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

Archive for the ‘Anxiety’ Category

A Sports Day medal #Prose4T

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This was D yesterday morning, my nervous but excited girl, on the way to her school sports day.

She’s at a special needs school due to her anxieties and autism, mainstream sports days just didn’t happen for her – unfamiliar/too many people, too much noise (from her perspective). We’d have the practice, the build-up, the change of clothes and then anxieties would overtake at the last moment.

Prose 4 T is being hosted by @EllieAllAtSea this week and I’m linking up with this:

A sports day medal:

Longed for, dreamt of, for days if not all year.
The absence of one would cause some tears.

Running fast, throwing far,
Trying her best.
She did it! She came second, she was (nearly) faster than the rest.

Angry bird tshirt worked,
She almost flew down that track,
She was aiming for me, cheering and standing at the line,
Nearly knocked me onto my back!

Tears turned to joy now, smiles and hurrays.
The event is over, a good way to spend a day.

Medal placed under pillow now,
Held close at night,
She did her best, my angry bird D,
A good ending was in sight.

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It wasn’t meant to be

A month ago I was practically burbling over with excitement:

D was a day away from celebrating her birthday, a very exciting time for her as she’d never really recognised birthdays up until the last couple of years.

And I was shortlisted in the Brilliance in Blogging awards, something which I felt very humbled about. I don’t go by stats and traffic and blog for the enjoyment and awareness-raising. The spam and nasty comments are a downside but there’s a delete button for a reason.

Two days later, everything changed.

I wasn’t a finalist in the awards. I felt bitterly disappointed but felt I’d let everyone down who may have voted, who may read my blog, I felt I’d let down my children. T, in particular, was very proud of me and wondered what a trophy would look like, he decided it would be fingers tapping on a phone screen – bless him!

I have to admit that I cried and felt a bit sorry for myself, that I wasn’t doing it “right”, that I wasn’t in the blogging cliche that seems to exist. I felt like the chubby girl chosen last in PE, except I wasn’t chosen.

I felt sad that I wouldn’t be attending the ceremony, I hadn’t been organised enough to get a ticket to BritMums Live and it was too late.

Lovely Kate, who writes for BritMums ran a competition to give away a ticket and I decided to enter, fingers crossing.

Another day later and my world as I know it, turned upside down, back to front and inside out.

Suddenly the ceremony didn’t matter anymore, the thought that I wouldn’t be going paled into insignificance.

My mum, who’d been showing the symptoms for years, was diagnosed with kidney cancer and neither radiotherapy, chemotherapy or an operation were an option. The consultants were not prepared to perform a high-risk operation.

Focuses change when news like this reaches your family, they have to.

I definitely won’t be going anywhere far away from a hospital in the next few days.

Last week, in a dramatic u-turn, they agreed to operate on my mum, she (assuming there is a bed) has the very high-risk operation tomorrow.

There are very mixed feelings going around my head, this operation will either prolong her life or end it suddenly tomorrow, there are no guarantees with anything.

I could be doing the school run later and be hit by a bus – I sincerely hope not! – but in this situation, everyone that needs to know is aware of tomorrow. She’s spoken to and told who she wants to tell, she’s seen who she wants to see.

It will be a case of waiting and hoping.

Obviously had I been a finalist in the Brilliance in Blogging awards, I would have had a decision to make as to whether I attended – it would have been a no-brainer, I wouldn’t have.

So I’m grateful that the decision was made for me, both by the BritMums judges and Kate, her ticket went to a very deserving mummy blogger.

Next year though, I’ll be there with bells on! I just need to get through the next few days/weeks/months first.

Fingers tightly crossed.

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Football, Facebook and Mr Pick

We have an anxious little man this week, T aka Mr Pick.

Football is quite simply his life, he’s lived and breathed it from the time he could focus on a television screen and once he could kick a ball, he was off!

It’s his obsession and his calming mechanism. Every Tuesday you can guarantee the first question he’ll ask me is “did Match come?” – a football magazine that he subscribes to. It is literally devoured, assuming it’s arrived on time, for stats, news and pictures. If it hasn’t arrived, he’s extremely disappointed and wants to ask our postman why.

As well as being a stat-man about his football, he’s also a good little player, a left-footed defender/midfielder and, is very tactical and knows in advance when to get into position.

We were really pleased to find out that Chelsea and Samsung would be running free coaching sessions at our local Goals Centre twice this year, once in a couple of weeks, once in October.

One problem though, it was Facebook bookings only and …guess who’s not on Facebook? Yep, that would be me. The Goals Centre were quite frankly useless about it, all they could suggest was Googling the event as they didn’t know timings, bookings anything.

Eventually I found an email contact and although T’s football manager had advised us there would be a football tournament in the morning, the afternoon would be free. Correspondence started with regard to an afternoon session booking. There were no spaces in the afternoon but still spaces in the morning but T was happy to be going along, soaking up the atmosphere and hopefully slotting in if there was a no-show.

Then the bombshell. The manager had got the timings wrong, he hadn’t bothered double-checking. The tournament was exactly in the afternoon. T frustrated but as there had been spaces in the morning, I fired off another email on Saturday and we waited for a reply.

You can guess where this is going…. All the remaining spaces have now been taken. Had the manager got the timings correct in the first place, T would have been booked on and eagerly looking forward to attending.

But right now, he’s upset and very anxious. For an autistic child that needs to know exactly what is happening and when, this is causing him problems. There is nothing I can say to put it right, apart from promising that we’ll go on the morning and hope that there is a no-show.

T is offering all sorts of scenarios and rationale as to why would people book and then not show up.

I can’t make it any easier for him and with ten days until the sessions, I can see him getting more and more anxious.

Part of me is absolutely furious that the manager didn’t bother to double-check timings and just assumed it would be the morning. I did double-check with him before I started emailing about sessions and that’s what he stuck by, until he found out otherwise.

Part of me feels guilty that I’m not on Facebook because I could instantly have seen which sessions were still available. A Facebook thingy would mean I could enter competitions, see more information about events and reach more people but I still don’t want to, I’ve seen the screenshots of pages verbally attacking autistic people and encouraging physical attacks.

So, we’re counting down and I’m really hoping that there will be a no-show at one of the sessions, there will be one disappointed Mr Pick if there isn’t.

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No more battles with a rain-cover, thanks to a @bundlebean

Rain-covers on a buggy and D do not mix.

From a very early age, she would start screaming as soon as a rain-cover was put over the buggy and literally carry on for the length of the journey. Highly stressful for me, for her and for anyone within earshot. Now, of course, I realise she had considerable anxiety and sensory issues over her perception that she was being placed in a plastic bubble, a place where she couldn’t see or hear properly, a place which was noisy due to the rain.

So, it’s been a challenge. As soon as she was old enough, we moved to an umbrella, but then had the issue of her not holding it over herself, of the wind blowing it away, off her refusing to use it if she didn’t feel like it.

Now that she’s older, the rain-covers are still refused but she will hold an umbrella and curl up underneath it as obviously her lower half was still getting wet and, more importantly to her, Bunny could get wet too.

What was a Mumma to do? The weather is so changeable so quickly in this country.

The answer came in the form of a BundleBean, a 5-in-1 waterproof and warm travel cover.

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Designed by Emily and suitable from birth, it can be used with:
Bike seats
Car seats
Buggies and strollers
Slings and carriers
and for
Picnics and Playtime.

Now, I know you’re thinking: “hang on a minute, D is 9…how would this accommodate her?”

Take a look at these pictures, yes, we tested the BundleBean in the wind and rain, with both special needs buggies:

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We can confirm it is waterproof!

D is 143cm tall and it more than covered her legs, the side ties meant that I could fasten it to the buggy securely too. She loved the stars pattern on the front and the fleece back, it made it very warm and snuggly for her. She was delighted to find that there was a pouch pocket at the front, perfect for the small things and likes to carry around with her.

The cover is very adaptable to fit around a smaller child’s bike seat/car seat/buggy/sling and here’s how:

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The BundleBean is going to make our school runs and journeys out so much easier, it’s a huge recommendation from me.

Bunny enjoys having a tea party with D on it too!

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Click here for a list of UK and International stockists, or here to purchase directly from the website, prices start at £29.99.

Disclaimer: we were sent a Red Star blanket for the purpose of this review.

J is for etc

Seems like Spring is finally here; the blossoms are popping out everywhere and the cats are bouncing around the garden like big furry squirrels. It’s nice to see.

I’m more pre-occupied with appointments next week though, they keep flashing into my mind. Scenarios of parenting being blamed for T’s definite autistic traits, silly I know but understandable. I had similar thoughts when D went through the diagnostic process.

I was going to do an A-Z of all the emotions but decided that would not solve anything, then I thought how about taking the letters of my name. Hmmm, would that make me feel any better?

J – Jaded
E – Emotional
A – Anxious
N – Nervous
N – Needy, needing to know it will all be okay
E – Empathetic to T and Hubbie, they’re both nervous too
T – Tired
T – (this is when I regret having two ‘T”s, how about) Trusting that the professionals will listen
E – Educated, to a point, I know more about the spectrum now than I did when we started the process with D.

There’s a couple of positive ones in there, that’s good.

Then I thought let’s link my name letters with a playlist, music always makes me feel better.

J – Joyride by Roxette or Just For You by Midge Ure.

E – Every Breath You Take by The Police

A – Alive and Kicking by Simple Minds

N – Nobody’s Diary by Yazoo

N – New Song by Howard Jones

E – Eyes Without A Face – Billy Idol

T – Temptation by Heaven 17

T – The Fear by Lily Allen

E – Everybody Wants To Rule The World by Tears for Fears

I’m sure I’ll be listening to a couple of the way to school this afternoon.

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Putting anxieties into a “Worry Bag” – Best £1.99 spent EVER!

First day back at school for D today, like many other children.

She didn’t sleep well last night – despite her melatonin – and anxieties overtook her at 3am. Cuddles, reassurance, back to a sleep which-wasn’t-really-a-sleep, a one-eyed-open sleep waiting for her to come back in.

A tired girl this morning, an anxious girl. Not wanting school, a particular anxiety around a fellow classmate overtaking her.

Then I remembered I’d bought this:

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A “worry bag” from eBay, the seller and I exchanged messages afterwards and she’s a mum to an autistic daughter too. Her website has some great visual ideas on here – asdbrightideas.co.uk – and it’s somewhere I’ll be returning to.

But in the meantime, we had a Worry Bag to try out. D was scared at first, she didn’t understand what we were doing but I wrote her anxieties down on a piece of paper, we read them, we folded them and placed them into the bag. Then we decided where we’d put the bag.

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Literally from that moment on, she relaxed. I got my girl back and the journey to school was fine. I got a big hug before my smiling girl went in too.
A complete contrast to half an hour before.

If only that worked for bigger issues as well…

Written in the hope that our experience helps, I didn’t expect such a positive result the first time we used it…but it worked.

Like the title says….best £1.99 spent EVER!!

Bunny takes over the blog!

Psst! It’s me, Bunny. Don’t tell her…that Mumma woman, I’ve snuck on because I.Am.Cross.

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(That’s me looking cross by the way)

I am D’s comforter, her anxiety tool, her best toy ever. Go on, ask her who is her favourite toy and she will say me, guaranteed.

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We go everywhere together; D moves to another room in the house, I’m there; school, outings and bedtime I’m always with her. If she’s drawing/reading/playing I’m tucked safely under her armpit, ready to come out and be cuddled. I’m special and I know it.

So why, in the name of everything cuddly, has she (that Mumma woman) been onto eBay and brought these?

I mean, does this one look as loved as me? Does it?

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And, as for this, she totally got the measurements wrong!

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*sniffs* I can’t be replaced, I just can’t. These other Bunnies are all well and good but I’m the original, the best.

She (that Mumma woman) has started carrying one around in her bag, she’s said to D that it’s something to cuddle and love if ever I’m dropped (what?) and during the time they’re searching for me. How can I ever be replaced?

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I’m Bunny, the original and the best and D couldn’t be without me, simple as that.

This YouTube clip, this Toy Story segment, says it all, 2 minutes 20 seconds in. I DO see everything and I’m NOT being replaced!