Tag Archives: autism

It’s Been Non-Stop (As Always)

1 May

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.

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

 

Surviving the Holidays

25 Jul

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.”

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Musical Magic (aka Happy Birthday Mr Rhodes)

8 Jun

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:

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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.

Nick R IG

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

3 Jun

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

15 Feb

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.

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The Good and the Bad

16 Jan

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:

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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!

 

Bubbles are cool

19 Nov

It’s been a long – very long – time since my last post but so much has been going on, even though I’ve had plenty to say, I’ve had little time (or inclination) to write about it.

Long story short: in addition to Teen Boy and Small Girl being autistic, I now have a third diagnosed child – Small Boy. The whole process, from first discussing concerns with school to diagnosis, took a staggeringly fast four months, which goes some way to making up for the disasters that were the previous two times.

Coupled with that, and poor Small Boy’s horrendous autumn term so far, Teen Girl’s health has continued to be very poor, meaning that she is almost always in pain, exhausted, or swollen from whatever it is she is allergic to. The local hospital have run out of ideas so we’re now waiting for more specialist help at a hospital further away. In the mean time, her whole life is on hold, which is no way for a 17 year old to exist.

Small Boy is, we think, in the grip of an early hormone surge which is making his anger over small issues blow up out of all proportion. It’s like living with a hungry T-Rex most of the time, or as Small Girl says, “he has a volcano in his tummy and sometimes the lava goes everywhere.” She’s not wrong, and if he does get past the point of calming, the meltdowns are the worst I’ve ever seen. Bearing in mind I’ve had almost 18 years of parenting autistic children this is saying something.

School are being wonderful and have stepped up to provide as much support as they can, and right now neither one of the smalls has any pressure to do homework, which has taken after-school time to be a lot less stressful on us all.

Small Girl is not making a huge amount of progress on dealing with her anxiety, but she is really trying. Her CaMHS appointments come around every two or three weeks and the woman she sees is patient and very experienced. Right now, we are working on filling in a 5 point scale, so that SG can learn to recognise when her anxieties are building and try to self calm before she reaches meltdown.

One great calming technique is blowing bubbles. SG loves doing this anyway, and from my point of view, it’s cheap and easy to do just about anywhere. When she gets upset, the control needed to blow large bubbles automatically means her breathing will slow down, meaning she keeps calmer.  Here she is blowing a huge bubble this morning:

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She was engaged with her session this morning, and then ate her lunch in the car on the way back to school. She begged me to keep her off but she only had to make it through 90 minutes and I wasn’t going to be swayed by her big puppy-dog eyes, although I was very tempted. You can see for yourself just how cute she can be when she tries:

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Almost the end of another school week, and hopefully it will be a good one with no meltdowns from anyone.

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