Tag Archives: sensory

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.

 

Making Sensory Boxes

14 Jun

I am heartily sick of not being able to drive the ten miles to the local town without Small Boy and Small Girl arguing and fighting. They take any chance to needle each other and even to hit and slap. Frankly I’ve had enough of it, and I’m sure they have too. I don’t know why they can’t get along, but I remembered that when the teens were small they each had a cuddly toy that was only for car journeys. They would hug them and chat to them and play, and mostly things weren’t too bad. Armed with this thought I let it wander for a while and came up with an idea.

I had to drop Teen Girl at the bus station and Husband at the airport yesterday so I spent half an hour at the pound shop in town before making my way home. I bought this lot:-

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Then I popped into the supermarket for a couple of smallish strong boxes. Today I sorted out the piles into a set for B and a set for M:-

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Actually, I confess that the orange and blue rubbery stick men came from the autism conference I went to this week. But all the rest was from the pound shop. I chose a variety of toys that can be played with imaginatively, cuddled, stroked, or squeezed, and for a first attempt I don’t think I did too badly. I am planning to add to the boxes with some off-cuts of fleece fabric (they both adore the feel of fleece) and maybe something from Chewigem that is designed for putting in their mouths as M especially is very orally fixated, but they were delighted when they saw what I was up to. They both understand that these boxes are not for sharing (the idea is to keep them apart in the car) and that the boxes will not be used indoors.

The round balls aren’t easy to see in the photos above, but they are my favourite toy so far. Small Boy was very excited when I showed him what they do, and he has promised to try and use it instead of scrunching up his hands when he feels angry or frustrated. Here’s how they work:-

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I must admit, I’m a bit annoyed I didn’t pick one up for myself for when I’m stuck in traffic jams, or on the telephone to someone who is trying my patience, but I guess I can always sneak a shot of one of theirs.

So, here are the boxes so far:-

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Tomorrow afternoon the children and I are off to the autism centre’s summer picnic, a journey of over an hour on a day that will already have included Sports Day, so they could well be hot, tired and grumpy. I’m hoping the contents of these boxes will work a little magic and they will travel calmly. I’ll let you know.

NB For the purposes of my sanity when driving, I haven’t included any toys that squeak, chime or clunk, but if you are making a sensory box for home, depending on the age of your child(ren) I think adding noisy toys would be a great idea. And apologies for the poor quality of the pictures but it was quicker to take snaps on my phone than to faff about with my camera.

A Flight or Fight Kind of Day

16 Nov

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DS1 (darling son no 1) has had a challenging week, and therefore so have I as I seem to measure my emotional temperature by those of my offspring.

If you met R on a good day you would probably be amazed at his diagnosis of Aspergers -“but he’s so friendly” “what a lovely young man” “you must be so proud” are phrases I hear quite often, and yes, these are all true. He is friendly and polite, and kind, and intelligent and thoughtful and a wonderful sibling to his brother and sisters.

However, he is and always will be autistic. And that is something that can sneak up and overwhelm him in a flash, with no warning, or with so little as to make no difference. What people who meet him (even those that think they know him well) don’t realise is that the reason he is so able to cope most of the time is the hard work that has gone on behind the scenes.

R goes to a very small private school 150 miles away from the family home. He leaves every Sunday afternoon at 4 pm and doesn’t return until Hubby picks him up from the central railway station at 5 pm the following Friday. I resent every second he is away, his siblings miss him, and he misses us. And yet it is the best and frankly only option for his education, as there is nothing suitable in the area. Not one school that has the right sensory environment for his often debilitating sensory issues. It isn’t a perfect fit but then what school is? His other great love and what R himself calls his “saving” is his love for all things Scouting. His Scout leaders are two of the most wonderful people I know, with a proven track record of working with, not against additional needs and a “can do” attitude that puts most SENCOs to shame. Their encouragement and support, along with ours, has enabled R to be chosen to represent his country at the next International World Scout Jamboree in Japan of all places – a challenge for most western youngsters, let alone one who struggles with everything from food to weather. And I have no doubt that R will cope, succeed and enjoy.

So, he’s doing all this and his life is going pretty well for a teenager with autism – he has a social life (of sorts) and he is doing well at school. So what does the council do when they are presented with such a glowing example of their spending? Yup, you guessed it, they try to stop him just as he is reaching his true academic and social potential, that’s what!

Our lovely social worker informed me that there was a massive cut in council spending coming and that even with no new schooling provision having been built or identified, we were being put in the unenviable position of having to justify R’s continued placement at his out of area school. Even though there is nowhere else we still have to do this. What a criminal waste of time and resources in a council already stretched to capacity and beyond.

So, social work and I have found time in our busy schedules to visit all the main secondary schools in the area and meet the staff, talk to them about their additional needs provision and tour the schools. There are five of them, and the nearest had already been excluded as that is where R lasted 4 days before having a breakdown back in 2009 in the first year. We skipped that one!

One was so unsuitable that we didn’t even bother with much of a tour – as soon as the deputy head informed us that they didn’t even have any space for a dedicated support base, let alone any small rooms where a pupil could have some quiet down time, we both agreed to strike it off the list. Two more were discounted for lack of resources or lack of ability to tailor the small classes that R would require for learning without succumbing to overwhelming sensory distress.

Which left one school, about twenty miles away. An OK commute if necessary. The deputy head teacher was welcoming and cheerful, and very positive. She also listened intently as we described the kind of set up that R would require. Unlike all the other schools, her attitude was one of “how can we achieve this for your son?” and I got the feeling that she would fight for the resources to enable his education. A tour of the school was punctuated with her pointing out possible pitfalls that could be an issue, for instance the patterning of the flooring in one area, the stairs being an open design (seriously is there anyone who thinks open stairs are cool?) and the incessant loud electrical humming from the server room.

I liked this woman, she knew her stuff. The social worker and I both agreed that it was still very unlikely R would cope here, both from the sensory and the social points of view, but nevertheless we both felt that he needed to see it if possible, just on the off chance that it might be a good fit, or at least do-able with support and maybe day release to college.

By good luck R’s school had an in-service day that Highland schools didn’t and so this Friday I took him to see the school. He looked absolutely awful; no sleep since the precious Sunday due to extreme anxiety will render even the most handsome sixteen year old to a zombie state, and he sat in the car park telling him that he hated both me and the social worker for arranging this. He was tense, and snappy and seriously uptight, and I felt like the worst parent ever.

Once inside and reeling from the double bell to signify the end of the lunch period we hastened to the deputy head’s room where she was again kind and welcoming, and didn’t take one iota of offence at the fact R had been struck dumb and didn’t rely or even look at her. We took the same tour of the school she had done previously, and R tagged behind, his entire 6’3″ frame poised in fight or flight mode. He wouldn’t go into any of the classrooms but peeked from the door, and he still didn’t speak. We managed about half the tour when he said in strangled tones ‘I’m done.’ He was on the balls of his feet and staring at the door. I handed him the car keys and he fled at top speed. Luckily I knew I could trust him to go straight to the car and wait for me.

I wrapped things up very quickly and the head said she was very impressed at how well R had coped – she could see how desperately unhappy he was from the second they met. I thanked her again for her time, and we left. R managed to spit out the following words and since then will not be drawn on the subject:
‘the lights, the crowds, too many people, low ceilings, claustrophobic, the heat, noises, kill myself’

I think that speaks for itself as to just how bad that was for him.

I have spoken to the social worker and she has had a meeting with the education psychologist. Thankfully, everyone is of the same opinion, namely that R should remain at his current school as a) it suits him so well and b) there is no viable alternative. A formal report recommending this will go to management. If anyone is foolish enough to throw out the recommendation they will speedily find a summons to a tribunal on their desk, but let us hope that common sense prevails.

But it still begs the question as to how the system can be so flawed that the only way to beat it is to place our most vulnerable in the firing line and watch them fall apart in order to prove the services they access are not only preferable but essential? How sick is that? It would be like taking a wheelchair away from someone with no control over their legs and asking them to climb a flight of stairs in order to prove they needed the chair.

My son doesn’t want to be different – he just is. And he needs that support to allow him to accept and embrace his difference, and to rock the world on his terms. And I will be there, helping him to help himself. For as long as it takes.

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.

Pleasantly surprised

31 Jan

This week has not been great. Yesterday was particularly bad, with M having a massive rage (over a simple request to put on her socks) before school which meant once again we were late. The knock on effect of being substantially late can mean that the gym hall is in use and therefore M can not do her early PE that includes deep pressure activities to help her calm and focus. This  can set a negative spin on the whole day.

With the promise of unrestricted TV and a cop-out tea of fish fingers and smiley face potato shapes I coaxed her into the evening and her Beavers group. I stay as her helper, and mostly I do really enjoy it, and last night apart from some extra curricular running about and requests for big squeezes she did very well indeed. She often needs some big hugs to offset the sensory demands of 20 small loud children in a confined space – I understand this bit very well!

Back home I took a chance that less sleep would be countermanded by a cool down time in the form of a quick bath and I think it was the right option as she went to bed still without meltdown or even tantrum.

The middle of the night she came into bed with me and there was nothing I could do to make her move back out again. I gave up and dozed fitfully.

Now this is where I was pleasantly surprised.My regular 7.30 alarm didn’t go off (or if it did I have no recollection of turning it off). The first I knew of anything was my back-up alarm of 8 am, which leaves plenty of time. However, dd2 (L) was fast asleep in bed and the school bus for the academy leaves at 8.10. This is do-able in an emergency but L had an exam this morning and i did not want her rushing out the door like a banshee without a proper hot drink and something to eat. So, I told her to relax and do her thing while I got the other two ready. 

I got clothes for M and asked her nicely to please get dressed as we need to take L into town. 

She did what I asked with no problem at all.

Then I explained that they would have to have their Friday treat of chocolate spread on toast as a chocolate sandwich and eat it in the car, along with a packet of juice.

Again no problem “ok Mumma”

Suffice to say I got L to school in time for her exam and then turned the car swiftly round to head back to the village. By this time, I was fairly sure something would kick off in the day. After all, just turning the wrong way out of the house can cause a meltdown of epic proportions most days.

We got to school with about a minute to spare before the bell and they both hopped out and raced into the playground. I felt it only kind to forewarn the staff of the unexpected start to our day in case it caused problems for them. 

And I left.

End of the school day – no problems reported and a happy body slam from my girl at 2.30.

Afternoon passed without any raised voices or tantrums.

Then hubby’s train got firstly turned around then cancelled which meant that instead of him bringing ds1 home with him and collecting dd2 to take them to Scouts, that I would take L in and meet him there as otherwise they would both be very late. Another change – “kids, in the car, we’re taking your sister to Scouts. If you like you can have chips” (I am always open to using a bribe in an emergency)

“But it’s pizza night” “Yes I know, I can buy you a pizza instead then” 

“No, I think I’d quite like chips actually”

And now it’s quiet. Chips were consumed along with some healthier extras when we got back home, shower done, cuddles and a story and now she is in bed.

I am sitting with a cup of tea thinking how amazing it is that one day the tiniest weeniest thing imaginable can set off a day of untold misery for M, but yet the next day I literally heap her day with unplanned change and she can take it in her stride.

That’s autism for you.

Really listening

30 May

I always like to think I listen to my children, but sometimes I know I am distracted, or busy, or just (if I’m honest) not in the mood. But I do try hard to listen, and so this afternoon when M came and snuggled up on my lap for a cuddle and told me she didn’t want to go to Beavers I was surprised (she adores Beavers) but I listened and I questioned her.

She had some “excuses” Drama made me tired. It was really good though. I had a great day. I think I’m tired. Can we go down the beach?

Today has been a wonderful day weather-wise and we had seen some village children headed down to the beach. If I hadn’t been listening to M properly I might have thought “oh well she just fancies running about the beach instead of an early tea and off in the car  to build a den in the woods” but I was paying proper attention. By that, I mean not just hearing her words but everything M was doing. She had come to me, and curled up on top of me, which is what she does when she is nearing her limit of “enough”. She also told me she was tired, twice. M doesn’t get tired, well not that we or she ever notices, and she needs melatonin nightly to switch off. I mean, I know she is only wee and her body must get tired but she was telling me something wasn’t “right”. 

So, I listened. We had a lovely cuddle and I texted the Beaver leader to tell him we weren’t coming. I did a couple of important chores and then took M and B down the beach. By the time we got there it was almost deserted, which was ideal. No other children to make socialising a necessity, and don’t get me wrong, M loves to chat with her friends, but today I don’t think she would have coped.

We paddled, we dug, we wondered about the tiny sea creatures B found in the moat he filled from the sea, and M ran back and forth from bucket to dry sand to rock to water unhampered and happy for over an hour. Over and over again she filled the bucket with powdery dry sand, then ran up and down filling it in stages with dribbles of sea water, then mixing it with her hands and moulding it, before tipping it all out and starting again. In between times she would run like a sprinter down the sand and straight into the sea, each time splashing her shorts higher than the time before. Cold water has always been a sensory tool for M. She got filthy, and soaking wet, and it was exactly what she needed. I am so glad I took the time to really listen.Image

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