The R Word

The R Word gets thrown around all the time, and most of the time people don’t realise how it affects parents and carers with special needs children. We really need more awareness around how it makes us feel and any children who understand that the word is being used to criticise someone.

The word always makes me cringe and makes me upset and angry all at once, hearing it spoken or just seeing it in print.

This article is a great read:

My beautiful sons are why you need to stop using the word ‘retard’
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How Variety Club has helped us

Just recently we have been funded some fantastic equipment through Variety Club, an iPad, and a Rockerski, which all have been a HUGE help in keeping Amara happy and calm. Which can be a hard task some days. without Variety club we would not be able to afford these items. I am forever grateful to them for their ongoing support 🙂

iPad arms/mounts to attach to any surface

Our lovely vision therapist from the RIDBC found this amazing iPad arm/mount for us a couple of years ago and we haven’t been able to use it as we only just received an iPad through the Variety program a few weeks ago.

I love this arm. it can be attached to most surfaces, wheelchairs, hi lo chairs, tables, and in the car to the headrest. It can be angled in any direction.

We can now try some switching iPad apps 🙂

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DIY all terrain chair – make your own beach wheelchair!

I recently just trialled a beach wheelchair when on holidays up the coast.
I was so impressed with how smooth it was on the sand.

I came across this website on one of the FB pages last week and thought it would be a great idea for families who travel a lot or were very outdoorsy.
You can hire them at some beaches, but you should ring ahead to make sure its available, and they aren’t really suitable for younger kids or someone who needs more support.
You could use this kit to convert something more comfortable into your own beach wheelchair.

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New piece of equipment that excites me!! The Rockerski

My daughter has received a new piece of equipment that I have been wanting for a long time!
Variety Club were very generous to fund this for her.

My daughter cries a lot for hours and we have no idea why and the only things that soothe her are cuddles and rocking, but she is now 20kgs and I am only little so I can’t do this all day long. I spotted this in the Wonderland Rehab Catalogue and knew it would be perfect for her.

It’s great, fits most hi-lo chairs, wheelchairs and best of all, its portable. Amara does spend a bit of time in hospital and she is even more unsettled there, so this is perfect as we can throw it in the car and keep her happy when she’s there.

Anyone with a child who is unsettled a lot will LOVE this product.

Little sister has already started helping with the rocking 🙂

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Cerebral Palsy Artist creates paintings with a typewriter!!

I saw this on FB a few times but never clicked on the article until a friend sent it to me.
Once I watched the video I was amazed at these intricate artworks that were created with a typewriting by Paul Smith who has Cerebral Palsy! It must take him days, weeks even to create these images and the patience he must have…

Watch the video to see how amazing he is!


Cerebral Palsy Misdiagnosed

I read this article yesterday and I am still gobsmacked about what happened to this woman!

She spent 30 years thinking she had Cerebral Palsy when she really had dopa-responsive dystonia (DRD), a rare muscle disorder that can be treated with one pill!!

She isn’t angry and doesn’t regret the surgery she had on her hips. My daughter had the same surgery when she was 2 years old and I remember the pain she went through and all I wanted to do was take it away for her. I am in awe of this woman, I know I would be angry and wanting to blame someone for the 30 years lost, but she doesn’t, she has no resentment or anger towards the doctor who made the mistake.

Read the article here: