Conor’s AAC Adventure

Conors first AAC appointment

On Tuesday we had our first AAC appointment with a Specialist Team that came down from Dublin to meet Conor. The appointment was arranged by a HSE Speech and Language Therapist. She had been working with Conor at school and nominated him to be put forward to the Team for assessment.

(On the day of the appointment I asked his Speech Therapist how the Nomination Process works and she told me that every SLT under the HSE is entitled to nominate one child in their care for the Specialist Training. So if you have a child who you feel may benefit from Assistive Technology contact your Speech and Language Therapist and insist on their nomination. June 2018 was the first time ever I had heard about the Specialist Team or the fact that a child could be nominated.)

I recieved a call from his Speech Therapist last June, just before his Autism Unit finished for the Summer to let me know the nomination had been accepted and that he would be seen in October/November by the team! At the time I did not know myself what assistive technology really meant but I researched it and found a lot of information online about it. I have created a short post about What is AAC and you can find a link for it at the bottom of this post. I plan to create a series of Posts about our AAC journey  and will be creating additional informative posts once I have had more time to research it in the future so keep checking back here and also on our Facebook page where you can find videos of Conor using the device. 

On the day of the appointment we were met by Conor’s original SLT who had just returned from maternity leave and also the SLT who was working with him last year (and who nominated him for assessment). Together we met the Team which consisted of two Therapists (I am omitting their names for their privacy). 

They (the Specialist Team) spoke to Conor generally at first to assess his receptive language understanding. They used his PECS book to ask him what he wanted to do (they had various fun activties on the table). He chose bubbles so they put aside his PECS books and took out an IPAD Pro with a safety cover on it. It looked HUGE! 

LAMP 

The Ipad had an APP running on it called Lamp Words for Life. The APP can be downloaded directly from the APP store and is only accessible on the IPAD and not the Iphone or Ipod. It is also only available from the US APP Store so you may have to change your settings to access it. The APP right now costs $299.99

LAMP (Language Acquisition through Motor Planning) is an augmentative and alternative communication app that relies on motor planning to assist people who do not use verbal communication as their primary method of communication.

Most every other AAC app is text and/or image-based, LAMP is designed around a consistent placement of the tiles/icons, so the action, or motion, of saying something becomes familiar. The Icons and their placement will not move so it is easier for the user to learn how to use the APP most effectively. 

AAC

The icons do not change so it makes it much easier to set up and use as it requires so little customization (although you can customize it if you wish- the Specialist Team we met on the day do not recommend customization of the app at all.). It uses Icons and Text but what is most important about this APP is that the icons/images do not move. 

There is a Vocabulary Builder tool within the LAMP APP and I really like this because this is where you can mask(hide) as many icons as you want when you are initially teaching your son/daughter how to use the APP for the first time. You can set it up to show/hide as many icons as you want. 

In Conor’s case on the day of assessment the Therapist had ALL icons showing as she said straight off the bat Conor was able for it. She said depending on the child’s ability and understanding she would sometimes hide many of the icons and just have possibly 4/5 icons to begin with so the child would not be overwhelmed. 

In time as your child would become more familiar you would start adding in more icons building up their LAMP vocabulary. The fact the icon positions do not change mean your child will always feel comfortable knowing where they are. (Consider a keyboard on your laptop, you always instinctively know where the keys are without looking). 

Everything remains familiar with the APP so the child learns quickly where the icons are and this gives them more confidence in the APP and in their own ability. 

The APP allows you to:-

  1. Edit pronunciations
  2. The Menu within the APP is password protected so your son/daughter can not alter it.
  3. Edit/Alter the several voices that there are to choose from including pitch and speed.
  4. You can choose whether to activate buttons on contact or release
  5. Back-ups of the content is built in
  6. There is a Facebook group and Twitter feed you can network with

You can find out more information about LAMP here.  

Conors AAC

Conor really enjoyed using the device and took to it so easily, I was nearly in tears. He was so so excited that we all understood what he wanted to say and started roaring laughing! It was the happiest I have seen him in so long! 

The other great thing I noticed is that during the assessment while using the APP Conor was actually trying to sound out the words!! If you go to my Facebook page and watch the videos, listen carefully and you can hear him “speaking”! I was so proud of him for trying so hard! Thats the GOOD news, now for the BAD news – Read on.

NO FUNDING/IPADS

Once the assessment part of the appointment was over. The Specialist Therapist recommended the LAMP APP for Conor and said although she has used proloquo2go, she would recommend LAMP before it. 

I was delighted etc and asked how do I get it? She told me you download it from the APP store but that the Speech Therapists from the HSE could get a professional Trial version through the HSE. The Speech Therapists from the HSE said they had NO FUNDING for this and that in fact they had NO IPADS of their own to use!! I was dumbfounded as essentially a Specialist appointment has been arranged for Conor, he has been shown how to use the device and is able to use it etc but the very Therapist who provide his therapy have no IPADs themselves to learn from or teach Conor or obtain the training from themselves! It was the most ridiculous thing I have ever heard not to mention pointless for Conor!

So I asked the Specialist if she could send me all the training information directly to me as it doesnt make any sense why she would send the training information to his Speech Therapists who have no devices or funding to download the APP! Absolute madness! 

So she has agreed to send an additional copy of whatever she is sending to Conor’s Mayo Speech Therapist for me. I will pay for the APP myself and learn how to teach him myself. I am dumbfounded at the “service” he is relying on to learn to speak/use an exceptional APP when they have neither funding nor even an IPAD between them. I am absolutely not taking aim at the Speech Therapists themselves, they work as SLTs for a living and have their own lives to fund etc so I can’t expect them to fund what is needed for Conor out of their own pocket, I am sure they themselves feel so frustrated that at every turn they are blocked from helping children like Conor who so badly need a chance in life! 

The Therapists themselves are very kind and professional and I am SO thankful Conor was nominated but as a parent to hear that, was very disheartening and again reminds me as a mother of a child with Special Needs you are on your own! If you don’t speak up for your child or help your child no one else will. 

So where we are now is I am going to buy the APP myself for Conor and use his “work” Ipad. My father in law bought Conor an Ipad for his Speech Therapy work we do at home with him and with his ABA Therapist Keira Keogh. His “work” ipad has no other Apps on it but educational and he is not allowed to use it for relaxation etc. 

The Specialist Therapist recommended that this was the perfect device to use. She also recommended to start off with short bursts of fun activities, like using the APP for requesting things he really likes and for use with Story Books, asking him questions or having him press “turn” on the ipad so that the page cannot be turned until he uses the APP. 

If you have read all the way to here, well done! I know it was a super long post. I have more information about LAMP that I think it important to share. This post is super long so I will write up an additional post about LAMP and also some excellent information I recieved from another Special Needs mom who uses the device. 

If you want to find out more information about AAC in general you may find the post AAC Communication helpful. 

What is AAC

I would love to hear if your child uses AAC devices/APPs how you are getting on and what you would recommend! Leave a comment down below what you have found works or hasn’t worked for you or your child. 

 

Amanda 

  

 

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