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!