Tag Archives: mental health

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.

bikes

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

 

Mental Health and Making Choices

5 Mar

Today M had a CAMHS appointment. CAMHS for anyone who doesn’t know, stands for Children and Adolescents Mental Health Services. There is a lot of debate about how much use a lot of the professionals involved in this service are, especially to young people with autism, but so far we’ve been rather lucky.

M suffers very badly with anxiety which colours most of her days, and often intrudes on her sleep too. The mental health worker at CAMHS is working with M through play, to try and unpick the worst triggers for this anxiety, and then to help M recognise and deal with it. As you can imagine it’s not a fast process. Even worse is that poor M gets anxious about the appointments and then has trouble winding down afterwards, which I’ve learned to my cost can be problematic when I’m racing back to collect her brother from school.

However, today was also the morning for my once a month visit to the city’s autism centre where they have what they call the Drop In, two hours of meeting up with parents in the same situation, coffee and biscuits, and more often than not a guest speaker. I’ve met some wonderful people there and I really need those two hours.

I can’t physically get from the autism centre to collect M and then to her appointment so I braced myself to tell the school that I would be removing her for the entire day in order for me to have my allotted time to decompress and relax with my friends. M is welcome there – all children are – and it’s quiet and secure (always good to know with a runner). School were on my side and had no issue with this arrangement. How forward thinking is that? An establishment that realises and acknowledges that if the parent falls apart from lack of support that the family will suffer. It’s rare I can tell you.

So, M was delighted at her day off school until I insisted she take a bag of things to occupy her. She resisted, I insisted again. I won. She plugged herself into her ear defenders and sulked for most of the journey.

We arrived, she found a table in the far corner of the room, collected a biscuit, raided the play room area for pencils and paper and settled down. Her bag of toys was emptied and lined up, and she was absolutely beautifully behaved for the whole two hours. There was plenty of space for her to spin, and boy did she spin a lot today, but the great part is no-one there bats an eyelid, it’s just a regular occurrence to see stims of this kind, and M knows it’s an autism centre, so she can be herself. She even made a new friend:-

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Contrast this happy picture with her poor little face forty minutes later while she was waiting for the CAMHS appointment – the anxiety was really building by this point:-

 

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When she’s in the room she generally participates but if there are questions she can’t or won’t answer she makes like she’s deaf. It’s amazing just how she can ignore a question so well; I sit there squirming and she has no guilt whatsoever.

After this session I took her to a garden centre which has a superb cafe and treated her to an ice cream followed by a run about outside where there is a huge slide and a swing. She spent half an hour regulating her system by swinging and then was happy to sit in the car on the journey home. I didn’t even try to suggest homework as I felt it might be a flash-point, so she got to watch some TV and then had a shot on the computer; all the treats tonight.

I was lucky not to have to rush home today as someone else could pick up the wee man, and having the school validate my decision to take the whole day was something I really appreciate. It wasn’t an easy decision, choosing to reduce M’s school time even further, but I think I did the right thing for both of us. And if another CAMHS appointment falls on the same day as the Drop In, I will do it again.

Nearly lost it

4 Apr

I should have written this yesterday but due to no internet access (cheers BT) I couldn’t. Although to be honest it is probably better done with the benefit of 24 hours.

There was nothing particularly strange about yesterday. I had to ring the vets in the afternoon to talk about possible further treatment for our sick guinea pig and in the evening I was due to go to our wee local singing group with a friend, and my eldest. To do that I would have to forgo my monthly meeting of additional needs parents and carers but I had informed a friend so that was taken care of.

All that remained was making sure the kids were fed and entertained and some house keeping chores, nothing likely to tax me over much in the school holidays.

So what went wrong? I have no idea.I must admit the lack of internet was very frustrating, mostly because I kept wanting to refer to it for small things like phone numbers, or a recipe, and I started to realise how much I rely on it. I spent far too long on the telephone trying to get some connection restored but it was frustrating, not really stressful. The kids were no more and no less challenging than any other day and thinking back on it possibly even slightly more accommodating than normal. The weather was fine – cold and sunny – and R (eldest boy) took the wee ones outside to play for ages.

But by the middle of the afternoon I was feeling weird, like I had something bubbling up inside me. I was jittery as though I’d drunk a dozen strong coffees. I was buzzing somewhat from lack of sleep but it felt so much more than that. I did wonder briefly if it was hormones but that thought got lost in the mounting panic that followed. In the space of about 2 hours I had started seeing really bleak scenarios in my head and I was beginning to think I was in danger of losing all rational thought. Part of me wanted to scream and smash the house up, and then hit my head again and again, the other part wanted to hide under the bedclothes. With the help of some amazing people on twitter I just about held it together until hubby got home and then I bolted.

During my “meltdown” (which wasn’t – it just felt I imagine like my wee M feels so often) I had been fobbed off again by BT, been told that the choir practice was off, bunged tea in the oven for the kids and done some washing-up, so not the stuff of nightmares but something about the day had nearly tipped me right over the edge. Hubby had expected me to be going to choir so he knew I was leaving and was very supportive when I almost ran straight out the door the second he came in. I’m not sure if I even told him choir was cancelled but possibly rather stupidly I got into the car. Only after I’d gone 5 miles I realised I could in fact now go to the monthly meeting so carried on heading into town. The meeting was what I needed, it gave me a focus other than myself, and even more usefully from my viewpoint we had a new person join so time was spent welcoming her and making her feel at home.

By the time I drove home I was a lot calmer and no longer full of the bubbling lava of terror that had threatened to engulf me earlier. It did take me several hours to unwind enough to even turn off the bedside lamp but eventually I slept. Not well but I did sleep.

And I woke this morning without that dark cold patch of nasty inside. It scared me you see – I have been in that place before and I really have no wish to return. I had a breakdown about 2 years ago, and there is no easy way to say that apart from straight out. I didn’t know at the time just how bad I was, but what scared me so much yesterday is that M, who is 6 and has autism, came to sit on my lap at one point and said “are you going to start crying again all the time Mummy?” I told her, no, Mummy was a bit tired and sad, but truthfully I thought I would never stop.

Today I had no expectations of how I would feel, but luckily yesterday appears to have been a vicious blip and no more. I have felt a bit tired but I didn’t sleep well so that’s no surprise. I have been cheerful (not manic) with the children and I have achieved a lot in a few hours. However the niggling question in the back of my mind is still “what will tomorrow be like?”

I can’t quite believe I am openly writing about mental health, or more to the point, my mental health, but someone has to if the stigma that surrounds mental health is ever to be lifted. I would have no embarrassment if I broke a limb or had a sudden hearing loss so why should this be any different? If I speak out maybe others will realise it’s OK.

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