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. Because 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!
Sorry for the bombarding of posts today….. but I just opened our mail and found out that Cayla has been offered a place at the Fremantle Language Development Centre for Pre-Primary next year!!! I did NOT expect that at all so feeling both surprised and happy…! We have been so pleased with Jandakot Primary School this year and would happily seen Cayla continue on there. She has an amazing teacher and great EA in Kindy but at the same time, a school such as the Fremantle LDC is going to be fantastic for Cayla! It offers an alternative way of learning for kids with severe speech and language delay/difficulty from Kindy up to Year 3. After that they will go back to mainstream schools.
I had a meeting with Cayla’s speech pathologist Avril at TCCP yesterday and we were discussing how to incorporate a specific program to teach Cayla how to read and write by using her ‘talker’ (Vantage Lite) along with the normal school curriculum. Avril has spent a considerate amount of time and effort to find resources that can help us with this which I am ever so grateful for. I said to her that if I win the lottery I would hire a speech pathologist to work with Cayla on a full-time basis to really help her with her speech and language… and today I receive the letter from the Fremantle LDC in the post…. I pinch my arm… I cannot believe that she has got a place at this school wow….!
So I have registered to run a full marathon.. and I am scared and excited at the same time and hoping it will all come together on the day…..!
I have been training pretty hard over the last 5-6 months and is now following a Marathon Training program. I have registered to run the Perth Marathon on the 16th June which is only about seven weeks away..! It’s a pretty flat course running along beautiful Swan River so should (!?!) be a nice run and hopefully not too cold and windy as it will be winter here in Perth!
We have decided to once again take part in an event called Wheelie Big Challenge (WBC) which is organised by The Centre for Cerebral Palsy (TCCP) here in Perth.
This is a year-long event where people become ‘champions for cerebral palsy and challenge themselves to achieve something remarkable. The champions decide on a fundraising target and then do a variety of things to achieve it such as organising a fundraising event or perhaps running a marathon! We learned about Cayla’s diagnose in February 2010 and that was the first year we decided to take part in Wheelie Big Challenge and raise money for the very important Early Intervention Program (EIP) as a thank-you to TCCP for all their help and support. With the help of our families and friends from all over the world we raised an amazing $4400 in just over four months! These funds went towards the purchase of a number of important items on centre’s Wish List for children in the EIP program such as early activity systems, switches and toys and different types of walkers. The aim of this program is to provide therapy and support for children from the earliest possible time to ensure that they develop, enhance and maintain skills both in their home but also at school. Actions such as rolling, crawling, standing and walking, which are all essential to childhood development and quality of life, can be very difficult for some children with cerebral palsy hence the importance of accessing specialised equipment early on in life. Last year Cayla was able to get an AAC system (Augmentative and Alternative Communication) called “Vantage Lite” which is helping her with her speech. Without funding it wouldn’t be possible for everyone to purchase as this small but important piece of equipment costs about $10,000…!
Cayla’s dad Michael and I have picked up running and cycling since we learned about her diagnose of cerebral palsy and will be doing a variety of races throughout the year to raise funds for The Centre for Cerebral Palsy.
I started running on a treadmill at home about 18 months ago after realising that going to the gym for my usual classes just wasn’t going to happen due to Cayla’s all therapy and hospital appointments. I really enjoy running and last year I completed two half marathons, but running a full marathon (42.2km) is certainly going to be my biggest physical challenge in life so far…! Mike started bike riding end of last year and has a couple of races in the calendar over the next few months all around 80k and the “Hell of the North” (135km) in Lancelin on the 15th September.
We are kicking this year’s Wheelie Big Challenge off with “Joondalup Half Marathon” and “Kalamunda Bike Ride” both in the morning on Sunday the 19th May.
No doubt we will be training hard in the next couple of months and we definitely need your help and support! Feel free to get in contact with us if you would like to join us for any rides/runs as we would love to have you on our team!
If you would like to show your support and help us reach our fundraising target please click on the link and make a fast secure online donation!
All donation over $2 are tax-deductible! Please feel free to share the link to Cayla’s fundraising page with friends and family, all donation are greatly appreciated, large or small! http://www.everydayhero.com.au/cayla__beach
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. Yesterday 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!
Hello again! It’s been a while since I wrote anything but as it is school kids holidays at the moment I decided to just chill and hang out with Nathan and Cayla. I can’t believe that it’s less than one week until they are back at school………! It’s been great to have time off from lunch boxes and after-school activities. Everyone is going well and we have already been to 21 therapy sessions with Cayla this year, not sure how it will all go once she is at school but we’ll work something out. I bought Cayla a uniform for kindy and she is super excited!
Physio therapy at the beach, Nathan is digging down Cayla’s feet in the sand and she has to lift them up! Nathan has had lots of fun this holidays at Cayla’s different therapy appointments! Here doing Conductive Education with Illdiko and speech at Skillbuilders.
We have spent a lot of time at both Bunnings Warehouse and Masters lately and the kids loves cooling off in their sprinklers getting absolutely soaked! Here they are performing a rain dance :) Physio therapy:
So we have done a lot of physio therapy and seen both Megan (TCCP) and also Jodie from Wize Therapy. Jodie was the first person we took Cayla to shortly after we received her diagnose two years ago and she did Cayla’s first serial casting as well. We did see Jodie quite a bit in the first year but we ended up being so busy with therapy, hydro and other things at TCCP that we had to give it up for a while. Since Cayla is about to start school I wanted to make it a bit easier for us to take her to therapy sessions so decided to go more local instead. Jodie is a great physio therapist and Cayla was really happy to see her again! We have decided to do the next lot of serial casting and post Botox therapy programme with Wize Therapy this time. Hopefully that will make it easy to fit in with Cayla’s school hours as well as reducing the time we spend in the car. We are also seeing Megan from TCCP on a regular basis which will be great. Cayla is definitely due for some Botox soon, she is quite tight in her hamstring, calf and ankle. We are doing a lot of standing on her wedge and other stretches to help with that. We are also focusing on active stretches such as bike riding, walking in sand and jumping on a trampoline. These type of exercises will not only help with getting her left heel down but also to improve her strength and balance.
Over the Christmas period I have had a bit of a think about Cayla’s speech and what her difficulties actually are and how we can best help her. I did some research online and learned that she can have either verbal dysarthria or dyspraxia, both very common in kids with cerebral palsy. I have been told that she probably has a bit of both but more towards dysarthria. I will explain a bit more about these two motor speech disorders in another post but in short; a child with spasticity in their muscles of their body will usually have spasticity in their speech muscles too. This is called spastic dysarthria. Speech of this type sounds slow and laboured, speech sounds imprecise and possibly slurred. The other type of speech difficulty is dyspraxia. This type is also neuromuscular in nature and caused by a difficulty with planning and coordination of speech sounds.
I felt that it was important to me to have Cayla assessed and properly diagnosed and I was keen to develop an appropriate treatment program based on this in the near future. I had a chat with our ‘new’ speechy Avril as I felt that all we did was focusing on Cayla’s talker (Vantage lite) and that she had not done an initial assessment of Cayla yet. Fortunately Avril felt the same way and she explained a bit more about both these two motor speech disorders and we decided that she would ‘start over’ and do some testing on Cayla at the next session. The testing was a type of comprehension test and Cayla did remarkably well, I was so impressed. However I don’t think Avril could score her properly as Cayla had to have eight errors in a row and she never did before our session time run out..! But hey, I know that my little girl understands so much more than people around her might get. Just because she can’t talk very well certainly doesn’t mean she doesn’t understand! That will be the main point to bring to Cayla’s school I think.
To sum up; We will start to incorporate some more key signs at home as we know that this has been successful with Cayla before. However, not everyone around her will know sign language hence the importance of another AAC device (argumentative or alternative communication). We will also be using Cayla’s talker (Vantage lite) as I think it will be a valuable tool both at school and at home in the future for Cayla to get her message through and eliminate frustration.
Cayla is soon due for new AFOs and a review at TCCP Lower Limb clinic. Her next Botox should be happening in March sometime and as usual some serial casting after that. We will also continue doing both Conductive Education, hydro therapy and Feldenkrais. Cayla is also to start horse riding in the near future which should be fun!
Other than that we haven’t really done much more but chilling out at home in our new SWIMMING POOL! Woohoo! It’s been awesome and the kids are loving it. The company cleaned it just in time for xmas and now both paving and fence is done. We also decided to exchange our dry boring lawn for a green soft fake lawn and it looks awesome! We got to show it off to our friends when they all came over for Australia Day and everyone had a great time :D
Nathan has lost his first front tooth and he’s looking really weird! Where is my little boy I wonder?
Nathan and Cayla has met with their first cousin – Imogen Lee Beach, she is so little and super cute! Big congratulations Pete and Kirsty!
Time is flying and we have been crazy busy lately! Father’s Day, birthdays, sick kids and Nathan’s yearly Sports Carnival at school. He did amazingly well this year and it was such a nice day as well – Go Team Blue! Thanks Jacqui for taking the photo below.
Cayla has had another accident involving her mouth…..
They were brushing their teeth one morning and had a bit of an argument about something, Nathan pushed Cayla and being quite unbalanced she fell to the floor with her toothbrush in her mouth…. Lots of blood pouring out of her mouth and I immediately thought she had smashed her front teeth as one of them was already a bit wobbly from her fall a couple of months ago… But luckily all teeth were good, she must have stabbed the inside of her cheek pretty bad. She ended up with a very sore and swollen cheek that turned blue/purple for a few days. But the doctor has ensured me that she only damaged soft tissue and it’s all good… phew… Note to self: Be very strict with ‘sitting down whilst brushing teeth’ rule, particularly when rushed in the mornings to get to school on time!
On a better note – Cayla is officially out of nappies! Woohoo! I still pinch myself as I can’t quite believe it happened so fast. One thing less to worry about before she starts school next year :D
I’m back in to full swing training and loving it. Mainly running but also Bikram yoga and the usual body combat class at the gym once a week. The Bikram Yoga is growing on me and I really like it. Some days are really hard and others I feel great. I am so not a flexible person so I can see that it will be a good complement to my running. I’m using my treadmill for interval and hill training and find it really good. One hour goes
surprisingly quick when doing interval training on a treadmill, much faster than just running the same speed the whole session which is rather boring.
Did my first City 2 Surf with a few girl friends a couple of weeks ago and had a great time! But with about 45,000 people running/walking I have to say it was a bit too crowded for my liking. We only did the 12k but might do the 1/2 marathon next year :)
I have recently had my birthday (27th ;)) and received some great pressies from friends and family; voucher at Garden City, bath bombs from lush, chocolate, gorgeous necklace, subscription for a running mag, running top and socks, and from my very nice hubby – a garmin forerunner watch! I’m still waiting for a parcel from Sweden that seems to have got stuck in customs.. but hopefully it will be delivered soon.
As some of you may remember we compleated a 6 week trial session using a communication device called Vantage Lite a couple of months ago. This trial was very successful and we have recently received funding to get our very own device and Cayla is now a proud owner of a pink Vantage Lite! We wanted to get going with some new goals straight away and have therefore met with Lesley, one of the speech pathologists at TCCP recently. I’m not sure how many sessions we will do but usually they offer a block of sessions over a couple of moths which should be enough for us to get a good start and some guidelines. Most of the work/therapy is being done at home anyway but it’s good to touch base and have a session with a speech pathologist now and then so we can access Cayla’s progress and set new goals accordingly.
Cayla is also doing ‘speech’ every two weeks at Kids Are Kids . These sessions are fun and playful but at the same time fairly structured with ‘home work’ each time. This method works well for us. Cayla’s speech is definitely improving, she can say just under 100 words and is starting to put not only 2-3 words together. Her speech is not amazingly clear but we understand her most of the time and hopefully the clarity will improve as she gets older. At the moment we are only focusing on more single words and putting words together. I have read somewhere that a child must have between 80-100 words before they can even start thinking about putting two or more words together.
As we now know that Cayla’s speech is something we will have to work on we have decided to use some of our Better Start Funding to purchase an Ipad. The Ipad is offering a different approach towards improving Cayla’s speech compared to the Vantage Lite “talker” which is a more a tool for learing language the right way. She will bring her “talker” when she starts school next year. We believe that both these devices have a place to improve not only her language but also comprehension.
Kids learn by playing and having fun and there are a whole bunch of applications out on the market that we find really useful.
There are lots of educational and fun applications for kids with speech delays for the Ipad and we have been playing around with some of them during Cayla’s speech pathology sessions at ‘Kids Are Kids’. She absolutely loves playing on my Iphone so doing stuff on an Ipad is even more fun! I thought I would bring this up with our speechy Susan at TCCP to see if an Ipad is something we could possibly get funding for. One thing led to another and we have now been in contact with Joelle who works for a department at TCCP called CP Tech. CP Tech assists people with cerebral palsy to gain greater independence through the fabrication of equipment and technology options. Joelle agree that the Ipad is great and lots of fun for kids however, she recommended another Augmentative and Alternative Communication (AAC) system called Vantage Lite. AAC refers to any system a person uses to communicate in addition to or instead of speech.
Vantage Lite is a speech generating device with a colour touch screen and digital voice. It’s made up of lots of pictures (60 in Cayla’s case) and different picture combinations makes up various words. We are trialling this device for the next 3-4 weeks and if we believe it’s improving Cayla’s speech and level of communication then we’ll hopefully get to keep it. Cayla really enjoys using it and usually only needs a verbal prompt to use it. Her goal for the trial period is to learn the motor pattern for five words – GO, EAT, PLAY, HELP and WANT.
She already knows them and many more such as breakfast, cereal, toast, fruit, apple, banana, grapes, animals, dinosaur, lion, zebra, monkey, sleep, bed, rain, mummy, daddy, Cayla and Nathan. So yeah, she seem to pick it up pretty fast :) I was worried that a device like this would make her not using her own speech but research shows the opposite and the other day Cayla said the word ‘help’ and also did the key sign for it.