My Conference Presentation – AGOSCI Biennial Conference

Next Thursday I am continuing on my journey and will be doing a 30 minute presentation at the AGOSCI Biennial Conference at the Hilton Hotel in Sydney.  AGOSCI is a group who represent people with complex communication needs.

It is a great 3 day conference full of interesting and informative sessions on various issues concerned with complex communication needs.  These vary from communication methods and devices to saliva control and mealtime assistance.

My presentation covers our AAC (alternative and augmentative communication) journey, what has worked for us, what hasn’t and how the use of the Ipad is helping successfully connecting her to the community.

I discuss how our AAC journey began with our daughter’s diagnosis of severe verbal dyspraxia and the introduction of signing at 18 months.  Since this time we have tried PODD communication books, boardmaker/PEC pictures, Dynavox M3, which is a voice output device and enabled her to have an audible voice, through to today with the introduction of a communication app on her Ipad. I discuss her Ipad communication app, called Touchchat, and how I have personalised the app specifically for her to enable greater chance of success.

Our daughter at the age of 11 years has only about 15 spoken words.  However she is a very competent communicator through the use of her spoken words, signing, gestures, expressions and her Ipad.  If one of the methods doesn’t work then she will attempt another.  Usually with success.  She is very good at getting her message across.

If you are going to be at this conference I would love to meet you.

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‘Welcome to Holland’ read Part 2 – (a decade on) by anonymous

My daughter is now eleven so I also found the passage “Welcome to Holland Part 2” by Anonymous, says a lot of what I feel and have experienced. I believe my journey has made me a stronger person and made me grow into a totally different person than I would have been if my daughter didn’t have special needs.  After having her I have changed jobs and now work as a teachers aide helping children with special needs and their families, a job that I love.  I am now also writing this blog, doing presentations at conferences and trying to make a difference and help other people that are at the beginning of their journey.  I have learnt to enjoy the smallest successes of my children and enjoy life to the fullest.  Her love of life is infectious…

“Welcome to Holland (Part 2 )” by Anonymous

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I’d planned.

I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn’t so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I’ve wondered what life would have been like if I’d landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its’ tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn’t matter where you land. What’s more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn’t planned. Yet I am thankful, for this destination has been richer than I could have imagined!

The Passage ‘Welcome to Holland’ Changed My Life

My daughter with special needs was around 6 years old when I got diagnosed and started treatment for Post Natal Depression.  Yes I had been living with it for 6 years.  It was an extremely hard time for me and my family.  At one of my counselling sessions I was told to read the passage, “Welcome to Holland” c1987 by Emily Perl Kingsley. All rights reserved

It changed my life. It helped me understand that what I was feeling was normal for what had happened to us.  That my daughter being born with special needs made our life different but by no means less.  Since this time and through the help of my wonderful family and friends my life is fantastic.  I have learnt to enjoy our ‘Holland’.  Please read and share with your friends.  Even if you don’t have a child with special needs it may help you understand how we feel.  It may also help people whose lives have gone in a different direction then they had planned. 

“Welcome to Holland” c1987 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Imagine being non verbal – How Would You Communicate?

Imagine not having speech to communicate.  My daughter often amazes me with her determination and the way she overcomes the challenges of her disabilities.

She was diagnosed with a metabolic disorder called Galactosaemia when she was 7 days old.  We were told that there would be a chance she would have speech issues so when she wasn’t making any babbling noises or speech by the time she was 10 months and in fact she wasn’t meeting any of her milestones at this stage we were concerned and got help from a local centre and a combination of therapists became involved in our lives to assist us.  This included a speech therapist and shortly after she was diagnosed with severe verbal dyspraxia.  Her receptive skills are relatively normal in comparison to her expressive skills and we have always talked to her appropriately for her age.

If we want to say something we just SAY IT.  We don’t think about it, the words just come out without much thought.  Image if you didn’t have the vocabulary to tell people your thoughts, needs or wants.  What would you do? How would you behave?

Our daughter started displaying worrying behaviours when she was about 18 months, before this she just cried a lot but now she started hitting herself and others, pulling clumps of her own hair out, head banging and yelling.

After having a meeting with our Speech Therapist it was decided to start teaching her sign language to try and alleviate her frustration.  We started Makaton Signing (now Key Word Sign) where she learnt just basic signs to start with being help, more, ok, yes and no which we increased over time.   We saw an improvement in her behaviours nearly immediately and she became a much happier girl.  This was the start of her communication journey.

Over the years we have tried other methods of alternative communication including PODD books, Dynavox M3 (voice output device) and picture cards.

She is now 11 years old and is still predominately non-verbal.  She has about 15 words which we call survival words.  These include, Mum, Dad, yes, no, car, an important one for kids Santa, ok and a few others.  We call these survival words as they can get her a long way in a conversation.   Her receptive language is quite normal and we talk to her like we would talk to any 11 year old.  She still yells when she is not getting her way or when she is frustrated but her other behaviours have nearly disappeared.  Occasionally, through frustration she will still act out.  But I empathise with her as it must be hard to have your thoughts and feelings trapped in your mind and not being about to get them out.  Or you can only get your thoughts out in summary as you haven’t got access to all the words you want to say.

Imagine having an expressive language base of 15 words yet the receptive language base of around 11 years.  That is quite a big difference between what you want to say and what you are actually able to say with speech. How does she overcome this?  She is actually a fantastic communicator and people who meet her are amazed at how well she can get her message across without speech.

She does it by being multimodal.  She combines all of the skills she has learnt together to say what she wants. She uses her survival words with a lot of emotion, body language and gestures.  She also combines these words with her signing.  She would now have over 100 signs in her vocabulary.  If you still don’t understand her she will either take you or show you want she is talking about or she will just make you feel stupid and incompetent as she puts her hand up and raises her eye brows always with a smile though.  Basically saying “don’t worry about it”.

It’s not often she doesn’t get her message across.  She is amazing.

We have now also introduced an iPad to her for communicating.  We are using an app called Touchchat after consultation and assessments by her speech therapist and we are setting this up for her to be able to communicate in the wider community and to be used in situations where signing isn’t an option for her as not everyone knows it.  She is loving her new device and is starting to incorporate it with her multitude of other communication options.  She may not be able to speak like us but I think she has a better understanding of the fact that communicating means more than just speech it is the incorporation of a number of different methods all used together to get a message across.  She is a master at this.

We are so proud of her.