc.  One site even mentions treating testicular pain, but it doesn't specify if this pain occurs before or after being presented with the bill.  As with any other quack therapy, my big concern is delaying medical treatment that actually works, but there is also an unsurprising risk of injury being caused by having your spine twisted into a giant, bony corkscrew.  There's a risk of causing new injuries, and a small but worrying risk of an over-enthusiastic therapist causing dislocations, blood vessel tears and worse; in 2009 a 3 month old baby died after receiving craniosacral therapy in Holland, and in 2013 an Australian baby was lucky to survive having her neck broken during a Chiropractic treatment.  But small matters like death and disability do little to affect the booming business of alternative medicine.  

One website helpfully, and with a happy lack of conscience, claims to treat Autism by 'restoring proper neurological functioning', but wanders into the arena of comedy when it suggests that the cost of treatment is "priceless".  I'm tempted to email them to find out if this means the treatment is free, but on balance I'm not sure it'd be worth having my inbox  flooded with spam.  There's no shortage of Chiropractors willing to cure our kids Autism,  and sadly, I'm sure they have plenty of business.

If you're the type of person who enjoys having their neck cracked, you can get it done for free in any Dundalk chipper at 2am on a Sunday morning.  However, if you'd prefer to pay for the pleasure, you can visit a Chiropractor, relax on their comfortable couch and and have them enthusiastically pop your vertebrae at your convenience. 
Personally I'd prefer to get it done for the price of a bag of chips, and if I have my son with me maybe a bit of neck-snapping will cure him into the bargain.
A cure for Autism and a bag of chips sounds like the perfect weekend to me.

Thursday, 22 February 2018

Autism & Social Stories

Kids shows are great. 

Who doesn't love watching a passive-aggressive Mummy Pig emasculate her narcissistic, self-deluded husband, or enjoy wondering when the emotionally stunted Bob the Builder will finally declare his undying love for Wendy (who really is a closet cut-throat business woman and is planning Bob's eventual downfall by taking over his construction empire)?
It's possible I drink too much coffee while watching these shows and my overactive mind turns cartoons into Game of Thrones Jnr,  but there's  more to kids shows than laughing a bit too much at gratuitous violence and knowing that the good guy will always win in the end.

"you are so screwed , Bob"

Humans have used story telling to educate and inspire since we evolved from our cradle in East Africa and used our ability to communicate and co-operate to wipe out every other (often physically stronger) Sapien group on the planet, just because we could tell stories.
Stories are used to build cultures, to teach survival skills and to manipulate minds.  Homo Sapiens managed to create co-operation on a scale not seen before, because we told, and bought into, the stories of religion, or commerce,  or history that enabled strangers to work together towards a common goal.  No other species does this.
The reason we love stories so much is not just that we want to find out if  Norman is the secret love-child of Fireman Sam (two gingers, one small village... go figure); we love them because they fast-tracked us to the top of the food chain.

I didn't appreciate how valuable stories are until my son was diagnosed with Autism. 
Our kids have difficulties coping with social situations that most others take for granted, and cartoons can break them down into concrete, bite-sized chunks using characters they can relate to.  Peppa Pig, for example, has some great episodes on a visit to the dentist, having your eyes tested and buying new shoes which are activities that are a tinder box of anxiety for many of our kids.  Giving a child a clear sequence of events in a relatable way helps remove the fear and uncertainty (although it's probably best not to focus on the marital dysfunction between Peppa's parents.... it's about time they were put to better use as a nice bacon sandwich instead anyway).

not so passive aggressive now

The value of story-telling did not go unnoticed for our autistic kids, and social stories were developed in the early 90's by Carol Grey to provide "short descriptions of a particular situation, event or activity which include specific information about what to expect in what situation, and why".
Like all the best ideas, social stories are genius in their simplicity.  In a similar way to PECS, they capitalise on the autistic child's strong visual style of learning and concrete thinking and can be used to help them deal with self-care, social events, changes and behaviour modification.
Even though we had already used social stories with my son to help him with toilet training, bolting and eating non-edible items,  we really hit the jackpot with them when it came to navigating the choppy waters of puberty.  A few years back his teacher and I put together a booklet explaining to him that even though erections are normal and not such a big deal, that they are best not displayed like a prize-winning exhibit in a Fabulous Penis competition (my son is a proud boy), and that masturbation is not a spectator sport.  Having a booklet we could (and still do) constantly refer to is worth it's weight in gold. As well as helping to teach your child, they can also help a parent who maybe finds it difficult to discuss sensitive issues (although in truth, by the time your child reaches puberty, most autism parents are happily unburdened of any delusions of dignity they might once have had).

(these are a couple of pages from my son's social story on puberty)

It makes sense to develop a social story with your child's teachers so that everyone is working towards the same goal.  There's a great book called 'Taking Care of Myself' by Mary Wrobel that you could use to create and adapt your own.

There's really no down-side to using social stories with our autistic kids.  If only we could use them to teach our neurotypical kids that parents are more than meal-producing, cash-dispensing laundry wizards, we'd be laughing.

Thursday, 15 February 2018

Autism & The Dopey Spider

Once again, I'm publishing an old post from a previous blog, as I'm a bit preoccupied with trying to un-batter our battered house (it seemed like such a good idea when we started).  
Anyway, this was written three years ago, when my main man was 10.  Enjoy XXX

Autism and the Dopey Spider

I have often heard those with special needs being referred to as "slow learners".

It's true that Finian can't comprehend society's fixation with Kim Kardashian's alarming arse.
He can't add and subtract enough figures to cause a banking crises.
He will never understand religion, and so will never hate anyone enough to burn them alive in a cage.

I wonder how many lifetimes will it take to teach us "normal" people (the ones who lie and cheat and steal) what this disabled ten year old kid already knows.
The one who is a "slow learner".
The who who fearlessly loves without agendas or conditions.

So far he has been gracious enough to teach me that most of the crap I consider a problem, is not a problem.
He is a patient (and persistent) teacher.

He has taught me that chocolate hand-prints on the wall are not a problem, but bloody ones are.
I have learned that screaming during a painfully tedious school play (him, not me) is no big deal, but running out in front of a bus is.
I now know that not living in a house ripped straight out of the pages of 'Perfect Home' is fine, and that living in an untidy home full of love and mis-matched cushions is great.

Most of what I consider important, is not important.
Like the best story-teller,  he adopts the "show, don't tell" approach.
He reserves his few words for the important stuff, like hot chocolate and ice cream.

I am a frustratingly slow student, and sometimes I cry and throw tantrums and drink wine in an attempt to avoid his lessons.
But they keep on coming.
If I remind myself often enough to stop being so obtuse, that surrender is not the same as giving up, then I will stop wasting time and energy resisting, and open my heart and ears to learning.
Finian is living embodiment of 'don't sweat the small stuff' and I can only hope that a little of this will finally rub off on me.

Finian is beautifully free from the web of conditions, protocols and unattainable goals that weigh us down and eat us up.
He has attained a level of wisdom that most of us could not hope to achieve in one lifetime.

Y'know, the grandfather of modern physics, Albert Einstein, was once labelled a slow learner.
When people finally listened to him, he altered the entire course of scientific thinking.
Imagine what the world would be like without silicone butts, thieves wearing Armani and religious fanaticism?

And with Finian in charge, there'd be a whole lot more chocolate.

Saturday, 10 February 2018

Autism & PECS

We love acronyms.

Whether they evolved due to laziness (the effort of using entire sentences is just ......) or expediency (it's much easier to say you're quickly going to the ATM,  than to the Automated Teller Machine to be publicly humiliated by your financial  starvation... I'm pretty certain the noise I hear gurgling up through it's innards is mocking laughter), is anybody's guess, but  BTW they've been making us LMAO for years now.
My son, interestingly enough, has decided to forgo the  acronym path as 'what the fuck?' is his new favourite phrase.  It's a question humans have been asking themselves for thousands of years, and there is still no clear consensus on what the fuck actually is.  Evolution is slow.  But I'd actually be quite happy for him to ask "Mammy Jean, just WTF is it all about?" so that I wouldn't have to explain to his teacher that we don't swear at our son like salty sea dogs, but reserve choice language for, well, everyone else.  So, fuck knows where he picked it up.  Must've been on YouTube.
So acronyms are handy fellas sometimes, but swearing and Autism is where they shine.

And now for the acronym bit.
PECS (or Picture Exchange Communication System) arose out of the behaviourist movement and teaches the child to use pictures to request what they want.  It's ingeniously simple in that the child learns that they are rewarded with their desired object in exchange for a picture of it (imitating the two-way flow of conversation).  They will ultimately learn to spontaneously request items and hopefully progress on to asking questions and passing comments (speech therapy code for 'having the craic').
As long as the desired object is Nutella and not a troop of dancing badgers, it's all good.

no dancing badgers were harmed in the making of this blogpost

When I did an image search for PECS  I was assaulted by images of bare-chested men who would benefit from wearing good, supportive bras... I had a bit of explaining to do when my husband walked in on me.  But now that he's reassured that I'm not trolling Tinder for gym bunnies, here's an example of what PECS (and not pecs) look like.

Here's how it works;
Phase 1; The child exchanges a picture for an item they want more than life itself  (avoid pictures of badgers at this stage).
Phase 2; The child learns to generalise exchanging  a single picture in different environments, with different people and at different times  (consistency is important.  Mammy can't say "No dear, you can't play with guns" if Daddy says "Yes, son, have a fully loaded semi-automatic.  Go shoot badgers").
Phase 3; The child learns to discriminate from two or more pictures to request their favourite thing.  The pictures are stored in a binder using velcro for access when required ( the badgers are off having PTSD therapy at this stage).
Phase 4; The child learns to form simple sentences, usually using an 'I want' picture followed by a picture of the desired item  (now he wants Nutella. The badgers feel rejected).
Phase 5; The child learns to answer simple questions  ( the badgers, in an exciting plot twist, resolve their abandonment issues and use their new-found dancing skills to court fame in the next production of Riverdance).

PECS was developed in the 1980s when Lori Frost and Andy Bondy wanted to upgrade autistic kids from using a  teacher/carer led communication style to a child-led approach.  They capitalised on the strong visual learning styles typical of autism, and advocated the use of reinforcers to cement the behaviour.
These reinforcers are gradually pared back, and at a later point the child is introduced to the difficult concepts of "no" and "not yet".
PECS is revolutionary in that it aims to teach the autistic child to initiate communication.  This is a game changer because it shifts the focus from 'training' our kids to meet social demands and become compliant and 'well-behaved'.  It helps to change the view of our kids as feral creatures that need to be tamed, and nudges society to realise that they are individuals in their own right, with their own needs and opinions; PECS, for the first time, gives many of our kids a voice to express this.

My son had no speech until the age of 4, and until then we were using PECS to help him tell us what he needed.  Some people worry that using pictures will somehow make our kids lazy about using speech, but in our experience the opposite is true.  It opened our boy's eyes to the advantages of using words, and we were able to stop using PECS about a year after this. Research shows mixed results when analysing the effectiveness of PECS; some papers show modest effectiveness that is not maintained after the intervention is stopped, while others show that kids tend to use more spoken words after treatment.  My experience is that it's positive, it works and it empowers your child (hopefully with the added bonus of reducing melt-downs and dangerous behaviours as they are less frustrated).

PECS is great in that it's  cheap (there's loads of free resources online), easy to use and adaptable;  new pictures can be added constantly, and written words can be used for the readers.  It's also not exclusive to autistic kids and is effectively used for people with a broad variety of problems, such as deafness, physical impairments and other cognitive disabilities.
However, it's  cumbersome (as the child needs to carry an ever-expanding ring binder with him/her)  and lacks a cool factor that older kids might seek.
PECS has probably been largely eclipsed by apps on smart phones, but it's still valuable for younger kids, and worth it's weight in gold for teaching the to-and-fro of conversation.

It'd be worth looking around for training days to learn how to do it properly (lots of schools run these locally) but I think I've found the perfect request strip for those days when I'm just too tired to speak.

Sunday, 4 February 2018

Autism, Hair & Greek Mythology

In a fit of shameless laziness, I'm adding one of my favourite posts from a previous blog I used to write.  Enjoy.

Wednesday, February 4, 2015

Autism, Hair and Greek Mythology

When I went to get my hair done in my in my lovely salon (Bella in Carrickmacross, for any locals...check it's excellent), I knew Oana would coax out the badger that had taken up residence in my roots and send me home with a spring in my step.
What I didn't expect was to be offered an alternative way of viewing Autism along with my head massage.
Sometimes you just get things that aren't on the menu.

Oana was a teacher in her native Romania and she told me a story about Procrustes, a Greek mythological figure with bit of a chip on his shoulder.
Procrustes lived on a crossroads, crouching by his big old iron bed.
When a traveller wanted to pass through the crossroad, they first had to lie down in the bed.
Surely a weary traveller would love a nice lie-down before he continued on his journey?
But Procrustes was a disagreeable sort of chap and insisted that the traveller had to fit the bed perfectly.
Too short?  No problem!  Procrustes always kept a rack handy to stretch the shorties into a neat compliance.
Too tall?  Old Procrustes dealt with this efficiently by hacking off whatever few inches of hapless traveller were messing with his Feng Shui.

Even the Greeks knew that if we force someone to conform to our standards, that the result is not a happy one.
Forcing a square peg into a round hole mutilates the peg until it is a disabled, disfigured mess, unfit for purpose.

I purposely use the word "disabled".
Oana asked me "Tell me, does your son feel disabled?"
I had to answer "No, not at all.  He's one of the happiest (if maddest) kids I've ever encountered".
"Then, if your son does not feel disabled, it is those who label him, those who force this standard on him, who have the disability.  They cannot see him for who he is."

Luckily I was sitting down, or I would have fallen down.
You know all those clich├ęs about clouds parting, fogs lifting and scales falling from eyes?  Well, they all happened together.
It took me several minutes, and some extra hairspray, to recover.

All in a day's work for my lovely hairdresser.

I'm very lucky that Finian's school are entirely child-centred and that they build his curriculum around him.
I know they love and celebrate his strengths while breaking down the tough stuff into bite-sized chunks.
It fills me with terrified relief at how easily he could be in a home or a school that are squeezing and manipulating the life and soul out of him to fit their standards.

I feel like Finian is living a charmed life, and he is very kindly taking me along for the ride.
I was a reluctant companion in the beginning, but I'm getting to enjoy the journey more and more