Tag Archives: meltdown

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.

The Balancing Act

8 Jun

M had her Highland Dancing exam yesterday. She was very outwardly calm about it, practising regularly and going to all her extra classes (once a week after school) and seeming quietly confident.

However, on Friday evening she had her melatonin at the usual time for a weekend which means that she should have been fast asleep by 8.30. Hah! I was out collecting something so I got home about 9. She was suddenly wide awake and downstairs “E forgot to brush my teeth.” Her big sister had indeed forgotten, so a quick brush later and she was tucked back up. 

The next hour and a half was hard work. I had a little Jack-in-the-box, not a sleepy daughter. Her final assault on my emotions was a pathetic wail that we hadn’t fed her any tea and her tummy was rumbling. (I would like to point out for any worried readers that of course we had fed her.) I sent her back downstairs for a jam sandwich and a drink, and called down to hubby to stick a second melatonin in the sandwich. We’ve been strongly resisting upping her dosage even though the paediatrician said we could, as usually she will settle. This time it was needed, and thankfully she finally dropped off about 10.45.

The next worry was would she wake in time. Being woken is a sure-fire way to turn her mood into cranky straight away, so it was with huge relief that she was awake and cheerful in plenty of time in the morning.

I deliberately didn’t get to the hall too much in advance. M has short hair so nothing needed to be done except for changing into her dancing outfit and having her photo taken (I do this every year). She was quite buzzed and hyper, whizzing around the room and chatting to everyone. I managed to calm her down by giving her my tablet to play some games on. And then she went through for the exam. 

This is my happy girl (on the surface) when she returned:

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We stuck rigidly to our usual post-dancing routine of snack at the cafe, wander around the charity shops and then a quick top-up shop in the supermarket before heading home.

B had had a lovely morning out in the garden helping L with her guinea pigs and bouncing on the trampoline. He was full of sunshine and good spirits. Unfortunately for him, he had also borrowed some of M’s dinosaurs to play with. She went nuts at him, really over the top, and hit him hard before I was able to intervene. I know she was exhausted from the late night and change in routine but violence to other people is a hard limit in our house, I comforted B while L raced upstairs for the weighted blanket. We parked M on the sofa in front of a dvd and told her firmly not to move unless she needed to pee.

Thankfully, it worked. the quiet time and the deep pressure from her blanket soothed all the upset away and gave her time to “restore factory settings” as I tend to think of it. I guess the nerves about the exam, the late night and the change in routine from lesson to exam was enough to tip her over the edge. Poor B was just the trigger for her explosion. I think if it hadn’t have been the dinosaurs it would have been something equally small – and maybe I would never have been able to avoid it. When she is older I am hoping she will know to take herself somewhere quiet for a while in order to decompress and manage her anxieties before they hit meltdown, but I am grateful that I was able to contain most of it and keep her and everyone else safe.

We ended the day in a much nicer way, M and B friends again. I took them to the local shop to choose an ice lolly then we headed to the park. They had a wonderful hour playing in both parks, and in one they met some friends who were delighted to see them. M spent most of her time on the swings – she adores the motion and I think they calm her. I can understand this as my place of refuge as a child was my swing in our garden. I could spend literally hours swinging. 

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The evening routine went without a hitch; cuddles and melatonin and being very tired from so much exercise was enough to send M to sleep before 8.30 and the “normal” was restored.

I do need to learn to pre-empt the meltdowns though – perhaps I should have had her blanket and dvd waiting for her. As a so-called “neuro-typical” myself it is very hard if not impossible to think ahead about what might be ahead that upsets M to the point she can’t handle her emotions. Every time she explodes it gives me an insight into how not to handle it next time. I know as she matured she will learn to self-regulate but until then I will keep on trying to keep the scales balanced.

 

 

 

 

 

 

 

 

 

Stumble, Stanley and the Difficult Day

25 May

This is Stumble:

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I had a feeling M was in an anxious mood when she insisted Stumble was accompanying her to school on Friday. The anxiety was due to the impending visit to the dentist later that morning. Obviously I had given M and her brother as much information as I could, but as I’ve never had “fissure sealants” and had only heard of them a few weeks before when the appointment had been made, my information was fairly scanty. All I could promise her is that it wouldn’t hurt – I did at least know that.So Stumble went to school. Luckily school are used to soft toys of all sorts going in for the day so I knew it wouldn’t be an issue.

The dentist is a new one to our practice and extremely young and good-looking. The teen girls think he’s gorgeous – personally I don’t think he looks old enough to be out of school but the entire practice seems to think he’s God’s gift to dentistry so I’m not going to argue. Yet.

I did double-check with the receptionist that Mr Dentist (as I shall call him) had remembered about M being autistic and she assured me he had. Good I thought – he will realise that she will be highly anxious. Er, no. First thing he did was try and over-rule my insistence on coming into the room with her – his argument being that children misbehave with their parents present. I won. M’s anxiety goes off the scale if presented with an unfamiliar situation and I’m not there. Anyway, Mr Dentist is evidently unused to having his authority challenged so he took the very mature route of totally blanking me from then on in. He even went as far as to turn his back on me.

However, back to M. She climbed into the chair and clutched Stumble tightly. The dental assistant was lovely and tried to engage some conversation about Stumble, which elicited one word replies. 

The whole procedure doesn’t take very long. Each of the four back teeth gets “filled in” and then sealed; the idea is to help prevent decay by smoothing out the deep grooves in said teeth. The teeth are done one at a time, and there is a chance to rinse out the mouth after each part of the procedure.

However, Mr Dentist has clearly not had any sort of autism training, as he said “I’m just going to pop this Hoover in your mouth now”. Of course, as soon as he’d said it, it was too late for me to say anything, so I just watched as Stumble nearly got squeezed into two separate pieces, followed a few moments later by M nearly dropping him (presumably in sheer relief) as the Hoover in her mind didn’t appear, and the small sucky machine (as I think of it) cleaned up in her mouth.

When all four teeth were done, M leapt out of the chair and out the door like lightning. I checked she had headed back to B in the waiting area and had a very brief word with Mr Dentist about how he needs to listen to parents like me and if she had a meltdown later in the day it wouldn’t impact on him but it most certainly would on her, and on me. 

I was too angry to list everything he did wrong, but I am going to take some advice from the NAS and make sure the practice is brought sharply up to date with some autism training.

Now where does Stumble come into all this? She turned out to be very useful. I headed back home  with the children to feed them some lunch before taking them back to school for the afternoon session. When I dropped them back off I mentioned to M’s 1 to 1 that the dentist was possibly quite fresh in her mind as she seemed troubled but wouldn’t speak about it.

Then I collected M just over an hour later and headed straight for town with E, M’s oldest sister, as E was heading back to uni for a few days before finishing for the summer. M was already upset about this departure as she adores E and is never fully settled when E is away (believe me this has made for a particularly challenging nine months!). We got halfway and pulled over at a supermarket for E to race in and choose some snacks for the train journey. At this point the dam burst. 

I had heard M chatting away to Stumble in the back seat but as it’s usual for her to natter away non stop a lot of the time I hadn’t given it undue consideration. But she started to sob, huge tears pouring down her cheeks. I pulled her into the front seats and asked what was wrong. “I can’t, I just can’t go any further. Make it stop, make it stop” Those are words guaranteed to wrench at anyone’s heart but what could I do? We had a fairly tight deadline to catch E’s train, and obviously I couldn’t just turn the car around. E came back and tried with me to get M to tell us something that we could use but she kept howling. In the end E rummaged in her backpack and came up with:

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This is Stanley Bear – named after the Uncle who gave him to E over 18 years ago. He is very, very special to her. He has been the confidant for all her woes, and probably all her joys too, and he sits quietly on the shelf in her uni bedroom as he is basically a bit frail for everyday cuddles, and after all she is almost 19. She doesn’t lend him out or loan him, and he doesn’t travel unless he is safely at the bottom of her bag. Hand luggage only.

She gave him to M! There and then, in the car, as a promise that she will be back on Wednesday. I raised an eyebrow at her to say “are you sure?” but I knew she was. My girl has a heart as big as a planet.

We managed the remainder of the journey with M curled up as much as a car seat will allow, wrapped in pink cat and small bear. I even persuaded her to leave Stanley bear locked in the car as we sprinted through the station to wave E off (SB doesn’t venture out as I’ve said). 

So, back to Stumble. I moved M’s car seat into the front for the journey home for a wee treat (slow down safely nerds – we don’t have airbags so there is no hidden danger of getting badly hurt in a bump) and Stumble started to tell me all about the dentist. M was translating obviously, I’m not delusional. Well no more than usual. Apparently Stumble didn’t like the lights at the dentists (no surprise there) and she did like the pink water for rinsing. But Stumble was “very frightened” when Mr Dentist said he was putting a Hoover in her mouth, she thought all her teeth were going to be sucked out. Stumble thought the dentist was a “very silly man” for frightening her like that, and not telling the truth, and wasn’t frightened the next and subsequent times he said it as it wasn’t a Hoover. I asked what Stumble thought of the taste and it wasn’t very nice but he (dentist) had said it wouldn’t last very long. (Which is better than he said to B when he said specifically two days!!) 

So, bless Stumble for being able to tell me what M couldn’t, And bless Stanley Bear for being there to remind M her sister will be back in a couple of days. And clever clever M for finding a way to tell me why she is hurting.

She still won’t talk about the dentist. But I think for now we can move on. Before her next check up in 6 months I shall ensure that someone has spoken to Mr Dentist very clearly about what he should and should not say to a person with autism. And we will move on.

Spoke Too Soon

7 Apr

M had her first full on meltdown for ages today.

I took four of the kids over to visit an osteopath today. We’ve all been before, M more than the others as I was never able to leave her when I’ve been in the past. The house is familiar and welcoming, and Tracey (the osteopath) is one of my favourite people ever. M settled happily with snacks and a DVD on her sister’s laptop. 

When we had been put back into good shape we popped into the town for some lunch. The younger two had eaten a packed lunch as I knew we would be late eating, but I got them both an extra wee something. 

I knew that after over an hour in the car each way plus all the waiting around that a good run about in the fresh air was essential so we headed to the park where enormous fun was derived from a zip wire that has been installed since our last visit. M was fearless on this, and then got a great workout on almost everything else before we got back into the car. 

Part way home I remembered we would be passing a particular shop and I decided to run in and pick something up rather than have to make a special trip out of my way at another time. I was literally a few moments but M didn’t want me to go without her. She started to cry. And then to shout loudly.

Maybe I should have taken her with me, maybe not. I wasn’t up against any deadline. But once she started demanding I thought she was having a tantrum so I left her with the others. Turned out to be a mistake. I returned to find three of them desperately trying to hold onto a distraught girl who was screaming fit to burst and smashing her head repeatedly on the car. I finally got her calm and we set off again.

The journey home was punctuated with a lot of echolalia, a sure sign of M setting her world to rights, but luckily her meltdown was forgotten by her at least. Sometimes she seems totally oblivious to the mayhem; at others she can be exhausted and withdrawn for hours.

So, what was the trigger? Stopping for the shop? I don’t think so. I hadn’t specified we would head straight for home and it’s not unusual for me to kill two birds with one stone this way. Being cooped up for too long? Again I don’t think so. And she had a huge sensory workout which usually makes her feel calm. Maybe she had a panic attack about me going out of her sight. I will probably never know. 

I’ll tell you this much – all her siblings now want a pair of ear defenders!

My Jekyll and Hyde girl

4 Feb

What a difference a day makes in the life of an autism parent. And her family.

Yesterday morning M decided that every single thing I or her brother said or did between half past seven and five to nine would be a cause for screaming, running away, more screaming, punching the table, wall, clothing, (luckily neither of us) and nothing whatsoever would calm her down. I deliberately didn’t rise to any of it – although this is so hard – and just stated the facts e.g breakfast is on the table, your clothes are in the pile over there, we need to leave now, the normal kind of things that make up a school morning routine. If she refused to eat I said “OK but you will be in school and you will be hungry, just remember your choice is to be hungry or to eat”. The same with the refusal to get dressed “You will be taken to school in pyjamas”. This time she decided she would accept non uniform clothes but I wasn’t in the mood to cut any deals, I know M too well; if I relent once she will use it for ever more.

The wee man was getting visibly distressed by her rage, and I kept telling him not to say anything but to keep to his routine and keep his distance. For an eight year old who thrives on lighting the touch paper of her anger he showed remarkable restraint.

Suddenly at five to nine M was hurriedly throwing on her school uniform and racing to grab her coat and bag for the quick drive up the hill. We had no choice but to drive; even if we had been earlier she was in no fit state to walk. She held it all together and walked into school without so much as a backward glance.

I felt traumatised to be honest.Totally exhausted and on the verge of tears. I managed to sit through an hour of the Parent Council meeting with my head buzzing from the echoes of M’s screams, and made my excuses asap at the end. When I got home the tears did fall. I really hadn’t done anything differently. M loves routine and I strive not to change anything on school days as I know her anxiety levels are already high. Maybe it was “just” because it was Monday. I felt like a total failure. Which logically I know I’m not, but you know how it feels when it all goes so horribly wrong.

Her school day appeared to have gone pretty well, and the afternoon proceeded into the evening without too much happening that worried me. I didn’t expect her to do any homework or even her reading book, it rarely happens on a Monday. I thought the worst was over when unfortunately the request to put her pyjamas on was the trigger for a huge meltdown. It took me, hubby and dd2 to keep hold of her physically in order to a) keep her safe and b) carefully remove her clothes and re dress her. I expect some people are wondering why we didn’t wait until the meltdown was over, but we have learned the hard way that that will just prolong the agony. When she was all finished and safe to let go all she needed was cuddles but she gets so over stimulated she has terrible trouble “coming down”. Hubby got wee man to bed and I took M onto the sofa. Experience has taught us that she won’t sleep, even with melatonin, after a meltdown at night unless she is next to me, her obsession. Her anxiety prevents it. She has stated in the past that no-one loves her except me, and I don’t know why she thinks this but at least it meant she might relax with me next to her. She put her head on my lap and I pulled her weighted blanket over her. She pulled the hood of her dressing gown up to shield her eyes (she seems to become hyper sensitive to all stimuli) and finally gave in to the melatonin.

The only good news about a mega meltdown is it does appear to exhaust her so she really sleeps. This morning I had a bright-eyed wee girl in the bed for a morning cuddle, and then with some trepidation we went downstairs. And this is where I wish we had cameras filming our lives. Nothing happened this morning that didn’t happen yesterday. The same breakfast, same crockery, same lack of radio, same (almost) pile of clothes, etc etc. And yet……………

I won’t be silly enough to say M was a ray of sunshine delighted to be starting a new school day, Far from it. She doesn’t like leaving me, ever. BUT she went through her routine and we ended up at school in plenty of time before the bell rang, with no obvious signs of distress. She even knew about a change of plan as her PSA was expected to be a few minutes late, but she was fine with that.

And this afternoon the good mood continued. I had walked up to collect her in the sunshine and we enjoyed a stroll back home in really gorgeous sunshine. I managed to negotiate her reading her book by saying that she could have the computer time she wanted if it was completed, and she also left the computer without complaint to stuff down a big tea. She blipped every so slightly when she wanted a bath and got a shower, but she recovered from that quickly. She even coped brilliantly with a (fortunately) short power cut 20 minutes before bed.

So, who knows what tomorrow will bring? I have given up trying to second-guess my little one. There must have been something pretty awful going on in her head yesterday. Will I ever find out? I don’t know. I’d like to think that one day she will be able to explain when the demons are crowding in, so that I can try and help banish them before they take over, but until then every day is a waiting game to see which personality I get to see.

Showers and more Showers

4 Sep

Some of you might remember the horrendous occasion at the swimming pool a few weeks ago when poor M had the mother of all meltdowns.

https://justgoodenoughmum.wordpress.com/2013/07/18/a-sensory-lesson/

Anyway, as swimming lessons were re-starting this week at school, and the pool the meltdown occurred in is the pool the children learn in, I thought I would take a trip over and see what, if anything, they could do.

The young lad at the reception desk looked familiar but I wasn’t entirely sure if he had been on duty “that” day. I explained that we appear to have worked out that M’s main issue with showers is the temperature and that as the council won’t turn the thermostat down enough (and to be fair “enough” would probably result in blue skin for 95% of people) we had a bit of a problem. I said I had been told there was a single shower somewhere in the building with a controllable thermostat and was this true?

He looked a bit stunned and then said there was a disabled changing room with shower attached to the pool area.

And so there is! I checked out the shower and it turns down to cool, very cool, and there is lots of room for M and her support assistant, and wow. The young man made a note of M’s details so whoever was on duty would know she had a valid reason for using this room, and then said “Wish we’d have thought of this the other day”. Hmmm. yes well me too but hindsight is a wonderful thing. Better late than never etc etc.

When picking M up after school I made sure to let both her teacher and support assistant know the score, and that if the water felt cold enough to be really not very nice then it would be about perfect for M.

And now comes the weird bit. Wee Man needed a shower – he had been running about all day and was a bit sweaty and yukky. So, he jumped in our brand new shower. M asked for a shower. Yes, you read that right, my shower-phobic girl asked for one. Obviously I got her in that bath quick as lightning. I have worked out that if I keep the shower head really near to her skin it doesn’t irritate her so much.  The pitter patter of it held further away sets her teeth on edge and she says it “tickles” but I can see from her expression it’s not a pleasant sensation.

Then she had her shower after swimming the next day.

Then she had a proper shower after school with shampoo etc.

Then tonight, and bear in mind the first shower was Monday afternoon and this was now Wednesday evening, she requested another shower.

What the heck has happened to my girl? Four showers in 48 hours? My head spins just thinking about it.  It has been quite warm and I wonder if a shower makes her feel better than a bath afterwards – baths make me feel unnaturally warm and seeing as M is always warm it might be that the rewards outweigh the discomfort of the water trickling over her body.

Guess who will be ringing all the local swimming pools to check for disabled shower facilities?

A Sensory Lesson

18 Jul

Life at the seaside has been chuntering on quietly for a few days – we are well into week 3 of the school holidays and the frantic pace of weeks 1 and 2 has been replaced by a sense of relaxed enjoyment.

Until I c o c k e d it up today 😦

I checked the times on-line and then asked the children if they fancied going swimming this afternoon. A resounding yes. As a wee extra treat I took the 4 that were at home (dd2 is away for 48 hours with friends) out to lunch at a local cafe. All went well. Really well in fact – no arguments or silliness, which was lovely.

We returned home for a while then set off for the pool.  There is a more local one but it’s housed in the same school that ds1 had such a nightmare time at and he’s not overly keen (putting it mildly) to be returning there any time soon, and the further pool is bigger and has more facilities.

B can pretty much swim by himself now, although he lacks confidence to swim on his back, so his big brother and I took turns coaxing him to practice, and keeping an eye on M, who can almost swim but needs someone there all the time. Twice during the hour the lifeguards open up the water chute and the little ones took turns to queue for the plummet down the slide. R and I took turns to look out for them and the other one of us got some “proper” swimming in. It was during my swim time that I had a realisation. I had left “The Jug” at home.

This is a photo of The Jug:-

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Actually that’s not our one but it could be. It lives in the bathroom as M cannot bear water dripped onto her head i.e. like from a shower. So, if she needs her hair washed, or if we go to the swimming pool, we use the jug. At the pool I fill the jug from the shower and wash her that way. She can cope with the feeling of water pouring onto her head (not that she’s keen but she can cope) but according to R who used to be the same, the feeling of a shower, or indeed rain, felt like millions of needles attacking him all at once.

So you can tell my enthusiasm for the outing suddenly waned at this realisation. If M wasn’t annoyingly sensitive to chlorine and would have been able to tolerate the quick shopping trip and the 20 mile journey home without breaking out in a rash and clawing herself half crazy I would simply have dried her, but she really cannot wait that long after a swim. Even if we had skipped the shopping trip and just bought everyone a drink – they insist after a swim – it would still have been too long.

When the hour was up I told her that I had forgotten The Jug, and she was nice enough to say she hadn’t remembered either, which I thought was very sweet. Then it all went a bit wrong. I did tell her I would be as quick as I could, and I know she believed me before I stuck her under the water, and I did stand under there too shielding her from the full blast, but the second hot water hit her head she lost the plot. What can I say? She is only just 7 but wearing age 9-10 clothes, so she’s tall, and when in meltdown she has the strength of a full grown tiger with a grudge. Luckily I am built like a shed (not entirely true) and have the tenacity of a whole roomful of tenacious people, so I did just manage to hold onto her, but a child in full meltdown covered in shampoo makes an impressively slippery target to cling to. I felt absolutely awful. The second she was rinsed enough I bound her very tightly in 2 large towels and just held her. She did calm down, and enough for me to have a shower myself, but she was rather subdued for about half an hour. She couldn’t even make a choice between the drink she thought she wanted and an ice lolly which I figured might be a nice wee treat. I think by that time she needed a choice made for her.

So, lesson learnt. Whatever else I forget, do not ever forget The Jug. 

Just as a footnote – M was sufficiently recovered tonight to ask to try all the different kinds of lettuce in the bag of salad I had grabbed as part of our tea. As I had assumed she wouldn’t be eating anything green, to say I was astonished is an understatement. Neither has she made any mention of the shower from hell since it was over, so I am hoping I am forgiven. Be a bit longer before I forgive myself!

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