Wheelchair lego! 2 things that needed to be combined a long time ago

Lego has finally released its first wheelchair minifigure! I rejoice every time I see toys in the shop that recognise the disabled community as it helps our kids to not feel “different”.

Its all thanks to a petition which has more than 20,000 signatures.

Read the full article from ABC here:
http://www.abc.net.au/news/2016-01-28/lego-unveils-first-minifigure-in-wheelchair-after-toy-like-me/7122108

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A braille book library for children – Feelix library

I just got told about this service by my daughters speech therapist, the Feelix Library. They have “kits” you can borrow. Each kit contains the original picture storybook annotated with braille, an audio CD or DAISY recording of the story, some tactual aids to help the child enter the world of the story and a little handbook with tactile graphics so that children can tell the story to themselves or others.

The ‘Feelix Library’ for children is Vision Australia’s response to the need for very young children who are blind or have low vision, to have access to stories like their sighted peers. Parents and siblings can then share wonderful stories together with their child or sibling, and learn about braille. The echidna, called ‘Feelix’ is the symbol of the library, chosen because the echidna has poor vision with very good olfactory and tactual skills.

The name Feelix refers to the feeling of braille dots and the Feelix logo includes the words ‘I can feel the words’ in print and braille. Each child receives a small plastic echidna as their borrowing card – a tag is attached with their name and number brailled on it.

Library membership

Membership of the Feelix library is open to all young children who are blind or have low vision (aged 0-7years) living in the States and Territories where Vision Australia operates.

please see the link below for more details:

http://www.visionaustralia.org/living-with-low-vision/library/feelix-library

feelix-kit mum-and-child-reading

Turn your wheelchair into a rocking chair!

Lately my daughter has been crying all day long and the only thing that soothes her is rocking, which is hard to do all day long with another child. So I searched online to find an indoor solution to soothe her and found the “ROCKERSKI”

I love this invention! It can be folded down and packed away. Fits most standard wheelchairs.

In Australia it can be purchased from FAS.

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A lovely special needs poem

This poem always helps me when I’m having a crap day!

 

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Swings to soothe the soul

We all love swings, big and small!
When my daughter is having a bad day – and lately she seems to be having quite a few :(…. rocking motion seems to be the only thing that settles her, but she’s almost 20kgs, so my arms can’t take it for more than 20 mins! So the swing is our best friend, here are some great options I found.

Mexican style hammock, you could put a tomato chair liner or a gotoseat to help a child set upright if they need more support. A much cheaper option than most of the special needs swings. and also if you’re renting its a portable option. I like it for rainy days as I can move it inside.

http://www.zanui.com.au/Mexican-style-Hammock-and-Chair-Stand-Combo-Neutrals-2163.html?gclid=CObE2JmX4r0CFU0JvAodLTQA8g&wt_pl=au.pla.google.Swings.Tropicana%20Hammocks.NO105CH36DFF-2132&ef_id=UpubDAAAAdVCXC4M:20140415093026:s

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For a much more special option the Soothe-A-Matic XL Motorized Swing

Soothing Motorized Movement For Children And Adults

Helping folks enjoy life with proven sensory stimulation therapy
Six years in the making we have designed this piece of equipment for a wide variety of uses.
Comes standard with a Four Foot Cedar Porch Swing or our wonderful Hammock

Or choose from  these other swings.

  • Full Body JennSwing
  • Wheelchair Platform
  • Larger size for Bed or Hammock coming soon

http://www.newmexicoswingworks.com/soothe-a-matic-xl/

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Through the maze: a MUST have book for special needs resources

I was first handed this book when I had just found out my daughters diagnosis (Cerebral Palsy) and it helped a lot with resources, especially funding, which isn’t always easy to come across. My daughter is almost 6 and I still refer back to it.

Through the Maze covers the stages from diagnosis of a disability or developmental delay in childhood though to adulthood. It is a guide to the services available and a key to understanding the way the service system works. It is written by fellow parents of children with disability who have used many of the services outlined in the book.

NSW link here: http://www.acdnsw.org.au/index.php?option=com_content&view=article&id=122&Itemid=212
VIC link here: http://www.acd.org.au/information/ttm.htm

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A mothers invention to help her child walk – Upsee

A friend posted this yesterday and I LOVE it! I am waiting to see if they will ship to Australia and if it will fit my big girl!
What a brilliant invention and hats off to the mother who has made this happen.

The Upsee allows infants and small children to stand and achieve repetitive walking training with the support of an adult.
It includes a harness for the child, which attaches to a belt worn by an adult, and specially-engineered sandals that allow the parent and child to step simultaneously, leaving their hands free for play and other tasks.

Read the full article here:
http://www.dailymail.co.uk/femail/article-2588157/Harness-hope-Invention-mother-wheelchair-bound-son-helps-physically-impaired-children-walk-time.html#ixzz2wv6tbf1E

website to register: http://www.fireflyfriends.com/

 

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G-tube button pads, peg protectors

I found these online when my daughter got her peg and love them!
They keep the site clean and they can be washed and reused. They have saved me a lot of money as we started out using gauze from the hospital.
It’s great for keeping any tissue granulation under control and keeping the button nice and snug.

I also get asked about something to stop your child from playing/pulling on the button, so I’ve included a band/protector also.

They ship pretty quick from the US and you get a free wash bag on your first order.

Individual 2.5 inch G-Tube Pads Singles

Washable and Reuseable G-tube pads Sold in sets, or build your own. Single pads are made with flannel fabric on the outside with one layer of warm and natural batting in the middle with a plastic snap.

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G-tube/PEG tube Protector/ Belly Band

The G-tube/ PEG protector is made out of swimsuit/dance material. It is nice for protecting the site from having the tube /PEG pulled on. It is also a nice protection from hands that like to play with their site. Pull on.

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you can order them form here: http://store.juliasgtubepads.com/