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Willow's Story

Posted Dec 18, 2013 - 9:00am

By Sallyanne McShane

A big part of my journey with Willow has been communication. I starting signing with Willow when she was nine months old, but it didn’t seem to be sinking in. I got nothing back from her, nothing at all. I remember writing back when she was two, that “woohoo!” She signed ‘biscuit’.

So we just kept giving her biscuits, and she then learned that the sign “more” could get her more of anything. Suddenly it just all clicked. By 2.5 she had over 500 signs. It was just amazing!! But she still only had a couple of vowel type noises.

Just before turning three she said her first word: “Mummy.” Bless her; it was the best reward I could ever have asked for after all those countless hours of therapy. However things weren’t progressing very fast and we still at had no idea why she couldn’t talk. We started to look at other ways of communicating. A year ago when Willow was three and a half, we got a new speech therapist, who changed our lives by introducing us to the world of AAC (Augmentative & Alternative Communication) devices.

To start with I was very much, “my child doesn’t need this she is starting to speak!” Yes, only seven words, but it was starting. We trialed a few different systems and found the L.A.M.P. (Language Acquisition through Motor Planning) system worked wonderfully with Willow and we started trialing a Vantage Lite device with the help of the Communication Access Team at St Giles, with great success. I noticed that a few weeks into the trial Willow had gained a lot of new words, especially words we were working on with her “talker”.

At first, we got a lot of pressure from people who didn’t understand why we were using the AAC device, and people often said it will stop her talking. I worried, “what if they were right?” I just didn’t know! It felt like I was being thrust into a whole different world, part of it was that it was a very physical sign when out and about that my child was “different” that my child was “disabled.” I wasn’t ready to accept that yet. So, after a couple of weeks there I was handing back the device saying “we don’t need it she is starting to talk”…

And do you know what happened then? Here progression in speech not only stopped it started going backwards! I realised, it was the talker that was helping her to speak! So back to the CAT (Communication Access Team) I went, a little embarrassed, but more importantly, with a new determination and the confidence that this was the right thing to be doing. So from then we jumped in with both feet and it has been a wonderful journey!

Willow is taking to it so well and everything we are learning on it comes through in her verbal communication. We put “- ing” words in the talker and quickly she started using “- ing” words in her speech. We started using plurals, adding “s” onto words, and lo and behold she starts to use plurals in her verbal language! The beautiful thing is it’s not fluid or easy for her - you can actually see her pause and then think of adding that ‘ s’ onto ‘dog’ when she sees two dogs.

In November last year on Willow’s fourth birthday, she had an MRI. It showed “significant” grey matter heterotopia in her left frontal lobe and even more in her right, plus other patches in other areas of her brain. This means these are areas where there are actually no neurons, therefore no brain activity.

Willow was then classified as having a “speech disorder”; seeing as her brain is missing some of the areas where speech comes from. Again, now I knew I had made the right decision to use the AAC device and L.A.M.P as we don’t know how her speech will improve or what gaps she will have as she grows. Her “talker” will give her the ability to talk at the same level as any adult if she needs it when she reaches that age.

Just after getting this diagnosis and being told that seizures are a major part of this condition Willow began to have many seizures on almost daily basis. The seizures leave her with speech that is unintelligible even to me, who understands 90% of what she says. I believe the motor planning (new skills) she has learned to use her talker must be in another area of her brain; as she can still use this device even when her speech and walking have been effected by a seizure. To me this is just simply, priceless.

Now, some people may read this and think that all this is sad and tragic, but not us. Willow inspires us every single day. She is a cheeky, funny, loving and happy little girl who brightens our day and anyone’s who is lucky enough to cross her path. My immediate family’s world has dramatically changed for the better since Willow came into our lives and we have met the most amazing people. I have also encouraged my older daughters to turn their worry about Willow into something positive and they have done this and more. They are now avid fundraisers for many different causes and the best big sisters anyone could dream of having. I wouldn’t have things any other way and am so excited about watching all my girls’ blossom on their way to becoming amazing young ladies.

(Part 1. of Willows story was published in the May 2013 PEPTalk edition, where Sallyanne (Willow’s Mum) shares her personal journey on a quest to ensure that Willow is enabled to reach her full potential in life. Back copies can be sourced from the ACD Head office).

What is LAMP? Language Acquisition through Motor Planning (LAMP) is a therapeutic approach based on neurological and motor learning principles. The goal is to give individuals who are nonverbal or have limited verbal abilities a method of independently and spontaneously expressing themselves in any setting.

LAMP focuses on giving the individual independent access to vocabulary on voice output AAC devices that use consistent motor plans for accessing vocabulary. Teaching of the vocabulary happens across environments, with multisensory input to enhance meaning, with the child’s interests and desires determining the vocabulary to be taught.

The LAMP approach was developed by utilizing motor learning principles along with the Unity® language system for the treatment of nonverbal individuals who use an augmentative device to communicate.

When LAMP strategies were used with nonverbal children with autism, they were found to increase the ability of the children to communicate spontaneously in any environment using unique combinations of words to express themselves. It was often noted that as communication skills improved, social engagement increased, problematic behaviors declined, and some individuals exhibited increased verbal speech.

Why LAMP?

Individuals with autism may have dysfunction in motor planning and sensory processing which are addressed with this approach. The LAMP approach continues to be enriched with the emergence of new information in neurology and motor learning and through the successes and struggles shared by parents, therapists, and emerging communicators. We are learning together! As a result of intervention using the LAMP approach, it is hoped that the individual will gain the ability to independently and spontaneously communicate whatever they want to say.

Learning a language takes many years for the neurologically typical individual. LAMP is not a cure. LAMP is a method for providing an individual with a language system that can progress from first words to fluent communication. Many individuals using the LAMP approach have demonstrated success with some becoming very communicative and some increasing the amount of their verbal speech.

For more information on LAMP visit The Center for AAC and Autism.


Communicators In Action