Cerebral Palsy Alliance
Tova and I have recenetly returned from a 2 week therapy trip to Sydney. The therapy was located at the Cerebral Palsy Alliance
We stayed in a stunning apartment in Manly, which isn’t far from the CP Alliance. Tova, Nissim and I drove up to Syd with a quick stop in Canberra for a night to visit my brother and his family. Of course the second we pulled into the drive way, Nissim was out of the car and I didn’t see him till the next morning (cousins). Tova vanished with Auntie Veronica to the piano too. It was lovely
The second day of driving was fine. We drove through about 10 tunnels to get to Manly. I had no Idea Sydney was so beautiful. I’ve been there plenty of times for work in the past, but usually only to the city. This time I was exposed to more of Sydney and I’m blown away. The entire place is beaches, warm winters and forest. I just had no idea. It’s a spectacular place.
I think we arrived on a Saturday late afternoon. There were a few dramas with parking, we sorted them out and settled in.
Sunday evening one of Tova’s support workers arrived from Melbourne. She stayed with us for the first week and took Nissim home on Friday, back to Melbourne (school + commitments).
The first week was good for Tova. The therapy is all about play of course, as they all are. The therapists and helpers in the room with the kids were outstanding. Such lovely people. Tova was with Michelle for her time there and they created a lovely friendship bond. It was beautiful to see
The second week a support worker from Sydney met us every second day and hung out with Tova and Michelle. Why you ask.. why did Tova need a support worker, well.. Let me tell you. I work from ‘home’ which means I work from anywhere and everywhere I am. So I couldn’t spend my days with Tova in the therapy program, and the therapy program doesn't cater for kids that need toileting assistance, so yep, we hired someone to hang out at the centre in case she needed assistance with the bathroom. On the days that there was no support worker, I set up in an empty office at CPA and worked from there. It's a great building with lots of space to work from.
Since being back we've seen some improvement with Tova's balance and she learned how to colour in and build lego like never before!
We have also started music therapy and Phsyio once a week, which is so, so good for Tova, so good. Thank you NDIS. We are on the search for an OT, which she will start weekly too. It feels like Tova’s entire life is a fun intensive therapy program now, which is a game changer. It’s so good for her.
Tova has started grade 5. I've been feeling a bit sick about her being almost in grade 7 (I know, 2 years away, but time is going so fast and each year it goes faster). Most of the kids in her class are going to grade 7 next year. Her school doesn't actually work by grade, so many of the kids are older than her in her class. It's going to be strange for her next year when she's not with those kids, they've been in class together for years and years.
This evening Tova had a really hard time trying to fall asleep. She cried/whimpered for an hour. Yuval had checked her a few times and said that the noise of the crickets was really bothering her. I got her after an hour and she was so upset about the crickets, and then the bats started, and then the possums and Zev (our cat) has a really bad cough. omfg. I ended up running around the back yard, in the dark, telling all the wild-life to shut the f#ck up. Tova took the next few hours to fall asleep, in OUR BED. I understand that feeling, when you are trying to sleep but there is one annoying sound that is driving you nuts and you just can’t let it go.
Since returning from Adelaide we’ve noticed some really great things with Tova, such as her fine motor skills improving, her conversation/sentences getting longer and more complex (all in Auslan, mostly finger spelling) and I watched her throwing a ball to the dog the other day, it was amazing. I haven’t seen her throw a ball like that before. Oh and her telling us when she needs to go to the toilet has improved 100%, we are so impressed with her.
Tova is in this video a few times, pretty much anytime there is a piano/keyboard, that's Tova playing it. Also at about 0.57, I believe that's the back of her sitting with her buddies, probably talking about piano/playing piano. And 2.43ish on the trampolines
Last year (in October I think) Tova went on camp for 4 days. This was the longest I've ever spent away from Tova in her life. Three entire nights.
She had a ball!! No parents for 4 days. The lead up was a bit difficult for me. I was worried. About everything. To help me get over some of my worries, the two buddies that would be spending all their time with Tova at camp and the 2-3 team leaders came to our house various times in the weeks before camp, to learn all about Tova and her ways.
Let me tell you about these amazing buddies. HOLY CRAP, these kids have just completed grade 12 and fresh out of exams, they not only go away with a bunch of kids, they go away with a bunch of kids with additional needs. NOT what I was doing right out of grade 12. I wish I knew what they know. I wish I had done anything even remotely like this at that age. Their parents have so much to be proud of.
Tova participated in so many things I didn't think she would, and things she won't do with us, like go to the beach, stay in her bed and have fun at the pool! She did everything, and they said she loved all of it. I think having two 'servants' at her beck and call helped. I didn’t miss her, I felt confident and happy she was well looked after. Also the camp updated us each night with photos and a few words by text. Perfect.
A few months before that Nissim went on Camp SOCS which is the camp for Siblings Of Camp Sababa. This was the best thing for him. He got to meet lots of kids with brothers and sisters that have special needs and talk about it with people that ‘get it’.