Me and my girl and boy, raising awareness and acceptance of autism

Archive for August, 2012

Friday 31st August – a much calmer day

The predictable unpredictability that is autism has made for a much better day today (well it couldn’t have been any worse than yesterday!)

Today, for D, has consisted of:

These chaps (again, honestly she will be in class quoting great chunks of the episodes):

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And Bunny (good, old faithful Bunny):

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And her Playmobil animals:

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Rounded off with an ice cream from the ice cream van, yum yum!

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🍦🍑🍦🍑🍦🍑🍦🍑🍦🍑🍦🍑🍦

A nice, calm day was exactly what D needed after her anxiety-ridden one yesterday and she has been calm, happy and laughing today.

I think I was still recovering internally from yesterday. I’ve been really teary today (kept it hidden from D) and some lovely follow Fridays had set me off again, very grateful for them all.

We’re off to Taplow again tomorrow so a fab-u-lous day should be guaranteed there, once we’ve done the rail journey there and back.

I hope everyone’s had a good day, comments/RTs as ever welcomed, thanks for reading Jx 😘

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Thursday 30th August – please can we rewind?

My lovely D is all snuggly with me, she’s relaxed and laughing, eager to show me the moon when I’ve finished this blog.

Sounds lovely and it is, I like our Mumma-D time, it’s when she’s relaxed that we can talk about the return to school and things that worry her.

I wish it had been like this all day, but it hasn’t. I can’t remember a worse day in these holidays. I’d like to rewind twelve hours or so and start again, but we can’t. I’m just grateful that she is finally calm.

There have been so many emotions played out today, her brain must have been a complete jumble by lunchtime.

We have had refusals (to get up, to get dressed), anger (directed at me or T), frustrations (similar), extreme over -sensitivity (T could not look at his sister without her taking offence and storming off), unhappiness (tears, so many tears today, from us both), jealousy (over the trampoline) etc etc…I could probably list every emotion.

It’s been extremely tiring, trying to second-guess all the time and then failing to second-guess and dealing with the fall-out. I have the headache from Hell.

I don’t think there have been that many triggers, I think it has just been “one of those days”. I’m just glad D is now calm and relaxed.

Tomorrow will be a better day!

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Caterpillar watch, day 6:
They have definitely grown, they’ve got little hairs sprouting etc, quite happily wriggling about their little pot!

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Here’s a message from the Paralympigs:
“it was too noisy in the main house today, so we stayed in our little area. Peeping our noses out to see if things were quiet enough to get some nibbles. We’ll do our event tomorrow if Miss D has a better day” George, Bungle & Zippy 🐹

🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈🌈

Thanks for reading, we’re going to “moon watch” now, I hope everyone has had a good day, comments/RTs as ever welcomed Jx 😘

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You’re a lucky little girl….

I was always told this from an early age…literally had it drummed into me.

I was born six weeks premature, which would be a worry these days, let alone then.

A child born on the same day as me, with a similar prematurity, was found to be brain-damaged. I think I was told his parents named him David.

Every time I must have been a typical little girl/big sister (to two younger sisters) and did something that was “naughty”, I was told “you’re a lucky little girl because a boy born the same day as you …etc”

Well, let’s see….

Was I “lucky” when a family member developed severe PND when I was 5 (or so) and one of my first proper memories is of going to see them in a clinic?

It may not have felt like it at the time but now I realise the importance of talking when things are getting you down. It has always made me very wary of medications to the extent that my head has to be ab-sol-utely banging before I will pop a Nurofen.

Was I “lucky” when my parents split up when I was nine and we moved far away from friends, school and grandparents?

It was a massive upheaval at the time and going into a new class with a single parent who was a father not a mother was difficult. We were the “newbies”, the ones to whisper about and wonder about circumstances etc. But I met my best friend in the first year of secondary school and we’ve been through parental divorce, marriage, divorce (neither of those to each other!) and subsequent lasting relationships. I had three children, she didn’t have any but when we’re on the phone etc. it’s great. We can be chatting about something one minute and then literally collapsing with laughter the next over something that’s triggered a funny memory. Good times.

Was I “lucky” when I answered the home phone one night and it was someone (male) who had a conversation with me that ended with him “asking what colour p*nties you are wearing?” I was about ten years old and can still remember the silky tone he used and the way I was so shocked I just slammed the phone down but also too scared to tell anyone.

It petrified me at the time but it opened my eyes to the sort of people who are out there and how it can effect you. I am very careful to dress D appropriately. You won’t ever see pictures taken in the paddling pool because I’m aware how quickly images can spread. There is a mechanism on my blog that tells me how people how found me and the search terms they use, some of them were very revealing and it made me consider the words I use. For example “autism girl in b*th”. What were they hoping to see?

Was I “lucky” when my first husband left without warning, when my son was 3? Leaving me with a mortgage etc.

Well, obviously not at the time, it was very difficult to make ends meet on a single income. He left and didn’t contribute at all to the bills, I got Β£35 a week when he could afford it. I never bad-mouthed him to my son and just kept going.

Three years later I met Hubbie and if you’ve read my “Mr Bluecrisps” post you know the rest.

Was I “lucky” when we found out that D has autism and we now have concerns whether T is on the spectrum too?

Again, at the time it’s devastating, part of that is fear because the life you has envisaged for your beautiful children has been ripped apart. In time you come to accept that your child is still your child, despite the “label” that society has forced upon them. Raising awareness of a disability that others cannot see becomes paramount. I’ve met some wonderful people via the autism community on Twitter, I’m so grateful.

The sun is shining in my back garden in suburbia. Hubbie will be due home soon and then heading off to football training with our sporty, clever, loveable T, wise beyond his years. My gorgeous D and I will read stories together, with Bunny overseeing.

Yes, I am lucky, I just didn’t know it.

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Thanks for reading Jx 😘

Wednesday 29th August – magazines and murky weather

It’s been too wet to do our planned Paralympigs event outside today. The piggies would have got soaked and it wouldn’t have been fair on them. They’d have sunk in the mud too. We’ll do it tomorrow *crosses fingers & toes*.

Watching the Paralympics torch relay on the news gave me goosebumps. Amazing inspirational people who’ve overcome so much to take part. Really looking forward to watching some events once the Games get under way.

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We’ve had a nice day. We did have a child over to play, which hasn’t gone down to well with D at times but she’s done very well and withdrawn herself if need be, rather than getting cross/anxious.

The downside to having a Bank Holiday at the start of the week is that T’s Match magazine (football, of course) is always delayed by at least a day. So, we had “letterbox watch” from about 10am, with T dashing out every time something came through the door – leaflets, taxi cards all sorts. Eventually it arrived *hurrah* and with it in the post *double hurrah* came “Friends” magazine for D, with these on the front:

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They were a Peppa Pig ice cream set, forget the magazine! She saw the magazine advertised and fell in love with the free gift so I ordered the mag online. It went down very well and she’s very delighted (so delighted that I might have to get another copy in case any bits get lost).

She’s loved the ice cream set today and even more pleased that she can interchange the top bits!

Awwww moment, she’s also made these for me:

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Lots of little hearts! So clever the way she’s used (lots of) Sellotape to
make the shapes, love them.

She snuggled up and watched a bit of the Paralympics build-up with me, and we had a little discussion about the torch-bearers. I’m recording the opening ceremony so hopefully both she & T will enjoy watching some of it.

That’s us.. A much quieter day than yesterday but thank goodness we didn’t go to Taplow today, we’d have been drenched and the indoor areas would probably have been way too busy.

So many blog ideas, so little time until they go back to school!

I hope everyone’s had a good day, comments/RTs as ever welcomed, thanks for reading Jx 😘

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Tuesday 28th August – a wonderful time at @tvapSN but Network Rail….

We have had a fab-u-lous day today, I knew we would *beams*. We went to the Thames Valley Adventure Playground in Taplow (they’re on twitter at @tvapSN). I’ve blogged about a previous visit – go to my blog menu and click on “A VERY special adventure playground”.

D goes there a lot with school so she’s extremely familiar with where it is, layout etc. We don’t go as often as we should as a family, it’s two train changes and heaving D’s SN buggy over two railway bridges. You would think Network Rail would be more inclusive and “with it”. I am lucky in that D will get out and go up the stairs whilst I’m lugging the buggy behind but if she was immobile, we wouldn’t use trains at all. The (unmanned) stations have these “help” buttons you can press, but as if Network Rail are going to despatch someone straight away. Just doesn’t happen. I know that the stations are old and in need of modernisation etc but…. (get on with the blog Jeannette!)

Anyway, it was a lovely day. Only slightly marred by the fact D got her hair pulled by another child in soft play. She screamed and cried, poor D. It was very hard explaining to her the reasoning for the other child doing that.

Here’s a picture of soft play:

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The weather was SO much better than yesterday so lots of outdoor fun:

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This is a puppet that D made, called “Mr Boy”:

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There was also sensory room fun:

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Watching the enjoyment that both T and D got out of soft play and the sensory room made me wonder about sensory rooms in the home. Can they be funded/grant obtained? Would be interesting to know.

D spent a lot of time in the crafts area today, a lovely tvap helper called Lucy helped us make a giant banana and strawberry. It caused a bit of a demand after that, with lots of children wanting giant fruit models, I think Lucy will be dreaming of fruit tonight!

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As you can see, D is absolutely delighted with her giant fruit! She’s always liked plastic/wooden/fabric play fruit and veg, as well as eating the real thing!

The wonderful thing about tvap is that the fellow parents/carers who are there all know how unpredictable SN children can be, there are no stares, or tuts or comments. Everyone is there for the same reason – for the children and young adults to enjoy themselves in a stimulating, empathetic environment.

There were quite a few charity groups there today, staff to child ratio was very high, I think it might be something to consider for next summer, just to give me a few hours off. Six weeks is a long time!

When we looked back at the photos on the journey home, this was one of T and D’s favourites, the jelly fish in the fish tank. They BOTH would like one now!

Oh and The Goodies went on again when we got back!!

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I will post a caterpillar picture tomorrow, not really much change from two days ago.

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So, aching back aside (mine), we’ve had a great day. They both really enjoyed it. We will definitely be going back very soon.

I hope everyone has had a good day too. Thanks for reading, comments/RTs as ever welcomed Jx 😘

Tonight’s final image is one that was at tvap, hanging in the parents/carers toilets lol!

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Monday 27th August – showers but laughter

Today has mostly been about these chaps again:

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Endless rain has meant a day indoors and in an attempt to get D away from these apps (she loves the “Toca Robot Lab” one, it’s very gentle, with funny little robot sounds and easily played by little fingers):

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I suggested a DVD, thinking she’d choose one of the Ice Age films. Nope, The Goodies went on, again. She has watched these so often now, she can tell you what is going to happen just before it does. I have honestly never heard her laugh so much as she does at these, she just loves their slapstick old-school style humour.

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Once T and D head back to school (a week tomorrow), I start thinking about Christmas. It’s very hard to find something that they will both appreciate and enjoy (and even take out of the packaging). I’ve got two options but need to investigate pro’s and cons for both.

This is what tends to happen with presents. This box held a pretty “sister” bracelet that T gave to D for her birthday. The bracelet has been put into her “shiny things treasure chest” and the box is used for her small Playmobil animals, which she carries around with her – definitely a case of preferring the packaging to the gift:

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πŸš‰πŸš‰πŸš‰πŸš‰πŸš‰πŸš‰πŸš‰πŸš‰πŸš‰πŸš‰πŸš‰πŸš‰πŸš‰

We’re heading off on a little day out tomorrow, two train journeys. It should be fun, we’ll certainly be packing a lot of keep occupied on the trains! Just hope the weather is better (please).

That’s us, not a great deal done to any NT outsiders but the day has passed meltdown-free and that’s a good day in my book.

I hope everyone’s had a good day, thanks for reading, comments/RTs as ever welcomed Jx 😘

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Motivational Monday

These need no words:

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But, if you do encounter the stares, the tuts, the comments:

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Jx 😘

Sunday 26th August – we didn’t get all the stares today..

Yippee, we got our trip out! T asking and needing to know EXACTLY which shops we were going to and what we were getting. This caused an issue before we went as T was asking these questions and D was then getting cross because “there are too many questions”. I did wonder after if a social story would have solved both problems – it satisfies T as to what we are doing and it’s in an understandable, familiar format for D too. A laminating job for me when they are back at school then. Lots of cutting out of shop names etc.

For once *shock horror*, we (D in her SN buggy) weren’t the only object of stares today. The nearby festival always generates a lot of people and there were a fair few with their wonderfully coloured hair/Mohicans/piercings everywhere. Joys of being young and responsibility-less! So a lot of the stares and whispered comments that we’d normally attract were generated the festival goers’ way.

They both did really well, D did do some walking albeit with flapping and all was fine until we got onto the bus to come home. She would not sit down at all, either in her buggy or on a seat. I had to have one arm on the buggy, another on her. She eventually saw sense (phew) after going around some corners (driver was practising for Formula One or something!) but she’s never refused that before…strange.

Both went straight in the (cold) paddling pool once back. Neither minding the cold! It gave me a chance to sit alongside, dodging the splashes and read a bit more of Anna Kennedy’s book “Not Stupid” – a very insightful, inspiring book, definitely recommended.

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Caterpillar watch day 2:

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I think they’ve grown a little bit since yesterday. All wriggling around and ..eating!

🚌🌈🚌🌈🚌🌈🚌🌈🚌🌈🚌🌈🚌

Their last full week before heading back to school starts tomorrow. Lots of discussion and prep needed.

I hope everyone’s had a good day, comments/RTs as ever welcomed, thanks for reading Jx 😘

I found some wonderful autism pictures online today, so will be using those as end pictures, this one I sent out earlier but it’s great and just gets that message across nicely:

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Saturday 25th August – Goodies! Goodie, Goodie yum yum

Today we have been mostly watching “The Goodies”‘ D seems rather obsessed with them and their humour. They’re slapstick and harmless, much like Mr Bean really. She was watching them whilst Hubbie & T were at T’s friendly football match, then they came back and T wanted to watch, in between reading his Olympic souvenir booklet. So the Goodies theme tunes have been running through my head today.

D’s been generating her inner Teletubby again, wearing her red onesie -like suit. I think because it’s fleecy and snuggly it appeals to her sensory-seeking needs, even though it’s not quite the season for it!!

There haven’t been many pictures this week from D, but she did do this one today. It’s of her and one of The Goodies, Graham Garden:

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I love that fact she’s put “I’m a Goody” on his t-shirt.

Here’s the Goodies, if you haven’t heard of them, well worth a watch on YouTube etc:

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πŸ›πŸŒΈπŸ›πŸŒΈπŸ›πŸŒΈπŸ›πŸŒΈπŸ›πŸŒΈπŸ›πŸŒΈπŸ›:

After the cannabalistic fiasco that was the ladybirds (ladybugs), we had our next batch of caterpillars delivered today. Here are the teeny tiny little wriggles:
Caterpillar watch, day 1:

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πŸŸπŸ”πŸŸπŸ”πŸŸπŸ”πŸŸπŸ”πŸŸπŸ”πŸŸπŸ”πŸŸ

Assuming this weather clears up – its torrential at the moment – I’ll be taking T & D out tomorrow to get their Olympic/Paralympic happy meal toy. Mix one child with severe stranger anxieties/autism with one who doesn’t want to go out and..wish me luck!!

I hope everyone’s had a good day, thanks very much for reading and hello to new followers, comments/RTs as ever welcomed Jx 😘

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Friday 24th August – Paralympics are coming & so is Christmas!!

Apparently today has been dubbed “Fed-up Friday” by a certain newspaper. By now apparently we’ve run out of money to entertain the children and just can’t wait for them to go back to school.

The summer holidays are too long, it’s true. There’s no longer a requirement for children to help with harvests on the farms and those children who rely on continuity and routine do struggle with the changes.

Having one child who has severe stranger anxieties and another who quite simply refuses to go out, unless it’s to football matches/football training has meant that we have been at home a lot but….

I’ve (on the most part) enjoyed it. For the past five (count them, I did!) summers, we always had other peoples’ children around, 5 days a week, all summer long. This meant that I’d be “entertaining” them, earning my pennies whilst being aware that a) T wasn’t happy with them being around and b) D didn’t join in with them, very much preferring to do her own thing. So, this year has been nice!

There have been children around occasionally but it’s been no school runs, plenty of garden & paddling pool play for all, even the cats have seemed happier that it’s just been us. It would have been nice if they’d (children not cats!) slept in a bit more but hey ho!

The downside of course has been that we’ve had few trips out but not going out, means not spending money! And it will make that solo Costa coffee with a magazine something to really look forward to….

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β˜•β˜•β˜•β˜•β˜•β˜•β˜•β˜•β˜•β˜•β˜•β˜•

I was searching online to see if I could fine mini Paralympic torches for T & D today…there aren’t any. A book also came in the post today which I’d ordered, it was the Olympic torch relay. Photos and a week-by-week account of the flames’ travel around the county. I’d pre-ordered it so hadn’t been sure when it would arrive but hoped it would cover both the Olympic and Paralympic torch relays…ummm, no, obviously. TV coverage will be far less and it just seems a shame.

I hope as many people get behind the Paralympics as the Olympics despite the reduced coverage etc, each and every participant will have overcome so much to be there. Admiration for them all.

We’ve got our Paralympic flag flying proudly, want to find an autism awareness type flag to replace it but can’t find one, ideas welcomed!

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Our day:

Considering it’s meant to be “fed-up Friday”, it hasn’t been too bad.

D has wanted to wear her red onesie-type thing all day, she’s been channelling her inner Teletubby and she’s been very cuddly, right from the moment we woke up. T’s been happy bouncing/playing on the Wii. Both happy in their own little environments, doing their own thing. A few squabbles but nothing major.

We all persuaded Hubbie to try on T’s onesie-type thing, he was very Freddie Mercury (bless him) as it was a bit tight. D laughed and laughed when she saw him, no I didn’t take a picture!!

The “Christmas” element in the title comes from @OfficialSanta, he tweeted it’s 4 months today until Christmas Eve hohoho!! β›„πŸŽ…πŸŽ„

I hope everyone’s had a good day, thanks for reading, comments/RTs as ever welcomed Jx 😘

The final image tonight is of a Paralympic poster I found online, available via Amazon etc, I think it’s great:

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