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


She’s got a place!!!!

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….!


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!
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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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.
physio Wize

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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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!

Happy New Year!

So it’s nearly the end of 2012 and as everyone else I can’t believe how fast it’s gone by! We have had a great Christmas holiday so far as we have spent most of it in our new swimming pool! It was installed and cleaned just in time for the crazy heat wave we currently have here in Perth with the temperature hovering around 40 degrees!
I have spent the afternoon going through all the appointments/activities that we have had with Cayla this year and will take a moment to reflect and review…

We started year 2012 strong with Wheelie Big Challenge 2011/12 which saw its end in March. WBC is a year-long fundraising challenge where the challengers set a target and try to reach it. We didn’t start Cayla’s challenge until late October last year, about the same time I went public with my blog and it all changed for the better for us that month. With the enormous support from friends and family around the world we reached our target of $1000 within 3 days and had no choice but to increase the target to $2000. In the end we/Cayla raised over $4000 which all went towards the Early Intervention Programme at The Centre for Cerebral Palsy here in Perth. This is where Cayla receive most of her therapy, hydro pool sessions, foot splints, post Botox physio therapy, playgroup and parent focus group etc. All the services are free of charge which explains the importance of fundraising. This year we decided not to fundraise but to concentrate on therapy for Cayla and also getting her ready for kindy next year.

Cayla has had two Botox injections this year and both went really well, the last one in particular as it was so quick and easy. Both times saw her left heel come down on the floor and we have done lots of physio therapy and stretching to improve her posture and gait. She started of with one fixed and one hinged AFO but at the review in February it was decided to change the hinged one to a fixed AFO as she wasn’t quite walking with a heel-toe pattern but was collapsing the midpart of her foot on the right one as well. I was gutted but nothing to worry about really as nothing will stop little Cayla from running, climbing and being as active as usual. The fixed AFO was later changed to a hinged one and even though it didn’t bother me when it was fixed it is really nice to see how much better she is able to move now as it gives her a little bit more flexibility compared to a fixed AFO. She is wearing the AFOs 4-6 hrs/day but it is also very important with time without the them, especially activities such as climbing, playing in the sandpit etc. Cayla is still seeing Megan from TCCP for all her physio therapy as we think she is great :)

Other therapy includes conductive education (CE) which we did in a group environment at Carson st school for a few weeks but now we only do CE one on one in a private practice. CE in Cayla’s case involves a lot of balancing core strength and stretching activities. Similar to what we do with Megan, maybe a bit more forceful but still in a fun way.
Feldenkrais is another type of therapy that we recently started with Cayla which I think is great. It’s a very gentle approach which through touch is loosing up tight parts of Cayla’s body and help her move more freely. We are also using the Inervention Method (elektrodress) 3-4 times a week and that helps with reducing the spasticity in her leg.
The elektrodress is working really great and I can’t wait for the actual outfit to come out on the market soon.
So all of these methods/therapy help Cayla in different ways. The AFOs help with the prolonged stretch and also forcing her to walk the ‘right’ way from a young age. This is important as the ‘toe walking’ will most likely create problems higher up such as knees and hips which may mean surgery later on. Cayla has never had a problem with wearing her footsplints and I am pretty sure she knows that they keep her more balanced and stable, in particular as the Botox is wearing off and her heel comes off the ground making her more unstable on her feet.
The Feldenkrais method works from the other way as it is softening her torso, hip and thigh area creating more opportunities for movement and improved gait.
Physio therapy and Conductive Education both helps with strengthening her body, improve balance and coordination, and maybe most important; helping Cayla doing things as any other kids would do such as kicking, running, jumping, bike riding, putting socks and shoes on and off, getting dressed and so on.

Then we have speech pathology. Cayla is doing speech on a weekly basis both through TCCP and privately closer to our house. Our speechy Avril from TCCP is helping us with activities to do with Cayla and her “talker” (vantage lite) and hopefully it will improve her speech. But what is important to remember is that Cayla understand pretty much everything we say to her, it is her expressive language that is delayed. She is saying more and more words every week but the clarity is not great even though we do understand her most of the time. Just hoping that her friends at school will too after they get to know her!

Cayla’s left hand doesn’t seem to be affected but we still decided that a prekindy run by occupational therapists was the best option. It has basically been a whole day full of OT activities, everything from fine to gross motor skills. Cayla wasn’t toilet trained when she started which wasn’t a problem at all for the lovely staff at Ability Plus. Unfortunately this prekindy has recently closed down which is such a shame but I feel lucky that Cayla had nearly three terms there and learned so many new skills.

On top of all this therapy we have had two Botox injections, eye check-up, hearing test, genetic consultation and testing, hip x-ray, family meeting, lower limb and foot clinic review, serial castings x 8, orthotic reviews, casting for new AFOs, meetings with our pediatrician Dr Langdon, meeting with the neurologist Dr Williams, meetings with staff from Cayla’s school next year and lots of hydro therapy sessions at the centre. I am also doing a sequence of pressure point technics on Cayla’s face every day plus stretching her foot twice a day
As I have recorded everything I can tell you that we have been to more than 150 appointments over the year! That is a lot of driving for sure! Not to forget that we spent nearly 8 weeks in Sweden with no appointments at all..!

Wow, a bit of a long post this time but it’s been great to reflect and review the last 12 months, what has worked and what hasn’t. I look back at this year and I DO feel that we have done as much as we possibly could which makes me really pleased! We are still trying to understand how different therapy works and how it will benefit Cayla right now and for the future. This is important to me as the more I understand the more motivated am I to make time to do it! We are doing a lot of ‘stuff’ every week but if you ask any mum or dad of a child with special needs I am sure their lives are the same more or less. Appointments and therapy becomes a part of your life. Stretching, AFOs and training is what we do every day because we have to. We are not special parents or stronger than anyone else, we just don’t really have a choice. I would do anything to help my kids which I’m sure most people I know would too.
However, I will take the opportunity to give all mums and dads in similar situations, whatever disability, a big hug and a pat on the back! :) I have through this blog been in contact with parents from different parts of the world and I hope that some of the information provided has been helpful in any way. What I write is not scientific and maybe not even 100% accurate all the time..!? But this is our story, our personal journey through the maze of cerebral palsy, PMG and the rest.
A new year is waiting around the corner, hope it will be a great one with lots of love, laughter and good health!

Lots of love
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Cayla prekindy cayla rain

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Cooling off in the sprinklers at Masters!

Pressure Point Technics

Dribbbbbling……  is one of the things that I worry about, especially as Cayla will be starting school next year. It is quite common in kids with cerebral palsy and it is not due to an overproduction of saliva but is usually related to abnormalities in swallowing, difficulties moving saliva to the back of the throat, poor mouth closure and so on.
I’ve also recently read somewhere that a lot of children loose control of saliva and drool as they are developing control of gross motor and fine motor movements which makes sense. Drooling is however quite normal in kids under four years of age but if it continues beyond that it may be due to very low muscle tone or physical disability. Swallowing can contribute to drooling if the person doesn’t swallow frequently enough or if the swallowing is not effective. This seem to fit in with Cayla and there are a number of things we can do to help.
One is something called pressure point percussion techniques. This is meant to help reduce high tone/tension in the face, stimulate muscles control and increase lower jaw movement which may benefit Cayla as she is apparently quite stiff in her cheeks. It involves doing a sequence of different pressure points in Cayla’s face and is too be repeated 5-7 times/day. Before we do this we are going to massage her cheeks and face muscles and mobilise her lower jaw by moving it side-to-side and then forwards and backwards. We are also to encourage Cayla to hold a small soft toy between her chin and chest. This exercise will stretch her neck muscles, allowing the retracted position of her jaw, forward movement…… I have only just started to perform this sequence a couple of times a day but I am not mobilising her jaw… I have no clue what I’m doing so will leave that for the pro’s! Not sure if it will work but hey, I will give it a go.
We have recently met with our new speech pathologist Avril from TCCP and I am very pleased. Even gave her a hug when she left the first session at our house…! Not sure why actually.. just one of those weird things but I really liked her and think she will be a great help to improve Cayla’s speech. She has set us some goals with the Vantage Lite (Cayla’s Talker) so hopefully we will use it a bit more as it’s been a bit so and so up until now… Cayla is not overly keen on using it so it does demand a bit of encouragement and of course consistency from our part per usual.

Below are some photos from this year’s Special needs children’s X’mas party in Mirrabokka. Everything from rides to ice creams, cuddly animal farm to fairy floss was free. The kids were given great pressies from Santa so all up a great morning.

Crazy Busy

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.

Vantage Lite

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.

Back to School

The Summer holiday is coming to an end and man it’s gone quick! We usually spend heaps of time playing and swimming at Point Walter but somehow we’ve only been there one day!! Guessing that Cayla’s appointments and therapy are taking a lot more time than I originally thought. Never mind, it’s been a nice holiday and great for Nathan to sleep in and just chill out instead of stressing to school in the mornings. But that is about to change because on Wednesday it’s time to go back! He is starting year 1 which is really exciting. I have washed his uniforms, bought new shoes, marked all the pens, scrap books and all the rest that he will need for school this year. It takes ages to mark every little pencil and crayon etc… Any better way of doing this please feel free to share!!
We have also bought a new bag and lunch box as required by the young man himself. Both kids have been sick the last couple of days but we made a short trip to school today just to check out the class lists and Nathan’s new class room. He is very excited and so am I ;)

Cayla will be going to playgroup and hydro pool sessions at the centre (TCCP) plus the usual physio and speech therapy sessions. She has also got a spot in the ‘My Time’ program through Carson St School. This class is all about getting them ready for kindy next year so it should be lots of fun! We are currently on the waiting list for the ‘Talkabout Program’ at the Telethon Speech Centre as all the classes were full.

Below is a mix of what we have been up to this holiday. All photos taken with my iphone, some of them by Nathan…! :)

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