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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Assessment Time (again)

19 May

Well, it feels like a slight case of deja vu, but this morning I took B (Small Boy) to see the community paediatrician in the first step of looking for some answers.

After various chats with a couple of very good friends, and a meeting with the Head Teacher of his school, we are all agreed that the most likely scenario is that B is also on the autism spectrum. There are only so many times you can hear the words “he’s so like his brother at that age” before you realise you’ve been so caught up in dealing with everyday life in a neuro-diverse household that you might possibly have overlooked one of the members.

Actually, that’s not true. We’ve not overlooked him – there is no way anyone could ignore our Small Boy – too loud and in your face bless him, but we have probably been guilty of thinking him badly behaved rather than autistically behaved, and there is a world of difference between the two.

So, with the backing of school, and the accepted knowledge that we do generally know what we’re talking about, the paediatrician is sending us the colossal booklet of questions that I remember filling in about Teen Boy when he was younger, and the whole process starts up again.

I’m sure if in the future we walk away from a meeting with a diagnosis, there will be a period of adjustment and possibly even anger or disappointment, but I’m wise enough to know that it won’t last and our beautiful boy will revert to being “just B” , but with a little more support and understanding in this confusing and anxiety-inducing neuro-typical world he’s forced to live in.

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