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!

 

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Bubbles are cool

19 Nov

It’s been a long – very long – time since my last post but so much has been going on, even though I’ve had plenty to say, I’ve had little time (or inclination) to write about it.

Long story short: in addition to Teen Boy and Small Girl being autistic, I now have a third diagnosed child – Small Boy. The whole process, from first discussing concerns with school to diagnosis, took a staggeringly fast four months, which goes some way to making up for the disasters that were the previous two times.

Coupled with that, and poor Small Boy’s horrendous autumn term so far, Teen Girl’s health has continued to be very poor, meaning that she is almost always in pain, exhausted, or swollen from whatever it is she is allergic to. The local hospital have run out of ideas so we’re now waiting for more specialist help at a hospital further away. In the mean time, her whole life is on hold, which is no way for a 17 year old to exist.

Small Boy is, we think, in the grip of an early hormone surge which is making his anger over small issues blow up out of all proportion. It’s like living with a hungry T-Rex most of the time, or as Small Girl says, “he has a volcano in his tummy and sometimes the lava goes everywhere.” She’s not wrong, and if he does get past the point of calming, the meltdowns are the worst I’ve ever seen. Bearing in mind I’ve had almost 18 years of parenting autistic children this is saying something.

School are being wonderful and have stepped up to provide as much support as they can, and right now neither one of the smalls has any pressure to do homework, which has taken after-school time to be a lot less stressful on us all.

Small Girl is not making a huge amount of progress on dealing with her anxiety, but she is really trying. Her CaMHS appointments come around every two or three weeks and the woman she sees is patient and very experienced. Right now, we are working on filling in a 5 point scale, so that SG can learn to recognise when her anxieties are building and try to self calm before she reaches meltdown.

One great calming technique is blowing bubbles. SG loves doing this anyway, and from my point of view, it’s cheap and easy to do just about anywhere. When she gets upset, the control needed to blow large bubbles automatically means her breathing will slow down, meaning she keeps calmer.  Here she is blowing a huge bubble this morning:

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She was engaged with her session this morning, and then ate her lunch in the car on the way back to school. She begged me to keep her off but she only had to make it through 90 minutes and I wasn’t going to be swayed by her big puppy-dog eyes, although I was very tempted. You can see for yourself just how cute she can be when she tries:

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Almost the end of another school week, and hopefully it will be a good one with no meltdowns from anyone.

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Silent Sunday

23 Aug

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Echolalia and The Medicine Show

1 Aug

I do love my music. With the exception of death metal and some of the more heavy rap, I pretty much enjoy everything depending on my mood. But like most people I have my go-to favourites, and none more than when I’m driving.

I switch from pounding hi-energy disco circa 1984 or equally ear-splitting rock (when I’m lucky enough to be alone) to being the queen of easy listening if I’ve got the little ones in the car. I discovered years ago that anything with a very fast or heavy beat tends to amplify their worst behaviours, so I’ve gone all grandma on them ever since. My tunes of choice right now tend to be one of these two:

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I often just have M in the car, as she’s heading off to yet another appointment, and it’s frankly adorable to hear her singing along to David Cassidy or the Bay City Rollers as we eat up the miles into town. She’s extremely fond of Dr Hook too (not quite as much as me but I think I have obsessional issues with Dennis Locorriere’s voice – that’s another story altogether) and she’s word perfect on songs like Sylvia’s Mother and Years From Now. All very innocent. Until…………..

CD 2 was requested yesterday on the way to Camhs. M had decided she wanted the “funny” songs, not the slushy ones, so I slid the CD in and off we went. Hubby’s new car is a bit weird, the CD player is in the glove compartment so it’s not advisable to change CDs while you’re driving.

The second track came on and I was singing along under my breath as I do because M has a problem with me singing over songs – she can, but I’m not allowed to. And then I realised what the words were. Dilemma. Do I quickly skip the track and face a meltdown or do I let the song play out and hope she’s not actually listening? The second option is what I choose as I know that she will get very upset if I skip before the end, but I’m cringing inside as I just know that she will be absorbing every single word. That’s when echolalia is a curse.

I have no idea when the lyrics might pop up again, and where. M’s echolalia comes to the fore mostly when she is stressed, and it can take any form from counting to 100 over and over again, to reciting huge tracts of a film script, or song words. I used to get a bit annoyed when all I could hear were Christmas songs in the middle of July but right now, if she gets stressed, I’d be delighted to hear Jingle Bells instead of this option.

http://www.azlyrics.com/lyrics/drhook/freakersball.html

Just praying she doesn’t recall all the words in the middle of a particularly trying school assembly!!

Halfway There

28 Jul

Halfway through the summer holidays and we seem to have done nothing. Nada. Rien. And you know what? It’s been LOVELY.

Actually, we did go out once. The kids got dressed and everything. It was due to M’s uber excitement about her birthday treat which was to see Minions at the cinema. Oh yes, and we got a McDonald’s afterwards – yippee. <insert sarcasm> But they had a lovely time and that’s the main thing.

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I know I am on the lucky end of the autism parent scale. Every morning (unless we really have needed to go out) I get a lie in while the youngest two head downstairs, get a drink and make their own breakfast. They then lounge about in their pyjamas and watch a bit of TV. After half an hour or so, M makes me a cup of tea and B brings it carefully upstairs. I am spoiled, I know, and I am insanely grateful. I’d like to say that they continue being as adorable all day but obviously you’d know that was a lie, and it would be. However, the stress and anxiety levels have plummeted since the school bell rang to signify the end of the year, and it has been wonderful to watch.

My biggest challenge was not falling apart when I drove Teen Boy through to Aberdeen in the first stage of his World Scout Jamboree journey to Japan. I am so proud of myself for being able to hug him goodbye without howling, and for continuing to keep cheerful on the rare occasion he has had Wifi (and time) to send a quick Facebook message. To think that five years ago he had had a breakdown due to the pressures of a few days at his (then) new secondary school, and he basically lost 18 months of his life to depression and extreme anxiety (thank you – not – Aspergers), and now he is on the other side of the world having the most amazing time with his Scouting friends shows me just how far he has come. I confess to cyber stalking him through every social media I can use, and I am building up a nice little album of pictures for his return. Underground selfie1

This is a snap of him on what I think must be the underground system in Tokyo – photo credit to one Andrew Rosam via Twitter. As you can see, he is looking very cheerful. Doncha just love social media?

So, this is us. We’re not going away this summer (boo hoo) but frankly we do have a ton to do in the house, not the least of which is sorting through and chucking out loads of outgrown clothes. M has homework from her CAMHS sessions, which is to head out into the garden by herself for short timed periods and this is going pretty well. She needs a diversion, like the trampoline, or bubble blowing, but even back at Easter she wouldn’t have been able to contemplate doing this. I am hoping that B’s on-going assessments will result in an ASD diagnosis, which will give him access to the support he is definitely needing, and I am hoping above all that when they go back to school in three weeks that their new teacher will be an understanding sort who rises to the challenge of getting to know how my beautiful children tick.

Off to make another coffee and put yet more washing in the machine! It’s all go here.

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.

Silent Sunday

31 May

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