Tag Archives: stress

“She’s very good with autism”

20 Nov

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)

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.


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


Keeping Sane (Just)

22 Dec



M has not enjoyed December. In fact, she has been on high alert since the schools went back after the half term break in October. Too many changes to the daily routine, and even when they have all been planned in advance, her autistic brain is on overload. Most afternoons and evenings there has been shouting and crying, to the point I seriously wondered about taking her out of school for the remainder of the term.

But, then, would I be helping her if I did? Everybody has some form of stress to deal with, and M’s school is superb in how they adapt and handle her anxieties, which I fear will be part of her life for a long time, if not for ever.

In the end, I left her in school and worked hard at reducing demands even further in the home. To date we still don’t have one single Christmas decoration up, and she has been allowed to trail her fleecy blankets, soft toys and soothers all over the house, even at the dinner table if it helps to keep her calm. And she has had a lot of baths.

Our bath is huge and takes a lot of water to fill it even half way. M adores water, it’s her primary sensory calming tool, and I am permanently grateful we don’t have a meter fitted. Her brother tends to have a shower first then we fill the bath and allow as many toys as M would like. She is always much happier after a good soak, although sadly there can be issues in getting her out of the tub.

Our Christmas will be low-key; a leisurely breakfast after the wild excitement of opening their stockings, then a few presents  over coffee. We always stop part way through, and stick on a DVD to keep the excitement from becoming overwhelming, then it’s back to presents and then a late lunch (keeping strictly to our usual weekly roast for M but extras for anyone who wants them.)

The evening will be Dr Who (of course!) and then in all probability a long bubble bath to help M wind down after a busy day.

I guess what I’m saying is don’t feel you have to conform to what other people might expect of you for the festive season – if it works for you or your child, then go ahead and celebrate the way that you feel most comfortable, even if it does mean you spend 72 hours in your favourite pyjamas.

Happy Christmas everyone.

Stress, illness and a tea party.

24 Jun

Been rather quiet of late as just too busy to find the time to write anything down. And frankly, I’ve also been too tired. I have a million ideas for blog posts in my head but I can’t find the impetus to unscramble them enough to make sense.

Anyway, we are heading towards the end of the academic year and I know that all my children are very grateful for this, and the holiday we’ve booked. M especially is having trouble coping with the changes to the school day that end of term inevitably brings, but with the exception of one major faux pas (and they have unreservedly apologised) school have been great at explaining changes in routine in plenty of time, and doing all they can to minimise the stress on her.

Unfortunately, I think one of those changes was instrumental in making M ill for three days afterwards. I can’t prove it, but I am going to start keeping a diary of when she is unwell and seeing if I can link it to a particularly stressful event immediately preceding it. She had a day at a much larger school, with the children from four local primaries (about 200 children) doing their version of the Commonwealth Games.  Her PSA was in charge of giving M breaks from the noise and generally looking after her, and from what I can tell she did a sterling job. M was fairly chipper when she came out of school and told me a lot of what had happened during the time at the other school. She mentioned that Mrs T had looked after her especially when it began to rain.

However, she was nervy and aggressive at tea time, and several times during Beavers (which was outside and therefore low sensory) she asked to go home, but we made it through the evening. She needed a very long bath to try and unwind, and it was only partially successful as she had a very restless night. The next morning her temperature was up and she was coughing non stop so I kept her at home. Sadly she wasn’t well enough to go to her Saturday dancing class or a birthday party she had really been looking forward to. Sunday was slightly better but I knew she still wasn’t right when her evening melatonin knocked her out in under fifteen minutes.

She’s been back in school this week and coping OK. The infant class has been working hard on an enterprise task and this afternoon we (parents and grandparents etc) were invited up to spend our cash. There was a nail bar, hand massages, a raffle, cakes and biscuits, and a couple of small games to try to win a prize, followed by tea and cakes in the canteen. They had made everything, right down to the table decorations:-


Straight after school we headed up to my friends as we were invited to play with her two kids. The sun was blazing and for two hours they expended vast amounts of energy on the trampoline and climbing trees. M is currently crashed out with the curtains closed watching a dvd. She will have a long deep bath and hopefully be calm, and sleep well. After tomorrow she will have only two further days of this school year to deal with and then she can relax. 

And so, hopefully, can I.

Bleurgh (The Poorly Post)

13 Jan

I might, if I’m feeling up to it, write about the events over Christmas and New Year  in a while, but today is about me.

I’ve had some slight dizzy spells on and off for a few days and brushed them off as not important as frankly I didn’t have time to be ill.

Yesterday however, I had trouble getting out of bed. Like, real trouble. The room would not stay still when I tried to sit up. Lucky for me I have a hubby who got the kids fed and dressed while I attempted to make the transition to sitting up enough to swallow a cup of tea.

I finally made it downstairs about 10.45 and did very little. I did supervise a wash load into the machine, and weakly look in the direction of the vegetables for the Sunday roast, but it was evident I wasn’t going to be doing much.

The day ambled along in a state of not-much-happening-let’s-keep-the-little-ones-amused until our late Sunday dinner about 3 o’clock. I was about halfway through when the vision in my left eye went very peculiar – I can only liken it to being like viewing through a kaleidoscope – and the dizziness increased. Had it not been for the dizziness I think I would have said it was like the aura I sometimes get before a migraine, but this time I had “extras”.

I decided to ignore it, but of course I’d reckoned without one husband and three vocal teenagers. My dinner went cold as I rang NHS 24 for some advice. I was fully expecting to be told to take 2 paracetamol and “man up” so I was staggered that the nurse sounded concerned enough for me to be asked to go along to the local out of hours service. Hubby put the eldest in charge and drove me away. By this point all I actually wanted to do was to go to bed – I was feeling very sleepy – but we arrived and were seen by a lovely doctor almost immediately.

No wonder I had been feeling cold all day, I had a temperature (a “low grade fever”), labyrinthitis and the beginnings of a migraine. So my “sparkles” were the aura. Turns out that the stress of the past two weeks has probably contributed to the migraine building and I needed to “go straight home and to bed”. I didn’t need telling twice. The doctor gave me some pills to help counteract the dizziness and mild nausea, and hubby drove me home. I took some paracetamol as I had the start of a headache and crashed out upstairs. I missed the afternoon, tea, and the whole bedtime routine for the little ones, and finally woke about 10 pm. My head seemed clear which was wonderful, so I staggered down for some tea and toast (invalid food of course) and went back to bed after a while on the sofa.

I didn’t expect to sleep at night but I must have been exhausted as I don’t remember much about it. I am wobbly this morning but I managed the school run, and have spent the morning doing very little. I think I need another of the horrible anti-dizziness pills now (horrid as they taste of artificial sweet stuff) and I might be press-ganging dd1 into making tea tonight.

As for the migraine that wasn’t – I have heard that some people can get the aura without succumbing to the headache part. If that what happened to me then I’ll gladly embrace it. Pretty sparkles are not nearly so scary if you know why they happen. In fact, if the gods see fit to send me any more, I’d like to put in a request for one without all the horrendous pain and 3 day hangover please! 

The Right Support

3 May

 M is in full time school. Let me say that again – FULL TIME!!! She has now managed 6 whole days in a row at school.

Yes, I am delighted. But it’s the 3rd of May in her second full year at school i.e only a few weeks before the end of term. So much time was wasted when she barely learned anything due to the high levels of anxiety she was suffering all the time. This was emotional, physical and sensory, every type of stress you can imagine.

She was out of school from the 9th November last year until January when finally we got the approval for full time 1 to 1 support. This was needed as M was considered a high risk for bolting and as the premises could not be secured in such a way to render this impossible, and all other schools in the locale had been inspected and rejected, this was the way forward.

By the time January came I was really worried that even with support it would be a case of too little too late. I reckoned without our very knowledgeable Occupational Therapist. Right from the start, even before M’s diagnosis with autism, she was on-board with constant help and suggestions to help M cope. Sadly, due to constraints on her time with children who were already diagnosed we weren’t able to get her into school until after the magic diagnosis, but when we did she basically (not quite single-handedly but enough for me to credit her hugely) re-wrote the entire timetable, taking no notice at all of M’s class timetable.

All credit to the teacher and the head – they were both fully involved and supportive, and I can’t fault either of them. M started back at school by coming in with me when we dropped her brother off and staying for just 5 minutes to say hello to the head in her office (nowhere near the classroom.) Over a few weeks we built this time up very slowly until she was staying for a whole hour – some of it in the hall or in a quiet corner – looking at a book, doing some sums or drawing a picture, anything to get her in the door and having a positive experience.

M has now been working with her new PSA (pupil support assistant) since the Easter Break, and has been even more engaged with her than the previous one, in fact I would say she has really “clicked” with this lady. She has managed to cope with the lunch time which was a worry for all of us, but as yet we haven’t found a solution to the canteen which M truly hates and this will be interesting if we can work out a solution she can cope with. She is currently allowed to pick another child who has a packed lunch and they can eat together in the classroom before going outside to play. It is much quieter that way, and far less stressful.

The afternoon session, which is an hour and quarter, was the last piece of the jigsaw with regards to the full school day and she started doing this last Friday. M likes Fridays as she has PE and Golden Time (free play to you and me) so we thought it would be a good place to start. As I said she has now completed a full week with no obvious meltdowns or inability to cope. It has all come together just in time for her next review meeting which is next week, at which I am expecting to discuss putting forward the request to continue 1 to 1 support for the next academic year. Hopefully there will be enough autism experts around the table (myself included) to explain that the support needs to continue in order that M continues to remain calm enough to learn. I do hope no-one will be silly enough to think that now she is calm that the job is “done” and the support is no longer needed, though I have heard of this happening to others so I am assuming nothing.

I should also mention the guidance and support of the local Autism Outreach worker, our autism support worker and the speech and language therapist who have all contributed to M’s growing ability to cope in mainstream school. But fundamentally, our OT rocks!

This is a happy M looking as she should at the end of every school week. Long may it continue.


Healthy on a Bootstrap

for every body, every mind and every budget - jack monroe

Cat Sebastian

writer of queer historical romance

Tal Bauer

Random musings from a Highland mother

Love Bytes Reviews

LGBTQ Romance Book Reviews

UK GLBTQ Fiction Meet

Read it, Write it, Love it

girlwithautismblog's Blog

The greatest WordPress.com site in all the land!

Brad Vance Author

bradvanceauthor@gmail.com / www.facebook.com/BradVance.10

Pyjamas and Prosecco

Mum, Wife, Master Juggler..

It Must Be Mum

A Site for Resources and Reflections That May Help Those Navigating Aspects of the World of 'Special Education Needs'

Lane Hayes

Out in Spring

Glass Walls

My FTM Journey

Shoestring Cottage - Frugal Living

shoestringjane@outlook.com. Find me on Twitter and Instagram: @shoestringjane


The random musings of a soldier, father, and husband

Mary's Ménages Reviews & Promos

♂♀♂ Another way to Review Erotic Ménage Romances...

The Never Normal

An extreme autism experience

Aspects of Aspergers

perspectives from the spectrum

The House of Elyot

Just another WordPress.com site