Kicking Myself: The Perpetuation of Stigma Through Inaction

Two of my favourite bloggers on the subject of Autism have given me pause for thought this week. Yesterday was Mental Health Day. 1 in 6 adults will have a coming mental health problem, and yet there’s still such a stigma attached.

How can that possibly be OK?

It’s not.

Anonymously Autistic raised the point that it takes more than awareness of mental health issues to make life easier; we need acceptance of them. 

  
She’s not wrong. We might all be aware of somebody who suffers with mental health difficulties, might know the name of their condition, but do we know how to make them feel comfortable being themselves? Or do we expect them to hide their struggles, to fit in with the norm? Being aware just gives us labels…but it doesn’t make it easier for the people living with those labels. 

Moreover, as kids, we quickly learn that it’s an insult to call someone a spaz, a retard, a psycho. We know what those words really mean, but their currency is in the power of the insult. We have an awareness of difference – the weird kid in class, the tramp in town – but we don’t know what it’s like to be them. And those insults – that acceptance that it’s OK to mock mental health – stays with us.

For example, Tim from The Pathless Woods backs this up to a report of an open letter from a sister calling out the vile stranger who though it OK to mock her autistic brother in a supermarket.

Again, how can that possibly be OK?

Again, it’s not.

But as a society we have an awareness that mental ill-health exists, but we have an acceptance that it’s OK to mock people who suffer. 

It’s not.

  
But it’s so insidious. Who hasn’t called someone “crazy” or “insane” even with affection? Who didn’t avoid the odd kid at school for fear of being ostracised by association? Even without insulting a stranger in a supermarket, whose allowed the stigma of mental health to be perpetualted having stood by whilst derogatory comments were bandied about? 

I have to hold my hand up. I’m guilty of allowing mental health to be stigmatised.

I kick myself for not having the balls to call people out.

I kick myself for not befriending the girl with Downs Syndrome who was assigned to our class dressing room for a dancing show. I kick my 8-year-old self for not telling the popular girls off for teasing her when she didn’t understand what their words implied. I kick myself for being mean by association.

I kick myself for recoiling along with the other kids at primary school as Alan stormed along the corridors, full of rage. I kick myself for being needlessly dramatic in the face of a kid who just needed help.

I kick myself for not standing up to the customers of a coffee shop for their snide comments of a busking tramp. It would have been embarrassing to stand up so publically, but would have been more embarrassing for them to have their shameful behaviour laid out in front of them.

  
I kick myself for allowing “Autism” to be a punchline for an experience of rudeness on Facebook. Getting prissy with “I really don’t think that’s acceptable” isn’t going to help, but neither does letting it slide.

I kick myself for the post a friend put on Facebook of her experiences at comic con, of how her son’s laughed as they came up with increasingly ridiculous questions for a very enthusiastic exhibitor. Someone who was possibly Autistic and obsessed with their specialism. She made it OK for her kids to laugh at people with niche interests, people who find it difficult to socialise, people outside of the norm. And I kick myself for not calling her out. 

I kick myself for not telling the director and the sales manager at work to shut the fuck up and show more respect after they made retard noises about a client with learning difficulties.

I kick myself for not holding myself together or being able to give a clear explanation of Autism when the National Trust woman wanted me to discipline my son better in the middle of a meltdown.

  
And there must be more times. Occasions that have seeped from my conscious memory. Which is possibly even worse as I don’t carry the shame that I should do. And if it’s not shameful to allow people to be miserable then it’s surely a further indication of how accepted it is to be derogatory about mental health issues. Of how the stigma is perpetuated.

Well, that’s NOT acceptable. 

Acceptance should be for people to feel free to be themselves, not a society-shaped version of it. (Society’s ideas of what’s OK is fucked, so why should we listen and conform?) 

Let’s not just be aware of the conditions encompassed by mental ill health; let’s be aware of the people living with those conditions. Let’s accept those people and their needs, not spurn them as ‘other’ and something to distance ourselves from. Let’s make it acceptable for someone to admit that they’re struggling. Let’s accept our own culpability for the current lack of acceptance.

I’m fed up of kicking myself. I’m fed up of the stigma that forces people to hide themselves and allows others to set a derogatory dialogue. I’m fed up of allowing a world to exist that makes life for one in six people to be made harder through lack of acceptance. I’m aware that I need to change.

PS Re: the tramp in town. A couple of kids had far greater balls than me and took time to get to know the man behind the local rumours. Watch their video here: The Enigma of Juggling Jim.

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A Cow Amongst Sheep

“So, SP, do you want to do some work now?”

“No.”

Thus went school yesterday.

But the teaching assistant did ask…and SP is never anything but honest.

He’s also not one to be swayed but what others are doing. It’s not just that he’s a black sheep amongst the class flock; he’s a  cow!

  
At the moment it’s cute and endearing, but I’m not really how long this will hold sway. An obstinate 4-year-old is one thing; but a defiant 15-year-old? Undoubtedly by some point he’ll be less likely to get his own way and get into trouble.

In which case I can’t help but feel that mainstream schooling isn’t in his best interests long-term. Can a system that likes things done in a particular way meet the needs of someone so intent to do it his own way? But the nearest ASD-specific schools are so far away. I’m not sure what’s more likely to change: SP or the local authority’s realisation that there’s a need for accessible support and tailored education. Both are the definition of stubborn.

But when SP wants to do it, it’s all there. He’s taken in everything taught whilst he’s shielded his ears on the carpet; he knows how to form letters, even if he refuses to pick up a goddamn pencil; in passing conversation he’ll thrown in some maths.

After piling up the daily homework sheets for 3 weeks, SP finally decided he wanted to tackle them all in one hit. Ok, he has no interest in picking up a pencil, but his letter formation (“round the face, down the hair and give her a curl” is how they learn to write ‘g’ these days apparently) and phonics sounds were spot on. He rattled through them. And again. And again and again and again. When he’d done he gathered the sheets and threw them in the air. “Surprise!”

You’re not kidding! Too right I’m surprised.

When I showed a video of this to his class teacher she laughed. He mimicked her perfectly. “He’s happy to sit during the sessions but he won’t speak. But he’s obviously taking it all in.”

I think they were also surprised that he actually joined in with everything in PE today, rather than sticking to whichever piece of apparatus he likes the most. So much so, he’s got Star of the Week. (Again! And he’s only been there for five weeks!

It’s been a good week for SP. I don’t expect him to comply with everything the same way an NT child would: he doesn’t have that need to please others (which is by turns infuriating and refreshing). But thankfully, right now, his school are thinking along the same lines. Which is just as well as SP getting along, albeit in his own way, makes for a far happier time for him and thus a far easier time for everyone else. And that’s what I hope for most: for him to be happy going about things in his own way.

If only society would see that the cows are just as good as the sheep. Things would be a lot happier and easier all round.

Nemesis

Soft play can be challenging at the best of times. Even with a neurotypical child, the experience of too-bright lighting, too-lax rule implementation and multiple other-people’s-children scenarios can be taxing. 

But SP loves them! Despite the sensory overstimulation of Top Tots Pop Party Hits (or whatever the name is given to the album of ultimate saccharine pop earworms) set on a perma-loop and at intolerance level 11, it provides him with the chance to unleash his urge to just crash into stuff. Whilst Amy will skulk around the lower levels scared of certain death, SP will pelt up ladders and down slides (and often down ladders and up slides) without a care in the world. And it makes my heart leap into my throat less than when he plays in the parkour area of our local park. At least soft play doesn’t involve concrete blocks and somersaulting teenagers.

  
It’s not the noise or the physical challenges that are the problem for SP – it’s the requirement to be nice to other children who want the same thing as you that’s the hard bit.

I thought I’d been shrewd though. Utilising the lack of afternoon schooling I figured a Thursday afternoon would be an ideal time to visit. All the kids are pre-school age before 3 o’clock, resulting in SP being able to lay sole claim to the Over 4’s area. It’s the bit with the best stuff too (the ball pit, the giant gym balls, the funny mirror, the football zone and the  giant tube slide) – it’s a definite win to have free reign over it all. 

And for a while it was.

But then he played with the bead maze table, making the wooden beads follow their path until each row was just as it should be. He then discovered some soft shapes and defied the rules of gravity by getting them to stand upright.

But then another child decided he wanted to move the beads on the bead maze. This was a red rag to SP who launched himself back over to the table. 

The other boy, who was bigger than SP and seemed to be non-verbal and excitedly flappy (and thus may have also been in an excluded-from-school-for-being-autistic situation) very definitely also wanted to put the beads in just the right spot…except his version of where the beads had to go was different from SP’s idea of their right place.

And welcome to Wotld War III: kindergarten edition!

  
SP tried to grab the other child to maul him away from the table. I made a human shield and the other boy giggled aware, unbothered by SP’s protests. SP launched his aural assault – high-pitched screaming. Tears, snot, flailing. 

  
Some children would be able to happily share the beads and divvy up the maze routes between them. But not SP and the boy-who -was-now-his-nemesis.

I knew that moving SP away from the table would only make things worse. And he was too focused on the table to be distracted by anything else. I could only restrain him until either he calmed down or until the boy left.

Eventually the boy moved off and SP was free to move the beads back!…But just as he did so, the boy was back again! I might be an overweight older mum, but I’m like a ninja when it comes to intersecting an SP strike!

And so it was: more tears, more snot, more flailing!

On the brink of man-handling a screaming, lashing SP from the premises (but contemplating the issues of mixing a meltdown with a main road and a wait for a bus) the other boy’s mum told him it was time to go home. 

Oh blessed relief! 

I released my hold on SP and – snap! – he was back to the table as though he hadn’t just resembled Linda Blair in The Exorcist, happily placing the beads back where he should be. And all was fine…for a few minutes. And then, wouldn’t you know it, like a movie cliche, where the hero thinks the battle is over and turns his back, there the Nemesis was again!!! 

  
I think that may have been the point my eardrums shattered.

When you can rationalise with one or both children that’s fine. When you can rationalise with neither that’s tough. As Nemesis’ mum was nowhere to be seen we buried him in the ball pit. I wish! I just went back to being hit in the face by an apoplectic SP. Who may have had a point, but he’d have buried his nemesis for real, so instead I took the blows.

I need to find a way to soothe the rage, because it’s not ok for it to be SP’s default mechanism when things go wrong. But I’m struggling to figure out how to do this. All advice seems to be to avoid situations that might lead to a meltdown. But any situation is open to unpredictability! We can’t just sit in the house. (And there are situations you can’t avoid – not going to school in your pyjamas, for example.) I need to work something out…and the quicker the better. It scares me that SP will grow up with such rage. It scares me that it will lead to school exclusions. It scares me that I’ll always have to step in as a human shield.

As ever SP came away unaffected by the dramatics. Something he does do well is moving on with bearing a grudge or stewing on an incident. I wish I could be the same. Instead I came away tarnished by the afternoon. 

If anybody has any good tips or experiences I’d love to hear them. I’m frazzled and feel as though I’m failing SP. 

The boy at the bead maze table might have been SP’s, but managing his rage is mine.

Power Nap

Dear Apple

I would like to offer you the opportunity of hiring out my son for the purpose of technological research. Given that your products fail to sustain a day of intensive autism-friendly usage, I think it would be in your best interests to research whatever power source allows my son to nap in the back of the car for 5 minutes (literally five minutes, with me urging him to stay awake, but his head lolling anyway) and wake as though he’s had a full night’s sleep. Imagine, a battery charge from 0% to 100% that doesn’t drain any quicker than a normal recharge!

I’m pretty sure, with enough research, you could harness that ability for the good of your products. Which would be a major result because have you experienced the autistic fallout of an expired battery life?!?! Let’s just say, it isn’t pretty!

All I request in return is the chance to recharge my own batteries. Something with marshmallow soft pillows, comforting tog rating and a king-size mattress all to myself. Eight hours undisturbed would be amazing!

It’s a win all round, I feel. I look forward to your reply.

Yours sincerely

GSM

Ripples

If family life is a pond, the idealised life (the sort touted on Instagram by the likes of the Jamie Oliver and Kirstie Allsopp) would be a glossy surface of perfect reflections.

  
Ours isn’t. Ours is a pool during a rainstorm, splashes made to disrupt that surface: all of the pressures that disrupt the smooth flow of life.

One of those splashes is SP. Which sounds harsh, when he’s a bright, charming little boy. But his rigidity and meltdowns are a phenomenal pain in the arse, not to mention the battles with authorities to get the services SP needs and is entitled to. It’s time-consuming, draining and requires a lot of physical and mental focus. 

The splash he makes in our family pond reverberates and affects all of us.

  
Not just myself and Husband (me in terms of daily care, meetings and conversations as his advocate, Husband emotionally as SP pushes him away) but the others too. My dad and older daughters who get roped into childcare when work gets in the way, little Teddy who bears the brunt of SP’s lack of desire to share and Amy who doesn’t always get the attention she deserves or needs.

This week I was asked to a meeting at the school. Despite a start to school that exceeded expectation, it’s been decided that SP should only attend morning sessions until half term. The school just doesn’t have the resources to ensure that SP gets the support he needs whilst also settling in the  other 30 children in the class. 

Splash!

I should have been more proactive when it came to ensuring resources were in place for him starting school. I should have started the EHCP process sooner (although their argument of suck-it-and-see may have still been the result). I followed the advice of the education staff around me. I should have fought harder. Or I should have chosen a school that could meet his needs as standard. But are his needs severe enough to need a place at a special school when they’re scarce enough for all disabilities? There are no ASD specific schools in the area and that in itself makes me angry, but anger just takes up more energy and achieves nothing.

And thus arrangements fail and I’ll be relying on other people to fill in where work and childcare clash. There’s the pressure to be available to everyone, the guilt of being unable to achieve the impossible. Guilt also at wanting SP to conform the same as those other neurotypical kids to make life easier, when without other splashes in the pond we’d be able to focus purely on his needs.

  
But worse. Amongst the ripples, the largest get focused on the most. It’s easy to ignore smaller splashes. And so it is with Amy. The meeting also included concern about her as her anxiety levels have increased to an extent that she will barely speak at school. There’s nothing wrong with being more introverted or sensitive and this has always been the case, but now it’s holding her back. Her anxiety is making her scared to try in case she’s wrong or she fails.

SPLASH!

But she’s not the failure – I am! I’ve failed her, by letting her go under the radar. When one child demands so much attention it’s so easy to forget that the ‘normal’ ones need support too. Whatever the underlying cause of her worries, we hoped they’d just go away. But life doesn’t work like that.

  
Outside today it’s raining. Drips and splashes making everything harder, making us weary. It reflects how I feel. I want to be positive, but at the moment it’s hard and I crave a calm pond. 

A Request

” I want to go to Thomas Land Japan.”

  
It’s Saturday lunchtime and Thomas Land Japan is 5,844 miles away. SP wants us to drive. I’m not sure we’ll make it by closing time.

  
“Oh come on – it’ll be fun.” (Followed by 8 hours of “oh, but pleeeeeease.“)

One day I might let him know there’s actually a Thomas Land in Staffordshire…but possibly not until we’re in the car with tickets booked.

Until then, is there a way I can block all access to Thomas Land-related YouTube clips? Are the parental controls that adaptable? Or does anyone know how to convince an autistic 4-year-old of the concepts of time/space/mummy not having a money tree in the garden?

In the meantime, I have warned Husband there’s every chance one day he’ll come back from a football trip to find a note on the telly: “Gone to Thomas Land Japan. Back (much) later.”

Fingers

SP has remarkably long fingers. The sort that inpire comments about concert pianists and ET.

They are even more remarkable as the most accurate barometer of his mood going. When SP is anxious they ball into fists. Even when his facial expression and other body language seem to be ok, those fists are an indication that the whole world could collapse at any moment. 

He was born with fists tight and it took an eternity for those long fingers to unfurl.


When he would feed, however, once they had uncurled, he would drum on my breast with them, a relaxed and content patter of tiny fingers. Now, when he’s excited his fingers will flicker and twitch, an outlet for his excessive energy. As he cuddles to sleep at night he strokes my fingernails, soothed by the smooth surface of my varnish.

  
This week has been SP’s first week in mainstream school. Last Sunday I couldn’t sleep out of anxiety: would he wear his uniform; would the classroom be too much; would he follow instruction; would he cope at lunchtime; would we be able to get him into his PE kit when he hates shorts and different shoes; would he lash out at the other children and staff; what would the repercussions be if he did? 

He objected to his new jumper and I stuck his clip-on tie on him without him realising. I hugged him tight and carried him into the classroom, aware that his fists were in tight balls. 

  
They relaxed as we settled him into an activity and started to fidget. I allowed myself to relax as I headed out the door. If his fingers were ok, he was ok. Shakira’s hips don’t lie and neither do SP’s digits!

It was a long day though and although he came out full of smiles, the ordeal was evident: his hands were in fists as we headed to the park for a promised play. We didn’t stay long; the day had taken it out of him.

  
The next day was a challenge. He resisted the jumper and tie of his uniform, he refused to put his shoes on. Again his hands were in balls and despite it being a lovely day of long overdue me-time, I couldn’t shake an uneasy feeling. When I picked him up this time I was told that it had been a bad day.

He did kick off about his PE kit, but thankfully the school were relaxed enough to let him wear jogging bottoms and his usual shoes. And the rest of the week has been a revelation. He’s a lone figure amongst the crowd of new children, preferring to take held straight into his chosen spot on the carpet rather than play before class. But he listens and does as he’s instructed. He helps tidy and is generally sweet. He’s coping, even though “there are lots of children on the carpet, Mummy.” He’s been chosen as the first Star of the Week. (Although I’m not sure how he’s going to cope in an assembly of 270 children plus staff. We’ll cross that bridge on Monday.)

As we left the playground yesterday, SP ran up and down the number grid counting the numbers, 1 to 100. His fingers flicked as he counted, matching the big smile on his face. 

I know we’re going to face plenty of challenges with school, particularly with the council so stubborn to meet the additional needs of those with cognitive/social disabilities. There will be days that will go brilliantly and there will be days where it’s going to take a tsunami of an effort just to get SP through the gates. 

But watching his fingers twitch and flicker makes my heart swell. He did it:he survived his first week at school and I couldn’t be more proud of him. Thumbs up!

Holding Back the Tide

The 12th century and King Canute heads down to the shore with his courtiers. His throne having been brought to the shoreline, he demands that the tide holds back and doesn’t wet his feet. The water of course comes in and soaks them all.

  
Historians claim that if this happened, it was for Canute to prove that even the power of kings is worthless against the elements. 

But maybe the historians are wrong. Maybe Canute thought the tide could be stopped from coming in at his will. Because maybe Canute was autistic.

Because nobody seems to be so adamant to demand the impossible as SP. Time and tide wait for no man, although SP would argue that both are static to whatever he perceives them to be.

“Turn time backwards!” is a common demand in our household. If only! I’d turn it back to the few hours when SP slept undisturbed and catch up on some sleep!!!

And considering the propensity of people on the autism spectrum working in Silicon Valley, you’d have thought Apple would have had the consideration to make products with battery lives that out-sustain an ASD obsession! I will congratulate Apple, however, on the durability of their products when literally flying across the room in frustration at the appearance of the power off buffer.

But that’s not all. I’m not sure how SP expects tech products to re-charge without connection to a power source either. Power packs and cables are NOT acceptable to SP’s mind…but he still expects them to be back to working order without intervention.

Then there’s the battle of will vs lack of Wi-fi. He has absolutely no comprehension of why he can’t watch his favourite YouTube videos anywhere and everywhere. Or why it cuts out at home. To be fair, I don’t understand that either and find it equally frustrating, but I fall short of flinging myself to the floor in a rage. 

But then, when YouTube does work there’s the challenge of making him comprehend why an app advertised in 2011 is no longer available. Or why a book can’t just appear in our house because he’s seen it online. Or why we can’t go to Thomas Land on a whim at bedtime on a Sunday, least of all because the Thomas Land he’s seen is in New Hampshire! 

Not that is ever Sumday at bedtime. In SP’s mind – even though he knows the days of the week, months of the year and can read a digital clock – it is always half past one on a Monday. And it is always January. Okaaaay.

Harder to live with than a perpetual Monday-in-January calendar was the 30-mile whine because I’d turned around in the road to avoid traffic, thus not taking our usual route out of town. SP was lucky I didn’t leave him on the side of the roadside as he upped his game in terms of decibels the longer I refused to turn back on myself.

We’ve even had an actual Canute moment at the beach when SP wasn’t content to paddle in the shallows, but pointed out to the horizon. “That way! That way!” he yelled as I hauled him back to the shore, both of our rolled-up trousers soaked through. Drowning is not an option when there’s the edge of the world to be touched! I am the most unreaso able parent ever!

All of this is part and parcel of the lack of theory of mind that makes the world such a difficult place for SP to comprehend. Technology should always work because he sees no reason why it shouldn’t. If something exists online then surely it can exist in his world. And why would it ever need to be anything other than half-past one on a Monday in January?

I wonder if Canute threw himself into a screaming, wailing mess as the water soaked his robes and lapped around his throne? I wonder if he threw his crown into the waves in a pique of frustration because the water hadn’t done his bidding?

Our own Canute certainly doesn’t handle such frustrations at all well. Good luck to his teachers next week as he starts school and has to settle into a routine and set of demands not of his choosing! The tides of the education system are about to rise and I’m not sure SP’s going to like getting his feet wet.

Faceplant at the First Hurdle

It was a sunny afternoon and I was pushing SP on the swings in the park. My phone rang. “Hello, this is ****, EHCP Coordinator from the Council.” Ah, marvellous! I’d been trying to get hold of **** for more than a week after she’d left me a voicemail message after 4pm on a Friday requesting a callback, knowing that she’d be unavailable for the next 11 days. (Ah, but I forget that SEN parents aren’t meant to have lives and jobs and are meant to be available for the merest hint of communication from the other side at all times.) The six-week deadline for a response about a decision to assess for a plan had already been and gone by 3 weeks, so the extra 11-day wait wasn’t the best way to start. We’d stumbled out of the blocks.

  
As it happens, a delay was the best part of the process.

****: “So, as you remember from our previous conversations…err…no*….so you remember, you requested an assessment for SP.”

*We’d had no previous conversation. It seemed **** was the one who had needed memory prompts.

Me: “Yes.”

****: “We’ve decided not to assess him.”

Me: “Whaaat?!”

****: “We’ve decided that as SP is due to change school setting there’s insufficient evidence that he won’t be able to cope in mainstream school. The school will have to prove that they can’t meet his needs. It’s their duty to meet them. If they can’t then we’ll reconsider assessment.”

Even requesting an assessment is no easy task. The nursery SENCO and I completed pages and pages of detailed information about SP’s needs and areas of difficulty. We attached every report going, those from his autism assessment to more than a year’s worth of IEPs showing that he wasn’t meeting even individually-tailored targets. How is that insufficient evidence?

****: “But that was at the nursery. With a rigorous transition the school will be prepared for his needs.”

Me: “But it’s the start of the summer holidays. It’s too late for any more transition and the school have already said that they don’t feel they can meet his needs in the long term.”

****: “Well, they have to. They’re breaking the law otherwise.”

But the point of assessing SP for a Plan was so that the school would know how to meet his needs. The level of support to be provided would be in black-and-white. Everyone would know where they stood. And SP could hit the ground running at school. If you’re already in a disadvantaged position you don’t want to start on a back foot. That was the whole point of our timing! And now it was being held against us! 

The following paperwork that confirmed ****’s decision stated that SP has profound and long-term needs. Although off-the-scale academically, SP’s social skills and personal development are around the same level as an 18-month/2-year-old. Would you expect a toddler to suck up a full mainstream school day  every week day during term time without additional support??! 

I was getting nowhere with **** on the phone though and I felt unprepared. A Local Authority advisor had looked at the application before it was sent off. It was a shoe-in. Literally, the last words I’d had from the nursery SENCO was “Don’t worry – there’s no way SP won’t get a plan. Everything will be fine.”

  
Never mind not getting a Plan; we weren’t even getting an assessment for a Plan!

Me: “How long should I wait if I feel the school aren’t meeting SP’s needs and I want to apply again?”

****: “We’d recommend two IEP cycles, so that the school has a chance to rectify things if they aren’t right from the off.”

So that’s 1) a wait for an initial IEP to be written (which, let’s face it, won’t be done straight away). Then 2) we wait for a bumpy transition and a look at how things can be improved. And then 3) when SP has decided school is awful because everyone’s making it up as they go along and everything keeps changing and there’s no regular, reliable support, when the teacher’s at breaking point and the other kids in the class are being affected by SP’s behaviour, then – then! – we can start the process again?!?!?!!!! Even if he then gets accepted as needing a Plan without going to Tribunal or haggling over the details of the draft (all of which, let’s face it, are going to happen if the tales I’ve heard of a responsibility-shirking Local Authority are to be believed) then that’s the first year of SP’s life at school written off. 

The 2014 Children & Families Act states that all children have the right to be enabled to reach the same educational milestones as their peers. How is delaying support for children whose attainment is already delayed helping achieve that?!

I feel deflated yet livid. How can people who’ve a) not met my child and b) not seen the environment he’ll be going into decide that he’s not entitled to his legal rights because they need to see that a suck-it-and-see approach needs to fail first? We can appeal and we will. Jeffrey Julmis is my inspiration. We’ve face planted at the first hurdle, but we’re going to get up and finish this goddam race, even though it’d be easier just limp off the track, defeated.

  
But at least Julmis wasn’t told he had a set time to complete the course…and then found that someone had built a brick wall in front of the finishing line. Mind you, like Julmis, a wrong move could disqualify us.

  
We have two months in which to appeal. Two months that includes most of the six weeks summer holidays. A summer holidays when we can’t see SP in his school setting to complete assessments, when we can’t get hold of professionals who can help and can’t even get a reply from the school acknowledging that they’ll put in a referral that I’ll need to strengthen our case. (The Council didn’t even think the school might want to know that SP’s assessment request has been turned down and only thought to cc the nursey into their decision letter.) I’m sure helping find evidence to boost an appeal will be the last thing SP’s new teacher will need as soon as the term starts too, what with having settle 30 newbie 4-year-olds into their first days at school and all!!!

I’m going to keep hurdling, however. Even with a Local Authority that want to keep all of the gold medals. Watch out, County Council – I’m coming after you!!!

  

With or Without You

I’m sat writing this on the platform of Downham Market station. SP and I are stuck here for the next hour. Downham Market station isn’t the sort of place you want to be stuck at for an hour, but neither is a train carriage full of people when SP is in the middle of a tantrum. So, to save the eardrums of our fellow passengers and to teach SP that there are repercussions for behaving like a brat, here we are.

  
And he was being a brat. There’s a difference between meltdown and tantrum, although both are an outcome of his autism and are both are ear-splittingly loud and unpleasant to be around. Today’s outburst was the result of a trip on the train. We’d done and we’re heading for home, but SP decided he wanted to go the other direction to London (just as he’d done with his grandad the time before). Teatime is no time to be heading away from home on an hour-long journey with another hour and 40 minutes back. I put my foot down and said no. He conceded, got on the train…and erupted as it headed in the direction of home.

And thus we are sat on a desolate station, strong breeze whipping off the Fens, waiting for the hourly service to finish the last 14 miles of our journey home. An hourly service that’s just announced a 20- minute delay! We could have been home by now.

Luckily I have cookie dough bites (thanks M&S – your service to autism knows no bounds!) and SP has a bag of snacks to bide the time. It’s sunny. To be fair, I’ve sat here in a lot worse circumstances (thanks to a rail obsession in the midst of winter).

But it’s proof of the difficulties dealing with the summer holidays. I want the holidays to be nice, full of fresh air and experiences. Thus far SP has enjoyed the grounds of a stately home, the thrills of a theme park, splashing in the sea and flying through the air at a trampoline park.

  
And SP has truly enjoyed himself doing those things. Away from his iPad he’s been chatty and smiley and happy. He’s run, walked, jumped and played.

But no day has been without incident. At the theme park he screamed as we had to leave as it was closing. At the seaside he didn’t want to leave the arcades, even though we’d stood and watched the PacMan demo for two hours and spent a tenner repeatedly playing air hockey. Also he wanted to paddle out to the horizon.he didn’t like being told the sea was too deep. At the stately home he’d taken instant umbrage at the hall itself (something disagreed with his sensory processing) and we ended up in a pool of tears and screaming outside as a stern middle-class woman jabbed at SP, shrilly absconding “Discipline him! Discipline him!” 

  
At the trampoline park the tantrum was Amy’s – the safety video had put her off and she refused to join in. SP meanwhile bounced without care. Go figure!

Husband thinks that I’m being a perfectionist. “You have this idea of a perfect day out,” he said of the stately home trip, as though my expectations were written by Enid Blyton. “You should do things that you know he likes.” But how do you know what SP likes if we don’t try different things? We’d be sat on rural train station platforms all of the time! Hardly fair on Amy whose holidays are already dictated by SP to an extent that is greater than it should be. Fixing on what SP knows he likes would reduce our world further and further. Besides, how do you a judge the success of an outing: by the 90% enjoyment of the 10% abject hell of a meltdown? Although in the midst of the meltdown, it’s hard to be glad you stepped across the threshold of home and you vow never to go out again.

Furthermore, Husband is in no position to judge as he doesn’t join us for our trips and his days spent in charge when I’m at work result in iPad-dependent pyjama days…and then he moans that the kids are too fixated to their technology. It’s undoubtedly easier to stay within the confines of home, but it surely isn’t better?

Sometimes though, it’s not. Sometimes it’s wisest to tag team SP, with either myself or Husband staying at home with him and the other going out with Amy alone. It feels wrong, but also for the best. With SP a day at the Science Museum was a day chasing him around the exhibits, unable to pause to enjoy anything. Without him, Amy and I got to enjoy the V&A and more during a day in London. Sometimes for sanity’s sake it has to be done.

But I’ll keep trying. I’ll keep trying to figure out where might work for us. I’ll always ensure we’ve got supplies to sustain everyone when our plans go wrong. I’ll try to develop a thick skin for those meltdowns, because I’m never going to premeditate them all. Not until I can change the clocks or make the tide shallow enough to paddle out to the horizon.

And I’m going to keep trying to focus on the 90% rather than the meltdown 10%, because then I’ll have the energy to keep going and not let our world grown claustrophobically small. 

Even if it means spending an hour and twenty minutes at Downham Market station.