Tag Archives: routine

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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Just popping by

17 Jul

Busy time of it on Planet JustGoodEnough of late – been away for two weeks in lovely sunny Hampshire, and it’s taken most of this week to recuperate from the journey back. Or so it seems to M, who has taken to some annoying (to the rest of us) behaviour. There have been lots of refusals to do even the simplest tasks, lots of screaming, punching and hitting, and a definite backslide into comfort habits like watching baby programmes on TV and the computer.

I know she is struggling – the holiday itself prompted a lot of changes that she had to process – for her “just” visiting a new town is anything but simple due to the anxieties it provokes – and we compounded the issue by stopping overnight on the way home, but her behaviour is very wearing. I have tried non stop to get her outside to bounce on the huge trampoline in the garden but she is fixated on using the small indoor one, which is lovely in one way because when she’s bouncing she isn’t hitting out or screaming BUT very annoying if you are trying to read quietly and all you get is squeaks and boi-i-i-ings.

I hope that she will start to calm soon, there have been signs today as she willingly got dressed this morning (a nice surprise) and has been somewhat less confrontational to B. I found out today who her teacher will be next year (we were away the last week of term) and she seems pleased as she knows the person in question, so that’s one potential problem dealt with before it kicks off.

Now we just need to get through the next four and a half weeks in one piece. Wish us luck!

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.

 

 

 

 

 

 

 

 

 

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