It’s been a rough couple of years, hasn’t it?

To be honest, I’m not even sure what I’m going to say right now. So bear with me if this turns into a ramble — I’m kind of hopped up on painkillers.

Anyway, as it’s obvious to anyone with half a brain that I’ve been MIA for about two years, I’m not going to dwell on the f*ckery that has been the pandemic, because it won’t change anything, and frankly it will only make me miserable. Nobody needs more misery, right?

So much has happened, and much of it painful but there have been some good times, and I’m going to concentrate on those. I’m finally making some decent money after publishing my third book, and I’m learning to carve out time in my days, and to view my writing as the job it is. I’ve also got a side gig happening as an editor and proofreader, which is a use of talents I gave away for free for far too long. I’m several noughts on the bank account away from being able to retire, but at the grand age of mumblemumblefiftysomething I am finally doing what I love, and getting paid for it.

Only the two youngest are still at home, unsurprisingly. They’re wonderful boys, and growing up scarily fast. One of them is taking driving lessons (gulp!) and they’re both blowing me away with what they learn in their mostly autonomous home education. We do some set lessons, but they’re both such independent learners and with such unique styles and ways of learning, it would be cruel to try forcing a school-type routine on them.

So that’s enough as a “I’m back” announcement, except for one last thing. I’ve changed the name of the blog (although not the actual name of the site as I can’t do that, or apparently not). I’m non binary, and have updated myself as a parent. It feels good to be me. Pronouns they/them.

One of very favourite ornaments.

Hello, we’re back!

It’s been ages. If there’s anyone still here who read any of my previous posts and reads this I’ll be amazed.

Basically life got in the way. I’m not going to bother listing everything that has happened, but now I’ve updated my password and can access my own site (lol) I want to keep the blog going, even if it is sporadic.

I now home educate both the younger two children. This has probably been the biggest change in our lives as a family, as it impacts on everything when you’re with your child(ren) almost 24/7. I’ve had a lot of learning of my own to do, specifically in terms of trying to carve out some “me time”.

The boys are now both teenagers, something that boggles my mind if I stop and think about it for too long; seems like the other day their oldest sibling was a toddler. They’re great kids, and after a lengthy period of adjustment to not being in school anymore they’re once again learning how to enjoy learning. We have a semi-autonomous education philosophy, which means I do give them some structure but mostly I’m guided to help them learn about what interests them.

What else is new? The eldest has a career in London. The twins are leading very separate lives as indeed they have for a long time. One is at college, the other working in Glasgow. The days of seven around the table for dinner are a sadly distant memory, but obviously it’s wonderful to see adult children grow and thrive and move on.**

When I started this blog it was, I think, a way for me to document the various ways I’d found to support my children, especially with regard to the issues that arose due to their being autistic. I might do some more posts about specifics in the future but right now I don’t feel the urge. I’ve learned as much about myself over the past decade as I have about the kids, and again, I might divulge some of that later, or I might not. Suffice to say – and it’s a cliché – life is a journey and some parts are worth talking about, some we like to ponder in silence.

So, anyway, that’s it for today. Be kind to each other. Stay healthy.

**Not necessarily working or in college right now due to COVID-19

 

 

“She’s very good with autism”

The children have been without a paediatrician for a while now, not that it’s bothered them, or me, as I still send off their melatonin requests and a magic pixie (aka a very nice doctor’s secretary) ensures they are filled.

I was told ages ago that their new paed would be Dr W. OK, I said, thank you. It helped a little that this new doctor has the same first name as the one who has retired. Children like mine don’t do change easily, and this helped. Every time we’ve been up to the autism centre in town I’ve made sure to point out her picture on the wall too. Familiarity, you see?

Then the appointment was cancelled due to a personal family matter. We understood; doctors are human too. Then more time went on, and the next date we got was no good as we were on holiday. And then the next one coincided with a previous engagement. You get the picture?

All this time, bear in mind, I’d been reminding the children gently that it would be Dr W when they finally get the appointment.

A letter arrived. I slit the envelope, saw it was from the clinic and thought “I’ll make sure to take that along with us tomorrow.” I knew there could be nothing in it as I’d arranged the time and date over the telephone.

Something made me look though. Instead of the name Dr W I’d been expecting to see, there was a line that read Team: Dr G. Uh oh!!

i didn’t panic. I assumed that Dr G was now Dr W’s boss, because anything else, like a change of paed, my autistic children would have been warned, right?

Wrong. When I phoned the lovely secretary (seriously, they do not pay this woman enough) she informed me that Dr W was “only ever interim”, and that Dr G was the new paed for the area. And then she said what I put in quotes as the title of this post. “She’s good with autism”.

I beg to differ. This woman may indeed be a lovely person, but if she’s made it to consultant level and hasn’t yet realised that a vast percentage of autistic people don’t cope well with sudden change, then she is not “good with autism”.

I told the secretary I would talk to the children. I kept it light and cheerful deliberately. If I could get this box-ticking exercise out of the way it would be in everyone’s best interests,

Two minutes later, I had one on the verge of tears and a meltdown and the other stony faced and sullen. They are 11 and 12 now, and neither is small for their age. Both refused point blank to go. I tried to cajole, offer the treat of lunch out afterwards. All to no avail.

And I know my kids. If they won’t go somewhere, there is no physical way to make it happen. I also didn’t want to wake them tomorrow and have them screaming and yelling in panic as their anxiety spiralled when I could avoid it.

So I rang the local support charity for advice, as to be honest, I had no idea who else to call. They suggested I phone the clinic back and state what had happened, and that the ball was now in their court to ensure my children get an appointment with Dr W (who is still working in the area) as they had been promised.

So I made a cuppa and had a flap for a moment about having to be confrontational, which I hate. Then I called.

Luckily the aforementioned secretary is a diamond, and totally understood, and promised to pass on the message, including why they won’t be coming tomorrow.

For now, crisis averted. But seriously, how does anyone who has risen to the ranks of consultant and whose speciality (presumably) is autism, think this is OK? How hard would it be to ask your team to quickly phone around and inform parents that there has been a change of staff and how can they ease the transition? Because that is all it would have taken. One phone call, a few weeks ago, when I could have requested a photo of the new doctor and stuck it up, together with a reminder of the clinic time.

So no, Dr G, you might be a very nice person, and you might have lots of letters after your name. But you are not “very good with autism”.

It’s Been Non-Stop (As Always)

No, I’ve not fallen off the edge of the planet; it just seems that way.

It’s been absolutely non stop since last summer, when the children went back to school and Teen Boy went off to college.

Small Girl’s return to school went badly, to say the least. I could not understand what had upset her so badly, but every afternoon and evening, and then the mornings, started to go back to what I thought of as the Bad Old Days, before she had full time support.

She was unable to verbalise anything specific, and I decided it must be “just” a bad transition after the good summer we’d had.

Oh no it wasn’t! I found out after almost three weeks – when we weren’t talking specifically about school – that her PSA (Pupil Support Asst) had been taken away from her! With no notice, and nothing home, not even an email to inform me of this massive change.

The effect on Small Girl was nothing short of catastrophic. Her ability to function in the mainstream environment depended entirely on having her own adapted curriculum and dedicated support from this lovely woman who could read her moods better than anyone outside of the family.

Obviously, I raised merry hell at the school. The poor head apologised that we hadn’t been told (What? You honestly expected a child who you know becomes non verbal under stress to pop out this wee gem at home time?) and then we got the bad news that the LEA had done this across the entire Highland Region. It wasn’t the decision of the school, and in fact they couldn’t cope, i.e. expect to fulfill basic requirements with the additional support they currently had. I said, well no, of course you can’t because my daughter’s full time support has suddenly been axed. Not allowing for anyone else, this was a serious issue.

The biggest problem we had with this withdrawal of support was the very real risk to SG’s physical safety; put simply, if she’s very upset she’ll do a runner. Highland schools are not on lock-down like a lot of English ones seem to be, so it’s the work of seconds to be out the doors and over the fence, straight onto the main road, down the hill, and – God forbid – into the sea (which is a huge draw for a lot of autistic children , SG being no exception.

So, we did the only sensible thing; we kept her at home. I could have decided to take the education department to a tribunal for endangering the life of an autistic child (among other failures) but in the end I thought it simply wasn’t worth the energy it would cost me, and the detrimental effect it would have on her, being effectively in limbo while we fought on. I wrote a letter requesting permission to de-register her from school instead.

There was a nasty moment when we got threatened by some suit at the council, so I promptly sent him a sharply worded email setting out in detail exactly how they were breaking any number of laws by their persistent failure to provide a safe and nurturing environment for my disabled child, and that if they wanted to argue, they could bring it on. I said she was being kept at home as being in school was detrimental to her mental and physical well-being.

I got the permission to de-register a lot faster than the maximum six weeks – what a surprise!

Anyway, since then we’ve been de-schooling, which mostly consists of a lot of cuddles, stories and play doh, with visits to the library and the parks. Small Girl has also done a fair bit of what I’d term “school work” in various work books, and on line, but she’s still scarred from the build up of years of sensory overload, so we’re taking it slowly.

And what of Small Boy? Well, he’s had a tempestuous year so far, I think it’s fair to say. His anxiety is still off-the-charts bad, and my state of alertness to the possibility of a meltdown (and omg they are spectacular in their violence and length) puts me on a level (or so it feels) of a bomb disposal cat who’s used up eight lives. My sleep is fractured as I never seem to be able to switch off, I get a ton of headaches, and I am often grumpy AF, but as we head towards the last ten weeks of his school life, ricocheting from day to day, and his insistence that he can manage the four hours a week he is timetabled for, I am excited to know that from the end of June he will be finished with primary school, and from then on, the education of both my youngest will no longer be anything to do with the education authority. And I’m looking forward to learning all manner of new and interesting things alongside these two amazing kids that we won’t allow the school system to break.

Mental health is often precarious in autistic people, whatever their age, and frankly no wonder. The pressure to conform to neurotypical standards is high, and even some of the special schools just don’t “get” it. They might be able to mask, but eventually the mask will slip, and the fallout is bad, often resulting in self harm, low self esteem and more. If Scotland refuses to accept that the ethos of mainstream for all is damaging, then I can’t use my children as a weapon to prove how badly wrong the system is, not if I want them to stand a chance of being mentally sound and proud to be autistically authentic.

I’m no saint, and I often get it wrong BUT unlike teachers who spend so much of their time keeping control rather than imparting knowledge, and then, in Small Girl’s words “making us sit down and do maths” I can hopefully make them comfortable in their own skins as they branch out into learning what enthuses them. Am I scared? Yup, you betcha. Do I think I can do this? Yes I do. Because what I want for them is not a string of letters after their names (I mean, that would be cool) but rather for them to have enough confidence to face the future being proud of what they’ve achieved. If they are polite, and kind, and know how to cook meals and load the washing machine, and sing along to Korean pop music, as well as add up and read, then I’ll consider they’re doing all right.

So that’s us right now. In limbo with Small Boy and his final few weeks of school, and sort-of still de-schooling with madam. But we’re all still here, and the good days outnumber the bad.

Here they are last weekend, enjoying being outside for once. At the risk of jinxing it, we finally have some half-decent weather.

 

A Weighty Issue

She lasted seven whole days. And I leave tomorrow, so it was almost the entire duration of my stay. I should have known it would come up at some point.

I was straightening my hair, sitting on the floor in her bedroom, in front of the only full length mirror in the house. I hate full length mirrors but it’s the only one near enough to a plug, so there I was. I sighed, and – I do know I started it – said, “If only I was as fat as I was when I was twenty and merely thought I was fat.”

Now, dear reader, at age twenty I was in fact underweight for my height. Not enough to trigger any concern on behalf of medical professionals or indeed anyone else, but definitely on the skinny side, medically underweight. And yet I still believed I was enormous.

Years of restricting what I put in my mouth behind me, and ahead of me at that time, made me hypercritical of my appearance. Coupled with a growing hatred of my very obviously feminine body from the start of puberty when my favourite jeans would no longer zip as I developed hips, it was a slippery slope to calorie counting, skipped meals and lying through my teeth about what I’d eaten and when. It was control, and it lasted all through my teens and into my early twenties. Getting up super early for school and using the milk I would tip into my coffee to first swirl around the cereal bowl so it looked as though I’d eaten was a favourite trick.

Sucking on Polos throughout the day, oh so slowly until each one was paper thin and then cracked, was another. Chewing gum was a favourite too for a while, but the acid that swirled in my stomach made me give that up. Swapping the Kit Kat in my lunch box for a piece of fruit made me popular and kept the calories down.

I never really thought at the time about what I was doing, but it was – I think – a knee jerk reaction, both to the arrival of definite curves (I went from tomboy stick to hourglass in the space of one summer holiday) and to my mother’s careful insistence from birth that I never missed a meal.

I know she had been hungry at times, and I can’t blame her for not wanting the same for her children, I really can’t. She was a war baby, and suffered quite serious deprivation at times, especially in the food and nutrition department, but her urge to never be hungry again tipped into a rigid control of her own. Mealtimes in our house growing up were absolutely non negotiable, But coupled with that was another kind of control, the one where you ate everything on your plate regardless if you were hungry or not, and you certainly didn’t get pudding until your dinner plate was clear. Anything you tried to leave was frowned upon as a criminal waste.

I can see her point, and it’s not about blaming my mother, because I am old enough to know better. But she did sow the seeds for my need to control my eating habits.

Now, I am the opposite. I have just one full length mirror at home, and it’s partially hidden by a large box I deliberately shoved in front of it. A quick glance to check my hair’s OK is about as far as I usually venture into the world of reflections. That way I don’t have to look at the blob I’ve become.

Obviously, I’m not stupid. I know that fewer calories going in, and more expenditure by way of exercise would pretty much guarantee me some weight loss. But it is not that easy. If it were, we’d all be a perfect size ten or whatever the fuckity fuck we’re “supposed” to be for optimal health and fitness. A hint of defensiveness creeping in here, oops.

I have five kids. The second two were twins. My pelvis became unstable and I ended up on crutches, in agony due to SPD, symphysis pubic dysfunction. Look it up if you’re interested, but basically it means the two halves of my skeleton were attempting to pull themselves apart. Nice huh? The good news is that I gave birth (at 37 weeks, thank you wonderful obstetrician who scheduled me for induction due to “maternal distress”) to two wonderfully healthy babies, a fact for which I will be forever grateful. And I did manage to pull the two halves of my traumatised body back together again with the support of a lovely post-natal fitness instructor.

Move on several years and I had our fourth child, then promptly fell pregnant with number five. I spent half that pregnancy on crutches too. She arrived 14 months after number 4, and my body fell apart. She is now ten and my poor osteopath grits her teeth whenever I manage to make the 52 mile journey to her clinic because I am too sore to keep functioning without her help. She lovingly puts me back together again, and I rejoice in my non painful pelvis until I walk a bit too far, or run about the beach with my kids and undo all her good work.

As well as the five amazing children I have, I also have six that didn’t make it. Not writing that for the sympathy vote – life’s too short – but it is a fact that the rush of hormones at the start of each pregnancy, valid or not, have contributed to the train wreck that is my pelvis. It’s a biological fact. And it doesn’t help.

Coupled with all that, I’m a bit of a hermit. I prefer my own company, that of my kids, or of one other person at a time. And yet I also get lonely. Yup, bit of a mess lol. But at times, I deal with my messed-up head by eating things that I shouldn’t. Possibly an entire packet of them. Oh go on, yes, pretty much always a whole packet.  Biscuits generally, or sweets.

I know it’s destructive behaviour but I have an addictive personality and I find it hellish hard to stop. 95% of the time I don’t enjoy it after the first one or two, and yet I  still don’t stop. This addictive behaviour is one of the main reasons I don’t drink. I’ve been at the point where having a few was dangerously close to tipping over into something a lot worse, so I stopped. This past week I’ve had four G&Ts and that is more than I’ve had in the past two years. I enjoyed them, and now it’s done. Back to tea and water and coffee.

So, back to this morning in front of the mirror. “Well,’ said Mum, ‘X did it, didn’t he?” Referrring to a member of the family who has in the past year shed a ton of weight. I am incredibly proud of him, but it wasn’t easy, changing the habits of a lifetime, and, more importantly, he wasn’t restricted by a body that won’t allow him to walk 10K steps a day come rain or shine. Nor is he an addictive personality type. Never has been. He just made bad food choices.

I actually make better food choices overall. I still do. I just happen to add in a ton of shit on top, which is frankly crazy. But I never pretended to be sane.

It hurt. It hurt that my mum thinks I “just” need to back off on the treats and add in a few laps of the village each day. It hurts that no matter how many times I’ve tried to explain, she just doesn’t get it. It hurts that she probably thinks her daughter is lazy and greedy.

I’m not. I’m really not. There are more reasons than the above for my weight gain, but I’m not ready to share them publicly, and I may never be. But it’s almost never as simple as ‘Oh you should skip the biscuits and you’ll be fine.” Sometimes it is. I know that X had fallen into bad habits and needed a wake up call. He got it, and he is turning his life around. It’s a long road, and I want to join him on that path, but I need support.

I have never been this honest about anything personal. Not even sure why I felt the urge to start writing, but perhaps this might help one person to stand in front of their own mirror and see that they are so much more than the reflection of their lumps and bumps. I know I am. I just need to believe it.

Surviving the Holidays

I wish I could write enjoying the holidays, but that wouldn’t be entirely accurate.

We managed a fortnight away in the New Forest, at the place we usually stay, and I had erroneously thought this would be two weeks of calm relaxation and joyful days out. Sadly, there were numerous meltdowns and episodes of crying to go home, as both the younger ones struggled with the change to a new environment.

Thankfully, ponies came to the rescue. We stay on a working horse “farm” for want of a better word, and the yard is always busy, either with the the owners tacking up a pony for a Hackney carriage-driving lesson, or someone who keeps their ponies there coming to muck out and feed their charges. All the offspring love horses and the place is safe enough to allow them to wander off. If Small Girl went missing, she was always found either petting the nose of someone stabled, or hanging over a fence enticing a reluctant pony to advance with the offer of a piece of carrot.

One owner, Jeannie, who we’ve known for years, was grateful to have extra pairs of hands to cart bales of hay and help sweep up, and we really developed a friendship this summer. I hadn’t deemed it necessary to book a hack in advance for the kids, but it turned out that due to high demand, there was no way the younger two could get to ride, as they need to be led. They were very down about this until Jeannie offered a solution.

And so we became owners for a day! Teddy the Shetland arrived in a horse box and was unloaded into a paddock. The children were thrilled. After he’d had a quick chomp of grass they (with the help of responsible Teen Girl) led him to the yard for a thorough grooming, before he was led back to the paddock where they took turns riding him.

A lead rein and bareback is very different from a saddle and all the “proper” tack, and like this, the roles of the two kids were reversed. SB who generally has a good seat and seems confident in the saddle struggled to remain upright and seated, whereas SG who sometimes resembles the proverbial sack of potatoes on horseback seemed to find the challenge of bareback riding one she was more than equal to, and rode like she was born to it.

Teddy stayed with us all day, and was collected by Jeannie that evening, brushed till he shone, and having trotted for what seemed like miles up and down the paddock, but was probably in reality no more than several hundred yards. The kids didn’t miraculously turn into the calmest people on the planet, but their pony day went a long way to reassuring them that not everything had changed.

And after all the meltdowns? The day we packed the car to come home, SB looked around the empty apartment with a sad face and declared, “I hope we can come back next year.”

Musical Magic (aka Happy Birthday Mr Rhodes)

There are just some songs that instantly make one happy, aren’t there? I mentally compile playlists all the time, especially when I’m out driving and a favourite comes on the radio.

But there are occasionally tunes that inspire what I can only describe as a burst of pure physical joy, and I heard one this afternoon as I was driving Small Boy back from his art and craft lesson.

It was this:

I remember sitting in front of the TV, our Amstrad video-recorder with the tape in the right place, and my fingers on the record button (oh don’t get all moral on me, we all did it!) and waiting for Peter Powell to announce the world wide debut of this single on The Oxford Road Show. As I was driving along the A9 today, and this song came on, I could almost feel the bubbles of excitement in my teenage chest, that sense of wonder that is so precious that I wish we could bottle it for later, and my entire being felt as if it was aglow with the anticipation I felt 33 years ago. Oh ye gods, shoot me now, I’m old!

Anyway, I digress. Oblivious to Small Boy in the back, I yowled along, word perfect, and might even have punched the air occasionally as I took us homeward. The memory of that TV moment is only surpassed by the recollection of 11,000 people all waving their fingers and pointing at exactly the same time  to the part of this tune where Simon sings “you’re about as easy as a nuclear war” which was something to behold at a gig at Wembley Arena. Coincidentally, that was also the same concert at which – in a rare quiet second – me and my two friends screamed his name so loudly that Nick Rhodes looked up and actually waved at us. Yes, it happened. Be jealous. Whatever. I have that burned on my soul. No apologies.

Small Boy, as I have mentioned, was sitting in the back, also oblivious to me. He had his big sister’s borrowed MP3 player, and her headphones, and was in his own little word, doing a more than passable impression of Joe from The A Word. His musical drug of choice is the very lovely Ed Sheeran, and he plays certain songs on repeat, namely You Need Me I Don’t Need You, which has the rather naughty line “They say I’m up and coming like I’m f*cking in an elevator.” Ed! and you look such a nice young man.  Luckily, unlike his little sister, Small Boy doesn’t tend to use echolalia and knows better than to  sing one word of that particular line, so we get along fine.

All joking apart, Ed Sheeran is SB’s “safe place” when he’s trying to self-calm, especially if he is anxious, and he is anxious a lot of the time. Learning the words, and playing the songs over and over brings him a huge degree of comfort. He zones out and I see one of two expressions, a furious concentration as he sings along, or this one:

This is what I love to see when I glance in the rear-view mirror, a chilled out Small Boy, at peace with his surroundings. He had a great day today; up at the right time and dressed and breakfasted without any problems. He’s finally getting used to heading off on a Wednesday to his art and craft, and it’s just a shame that I don’t think there will be the money for it to continue after the summer holidays.

By a stroke of luck, today also happens to be the birthday of one Mr Nick Rhodes, so I shall leave you with this picture shamelessly screen-shotted from Duran Duran’s IG account (hope you don’t mind lads) and it remains for me to wish Nick a very happy birthday from a lifelong fan.

This post is dedicated to the lovely Tracy aka @c0dfanglers, who is my sister-from-another-mother, and lifelong Durannie. Enjoy the pics honey xx

 

We’ve Kind of Been Here Before

Since I last updated here, it’s all gone a bit wrong (again).

Small Boy has been out of school since two days after the start of the summer term. It was almost impossible to get him back to school after Easter, but the crunch came when I had Small Girl at a Camhs appointment and I spent 3/4 of it talking about SB. I had the light-bulb moment where I thought we’re damaging him, leaving him every day somewhere we have to drag him to screaming. The screaming is communication; all he can say is help me, and we’re not listening. We need to change this.

I drove SG back to school for the afternoon session and he appeared at the staff room door while I was letting SG’s PSA know she was back on the premises. He had seen my car, and that I hadn’t driven straight off. He didn’t speak, just looked straight at me with tears shining in his eyes and wrapped his arms around my waist. I told him to collect all his belongings and to wait for me by his coat peg. Then I told the staff that the only sensible and kind thing I could do was to remove him until further notice. I assured them it was nothing they had done wrong (it really wasn’t) but it was hurting him, and my job was to protect him.

The relief on his wee face was a wake up call if ever I needed one. I sent a text to Hubby to inform him of what I’d done, and not to be surprised if he called and heard SB in the background. And then we waited.

The first two weeks were the worst. Somehow I’d got it into my head that away from the hyper-stimulating environment (or whatever) of school that he would quickly bounce back and “be himself.” That didn’t happen. He was rude, angry, aggressive, even violent, and my heart sank as I wondered if I had somehow made a bad situation worse.

But I hadn’t, and my instincts were right. One day I got a smile, a genuine one. Then he asked a question – about the platypus as it happens – and we spent half an hour on Google, learning everything we could about the strange and frankly terrifying critters, and now, several weeks on, I can almost say I have my boy back.

He’s still angry, and frustrated, and horribly panicked about any kind of change to his routine, but the absolute terror has mostly gone from his eyes. School are continuing to be wonderful in their support, and there is a team dedicated to trying to “fix” what went wrong. The only problem is that without the input of specialist services that deal with mental health issues, specifically those of young autistic people, we might not get much further. And guess which service we are still waiting on? Yes, you know it.

Without knowing just what he can’t cope with, there is no way we are prepared to attempt to put him back into full time schooling, just to see the very same thing happen all over again. The stumbling block is that being only just 11, he has no idea what his triggers are. Having Teen Boy around is helpful, as we can take a stab at the worst of the probables, but they are not definite. TB has told us it was several years later that he finally managed to start filtering out the worst of his sensory issues, so it might be that part of what we have to do is wait until SB can do the same. Which doesn’t help much with school, but I refuse to rush him. He is autistic, and I will not shove him into a mainstream neurotypical pond and demand he swims like the NT fish because he can’t. And why should he? If he were blind, or in a wheelchair, the system would know it had to adapt for him. But because you can’t look at an autistic person and see the autism, for some reason it’s acceptable (well it’s really not but other people think it is) to squash and squeeze and push them until they are stuffed into the same round holes as everyone else, no matter that they are perfectly content to be square pegs.

Well, this mumma says no! My square pegs require square holes, and if it takes yet another fight, bring it!

In the mean time, SB is coping with one hour of practical science once a week, one to one with a PSA, and for some reason, 90 mins of PE too. Rather him than me *shudders*.

For another time, I’ll write about our tentative journey into home education.

 

Open Wide

Last time Small Boy was at the dentist there was concern raised about the way his teeth were fitting into his mouth i.e. at all the wrong angles. Knowing our family history, they recalled SB for a check up. He seemed fine about it at the time.

Last night I reminded him he was having a check-up today. This morning I reminded him.

An hour before the appointment time I gave him a five minute warning for brushing his teeth.

And then I tried to brush them. Oh. Dear. Lord. I was even happy for him to do them (he usually does pretty well) but he backed away from me, and the loaded toothbrush went flying. Nothing I could say or do would convince him to open his mouth.

Defeated, I put the brush away and thought, oh well, it won’t be the first time a dentist has been faced with a mouth that has remnants of bagel and hot chocolate in it; it could be worse. OK, take two – we’ll go as we are.

Or not! For some reason SB had decided that he was going to “have teeth ripped out of me” and that he would be in terrible pain. As a total dental wimp myself I could sympathise but we were running short of time, and I knew that it was a check up and no more. But SB was at the point where the terror was about to spill over into a meltdown, and then I knew it would mean a cancelled appointment. He was curled into a ball, rocking and sobbing, and not able to hear what I was saying. The fear had taken over.

So, I did what any parent who has a hidden store of presents would do. I offered him a new Skylander toy if he would get into the car and go into the dentist. Oh yes, I’m smart enough to know that I had to mention that second part. He’s more than sassy enough to call me out on it if I hadn’t and demand the gift as reward for getting into the car. I can hear him now, “you didn’t say anything about getting out of the car Mum.”

Thankfully, the Skylander word was enough to get him to look up. I pressed home my advantage and repeated my offer. He got up, I shoved a tissue at his snotty nose and we high-tailed it out of the house like our backsides were on fire.

Once in the car and moving, the doors lock automatically. If I’ve got that far, I can generally relax a bit.

The dentist is new since SB’s last appointment, and he was AMAZING. I’d managed to scribble a few notes on a scrap of paper and the receptionist took it straight to him. He then came out to speak quietly to me, and said if the surgery was too frightening he would look at SB’s teeth right there in the waiting room. Is it OK to fall a little in love with your dentist at this point? Anyway, SB was OK with going into the surgery, although he still looked haunted. They turned off the lights as he has bad light sensitivity, gave him the big specs to wear, and then the dentist took over, checking all his teeth and explaining as he went along, without ever being condescending. SB began to relax a little, and at the end the dentist patiently suffered a long spiel about Pokemon, which he bore with a smile.

SB will be referred to the orthodontist at the hospital as it’s very likely that he will need some teeth out, and train track braces (uh oh). All his notes including all the information about his autism and how it affects him will also be sent. He reassured SB that he is not allowed to be in pain at any time and that whatever treatment he has in the future they will all ensure to keep him pain free.

This dentist is never allowed to leave our practice!

We headed back home via the local town for a small bag of shopping. It was lunch time and I decided both children deserved a wee treat, so I gave them both chips for lunch.

And yes, the second we were in the door, I found the Skylander. It was worth every penny to keep him calm. Hopefully he won’t need one every visit, but if that is what it takes to have healthy teeth, then so be it.

 

The Good and the Bad

It’s been a tough few months in the Justgoodenough household, and – frankly speaking – nothing seemed to be good enough.

Both the young ones suffered very badly from the combined effects of a new (thankfully permanent) class teacher and the organised chaos that is the term leading up to the Christmas holidays.

Even with the school routine checked out on the daily visual chart, and any changes discussed, with loads of reassurance from me and their dad, Small Boy and Small Girl were both anxious, cranky and sometimes downright out of control, both before and after school.

Small Boy in particular had several (and I don’t want to think back and count them up as the total would be really depressing!) occasions when I had to act tough and physically dress him and then half drag him into school. We work to always give them a choice in as much as we can, so they both of them feel they have an element of control in their lives, which to be fair, are mostly managed by adults, and rightly so as they are children. Examples are allowing them to choose between toast and bagels, hot and cold cereals, jeans or joggers. Not exciting stuff, but then when you are dealing with a child who point blank refuses to see anything good in the entire school week with the exception of the end of class bell on a Friday afternoon, there isn’t much to work with.

Still, I did as much as I could, and knowing Small Boy and his indefatigable logic, I knew I had to get him into school every day, as if I had wavered just once, and he’d not been actually unwell, he wouldn’t have gone back in again. The worst day was the Monday before Christmas, when I had to call the school and get the head teacher involved. Small Boy was barely dressed, had refused to eat or drink, and then just as I thought he might be calming down, he shot past me and tried to race out of the door.

It was freezing cold, he was only wearing thin trousers and a polo shirt, and his trainers were unlaced. How I moved quickly enough to catch him I shall never know, but I’m pleased I did as I dread to think of how long he might have been missing for.

The head drove down and I bundled him into her car so we could physically get him the very short distance from home into the school building. From there he shot into the classroom – after I blocked the exit – and hid under his desk, rolled into a ball. The TA that he shares with Small Girl and another child was there to keep an eye on him, and the head stayed with him while he calmed down. I know they offered him a banana and a drink when he was able to sit at the desk rather than under it (I came prepared for the lack of breakfast). He didn’t join the other children for the rest of the day, but did do some work at his separate desk.

I felt terrible about pushing him, but I knew I didn’t have a choice. What we hadn’t realised until this year is how badly any kind of change affects him, and it’s getting progressively worse. We don’t know if hormones are involved – he’s nearer 11 than 10 – or whether it’s “one of those things” but we do know that even with every support the school had put into place, it was nowhere near enough.

The Christmas break came a day early as their TA was sick on the last day and they weren’t able to find a replacement. There were too many variables in the day, including an end of term service in the neighbouring abbey, that meant it wouldn’t have been safe to send either of them, so with the head’s agreement I declared a pyjama day and kissed goodbye to my planned six hour’s wrapping marathon.

Behaviour improved a little, but then as soon as the last Christmas present had been unwrapped and the usual roast lunch was dished up, I noticed a profound difference. I won’t say that everything has been perfect since then, but I think knowing there are no more big surprises planned has been a huge relief.

I was dreading them going back to school but in fact it’s been remarkably calm. I did give Small Boy a small chat about maybe seeing if he could try hard to understand that nothing has been “normal” for his teacher since she started as she came right into the whole Christmas plans chaos, and he agreed to try. For school’s part, I insisted that Small Boy be given the choice to work at his separate desk for any lesson, as long as he proved their trust in him by actually working and not messing about or dreaming. Not that he has done either of those things, but it has to be a two-way street. He can hear the class from his desk, just not see them as he is separated by a row of bookshelves. The teacher or TA checks on him regularly, and he has been much happier.

On Wednesday he came home with a sticker on his jumper. Turns out it was for the best child in the class that day. Cue me trying to not cry with pride. Then Thursday he turned up with another sticker, for a repeat performance.

And yesterday? He came out of school with this:

Small Girl, not to be outdone, came out adorned with a fantastic sticker for being the best in class that day.

Not ashamed to admit I teared up a bit. OK, a lot.

Sadly, the effort of having been so amazing all week was too much for Small Boy who had a (mercifully brief) violent meltdown about an hour after getting home, triggered by something very small. I kept him safe while he raged and then held him until he was calm enough to know where he was. He was quiet after that, and a little subdued, but still able to eat his tea and go to Scouts, more proof that he is handling the new routine pretty well.

So, the good and the bad. It’s a constant balancing act trying to ensure I push for my children to have the adaptations to the school day that allows them to attend, but at the same time not letting them think they can just refuse to go in.

However, I think one thing is clear. Neither of my children can cope with the Christmas term. I have review meetings for both of them next week and top of my agenda will be a concrete plan for November and December of this year. I cannot allow either of them to go through the hell that it plainly is. I dread having to remove them from school, but if that is what it takes to ensure their well-being then I will, but I will be pushing for tutoring too.

It could be a busy year!