A Sports Day medal #Prose4T

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.

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.

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.

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.

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:

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:

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!

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.

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:

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.

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.

(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.

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?

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

*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?

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!

Would like to start the day again please Weds 13.03.2013

I would, I really really would. But of course, that’s not possible. I hate seeing D so upset, so anxious, so worked up that she initially can’t say what’s wrong.

Days like this that I wish she didn’t have autism. What’s that saying? “My child has autism, but autism doesn’t have them” or something like that. I’d disagree today. Thanks to an unfortunate incident at school, autism took control today and didn’t let up.

Days like this, I don’t want to blog. I don’t want to sound like I’m moaning. Comments tell me if I am – they do – they mostly go to spam, but they tell me to stop whining. I wonder if they live with autism, or know someone who does, or whether they just feel like having a go at someone. *delete, delete, delete*.

Days like this, I do blog because I know it helps parents/carers/individuals on the spectrum to know that someone, somewhere is not having the best of days too, that they’re not alone. That’s the important thing, that’s why I blog.

Our day, where to start?

D had anxieties before we left the house this morning, she didn’t want to go to school, she didn’t want to “exist”. She accepted a bear hug but didn’t acknowledge my telling her that we’d all miss her if she didn’t exist. I don’t know where this comes from, I presume it’s pre-teen angst, coupled with annoyance at her brother, mixed up with autism.

We eventually got to D’s school, only to find the doors locked, a student was having a meltdown in reception. This is to be expected, it’s a special needs school but, the school don’t put any notices outside or have a staff member standing by, directing visitors and students elsewhere. The other entrance was unmanned and locked too. D, by now, unable to cope with the change was bolting. Back to door number one, where suddenly a head appearing shouting to go to the other door.

Eventually we got in, D by now very anxious, not wanting to be there at all.
She refused to go into the classroom too and an unempathetic TA thought she was just being difficult, until I explained about the doors, about the bolting and anxiety. The phrase “don’t judge a book by its cover” sprung to mind. She was persuaded in and I left, feeling sad for my girl, really hoping she’d have a good day.

(This is where I feel let down by the school, it just needs a little bit of thought. There are windows all around reception, a notice could be easily made and kept under a window, ready to be put up. It doesn’t create a very good first impression, it says chaos. I did notice one of the governors in the car park, I doubt he got in terribly easily either.)

She didn’t have a good day. I went into the classroom – normally D rushes at me enthusiastically and body-slams me – and there was my D, wailing whilst sitting on the floor. She’d been upset by another child whilst in the playground, amongst other things.

Her very-sensitive/anxious moods have continued at home. I always mention to T if D has had a bad day and ask him to make allowances for her, he hasn’t today. In no particular order, there have been squabbles, shouting, tears, threats to leave home and much-needed bear hugs.

This has literally lasted all this afternoon, through meal time, evening routine and settling (or lack of it) time. Thank goodness for melatonin, otherwise she’d still be awake and anxious now.

So, I know this has not been a positive blog and I do like to end positively. I’ll find my “Charlie Brown” picture and end by saying despite today, I wouldn’t be without them; my individual, wonderful children. I am blessed, I am grateful that I was chosen to be their Mumma but I would like a better day tomorrow.

That last picture is for anyone who also hasn’t had the best of days.

Thanks for reading, comments/RTs/shares as ever welcomed Jx 😘

#MagicMoments – Overcoming anxieties and totally rocking it!

Today I’m re-visiting a recent Magic Moment for a great new initiative via theoliversmadhouse.co.uk,click here to read Jaime’s post.

This was truly a Magic Moment, tears of pride streamed down my face for the whole time, not just for D but for every SN child on that stage.

“We’ve been practising songs in the bath; on the school run….everywhere and today, it finally arrived. The day of D’s school play.

D couldn’t go into the school hall at all during her time in mainstream, I never got to see her in an assembly or a play, nerves and anxieties got the better of her. We’d practice the songs at home until she was word-perfect, do dress rehearsals and then, on the day, severe anxieties would set in and she’d be left with a TA in a classroom, whilst the rest of the class performed.

Not today though.

Our girl was Mary and she was brilliant!!
It was a two year groups combined production and everyone did fantastically. It’s not easy to stand up in front of people and speak/sing but all these SN children managed it, with gentle prompts and persuasion from the school staff.

What was so lovely to see was, with D’s fantastic memory for timings etc, she was gently instructing her classmates into position and went to fetch the baby for the manger before it was handed to her. So proud of her.

We went back to her classroom for a mince pie and orange juice afterwards and D was very happy, lots of people had told her how well she had done.

The best part for D was she’d been told she could go home afterwards so..we did!”

This was obviously from the build-up to
Christmas, it was wonderful.

D’s SN school are putting on a performance of “Joseph and the Amazing Technicolour Dreamcoat” just after Easter, D will be in the choir, it will be wonderful to watch.

Thanks for Jaime for hosting the linky x.

Squease inflatable deep pressure vests – Product Review

Recently we were offered the chance to trial a Squease inflatable deep pressure vest – click here to visit their website.

“Squease is an inflatable deep pressure vest that is hidden away inside a hooded top. No weights are used; hug-like pressure is applied to to the upper body simply by inflating the vest with air.

The vest is lightweight and may be worn by itself or zipped inside a Squease hooded top, making it discreet and mobile.

The vest is inflated by squeezing a hand pump, allowing the wearer to regulate and apply soothing pressure in everyday situations that may lead to anxiety, stress or sensory overload – whether that is at home, at school, or on-the-move.

For people with sensory processing difficulties such as many people with autism, who find dealing with change, busy environments or contact with other people to be highly stressful, applying pressure to the upper body may be calming, increase body awareness or improve attention and focus.”

These two YouTube videos explain how the Squease vest originated and how it works – click here and here to view. These are two separate films.

My first impressions:

The vest is incredibly light when deflated and because it works by squeezing an air pump (which if you have the Squease inside the hooded top option) is very discreet to inflate and deflate. The two pictures below show first a deflated and then an inflated vest.

How does it work?

Firstly set-up your pressure vest over a t-shirt or vest whilst standing. Fasten the Velcro side-straps so that the vest fits loosely, Squease recommends leaving a gap of one or two finger-widths between the front of the vest and the body.

To inflate the vest, simply squeeze the hand pump until the desired level of compression is reached on the upper body.

To deflate, press the air release button at the top of the hand pump and the vest deflates quickly and discretely.

The benefits we found:

D mastered the act of inflation and deflation quickly. I had to prompt her to inflate it when we were out-and-about in a busy environment and anxieties were emerging, but the compression benefit was instant and she likened it to “receiving a bear hug from you, Mumma”.

I really like the idea that the vest can be zipped inside a Squease hooded too, with the hand pump fitting into a pocket slot.

The Squease is available in a variety of hooded top/without hooded top colour and size combinations – click here to visit the online store – and the company are planning to introduce child sizes shortly, but to give an idea of adult sizing, the adult small fitted D very well, the Velcro straps enabling a perfect fit.

The vest (and optional hooded top) can be rented or purchased outright and a VAT relief scheme is available:
“If Squease garments are purchased for personal or domestic use by a chronically ill or disabled individual or are made available to a disabled person or persons for domestic or personal use, then we may supply the products at zero-rated Value Added Tax (VAT).

When you purchase an item online questions are asked through the checkout process assessing whether VAT is required. If you wish to pay by cheque or bank transfer then please fill out the form on the right and post it to us or email it to us.”

The company also offers a “Trial
before you buy scheme” – click here for details.

Would D and I recommend it?

Yes, definitely. So many weighted products are extremely beneficial but naturally extremely heavy, the Squease is lightweight and discreet.

I like the idea of trialling one first too.

Would we buy one?

Absolutely.

I’ll end with some pictures of a very happy D, wearing the vest. She instantly relaxed and felt the benefits and it’s something I’ll be looking to purchase once she’s finished her current (rapid) growth spurt.

Thanks for reading, comments/RTs/shares as ever welcomed.

Disclaimer: we were sent a Squease vest to trial for a few weeks. No payment was received and our views were our own.