Tag Archives: change

Surviving the Holidays

25 Jul

I wish I could write enjoying the holidays, but that wouldn’t be entirely accurate.

We managed a fortnight away in the New Forest, at the place we usually stay, and I had erroneously thought this would be two weeks of calm relaxation and joyful days out. Sadly, there were numerous meltdowns and episodes of crying to go home, as both the younger ones struggled with the change to a new environment.

Thankfully, ponies came to the rescue. We stay on a working horse “farm” for want of a better word, and the yard is always busy, either with the the owners tacking up a pony for a Hackney carriage-driving lesson, or someone who keeps their ponies there coming to muck out and feed their charges. All the offspring love horses and the place is safe enough to allow them to wander off. If Small Girl went missing, she was always found either petting the nose of someone stabled, or hanging over a fence enticing a reluctant pony to advance with the offer of a piece of carrot.

One owner, Jeannie, who we’ve known for years, was grateful to have extra pairs of hands to cart bales of hay and help sweep up, and we really developed a friendship this summer. I hadn’t deemed it necessary to book a hack in advance for the kids, but it turned out that due to high demand, there was no way the younger two could get to ride, as they need to be led. They were very down about this until Jeannie offered a solution.

And so we became owners for a day! Teddy the Shetland arrived in a horse box and was unloaded into a paddock. The children were thrilled. After he’d had a quick chomp of grass they (with the help of responsible Teen Girl) led him to the yard for a thorough grooming, before he was led back to the paddock where they took turns riding him.

A lead rein and bareback is very different from a saddle and all the “proper” tack, and like this, the roles of the two kids were reversed. SB who generally has a good seat and seems confident in the saddle struggled to remain upright and seated, whereas SG who sometimes resembles the proverbial sack of potatoes on horseback seemed to find the challenge of bareback riding one she was more than equal to, and rode like she was born to it.

Teddy stayed with us all day, and was collected by Jeannie that evening, brushed till he shone, and having trotted for what seemed like miles up and down the paddock, but was probably in reality no more than several hundred yards. The kids didn’t miraculously turn into the calmest people on the planet, but their pony day went a long way to reassuring them that not everything had changed.

And after all the meltdowns? The day we packed the car to come home, SB looked around the empty apartment with a sad face and declared, “I hope we can come back next year.”

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We’ve Kind of Been Here Before

3 Jun

Since I last updated here, it’s all gone a bit wrong (again).

Small Boy has been out of school since two days after the start of the summer term. It was almost impossible to get him back to school after Easter, but the crunch came when I had Small Girl at a Camhs appointment and I spent 3/4 of it talking about SB. I had the light-bulb moment where I thought we’re damaging him, leaving him every day somewhere we have to drag him to screaming. The screaming is communication; all he can say is help me, and we’re not listening. We need to change this.

I drove SG back to school for the afternoon session and he appeared at the staff room door while I was letting SG’s PSA know she was back on the premises. He had seen my car, and that I hadn’t driven straight off. He didn’t speak, just looked straight at me with tears shining in his eyes and wrapped his arms around my waist. I told him to collect all his belongings and to wait for me by his coat peg. Then I told the staff that the only sensible and kind thing I could do was to remove him until further notice. I assured them it was nothing they had done wrong (it really wasn’t) but it was hurting him, and my job was to protect him.

The relief on his wee face was a wake up call if ever I needed one. I sent a text to Hubby to inform him of what I’d done, and not to be surprised if he called and heard SB in the background. And then we waited.

The first two weeks were the worst. Somehow I’d got it into my head that away from the hyper-stimulating environment (or whatever) of school that he would quickly bounce back and “be himself.” That didn’t happen. He was rude, angry, aggressive, even violent, and my heart sank as I wondered if I had somehow made a bad situation worse.

But I hadn’t, and my instincts were right. One day I got a smile, a genuine one. Then he asked a question – about the platypus as it happens – and we spent half an hour on Google, learning everything we could about the strange and frankly terrifying critters, and now, several weeks on, I can almost say I have my boy back.

He’s still angry, and frustrated, and horribly panicked about any kind of change to his routine, but the absolute terror has mostly gone from his eyes. School are continuing to be wonderful in their support, and there is a team dedicated to trying to “fix” what went wrong. The only problem is that without the input of specialist services that deal with mental health issues, specifically those of young autistic people, we might not get much further. And guess which service we are still waiting on? Yes, you know it.

Without knowing just what he can’t cope with, there is no way we are prepared to attempt to put him back into full time schooling, just to see the very same thing happen all over again. The stumbling block is that being only just 11, he has no idea what his triggers are. Having Teen Boy around is helpful, as we can take a stab at the worst of the probables, but they are not definite. TB has told us it was several years later that he finally managed to start filtering out the worst of his sensory issues, so it might be that part of what we have to do is wait until SB can do the same. Which doesn’t help much with school, but I refuse to rush him. He is autistic, and I will not shove him into a mainstream neurotypical pond and demand he swims like the NT fish because he can’t. And why should he? If he were blind, or in a wheelchair, the system would know it had to adapt for him. But because you can’t look at an autistic person and see the autism, for some reason it’s acceptable (well it’s really not but other people think it is) to squash and squeeze and push them until they are stuffed into the same round holes as everyone else, no matter that they are perfectly content to be square pegs.

Well, this mumma says no! My square pegs require square holes, and if it takes yet another fight, bring it!

In the mean time, SB is coping with one hour of practical science once a week, one to one with a PSA, and for some reason, 90 mins of PE too. Rather him than me *shudders*.

For another time, I’ll write about our tentative journey into home education.

 

The Good and the Bad

16 Jan

It’s been a tough few months in the Justgoodenough household, and – frankly speaking – nothing seemed to be good enough.

Both the young ones suffered very badly from the combined effects of a new (thankfully permanent) class teacher and the organised chaos that is the term leading up to the Christmas holidays.

Even with the school routine checked out on the daily visual chart, and any changes discussed, with loads of reassurance from me and their dad, Small Boy and Small Girl were both anxious, cranky and sometimes downright out of control, both before and after school.

Small Boy in particular had several (and I don’t want to think back and count them up as the total would be really depressing!) occasions when I had to act tough and physically dress him and then half drag him into school. We work to always give them a choice in as much as we can, so they both of them feel they have an element of control in their lives, which to be fair, are mostly managed by adults, and rightly so as they are children. Examples are allowing them to choose between toast and bagels, hot and cold cereals, jeans or joggers. Not exciting stuff, but then when you are dealing with a child who point blank refuses to see anything good in the entire school week with the exception of the end of class bell on a Friday afternoon, there isn’t much to work with.

Still, I did as much as I could, and knowing Small Boy and his indefatigable logic, I knew I had to get him into school every day, as if I had wavered just once, and he’d not been actually unwell, he wouldn’t have gone back in again. The worst day was the Monday before Christmas, when I had to call the school and get the head teacher involved. Small Boy was barely dressed, had refused to eat or drink, and then just as I thought he might be calming down, he shot past me and tried to race out of the door.

It was freezing cold, he was only wearing thin trousers and a polo shirt, and his trainers were unlaced. How I moved quickly enough to catch him I shall never know, but I’m pleased I did as I dread to think of how long he might have been missing for.

The head drove down and I bundled him into her car so we could physically get him the very short distance from home into the school building. From there he shot into the classroom – after I blocked the exit – and hid under his desk, rolled into a ball. The TA that he shares with Small Girl and another child was there to keep an eye on him, and the head stayed with him while he calmed down. I know they offered him a banana and a drink when he was able to sit at the desk rather than under it (I came prepared for the lack of breakfast). He didn’t join the other children for the rest of the day, but did do some work at his separate desk.

I felt terrible about pushing him, but I knew I didn’t have a choice. What we hadn’t realised until this year is how badly any kind of change affects him, and it’s getting progressively worse. We don’t know if hormones are involved – he’s nearer 11 than 10 – or whether it’s “one of those things” but we do know that even with every support the school had put into place, it was nowhere near enough.

The Christmas break came a day early as their TA was sick on the last day and they weren’t able to find a replacement. There were too many variables in the day, including an end of term service in the neighbouring abbey, that meant it wouldn’t have been safe to send either of them, so with the head’s agreement I declared a pyjama day and kissed goodbye to my planned six hour’s wrapping marathon.

Behaviour improved a little, but then as soon as the last Christmas present had been unwrapped and the usual roast lunch was dished up, I noticed a profound difference. I won’t say that everything has been perfect since then, but I think knowing there are no more big surprises planned has been a huge relief.

I was dreading them going back to school but in fact it’s been remarkably calm. I did give Small Boy a small chat about maybe seeing if he could try hard to understand that nothing has been “normal” for his teacher since she started as she came right into the whole Christmas plans chaos, and he agreed to try. For school’s part, I insisted that Small Boy be given the choice to work at his separate desk for any lesson, as long as he proved their trust in him by actually working and not messing about or dreaming. Not that he has done either of those things, but it has to be a two-way street. He can hear the class from his desk, just not see them as he is separated by a row of bookshelves. The teacher or TA checks on him regularly, and he has been much happier.

On Wednesday he came home with a sticker on his jumper. Turns out it was for the best child in the class that day. Cue me trying to not cry with pride. Then Thursday he turned up with another sticker, for a repeat performance.

And yesterday? He came out of school with this:

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Small Girl, not to be outdone, came out adorned with a fantastic sticker for being the best in class that day.

Not ashamed to admit I teared up a bit. OK, a lot.

Sadly, the effort of having been so amazing all week was too much for Small Boy who had a (mercifully brief) violent meltdown about an hour after getting home, triggered by something very small. I kept him safe while he raged and then held him until he was calm enough to know where he was. He was quiet after that, and a little subdued, but still able to eat his tea and go to Scouts, more proof that he is handling the new routine pretty well.

So, the good and the bad. It’s a constant balancing act trying to ensure I push for my children to have the adaptations to the school day that allows them to attend, but at the same time not letting them think they can just refuse to go in.

However, I think one thing is clear. Neither of my children can cope with the Christmas term. I have review meetings for both of them next week and top of my agenda will be a concrete plan for November and December of this year. I cannot allow either of them to go through the hell that it plainly is. I dread having to remove them from school, but if that is what it takes to ensure their well-being then I will, but I will be pushing for tutoring too.

It could be a busy year!

 

Anxiety Overload

9 Mar

Morning. I’d say “good” but that would be a lie.

M is in school, and she was, or at least she seemed fine when I left her in the care of her temporary TA at 9 o’clock. Whether the day goes well or not is too early to say.

We knew last week that the estimable Mrs T would not be in today, and plans were made to ensure M had a 1 to 1 that would be there for her today. She really can’t manage the school day without some emotional support; so the school arranged an unknown person to come, as all regular temp staff were unavailable. This appears to have been the proverbial straw that broke the camel’s back.

The weekend started with howling and crying on Friday evening as she discovered her timetable for Monday in her school bag, along with Tuesday’s one (Mrs T is super-organised). And then the entire weekend has been punctuated with sobbing fits, crying, wandering about attached to various comforters like her fleece blanket and her favourite pink cat, or alternatively screaming at her brother, or me, or her dad, in an attempt to control something in her confusing life, be it her toast or the socks she was wearing.

I can’t bear her behaviour when she’s like this, it’s desperately wearing on all of us, but my heart breaks for her – being so anxious about something that in all likelihood will be fine must be exhausting and frightening for her. It’s times like this that if anyone were brave enough to tell me that “autism is a gift not a curse” I might truly be tempted to punch them. Try telling my eight year old her autism is a gift! She was up more in the night than she was asleep, roaming the house with a belly ache and unable to settle, or even to process what was wrong. I knew, and yet I could offer nothing but reassurance in the form of cuddles and encouragement to curl up in the blankets and try to rest.

I know there are times when her breathtaking memory for details or her total recall over song lyrics is wonderful, but for now, today, autism can do one.

Regression

25 Jan

It’s not been a great January so far. The weather has meant two separate days when we’ve woken up to an announcement of no school, and that has played havoc with M’s routine. She has a new class teacher and a new head teacher, both of whom she seems to actively like, but the ripples from the pebbles that have been thrown in her emotional pond have been far-reaching.

The instances of shouting, screaming and hitting out have increased substantially – and bearing in mind December and the run-up to Christmas were no picnic – this is not insignificant. M has resorted to baby talk, increased use of her dummy (soother) when at home, as well as her cuddly toys and sensory items like her weighted blanket and her fleece blankets. She is always clingy to me but this has also increased, to the point I sometimes I feel I am in danger of suffocating under the weight of her need for me.

I guess I didn’t help matters by “abandoning” her for an overnight stay in Glasgow when I drove E back to university on the day of my birthday. I had a fantastic weekend, including a cinema trip and some shopping time, as well as the pleasure of one to one time with my eldest child. I have been paying for it with heartfelt comments and tears ever since.

M’s termly review meeting was last week and it was a good chance to let the staff know just how bad things had been at home. There is a new SfL (Support for Learning) teacher who comes in once a week and seems to know her stuff; she suggested several ways to try and improve things for M, all of which we will be putting into practice. One of them includes re-connecting with SaLT and making M a visual timetable for her entire week, in colour, that she can keep with her in an aid to lessen anxiety, along with a plan to sign the whole school. As language is the first thing to disappear when M is overwrought, the idea is to bring even a small measure of comfort by giving her the most access to converse as they can, and of course it means that there is more of a level playing field for any other children who may struggle, now or in the future.

As well as M, we discussed B, her brother, who is struggling himself. He can’t seem to let go of the fact that fate has given him a sibling with autism and he needs to make allowances. He is quite an angry wee man and there are more plans in place now to help him deal with his emotions around all this.

Coupled with R’s increasing anxiety about his forthcoming pre-lims and some very real concerns about his twin’s health (more of that another time) this isn’t a month I shall be sorry to see the back of.

Not everything is bad news; I am enjoying escaping to write some more of my book, and have also been happily connecting with more writers on twitter and other social media, finding out that the peculiarities I have thought personal to me are perhaps more of a widespread curse on writers in general and maybe I’m not actually going totally mad.

And the days are finally getting longer! It is such a relief to look out of the window at 4 pm and to still see the beach.

Here’s a little picture of M on Christmas Day.

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Not a Great Day

14 Oct

I don’t know what is going on in M’s head right now but she’s not in her happy place, that’s for sure.

The darker mornings are definitely helping her not to get out of bed so early, which is a real blessing in the half term. However, anything – and I mean anything – I try to get her to do, from eating to getting dressed, has been met with piercing screams. Sadly she has also been like to this to B, which isn’t great for either his sensitive ears or his nerves. I’ve been realising that he takes her sudden noisy mood changes to heart more than is healthy, BUT, and this is important, he still cannot resist winding her up. He really should know better by now.

Anyhow, I thought getting everyone around the table for a delicious brunch of eggy bread might settle her, and it did for about half an hour. The screaming began again over something that was so insignificant it can’t even be called anything, and I stepped in. M was sobbing, and no cuddle was enough to comfort her. I suggested she might try and draw what was the matter, as it as helped in the past. To be honest I wasn’t expecting her to agree as she has been spectacularly resistant to anything she perceives as a demand, but she headed for the kitchen to find pencil and paper. She drew this.

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It broke my heart to see she labelled herself as bad. I’m not daft enough to think that sad wouldn’t have been on her list, but it hurts when your child is so desperately unhappy.

Part of me is immensely proud that she was able to draw and write how she was feeling so accurately. There was no way I could get any more than a shrug from her in conversation so to be able to locate and then articulate her emotions on paper is a huge step. It also shows how visual she is, all that information was locked up in a child who couldn’t verbalise one word of it.

I reassured her that she is not bad, she might do “bad” things like throwing and hitting but that does not make her bad. I asked her if she wanted to draw things that would help her feel better, and she went off meekly to comply. Two “demands” in a row and she coped with them, a small breakthrough.

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This was her wish list. The top people are friends (not specified) and the bottom three are her siblings currently at home. On the right as you look at the picture is a TV and a sofa – her DVD viewing all sorted out.

She was able to explain that she thought her siblings didn’t love her, which they do, but they had all shut her out today (realistically because she was driving them nuts) so I went with her to ask for a hug from each of them. Then I reluctantly let her watch a DVD. I have been trying to wean her off too much screen time but faced with such an obvious plea I would have felt utterly heartless doing anything else.

The remainder of the day has been slightly easier. She got the play dough out after the DVD and was busy for ages making biscuits and cakes. I think the sensory feel of it is calming for her. Then we had a lovely Skype conversation with her big sister which left her laughing and happy. The visual side of Skype really engages her. She still hates the telephone.

I do wonder if she is struggling to process the change between school and holiday time. She was in a state for several weeks after the summer holiday, and now we have similar behaviour. She would choose in a heartbeat to be at home rather than at school but she is not good at the switch, and it seems to be getting harder rather than easier.

Right now she is asleep, and with any luck she will have a peaceful night. Tomorrow is another day. Clean slate time.

It Might Go Better This Time (Fingers Crossed)

20 Sep

The eldest offspring goes back to university tomorrow. This is nice for me in only one way; the drive down takes over four hours and we do get to enjoy a good bit of banter on the way, as well as a tasty breakfast at a great truck stop.

It’s bad news in every other way.

1) I will miss her.

2) Everyone else will miss her.

3) M will miss her most of all.

Actually that last one might not be entirely true but it is the one that worries me the most. M cannot seem to process the change that E not living here means. She is a bright girl, very bright in fact, and while she can understand on an academic level that from mid September to some time in December her oldest sibling will be living in Glasgow, on an emotional and gut level the messages aren’t getting through. I know she loves her dearly and is usually content to be left in E’s care if I need to pop out, but I think the real problem is that something has changed.

She knows that R goes to boarding school every Sunday and returns every Friday. That has been happening for so long that it is written into her coding somehow as “usual”. E going to university just isn’t. I mistakenly assumed that last January would be easier on M than the September had been, as she would realise that we were all speaking the truth when we said E would come home for a holiday, but in fact every time E departed the behaviours were worse than before.

So, my concerns that next week could be very tough indeed after a three month summer break are, I feel, well founded.

I just hope I’m wrong.

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