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

 

Back Again!

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!

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Physio therapy at the beach, Nathan is digging down Cayla’s feet in the sand and she has to lift them up!  Blog January_2Nathan has had lots of fun this holidays at Cayla’s different therapy appointments! Here doing Conductive Education with Illdiko and speech at Skillbuilders.       Blog January_4Blog January_9
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 :)  Blog January_12kidsen pa masters 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.
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Speech pathology:
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 IMG_3507Blog January_15
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Outside  IMG_3915
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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!