Cayla’s Speech

Cayla is talking more and more and unclear words are becoming a little bit easier to understand which is great! I love listening in when Cayla is playing with her older brother Nathan. Being her brother he does understand her pretty well but it’s also because her words are becoming more clear which is pretty exciting. Even though she can say quite a few clear words now it seems to be more difficult for her to put them together in a long sentence. Sometimes she chats away and it sounds like Japanese, really cute but we can’t understand a word!
Because people are fundraising for TCCP every year children with cerebral palsy are able to receive equipment needed to help them do more ‘normal’ things and it make their lives just that little bit easier. Nearly two years ago Cayla was lucky to receive a device called Vantage Lite, we call it her ‘computer’. Some of you may know what a Vantage Lite is but for you that don’t it’s a device (size of an iPad) with 84 different pictures. Different picture combinations make up a range of words and sentences. This device is Cayla’s voice when people can’t quite understand what she is trying to say. Last year TCCP secured a huge grant to help children using different AAC system (argumentative and alternative communication) with extra therapy sessions to help making them more confident and efficient in using the device at home and/or at school. Cayla has recently received the first block of these intensive therapy sessions with senior speech pathologist Sue Suter from the TCCP’s cp tech department. Sue reported that even though Cayla is not using the device all that often she is picking up new words and word combinations very quick which is a great start. IMG_7045Because Cayla is verbal we don’t use it at all at home but we do bring it to school every day. Cayla’s teacher and the speech pathologist at the Language Development Centre have recently been trained in using the device and hopefully they will find it useful in the classroom. Ideally we want Cayla to be able to speak on her own without the use of a device but right now we can all see that it can be a great teaching and assessment tool for a range of activities at school. Things like telling her weekly news and what she has been up to over the holidays and so on.
Some very exciting news is that Cayla has been accepted to a 5-day camp in October! It’s a camp for children using a device such as the Vantage Lite and the whole family is invited to come along. There will be plenty of experienced staff at the camp and lots of things for the siblings to do so I’m pretty sure it will be lots of fun! The camp is called Motor Mouth Camp and is sponsored by Variety. You can find more info here.
There are no short cuts, Cayla’s speech is improving slowly but she will need to go to speech therapy for many years ahead. We practice sounds, tongue movements, lip closure, words and sentences and so on every day. The Language Development Centre is truly an amazing school with a range of programs in place to help children with speech difficulties. Socially Cayla is such a happy and lovely person who easily make friends at school. She is just like any other 5-year-old girl with a love for pink, Barbie dolls, dancing and singing. She loves helping out in the kitchen, taking her little soft toy dog “woof” out for a walk in the stroller or standing on our bed singing to herself in the bathroom mirror. She is still drooling a fair bit and we use the scarfs pretty much every day. It gets worse when she’s concentrating or working on different speech sounds and with only 12 kids in the class they work them hard! But saying that Cayla absolutely loves going to school and ringing the bell is very exciting and fun job! IMG_7192IMG_7190IMG_7266

 

Finally School Holidays

It’s been ten weeks since the kids went back to school which means it’s time for two weeks of school holiday – yay! I have never been so happy to have a break from the usual routines than now… we’ve had lots of new routines with Cayla starting her new school and a bit of a change to our after-school activities. We have finally managed to get Nathan (nearly 8) to start doing a team sport… Well, he did play indoor soccer for a while 2-3 years ago but didn’t really enjoy it much. Since then he’s started scouts and continued with his swimming lessons once a week. Both Mike and I really believe that playing a team sport is important so we decided to give him a gentle ‘push’ in the right direction a few weeks ago by taking him to play outdoor soccer. He liked it and we couldn’t be more happy! However, this means he is now doing scouts, swimming and soccer which takes up 4 days of the week plus matches which will start from the 13th April..  oh well, we’ll see how it goes and if we have to drop an activity. He played his first game of soccer this morning and even though they lost (3-4), they had a great time!
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Cayla is only doing swimming once a week which is enough for her now when she’s started school full-time. I’m so impressed with her school and all the different programs they use for the students in all areas of learning and social activities. What’s more important is that Cayla absolutely LOVES her new school. She gets upset on the weekend as she can’t go to school.. hope it stays like that forever!
She was awarded an Honour’s Certificate a little while ago for settling in well to her new school and working very hard in her speech sessions. She didn’t know about the certificate and was really surprised and happy when the principal called out her name. She had the biggest smile on her face when she was standing on the stage with the other kids who was awarded with certificates. Super cute and we were of course super proud! I really hope she gets to stay at this school until year 3 which is the last year they can attend before they go back to their local main stream school. The first term is all about assessments and each child will be given a comprehensive IEP (Independent Education Plan) with individual targets and goals to work towards. We’ve just had our first Parent Meeting and she did score really low in most of the tests and assessments.. But that is to be expected, otherwise Cayla wouldn’t be at this school.
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We have had a crazy busy weekend with two birthday parties, baby shower, soccer game, and running/cycling training. My alarm went off at 4.20am…. can’t say that I love getting up that early in the morning but once I’m out there running, it all make total sense! I have completed ten weeks of Michelle Bridges 12 week advanced lean and strong program. I feel much stronger after all the weight lifting and it’s been great to try something out of my comfort zone. I’m about to buy some new running shoes but for some reason I find it really difficult to part with my old pairs…. what’s with that? Too many good memories maybe?? Or just weird?!?
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Target Reached!

After the school’s Free Dress Day we have reached our fundraising target of $2500 for Cayla’s Wheelie Big Challenge! Woohoo! Thank you all so much for supporting us in this worthy cause! 100% of the funds will go towards the centre’s wish list which means very important mobility, communication and sleeping aids for children with Cerebral  palsy! Last year Cayla was given a communication device called Vantage Lite, this is a very expensive piece of equipment that will make a huge difference to her speech and language. It also means Cayla will be able to take part in more, if not all, activities at school :D
Even though we have reached our target we will continue our fundraising another couple of months. Mike still has his big bike ride “Hell of the North” coming up in September and we have also signed Nathan up for his first Duathlon in October! A duathlon is like a triathlon but without the swim part. He will run 500m, cycle 1.5km and finish with a 250 run. Hoping he will really enjoy the race, the medal and of course to raise money for Cayla and other kids with cerebral palsy :)
I have had four weeks of rest and slow running to recover from the Perth Marathon and feeling ready to start the hard training again. I am doing the City 2 Surf 1/2 marathon with a friend end of August and also signed up for Tough Mudder which is 21km full of crazy obstacles such as ice, mud, tunnels, walls, monkey bars, electrical shocks…..! I’m doing this in a team so should be a fun but tough and crazy experience for sure!
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I would love to run another marathon and have decided to get some coaching to improve both my form and time for the next one! The Running Centre (TRC) is offering this type of coaching and I had my first ever group interval training session yesterday morning. After warm-up and running drills we did 1600m fast running x 4 with two minutes rest in between and I remember thinking holy cow…. am I actually paying someone to run this hard….and in pouring rain..?? But luckily I felt better after a while and finished strong, did a quick stretch and then home so Mike could leave for work! Next group session is short intervals tomorrow and hopefully the crazy storm will stay away and that I will remember my Garmin watch so my coach can check my progress.
It’s the second week of school holidays and we are really enjoying lazy mornings combined with swimming lessons, play dates, movies and some fun local kids activities.
Cayla has had her assessment for the application to the language school done and her speech pathologist will now write a rapport to go with it. She probably won’t get a place next year but that’s ok, we are happy for her to stay at Jandakot Primary School as we think it’s a great school! She is making good progress and we just love hearing her saying ‘Nathan’ all day long, so cute! Her new private speech pathologist is really great and we are very happy that she has taken Cayla on as she usually only works with kids with dyspraxia.
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Cayla’s Talker

Cayla’s speech pathologist from TCCP has made two visits to Cayla’s school to introduced them to Cayla’s “talker” (Vantage Lite) and demonstrated how it can be used in a classroom environment. We are bringing it in every day and I know it will be a great tool when and if someone doesn’t quite understand what she is trying to say. It can also be used to test if Cayla knows her shapes and colours as she can’t say them as clear as other kids.
photoYesterday they used it for Cayla to answer questions about me for Mother’s Day. Apparently I am 12 years old, my job is to bring Cayla to school, my favourite drink is coffee and favourite program is cartoon..!  Some of the kids wrote wine for their mum’s favourite drink.. so funny!

Her “talker” is her ‘voice’ when needed and will help her speak and communicate with her friends. The teacher and EAs are having problems understanding Cayla sometimes and once the language becomes more complex I think she may struggle.  We’ll see what happens, one year at a time. We will soon start the application process and testing needed to enrol Cayla to the Language Development School for pre-primary next year. This will take her speech pathologist at least 15-20 hours of work for as there are quite a few reports to be completed from the tests.
I have finally made a letter to Cayla’s friends at school, or maybe more to their parents. I was quite happy about the letter and hopefully they will find it useful and come to me with any questions about Cayla or cerebral palsy.
Today was the last day of first term and we are all very ready for a break! Even though we have to go to TCCP and Orthotic Solutions for Cayla’s serial casting and AFOs a couple of times over the next two weeks it will be nice having some time chilling out at home. Cayla was given lots of art and craft for her birthday so we have plenty to keep us occupied. Nathan’s birthday is coming up soon so I better get myself organised with his chosen theme “spooky Scooby Doo”! Have a great weekend!

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