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….!

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Ginger for Drooling

Cayla has been sick most of the week so had to cancel and reschedule all her appointments. We were due to start her post Botox intensive physio therapy this week but yeah, all cancelled unfortunately but we’ll start next week instead.
We have decided to cut back on Conductive Education and will concentrate on Cayla’s speech instead as this is definitely needed. She will be doing speech once a week at “Kids Are Kids” and also seeing a new private speech therapist every two weeks. Cayla’s speech is slowly improving and she has learned a few new sounds lately. She is saying ‘I love you’ to me about 50 times a day which is pretty clear and also very cute!
Her new speech therapist will be focusing on helping Cayla produce words with a technic called PROMPT. This is a speech and language-based technique that provides tactile cues to the lips, tongue and jaw to essentially help the patient feel what ”correct” placement feels like with each sound, in each word. I think this technic is going to be great for Cayla, just hoping she will happily go along with it without any fuss!

A little while ago I came across a website called TalkTools.com and they sell different packages with items that will help improving mouth, lips, and tongue control and speech clarity. Things like bite blocks, different shaped drinking straws, horns and whistles can all help with improving the oral musculature by promoting lip closure, lip rounding, tongue protrusion, and prolonged airflow pattern. We are already playing with blowing bubbles but haven’t tried horns and whistles yet so we went to a party shop and picked up a few things for us to play with today. Cayla loved it once she got the hang of it! So simple, lots of fun and hopefully very effective!
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Cayla is still drooling a bit and even though we have been given a liquid from our paediatrician we don’t really use it as it doesn’t work that great. I have been
recommended ginger chews from an American mum as this works very well for her son with PMG (polymicrogyria) but can’t find anything similar here in Oz. I don’t want the horrible crystalized ginger as it tastes yuk. This mum buys hers from an American company called Reeds but they don’t ship to Australia unfortunately but I have just found them on Amazon so will order them in due course. Always worth a try!

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Intensive Speech Therapy – NAPA Center

My head is full of things
to be researched or organised in some way and because I change my mind all the time it is difficult to make a decision…! So we have been looking into a non invasive surgery called SPML which is being preformed by only two doctors based in America. This would be a costly business for us and after much thinking we have decided to wait with the surgery as Cayla’s gait/walk is actually really good now after the Botox. She is putting her left foot more flat on the ground than ever before and it seems like she is even extending her left knee a bit better as well so at the moment we are happy with that. I am not loving the Botox and having to go to hospital twice a year but maybe we just have to deal with it as it seems to be working really well for Cayla at the moment. What we do know is that her speech is going to be a challenge (and hard work) for her so we have been looking at different ways to improve her it. Her speech is quite delayed and unclear, especially for people that doesn’t know her very well. We are still not sure if she has dysarthria or dyspraxia or a bit of both to be honest but maybe it’s treated the same way (?) and maybe it doesn’t matter after all? After reading some more online I am starting to think that Cayla might have Apraxia of speech which is also a motor speech disorder. Children with apraxia have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (lips, jaw, tongue) needed for speech. The child knows
what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words. Research shows the children with apraxia have more success when they receive frequent (3-5 times per week) and intensive
treatment. We believe that intensive speech therapy would really benefit Cayla but this is something that isn’t really offered here in Perth unless the child has gone through a major surgery. However, an American company called the Napa
Center
is offering three weeks intensive training and are currently doing two trips to
Australia (Gold Coast) a year. They send a couple of therapists and usually have 7-12 families to work with during the three weeks. The Napa Center provides many different types of therapy, one being speech therapy which we are really keen to do. You can
choose to do 2, 3 or 4 hours of therapy daily and you can mix it up by doing two hours physio, one hour OT and one hour speech for example. The Napa Center is now planning a 3-week training course here in Perth in October this year which is great
as we wouldn’t have to travel anywhere. I have no idea if Cayla will be up for 2,3 or 4 hours of speech therapy a day so it will be interesting to hear what the offer and what the program will look like. The cost is $6000 – $8800 depending on how many hours of therapy we decide to do. It works out to be about $150/hour which is the same price as we pay for private therapy here in Perth. A lot of money but as a few people have suggested already, maybe we could use our running and bike riding to help raise the money needed… lots to think about and I will keep you posted!

By the way, I would love a bigger size of this skirt (see picture) from H&M in Sweden for Cayla so if anyone happen to see it please buy me one in size 4-6 years – thanks! IMG_4627