A Tale of Two Ways - Part Two

A Tale Of Two Ways-Part Two

Posted by: Emma Dalmayne

Picture it:

A parent turns up to playgroup and the child she’s bringing won’t enter the building.

They flatly refuse to enter, they cry and beg not to go in but are told firmly and repeatedly that they have to go in, if they don’t they are going home and will be ‘in trouble with nanny later’.

The parent is harassed, they need to go shopping and have only two hours to do it in after they drop the child off, the crying is annoying, they’ve already been through hell trying to get the kid dressed and now they can’t even leave?!

‘Autism at its best!’ They think resentfully as they try to back away one more time while the child clings desperately to the door frame screaming “No,no, no!!’ .

After much bribery the child calms, twenty solid minutes of distress.

The parent leaves feeling content that the child has been dropped off, and moans to their friend over a hurried cup of coffee that it’s getting harder and harder for this kid to go anywhere, do anything! All they do is scream, spit and cover their ears.

The friend suggests yeast overgrowth and essential oils as she’s heard ‘somewhere’ they ‘help’.

The parent laughs uproariously having heard all this before having researched and seen debunking information, not wanting to appear rude they smile and say “No he’s just going through a difficult faze, it will be fine, eventually”’. They laugh and the parent shakes their head sadly.

Grabbing a pack of cards they know the child collects from a sweet shop nearby they hurry to get the child and get there just in time.

The child comes out, immediately hitting them and screaming.

The parent hurriedly produces the cards as a peace offering, the child pauses and rips open the packet, rapidly flicking through them and suddenly screaming in anger throwing them in the air and aiming a well placed punch into the parents leg.

The parent wants the ground to swallow them…. why did they bother?

‘Why did I bother? why did I?’ They think furiously.

“So strange,” says the play worker shaking their head and gazing at the parent in horror, “They are fine here.”

Familiar?

Let’s try it again, this time from the child’s perspective.

The child wakes up that morning with a growing sense of dread, they are forced into the playgroup uniform t-shirt which is bright yellow, they HATE yellow.

Breakfast is a hurried affair, the light from the window bounces off the shiny kettle on the side giving them sensory overload.

They are told it’s time for playgroup while arranging their cars in a neat long line, the cars are swiftly removed and put away, their creation broken.

They are put into a car that smells strongly of air freshener, the one the parent bought from the petrol station on their last visit.

The car starts up and they begin to feel sick.

When they reach the playgroup they don’t want to go in, they just don’t.

They are still tired, they hate their t-shirt, their eyes still hurt from the glare from the kettle, their lines been moved and the car stank, no they have to go into a noisy crowded room with twenty other children who will mess up their lines when they try to make them and will insist on playing with them in the toy kitchen!

They say ”No, I don’t want to go in, please don’t make me!”

Their parent says “You are going in, now come on hurry up I’ll be back soon, come on stop being silly you’ll be fine once your in.”

No matter how much they protest they are not allowed to refuse, they beg and cry, holding their ears as the sound grows louder, their own sound that they can’t stop.

Three play workers come, looking into their eyes saying “Come on, look at me its ok, come on let’s get up now time to go in!”.

The child spits at them, their eye contact hurts and they aren’t listening, no one is listening!

Their parent leaves promising to bring them something, they go slowly into playgroup, mentally shutting down as a child grabs their hand and pulls them over to the kitchen.

“Let’s play pizza kitchen!” They seemingly bellow, the child quells a little inside, accepting that this will be going on for a while, a shut down begins and they move on auto pilot.

The play workers look on in satisfaction, “See, he’s fine here, must be something at home,” they mutter and nod to each other.

The parent turns up and the child, now overcome with masking the overload from the sound, light and constant interaction attacks in indignation, ‘You didn’t listen! You keep, leaving me!’

They stop suddenly, the cards they collect…’If I can get the one I have been waiting for everything will be ok…it’s in there I just know it!’ They think desperately ripping their packs and rapidly flicking through it, their page in their card book will be complete everything will be fine…..it’s not there!

Devastation ensues and the world is ending, control has been taken away from them all day and this is was one thing, just the last thing that could have been theirs and it’s not there…..

What could have been done differently?

Give the child an extra ten minutes once they are awake with a sand timer to show when they need to get up.

Allow the line to stay, they are attempting to control and make themselves feel safe, along a window ledge or somewhere out of the way is a good place to allow lining up.

Sit where the child sits in the morning, squat down to their angle and try to see what could make them squint the way they do. Is the light hitting anything? Could anything be moved?

The uniform t-shirt had a choice of colours but the parent chose yellow, they didn’t think to let the child choose.

If this is not an option at your playgroup or school it’s a good idea to speak to the SENCO about the possibility of a little flexibility.

Avoid strong smelling air fresheners as the smell and motion of the vehicle can trigger a nauseous reaction in some with sensory sensitivities.

Listen to your child, if they do not wish to enter somewhere there’s a reason.

Ear defenders will help lessen auditory onslaught.

A transition space before they enter the play room would be helpful, a trip to a sensory room or library corner where it’s quiet to prepare them for the prolonged social interaction they have to endure with a play worker assigned that can take them for regular quiet times and sensory breaks with sensory play implemented to calm and regulate through tactile and visual stimuli are essential.

These things will all help calm and give your child some control, a warning of not crowding your child and all forced eye contact suggestions removed will also help.

Complain to the head about play workers remarks, they are unhelpful.

The cards? Hope for the best and buy two packs.

 

Link to part one here:

A Tale Of Two Ways-Part Two

Tourettes: An Interview with Advocate Paul Stevenson

Tourettes: An Interview With Advocate Paul Stevenson.

Posted by: Emma Dalmayne

It’s Tourettes Awareness month and I must confess to not knowing as much as I would like to know about the neurological difference that can provide great challenges to those affected by it.

We have all seen the stereotypical verbal tics some people with Tourettes can display, we may even have laughed along with them in tv shows as they blurted swear words and random phrases.

Sadly, due to ignorance of the public perception of Tourettes , the physical tics are often overlooked.

They can range from slight barely noticeable movements to the more extreme and frighteningly intensely painful.

After seeing Paul Stevenson on the BBC show Employable Me I had to interview him, his struggles with Tourettes touched me.

Socially it can be very hard as Paul showed us in the programme and gaining employment for someone who can be verbally unpredictable and in some cases socially inappropriate through no fault of their own can prove virtually impossible.

More awareness needs to be raised with more education given to the general public.

Acceptance is paramount so that this complex condition can be learned about and above all welcomed with inclusion given to all.

People should not be thrown out of bars, clubs and cinemas because there’s little to no understanding of why they and how they react to certain situations.

It’s the most blatant discrimination akin to an Autistic being asked to leave an establishment due to having an overload brought on by sensory processing difficulties or a meltdown due to uncontrollable frustration and anxiety.

Like Autism, Tourettes can make social interaction and communication a challenge and anxiety from this can then trigger the severity of the tics to an uncomfortable and in some cases painful level.

Paul was a pleasure to speak to and the following interview will, I hope, educate and enlighten you as much as it did me.

Following are the questions I asked Paul with Paul’s answers:

Me: When did Tourettes first begin to affect you?

Paul: It wasn’t until 6yrs ago aged 46 yrs old that i realized i had TS it kind of exploded out of me after a series of tragic events ( PTSD ).

Me: What are the symptoms of Tourettes?

Paul: The key features of Tourette Syndrome (TS) are tics; both repeated movements and sounds that are chronic (long-term) and involuntary. Someone with TS may be able to suppress their tics for a period but eventually they have to let them out.

Me: What do you find most challenging about having Tourettes?

Paul: I have full blown Tourettes plus , while my tic’s are a proper pain literally and keep me house bound a lot of the time ,its the co-morbities OCD, ADHD, depression, anxiety, and sensory processing disorder , which really get to me while i can battle through the tic’s and get respite in quiet periods the comorbs are always there.

Me: Tell me all about Employable me , how did you come to be on it?

Paul: Employable Me , I was contacted in 2015 around November to make a pilot program for the BBC , I wasn’t meant to be in the final production because of my age ,it was directed to folk in their twenties who had problems getting work due to neuro-diverse conditions , it was a huge gamble putting my life on display , especially with the governments stance being down on the sick and disabled more or less demonizing us calling us scroungers

But i felt it had to be done to show folk we are part of society and we contribute to society , to help change perceptions .

Me: Was it a positive experience?

Paul: Positive experience ?It was one of the hardest things I’ve ever done and nearly finished me off close to a breakdown took me out of my comfort zone and away from my very strong support network , over 90 hrs filming for 30 mins TV I have to say hats off to the production team they bent over back wards to cater for my health needs, but it was still hard work … was it worth it i would say hell yes , for the positive reaction and how the public received the program and fingers crossed the series went some way to help change peoples perceptions.

Me: Your appearance has definitely raised a lot of awareness but what else can we do to encourage acceptance?

Paul: The only way forward is to as a collective all neuro-conditions is to stick together strength and support in numbers and to keep getting out there and and fighting for our right in society and proper education for our children acceptance from our peer’s , the world doesn’t owe us anything we need to push for understanding, empathy not sympathy !

Me: What do you find helpful and what do you find triggers you?

Paul:. I find peoples attitudes helpful , folk coming up talking to me rather than following me or laughing or even filming me , I try not to get angry at blatant ignorance , and if possible try and inform and educate . Things that trigger are being in a public setting , stress makes my tic’s worse , sensory issues trigger tic attacks meltdowns .

Me: What does your Tourettes mean to you and what advice would you give to a newly diagnosed parent to help their child understand themselves?

Paul: I have Tourette syndrome but it doesn’t have me.

Having it all my life even though it was mild, TS as become entwined in my personality but it doesn’t define me . My advice is try to live along with TS embrace it don’t fight it, if you start to fight against it and hate it you will have a life long battle.

Living with full blown TS is difficult so my recommendation is to get a good strong network support around you starting with yourself.

You need to believe in you, accept your condition, and then expand this to family and friends and then support groups. It’s the only way forward, don’t go locking yourself away at home be loud and proud and let your light shine.

Me: There are many so called treatments pushed at parents including CD/MMS to ‘cure’ Autism, Tourettes, ODD and other neurological differences, what would you say to a parent tempted to try these?

Paul: There is no cure no specific medication designed for TS, lots of meds and anti-psychotic meds which will subdue your tic’s but have many side effects which are unpleasant and create other issues. If you or your children wish to go down this path this is a personal decision and needs lots of research, I am not a doctor or medically trained so i cannot recommend anything other than life skills and techniques i have found beneficial.

And this is to love life, be creative, help and support others and tap into that inner strength that you have , be proud because not everyone can walk 5 meters in your shoes let alone a mile.

Paul’s wonderful photography was featured in the programme, below there’s a website and Facebook page people that you can purchase his work from, there’s also a YouTube link to scenes from Employable Me and viewers should be advised that it contains strong language.

It was a pleasure to speak to Paul, the many similarities between Autism and Tourettes are fascinating.

Like the Autistic community the Tourettes community deserve recognition and respect that can only come from an altered public perception and admittance that without us the world would be a grey and cold place indeed.

https://youtu.be/a8rt2pOblcs

http://www.tourettes-action.org.uk/67-what-is-ts.html?7

https://www.kingandmcgaw.com/prints/paul-stevenson

Meltdowns and Privacy

Meltdowns And Privacy

Posted by: Emma Dalmayne

 

 

As an autistic and mother of autistic children I once allowed my now ex partner to discreetly film my sons meltdown.

In the three minute video I was hit thirty three times, my sons distress was complete and it was heartbreaking to see.

The short was shown to the paed (with no volume and without my sons knowledge) to show the level of his distress in meltdown mode to get him more support.

My son one day stumbled on the video while playing an app on my iPad and watched it, his reaction was devastating.

He was sorrowful and scared by it, he also had no memory of it.

I can empathize with that as when I have had a meltdown I will often shut it out of my mind as its so distressing.

I held him and told him it didn’t matter that it hadn’t been his fault and that I had only shown it to his paed to get him some more help.

But could I have told him that and felt right with myself if I had posted it online…let’s say on Facebook for others to see?

Of course I couldn’t, it would be an intrusion of his privacy and to me a grossly unfair and totally inappropriate thing to do.

It would have been disrespectful and hurtful, whether he was aware or not, I would know.

So why is it that so many parents and carers watch and sometimes provoke their children into meltdown then film it to put on social media?

Why, when your child is at their most vulnerable, mentally pained with flight or flight adrenaline rushing through them, stomachs churning and ears roaring would a parent think it’s a great time to pick up their phone select camera then video then select to film it instead of helping their child?

Not all children will allow touch when in a meltdown mode, to some it can feel repulsive or shocking but to some they may need a firm hug.

They may seek reassurance, they may need to be watched very closely in case they self injure or injure someone else, and there’s always a risk of them running into a road….

But you reach for your phone?

And post in Facebook groups with hundreds, sometimes thousands of people….

And caption it with ‘Rough day here today!’ Or ‘Guess who didn’t get their way?’ Or even as I once saw ‘I’m now taking all his furniture apart from his mattress, he will learn!’ .

Why not comfort or aid your child?

The excuses when challenged range from…’People need to see what I go through’, ‘People need to see Autism at its worst’ and ‘I needed opinions’.

Most memorable to me is ‘It’s a warning to others of what to expect if you have autism in your house!’.

The only time you could possibly have a reason to film a meltdown is to show it to an educational professional, social worker, medical professional, therapist or paediatrician there is no other excusable reason to do it.

I want you to imagine for a moment that you are low, your so low your crying, to you the world is ending and a rage and devastation so complete in its entirety is engulfing you.

Your screaming such is your despair, and you are panicking, you desperately look around in your fog of hell and see the person you love and trust to protect you holding up a camera…..

How would it feel?

Please find it in you to respect your little person.

Children have a right to privacy and to not be degraded and filmed for pity party postings to benefit the parent.

They also have a right to not have pictures taken of them naked or partially clothed in a nappy or pants and have that posted for the world to see to, be aware you are not your child’s owner.

You are their carer and advocate so act as such.

I have written many articles and, with my children’s permission have used their pictures in a respectful and educational way.

Never ever would I disrespect my children by exposing their distress or more extreme sensory habits, it’s not what a parent or any decent person does.

Every picture I post of my children publicly I ask them first, I select carefully and I bear in mind that once it’s out on the internet it can be shared, saved, memed and printed by anyone.

Please be mindful and please be respectful.

https://youtu.be/yhPAOqByWpY%20

Deaf Curtis Jackson aka 50 cent

Dear Curtis Jackson aka 50 Cent,

Posted by: Emma Dalmayne

My name’s Emma Dalmayne, I’m an autistic rights advocate from the UK.

I became a fan of yours through hearing ‘Patiently Waiting’ your first taster release, I already adored the lyrical genius of Eminem so it wasn’t hard to take to you.

I admired the fact that you overcame adversity and fought back against being shot nine times to make a name for yourself.

I’m sure by now you have been called every name under the sun for your actions against airport worker Andrew Farrell, and I’m sure your company were rightfully horrified by the negative publicity that came from what you have done.

As Andrew was walking along minding his own business, doing his job and trying, I’m sure to avoid interacting in an already sensory stressful environment …. paying no attention to you… you decided to target him.

You filmed him as he made his way saying he looked ‘high’ and that the ‘new generation is crazy’… Why is that?

Is it because he didn’t become immediately star struck at seeing you?

I’ve tried very hard to understand why, why you thought it was a good idea to do what you did.

I don’t understand at all.

You see Andrew was simply doing what many of us do, he was minding his own business.

Unlike you.

How you must reacted to hearing he’s autistic I don’t know, you must have known you had made a massive mistake and thought money would make up for the damage and degradation you had caused.

“Find the biggest Autism charity and donate some money QUICK!!!” You were, I guess, advised.

So you picked Autism $peaks, an organization that focuses purely on eradicating autism through eugenics, spends barely anything on supporting families living with an autistic to support them AND raising enough money already that they spend on research to find a cure for something that is not an illness or a disease and depicts the autism community as MSSNG, not even worthy of our own ‘I’.

Did you know that the organization you chose supports the Judge Rottenberg Centre?

It’s a centre that uses electric shocks to control autistic people, they are shocked for things considered to be disobedience, such as not wanting to remove their coats or flapping their hands to control and regulate their environment in a self stimulating movement.

That won’t bother you though will it?

Your hands are clean now aren’t they? Your conscience clear?

Yes you apologized to Andrew Farrell, but I can tell you that every autistic I have spoken to feels shit on by your actions.

You didn’t even research the best place to give your money to.

You can now march off to the ‘Candy Shop’ and party like ‘It’s Your Birthday’ while we, the autistic community try desperately to educate the world we are not an epidemic or disease which is what Autism $peaks say we are.

Thanks for that,

From a pissed off autistic.

 

http://www.bbc.co.uk/newsbeat/article/36202408/family-of-autistic-man-mocked-by-50-cent-accepts-apology