Toys

Welcome! This cloudy, rain pending morning I have changed two poopy naps followed by eventually lighting the fire and polishing off a coffee.

I have been updating the Resources page to include more useful websites I often visit. I only add websites to this page that I truly believe are worth spending time exploring. Check it out >>>>>> Useful Resources

These days I find it tricky with Thomas not napping during the day. He dropped his day naps shortly after turning 2 many moons ago. I find this surprising considering he has had significant brain damage. (Grade III brain bleed) I had it in my head that he would require naps to re-fire his brain from over-stimulation or ‘neuro-fatigue’. It has been the opposite for us. Thomas requires lots more stimulation whether it be auditory, kinaesthetic or oral. Yes, he still loves to bring things to his mouth! Lots of nerve endings getting some TLC! Personally, I don’t mind this because it encourages him to use his arms and hands more which is great physical therapy in itself. For a long time there, Thomas wasn’t able to get his hands near his face and so it is exciting that he is starting to get better at moving his hands towards his face. This encourages him to explore his face too.

During the day Thomas will enjoy listening to nursery rhymes or stories on his iPad. We have to encourage different positioning throughout the day so he will either spend time on the floor, in his gravity chair, wheelchair or standing frame.

He attends kindy three times a week, 2.5 hours a day. This is as much funding that the MOE (Ministry of Education) will give us even though I have stated I want him to attend more. Getting a third session required getting more people involved to make it happen. So although there is such a thing as 20 hours Free ECE, Thomas does not get anywhere near this amount because he requires a support worker (Teacher Aide) additional to this with him at all times and this is the funding that the MOE is not willing to provide on a needs based situation. So this means that we cannot take advantage of the full 20 hours. I am beyond frustrated with this.

Is this discrimination you wonder? Yes, it is. Is this happening to other children around NZ? Yes, it is.

Thomas also attends weekly hydrotherapy swimming lessons in Whangarei. This is the highlight every week for him. He continues to improve his swimming skills each time we attend. Thomas is a member of the Cerebral Palsy Society and they provide vouchers for physical therapy. This is what we use our vouchers for.

Thomas is wearing his fantastic new flotation device from Water Gear. It is the safest device that we have come across with the most even distribution of foam support. Using a life jacket, we found that it was safe but too much foam was situated around the trunk area that made it difficult for him to remain vertical in the water. The waterway babies neck ring was great up until last year. We found that as Thomas became more and more physical, he would dunk his head in the water taking in the water. This became a safety concern so we went hunting for a more appropriate flotation device which resulted in the above.

That’s it from me today.

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!