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:
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.
Just praying she doesn’t recall all the words in the middle of a particularly trying school assembly!!
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.
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.
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.
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:-
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:-
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:-
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:-
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.
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.
The Bank Holiday was quiet, really quiet. Hubby had to work and Teen Boy was at his boarding school, so I had Teen Girl asleep half of the day and the small people playing nicely almost all day.
Yes, I did say that – almost all day. I know, miracle, right? There was a wobble when I *persuaded* them to play outside for half an hour and B protested, loudly, but it happened. And then it all went a bit pear-shaped in the evening, but basically it was a good day.
Last night however. Urgh. Poor M was visited by the Anxiety Fairy, repeatedly. Which meant I kept getting woken up too, to reassure her that her tummy pains were most likely because she was anxious about school after a three day weekend, and not because she was likely to be sick. It’s not easy being awake enough at 3 am to talk through breathing exercises with an uptight eight year old but I think I managed it, as finally after three attempts she was back in her bed and stayed there.
This morning, naturally, she was very tired so the school run was anything but cheerful. I am staggering through the day and trying not to take a nap in case it prevents me sleeping tonight, but I wanted to buck myself up a bit as when I’m tired I tend to mope and it can become a downward spiral.
So, I went for a short walk. I always have my phone in my pocket, it’s like my security blanket I suppose, and I snapped a few pictures that made me smile. The quality is rubbish as it’s not a great phone, but I’ll put them up in case you like them too.
They reminded me that even when I’m feeling particularly crap, there is beauty in the world, and if I literally take the time to stop and smell the flowers, then just perhaps, I can tip the balance in favour of a happy day.