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.