Tag Archives: school

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.

 

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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.

 

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.

Assessment Time (again)

19 May

Well, it feels like a slight case of deja vu, but this morning I took B (Small Boy) to see the community paediatrician in the first step of looking for some answers.

After various chats with a couple of very good friends, and a meeting with the Head Teacher of his school, we are all agreed that the most likely scenario is that B is also on the autism spectrum. There are only so many times you can hear the words “he’s so like his brother at that age” before you realise you’ve been so caught up in dealing with everyday life in a neuro-diverse household that you might possibly have overlooked one of the members.

Actually, that’s not true. We’ve not overlooked him – there is no way anyone could ignore our Small Boy – too loud and in your face bless him, but we have probably been guilty of thinking him badly behaved rather than autistically behaved, and there is a world of difference between the two.

So, with the backing of school, and the accepted knowledge that we do generally know what we’re talking about, the paediatrician is sending us the colossal booklet of questions that I remember filling in about Teen Boy when he was younger, and the whole process starts up again.

I’m sure if in the future we walk away from a meeting with a diagnosis, there will be a period of adjustment and possibly even anger or disappointment, but I’m wise enough to know that it won’t last and our beautiful boy will revert to being “just B” , but with a little more support and understanding in this confusing and anxiety-inducing neuro-typical world he’s forced to live in.

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Tipping the Balance

5 May

The Bank Holiday was quiet, really quiet. Hubby had to work and Teen Boy was at his boarding school, so I had Teen Girl asleep half of the day and the small people playing nicely almost all day.

Yes, I did say that – almost all day. I know, miracle, right? There was a wobble when I *persuaded* them to play outside for half an hour and B protested, loudly, but it happened. And then it all went a bit pear-shaped in the evening, but basically it was a good day.

Last night however. Urgh. Poor M was visited by the Anxiety Fairy, repeatedly. Which meant I kept getting woken up too, to reassure her that her tummy pains were most likely because she was anxious about school after a three day weekend, and not because she was likely to be sick. It’s not easy being awake enough at 3 am to talk through breathing exercises with an uptight eight year old but I think I managed it, as finally after three attempts she was back in her bed and stayed there.

This morning, naturally, she was very tired so the school run was anything but cheerful. I am staggering through the day and trying not to take a nap in case it prevents me sleeping tonight, but I wanted to buck myself up a bit as when I’m tired I tend to mope and it can become a downward spiral.

So, I went for a short walk. I always have my phone in my pocket, it’s like my security blanket I suppose, and I snapped a few pictures that made me smile. The quality is rubbish as it’s not a great phone, but I’ll put them up in case you like them too.

They reminded me that even when I’m feeling particularly crap, there is beauty in the world, and if I literally take the time to stop and smell the flowers, then just perhaps, I can tip the balance in favour of a happy day.

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The Eclipse

20 Mar

I guess lots of people will be sharing their stories, so here is ours.

The weather at 7.30 this morning looked very promising  with sunshine and blue skies; however it’s not the best time to encourage me outside when I’m frantically trying to wake myself up with a cup of tea and get two sleepy children to get ready for school. By the time I dropped them off at five to nine the temperature had plummeted and the wind and rain were beating against the car windscreen. I had warned M exactly what an eclipse could be like in case it got very dark and she was scared, but she seemed content so I didn’t say too much. With an autistic child, it’s difficult to know just how to pitch some conversations but I thought she would be OK. Some daft notion made me slip their special eclipse glasses into their school bags “just in case.”

I came home and grabbed a coffee, then noticed that the sun was trying to break through again. I took my lenses and headed outside. The weather was indeed perking up.

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I managed to pry L from her bed (poor girl is still totally exhausted and unwell) but she was less than impressed with the view through the glasses, unlike me who was thrilled that the sun was now a sliver of orange. Even though it was freezing I kept going back outside to have another look.

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Obviously I didn’t try and capture the sun with my rubbish phone camera but I did take a few shots as the sky went some weird colours, although it doesn’t really look like it here.

Then I had the idea to ring the school and let them know that B and M had the special glasses in case it was possible to let them share. Turns out the Head Teacher was delighted and marshalled the kids outside two at a time for a glimpse. My two got instant popularity status for enabling this, although I suspect the PE teacher will have been less than impressed to have her class so rudely interrupted! This is my two who made their way into the weekly newsletter (photo shamelessly nicked from that)

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I was quite underwhelmed with how dark it didn’t get, as I remember in 1999 and some time back when I was in primary school myself, it had been a lot more impressive. But then again, both those times I didn’t have funky specs so I could stare directly at the sun. In fact, having called my mum to check my memory wasn’t defective, she was able to tell me that my primary school had sent every child home with a piece of smoked glass (can you imagine the outcry if a school did that now?) and a note detailing how to watch the eclipse.

I carried on nipping out to check the progress of the moon across the sun, and lent my specs to a couple of passers-by who were astounded how different it looked through them. By then I was more interested in the beach and how it looked in the strange light – with the noise of the waves crashing on the shore I hadn’t noticed that all the birds had stopped singing (which apparently they had) but I love this picture.

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Cue two happy excited children when they burst out of school at three o’clock today and according to the head, lots of other happy children who thought the whole thing was “amazing.” I’ve just been speaking on twitter to someone who said the head at their school had insisted all the blinds were to be closed and no-one would be watching due to health and safety. They didn’t even get to watch on TV like ours did. That made me very sad; education is not just about bums on seats and book learning, it should be about grabbing opportunities and making the most of the unexpected when it falls into your lap. This is one of those days when I am fervently grateful that even with little money and relatively few facilities, this tiny village school once again has shown me that it is the right place for my children.

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