Let’s talk about PECS baby! & Tippy Talk

I’ve had a fabulous day with Reilly today.  Reilly got up about the same time as the sun so I decided to get out and about early.  we stood at his pecs board while he tried to work out what he wanted to do (I was praying not the swimming pool for purely selfish reasons) after continuous pointing at shopping trolly’s and Toys r Us signs (not today Reilly)  I switched on my Ipad and showed Reilly photos of various places we would normally visit.  He chose the Tim Lamb Centre. A great place in The Rising Sun Country Park with tons to do for the little ones and a good chance to relax a bit knowing its none judgey and everyone get’s it.  30 minutes on the bus, 15-20 presses of the bell to get off a swift explanation to the lovely bus driver and we were there.

I met some lovely people today parents, teachers and kids.  It never fails to astound me how very different all these children are.  I had a discussion while eating my lunch with one girl around 15 about who was the best Paul McCartney (post Beatles) or David Bowie and watched 4 second clips on her phone of many songs from both artists, she had unbelievable knowledge and passion in equal amounts. ps David Bowie by the way no competition.  

I also chatted to a teacher who was there with a young man again around 15 who was completely non verbal.  I’m always fascinated watching people communicate and the methods they use to do it.  I often think about whether Reilly will always be non verbal and I prepare myself constantly looking for products that can help us.  I talked to him about a product I was trialling at the moment that may be useful to them.

I registered my interest in a product called Tippy Talk earlier on in the year.  I’d seen it on twitter and thought it looked fantastic.  Tippy Talk is an app which allows the user to translate picture messages into readable text.  What’s not to love here.

ttThe TippyTalk app allows a person with a verbal disability to communicate by translating pictures into text messages, which are then sent to a family member or care givers phone or tablet. This allows the person who is non-verbal to communicate and express a desire, want, need or feeling. This communication is not restricted by distance, the person they wish to communicate with can be anywhere in the world. TippyTalk also reinforces language development, by allowing a parent or caregiver record their voice over each picture. TippyTalk grows and evolves as the needs of your loved will also.

TippyTalk is unique in that it removes the person with the verbal disability from the isolation of same room communication. It also allows the parent or caregiver to capture images that are  uniquely familiar to the person using the communication app. No two TippyTalkers will be the same, each unit is extremely user friendly and simple to program. Putting the control back into the hands of the parent, after all no one knows their loved ones better than they do. No other product on the market today is offering the personalisation, social-communication and independence that TippyTalk is providing. TippyTalk is breaking down communication barriers by allowing the user to connect and communicate with two or more parties at the same time, while ensuring that this communication is not limited by distance or physical impairment.

Rob Laffan the creator contacted me after reading my blog and asked me if I’d like to trial it with Reilly.  He has a daughter just like Reilly so he get’s it. The verdict is I love it.  It’s so simple.  I have only just started teaching Reilly what it is all about and once he starts to really understand that his requests are instantly received regardless of whether i’m upstairs, outside or at the shopping centre I fear my phone may never recover from the constant messaging it’s going to receive.  I will video the whole process of Reilly using Tippy Talk and how the messages are displayed in real time.

Reilly can tell us he is sad, that he wants a hug etc.  I can see it being hugely helpful with simmering meltdowns when all is lost in the frustration of communication.

We need to be able to communicate.  Looking around the Tim Lamb Centre today it was a big melting pot of different methods. I NEED to be able to have a two way conversation with Reilly it’s all I think about  and I’d trade for a lottery win in an instant.  You will never know the pain of not knowing why your child is unwell or upset until you’ve walked in our shoes.  Tippy Talk will change that I’m sure.

There’s a free trial at the moment check the website for links to download.  No I’m not on commission, when I see a good product I’ll share it.

Watch this space for the video of myself and Reilly using Tippy Talk.  Previous video scrapped because it contained spontaneous nose picking followed by close up examination and tasting by Reilly. Still looked cute but not the production I was looking for.

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Is my little non verbal gerbil finding his squeak?

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The finishing line is in sight!  I dread the school holidays I even feel extra anxious as it draws closer not because the kids are at home (well maybe a bit, ok a lot) its the absolute carnage it causes when its time to go back.

I’ve been an absolute cop out this week and Reilly hasn’t been anywhere other than the park, there are times when I just can’t put myself into the inevitable situations that comes with going out and about with Reilly, sometimes  I just don’t have the strength. Probably a lot to do with the antibiotics i’ve been taking I’ve turned into a bit of a hermit.

Going a bit stir crazy I left Reilly with Thing 1 yesterday to nip to Aldi for some essentials, I sneaked out using all my stealthy tricks and managed to get away undetected, even remembered my bags for life.  I hadn’t even got past the pain au chocolats and my phone was ringing to come back.  Fail.

But this week so far has been highly enjoyable.  I don’t know why we put so much pressure on ourselves to get out and about when really you’d rather stick rusty forks in your eyes than negotiate the bus timetables and the judgey public.  It’s been really chilled out building tracks and tents, being a horsey, watching films which is pretty rare.  We have watched Cars 2 four times today, 5 times yesterday and always from the same starting point 8 minutes in. I love it when he watched films as he sits with his cheek pressed against mine, its snuggly and its loving and I don’t have to move for 1 hour 😉 Reilly has been high fiving his brother and even gave him a kiss so far so good.

My favourite part of this week is I have noticed how much more vocal Reilly has been.  Not with words obviously but with noises.  He came and got me today and led me to a fly in the living room and continuously said what I know to be shoo.  He is counting more with sounds so instead of 1,2,3 he is making nasal noises but at the right tune and my Mam and Dad swear he said ‘in there’ when bullying my Mam into her bedroom so he could sit with my Dad by himself for his nutella on toast. He’s done this before though where he has shown a little progress then its just stopped so I try not to get too excited, if I had a pound for every time i’ve said to Shane do you think this is it? do you think his speech is coming?  I’m so desperate for it I would give absolutely anything.

So late start to today as Reilly was up at 2am and didn’t go back to sleep until nearly 8am.  He appeared in my room wearing his blow up armbands for his holidays, lights on and attempting to jump from my window sill onto the bed.  Not his greatest moment but wish Id got a video :).

Roll on Monday.

Nickname this week :  Tyrion

Cups smashed: 4

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