Epilepsy Awareness Month

Hi everybody!

It is Epilepsy Awareness Month and I have come across a wonderful new website, Firefly Garden. It is a fabulous website that enables people to connect and communicate about anything special needs related. It is for anyone like parents, grandparents, therapists etc. It also features lots of wonderful blogs (including mine!!)

http://community.fireflyfriends.com/

As part of Epilepsy Awareness Month, I have a featured piece of writing on their website about our experience with Epilepsy.

Here is the link for the article below.

http://community.fireflyfriends.com/blog/article/epilepsy-the-sneak

Learning Resource Fun!

I am not a big crafty type fan but making resources at school for teaching was always good fun. It was a blast to spend a good few hours this weekend making resources for Thomas at a two day Parent Immersion Course through BLENNZ at the Homai Campus in Auckland. I missed my boy and he certainly missed me. It was delightful to have a cuddle, a smile and coo of recognition from my little man. Ahhhh so delicious!

I loved meeting, sharing, and connecting with lots of lovely, friendly, and open people at the course. Lots of hot topics to discuss like equipment or funding. Always informative learning from others going through a sort of similar journey. For the first 5 months of Thomas’ life, it was a lonely and confusing time because I didn’t know what Thomas’ difficulties were. It was a challenging, and often depressing time not knowing how to bond with a child who cried a lot and had little to no vision. I didn’t know how to play with or engage with him. I had so many ideas in my mind that I would romanticise about before I had Thomas like my baby looking me in the eyes, reading lots of picture books together or pulling funny monkey faces and big toothy grins. 

Since finding out Thomas has CVI from around 5 months onwards, I was able to learn new and different ways I can interact and engage with Thomas. I have written about the Sensory Room before in an earlier post which you can read about, but this was really where it all took off for Thomas. He really came alive. It stimulated him and enabled him to experience and explore his environment. This also allowed me to start to work through letting go of my romantic notions. 

It has been a real education for me to discover the delights that items such as tinsel, vibrating pens, beads, chains, pom poms, feathers, rippled cardboard, and bells can deliver.

Not only did I make some fantastic resources, I bought a few things too which you’ll see Thomas playing with. This is also the first time Thomas has used his tray for play. What a star!

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Resources I made

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This is a cat’s toy but perfect for Thomas to get his fingers through and hold on to!

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See look at him go!

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Not real grass hah!

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Some neat textures and sounds.

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I had a lot of fun making this book!

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Sparkly, shiny and makes a fabulous sound when moved on the tray. Thomas particularly liked the gold beads.

Thomas, he got skills!

Thomas has been working so very hard with his tummy time. It is truly amazing how hard Thomas and children with challenges like him work to learn how to navigate and coordinate their muscles to do what they want them to do. Conductive Education has made such a difference to me because it gives me ideas of how to help Thomas to work on certain goals such as gaining better head control. Recently Thomas has been working on guided rolling.

Normally Thomas has a bit of tummy time either elevated with a pillow/wedge or on the big gym ball. I have been easing him into tummy time on a flat surface and this happened. (Sorry it’s a bit fuzzy!)

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Then this happened…