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.

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!!!

  

The Trouble With Transitions

SP has only 8 more sessions at nursery before he leaves. He’s seemingly unaware that this is the case. Meanwhile I’m the one whose really not coping. Every time I remember this means we’re losing our precious Mrs H my heart breaks. It takes a lot to be considered part of SP’s gang and she’s right at the middle of it. She lifts him up and calms him down. Through trial and error she’s worked out how to persuade him to join in, even if the tactic only works for that session. She accepts him, edges and all, and sees no need to shave his corners. And in 8 sessions’ time she won’t be part of his gang any more.

Instead we’ll be taking a step of uncertainty. His new school aren’t sure they’ll be able to meet his needs long term; the council aren’t sure if they want to help (or at least our application for an ECH plan is sitting in a pile on somebody’s desk); I’m not sure I’ve made the right choice. Anxiety at the next step up is normal. But whereas with my other children the hope that it’ll all work out in the end seemed to be good enough, with SP the fear is that making the wrong choice will impact negatively for a long, long time. It’s a horrible responsibilty, especially as there’s no one to say ‘this is the right way’ and even if they suggest a different way to normal, the places and the resources aren’t there.

SP himself sways between utter excitement at going to big school and utter determination that he’s not going. (Although he lives in the moment with no awareness of time, so as long as he’s excited when he’s at the school we don’t have to particularly worry about his lack of acceptance when he’s not there.) 

  
Both SP and his new teachers survived his first taster session at least.

So, despite SP having recognised issues with transitions, it would appear that he’s not the only one!

Maybe I need his coping strategies. 

In which case, can I please have a visual timetable for how the whole move to school is going to work out? One with velcroed pictures I can pull off the board when we’ve crossed a milestone. ‘Say goodbye to Mrs H and nursery’: tick. ‘Have 6 weeks of school denial during the summer holidays’: tick. ‘Agree to wear the school uniform, including the dreaded clip-on tie’: tick. ‘Day 1, make it from 8.30am to 3.05pm without the teacher reaching for a stash of gin’: tick. And so on and so forth until we reach ‘Pass A levels’: tick.

Can I have someone squish me with a giant cushion when I feels like it’s too much? Can they rock me and stroke my hair and reassure me that it will all be fine?

Can I wear noise-cancelling headphones and retreat to a room with mesmerising lights when it all gets too much? Or just curl in a ball with my hands over my ears when I don’t like the situation? Can I scream when things don’t go as I’d like, just to release the tension and make my feelings known?

SP has trouble with transitions because he lacks the theory of mind to see the possibilities. He’s resistant to change because he can’t predict that change as a possibility. He can’t imagine what it will lead to or what demands will be made of him, so he sticks to what he knows.

I have trouble with transitions because I can see all of the possibilities. I can see that everything might be fine, but I can also see that it very well might not be (and can construe the probability that at least in part it won’t be all ok from evidence from others before me). I’m resistant to change because it’s more comforting to stick with what we know. I dislike the lack of certainty that SP’s demands will be met.

  
For now I’ll stick to another of SP’s tactics, that of ‘First’ and ‘Then’. First I’ll brace myself to let go of Mrs H. It won’t be pretty or dignified. But I’ll have to rip the bond like a sticking plaster. I’ll try to bide the advice of Dr Seuss: ‘Don’t cry because it’s over; smile because it happened.’ Easier said than done. Long-term I will, but by the end of term, it’s unlikely. Then I’ll prepare him (and me!) for school. Which will more than likely involve the production of velcroed pictures to help ease the transitions. I’m still not sure how we’re going to get him to wear that clip-on tie though.