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

Archive for the ‘Health’ Category

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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Ensuring T stays calm with the aid of the trampoline..

My children, although both diagnosed on the autistic spectrum, have separate calming and self-regulatory mechanisms.

For D, it’s drawing and colouring. She will draw the most incredibly detailed pictures (more of that in a later post) and the whole process really helps her.

For T, it’s the trampoline. I wrote about this here and it’s a must-have in the garden. If he could, he’d be out there in all weathers, bouncing with a ball and commentating. Sometimes it’s just a few minutes, sometimes it’s longer but it works.

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Last week was frustrating for him for a couple of reasons:
firstly, the weather, it started off nice and sunny and then we descended into typical-British-summer-time ie. rain and high winds.
secondly, the neighbours had children staying all week, children who would think nothing of shouting over comments about T’s choice of football shirt, children who would shout and scream “m i n g e r” at each other whilst bouncing on their side of the fence. Children who reduced T to tears when all he wanted was a bounce.

There are various trampoline tents on the market and I’ve heard conflicting feedback on them, I’m eager to get on in place for the summer holidays, one like this:

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But it’s a question of researching and of course, getting the funds together.

I had an idea over the weekend, something that’s working very well as an interim measure.

We had garden flags for the Olympics, Paralympics and Jubilee last year, as well as some patriotic flags knocking around, I’d attached them to the trampoline posts to add a bit of colour, I decided to attach them horizontally (tied and then stapled) around the trampoline area which is overlooked, a sort of you-can’t-see-me-so-I-can’t-see-you effect:

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And it’s working, T gave one of his happy, shy smiles when he saw the flags. He’s not a nosey little man, he’s got no interest in what happens on the other side of the fence, he just wants to bounce.

This will do until we can get our tent organised, I just wish I’d thought of it sooner.

Thanks for reading Jx

A bit of a brain dump

I don’t normally do this, so please excuse this mish-mash/brain dump. I’m
usually a positive soul but I’m so tired.

I think my body is telling me something, it’s been doing it for a while and I should listen to it. (Cue a bit of a pity party) In the last few weeks, I’ve had tonsillitis, gone head first down the stairs, had inflammation in my hand and all this combined with immense external stresses. I had the best night’s sleep in weeks on Tuesday and then Mother-flipping-Nature decides to (ahem) “visit” me a week early. Thanks!
I’m hoping that by starting with Curves soon I’ll start to feel better.

Couple all this with parenting two – very individual but wonderful – children with very different requirements, juggling CAMHS appointments, melatonin requests (which either get lost or are wrong), paediatric appointments and a timescale for a diagnosis needed, well….

Of course, I know I’m a lucky J really. Mr Bluecrisps is loyal, protective, hard-working man who I should appreciate more and not snap at. Tiredness and worries take over at times. I wouldn’t change my children for the world, but I would change the world for them.

I read a couple of things this week that made me quite sad; one referred to autism as a “terrible disease”. This implies to me contagious, curable. Autism is neither. My children will learn how to cope and manage in time – see post here – but autism is a life-long disability, not disease.

Then there was something else, an article in a UK-based magazine but with obvious leanings to overseas readers, talking about “autism prevention”. They discussed vaccinations and abortion, which really saddened me. One quick virtual slap later and it just makes me more determined to do what I’m doing, carry on in my own little way, trying to raise awareness and acceptance for everyone on the vast spectrum/who loves someone on there.

So, what is the answer? There isn’t one. I’m not on an ego-trip doing this blog, I blog relatively anonymously because I prefer it that way. I use pictures of the children – but their initials – to demonstrate that autism cannot be seen, it’s an invisible disability. If my blogging about the ups and downs of our day helps just one person then job done.

But I am switching off more in the evenings, trying to relax either by reading or watching something I wouldn’t normally watch.

Last night it was “Meet The Izzards”, a fascinating travel through time aided by Eddie Izzard’s DNA profile. The programme is worth watching for the tribeswomens obvious joy when they all received painted nails, it puts things into perspective and you can watch a link to T&D programme here.

I started this blog grumpily but I’m finishing positively. My children are healthy and, at this precise moment, happy. That’s enough for me.

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Panic attacks – the symptoms and how to deal with them

The last few days have really tested me, it’s not something I’ve mentioned in my diary blogs as they are predominantly to raise awareness of parenting children on the autistic spectrum.

We both feel like we are turning a corner/light at the end of the tunnel/whatever cliche is appropriate but I wouldn’t want to repeat the last six days and I hope we never have to.

Last night I had a panic attack. I didn’t realise what was happening until I was a couple of minutes into it and my first (and Hubbie’s) reaction was of panic – which sort of made it worse. I’m not looking for sympathy – I’m not like that – but I wanted to share the research I did following it, which details the symptoms and how to deal with one. Life is stressful at times, too stressful and I hope the following articles will be read and assist someone in the future.

The main things I remembered from reading something previously was to focus on your breathing (a bit like during childbirth), breathing into cupped hands and to realise that it’s not going to last forever (it doesn’t, but at the time, the feeling of not being in control is never-ending).

This is taken from the NHS website:

The symptoms of a panic attack can be very frightening and distressing. Symptoms tend to occur very suddenly, without warning and often for no apparent reason.

As well as overwhelming feelings of anxiety, a panic attack can also cause the following symptoms:

a sensation that your heart is beating irregularly (palpitations)
sweating
trembling
hot flushes
chills
shortness of breath
a choking sensation
chest pain
nausea
dizziness
feeling faint
numbness, or pins and needles
dry mouth
a need to go to the toilet
ringing in your ears
a feeling of dread, or a fear of dying
a churning stomach
a tingling sensation in fingers
shivering
shaking

The physical symptoms of a panic attack are unpleasant, and they can also be accompanied by thoughts of fear and terror. For this reason, people with panic disorder start to fear the next attack, which creates a cycle of living in ‘fear of fear’ and adds to the sense of panic.

Sometimes, the symptoms of a panic attack can be so intense they can make you feel like you are having a heart attack.

However, it is important to be aware that symptoms such as a racing heartbeat, or shortness of breath, will not result in you having a heart attack. Also, although a panic attack can often be frightening, it will not cause you any physical harm. People who have had panic disorder for some time usually learn to recognise this ‘heart attack sensation’, and become more aware of how to control their symptoms.

The symptoms of a panic attack usually peak within 10 minutes, with most attacks lasting for between 5 and 20 minutes. Some panic attacks have been reported to have lasted up to an hour. However, it is likely that the reason for this is due to one attack occurring straight after another, or high levels of anxiety being felt after the first attack.

Recurrent panic attacks

People with panic disorder have panic attacks on a recurring basis. Some people have panic attacks once or twice a month, while others have attacks several times a week.

People with panic disorder also tend to have ongoing and constant feelings of worry and anxiety. The panic attacks that are associated with panic disorder can be very unpredictable. If you have panic disorder, you may feel stressed and worried about when your next attack will be.

Depersonalisation

During a panic attack your symptoms can feel so intense and out of your control that you may feel detached from the situation, your body and your surroundings. It can almost feel as if you are an observer, making the situation seem very unreal.

This sense of detachment is known as depersonalisation. Being detached from the situation does not provide any relief, or make a panic attack less frightening. Instead, it often makes the experience more confusing and disorientating.

And some tips from an article in the Mail newspaper on how to deal with a panic attack:

10 tips for coping with panic attacks

One: If you feel a panic attack coming on and find you are breathing rapidly, breathe slowly in and out of a brown paper bag or cupped hands.
Although you may feel you can’t catch your breath, you are probably over breathing and taking in too much oxygen – making you feel giddy. A paper bag will help your oxygen levels return to normal.

Two: Change your lifestyle. Take regular exercise – this helps to burn off excessive adrenaline. Avoid cigarettes and alcohol. Eat regular meals and avoid processed foods and drinks, to keep blood sugar levels stable.

Three: Don’t attempt to fight your way out of a panic attack – this will simply increase the adrenaline. Instead accept the feelings will come and go and allow the symptoms to play their tricks as they will. Practise imagining yourself floating over them. Eventually the panic will subside.

Four: Don’t bottle up your emotions. Find someone to confide in, such as a family member, friend or counsellor.

Five: Focus outside of yourself during an attack. Listen to some music or do a pleasurable task while waiting for the panic to subside.

Six: Learn a relaxation technique. First close your eyes and breathe slowly and deeply. Locate any areas of tension and imagine them disappearing. Then, relax each part of the body, bit by bit, from the feet upwards. Think of warmth and heaviness. After 20 minutes of doing this, take some deep breaths and stretch.

Seven: Firmly tell yourself that your symptoms are nothing more than an over-sensitised nervous system. They are temporary feelings and are not medically harmful or dangerous.

Eight: Reduce your exposure to unnecessary stress. Be prepared to express your needs to others and assert yourself.

Nine: Look into cognitive behaviour therapy or other “talking treatments”. You can find a list of practitioners on the website for the British Association for Behavioural and Cognitive Psychotherapies (www.babcp.com).

10: Join a self-help group. You can find details through the No Panic charity freephone helpline on 0808 8080545. Also check the Mind charity website (www.mind.org.uk) and the NHS Best Treatments website for further help. Also visit http://www.phobics-society.org.uk for more information on anxiety disorders.

World Cancer Awareness Day and why I respect the Andre family

I don’t watch reality TV as a norm. Anxiety attacks a la “I’m a Celebrity”? My children face and conquer those every day going about their routines, meltdowns similar to “Celebrity Big Brother”? I care for and live with autism so, again, it’s all too familiar. Albeit for different reasons.

What I have been watching is “Peter Andre – My Life”, the second and third series have been showing in the mornings on ITV2.

I started recording and watching it as I wondered how the programme would portray Pete’s brother (Andrew Andre) and his battle with cancer.

If you generally read reviews of Pete’s show (Ian Hyland’s for example), it’s usually “Peter Andre (he loves his kids)” and it’s normally in a mocking tone.

Naively I also wondered – prior to watching – if Pete’s brother was happy to be filmed.

Having watched series two and nearly all of series three, I think Pete and his family have done an amazing job of raising awareness of a non-discriminator disease that will strike randomly regardless of age, gender, race and wellbeing.

The programmes showed the highs and the lows and all the adult family members were very open about their feelings, but at the same time very optimistic that treatments would reap positive results.

Watching the footage of Andrew meeting people, them telling him about friends/relatives who were also suffering and his positive responses were heart-warming, he wanted his journey to be told, to be open and raise awareness.

The fanbase who watch the programmes are no doubt more aware and open to discussions around cancer as a result, which can only be a benefit.

Unfortunately Andrew lost his battle with cancer – see article here – and my sympathies go to the whole family, to mourn in the public eye cannot be easy.

So, on World Cancer Awareness Day, I’ve got admiration for Pete and his whole family. They didn’t have to agree to filming some extremely personal family moments but they did and it can only benefit other families suffering with the disease.

And yes, his love for his children and his “Embolism” shine through, they’ve got a fantastic role model and extended family.

I think the next step would be for a Cancer charity to make Pete a patron, his profile would be a definite benefit.

Thanks for reading Jx 😘

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Step away from the laptop, Ms Jones

Yes, that’s right you, Liz Jones.

Put the lid down/click “shut down” and walk away.

You are becoming a mockery of what I used to read your columns for. I used to bypass the snide comments at your neighbours, the constant references to spending extravagant amounts of money of curtains (£16k?) but, at the same time, pleading poverty. The does-he-or-doesn’t-he-exist Rockstar boyfriend. But you were humorous, you aren’t any longer.

But what do I know? I’m a stay-at-home mum, a mummy blogger. One of those women you decided to attack in print, following your appearance at a Mumsnet gathering (LJ’s post here). At the time, I decided you were writing to get the “hits” onto your page and drew my own conclusions from accounts of the bloggers who had attended, who witnessed how unhappy you seemed.

And you are unhappy aren’t you? It spills out in every paragraph of your diary. How must your family have felt, reading what you write about them, about your mother?

And yet, you carry on, writing, alienating people. This time around, it’s those middle-class mums who have children in their 30’s (LJ’s post here).

Why Liz? What void are you filling by writing this? If it’s simply to get reactions and comments, well take-a-bow, you’ve hooked me.

You are constantly writing that people don’t understand you and would prefer you not to write about them…here’s a tip, don’t then.

Step away, turn the computer off, cuddle one of your many animals and TALK to a professional. Tell them about your failed relationships, your eating disorder, your empty womb.

Find peace with yourself first and you’ll feel better and maybe, people will read your columns and enjoy them again.

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World Cancer Day – February 4th 2013

There’s a date coming up that we should all be aware of:

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“World Cancer Day 2013 (4 February 2013) will focus on Target 5 of the World Cancer Declaration: Dispel damaging myths and misconceptions about cancer, under the tagline “Cancer – Did you know?”.

World Cancer Day is a chance to raise our collective voices in the name of improving general knowledge around cancer and dismissing misconceptions about the disease.

From a global level, we will be focusing our messaging on the four myths above. In addition to being in-line with our global advocacy goals, we believe these overarching myths leave a lot of flexibility for members, partners and supporters to adapt and expand on for their own needs.”

For more information on events planned and how you can help raise awareness on the day, please visit the World Cancer Day website here.