The Big Change

Nearly 5 years ago we decided to change our lives.  We sold our beautiful big house we had built.  We got rid of the big mortgage that we could only just afford.  I gave up my job that I liked but didn’t love.  I decided to follow what I was passionate about and that was using the knowledge and experience I had gained through having my beautiful daughter with special needs and help other families that were at the beginning of their journey or helping those who may not be quite coping and need a little help or just someone to listen to them.

Firstly, I enrolled at TAFE and started volunteering as a Teacher’s Aide.  I realised very quickly how much I loved this work.  The following year I gained full time employment at a local mainstream school as a Teacher’s Aide for Special Needs students.  I now love going to  work and find it really rewarding as I am able to use my knowledge and skills I have gained to help the students as well as to help the school with the way they deal and understand families, as I am able to give an insight as a parent of a special needs child as well as a teacher’s aide.  I also love being able to assist the families of the students.  They love being able to talk to someone that they know understands their concerns and issues and that can emphasise with them.  Sometimes they just like having me to unload to knowing that I won’t judge them.

This year I have decided that this isn’t enough. I want to do more and help more families.  I have done a presentation to support service providers from a parent’s point of view and also a presentation on our AAC journey to assist speech therapists understand the journey from a families point of view and to assist other families to hopefully motivate them to keep going with their journey and to not give up.

I have started this blog to share our family’s stories, share some tips along the way that I hope you find useful and hopefully to help others who may be in similar circumstances to us.

Today I had a very rewarding day, today we had the first meeting of my newest endeavour, iChat My Way.  It is a fun social group in the Newcastle area for people with complex communication needs, like my daughter, who use alternative ways to communicate (AAC) like iPads, photos, pictures, signing and gestures etc and their carers.  It has been developed by myself and Kim, a speech therapist that I met through my presentations and at the AGOSCI conference I attended in May.  We realised there was a need for a group like this one and I am very pleased and proud to say we have put our thoughts and ideas into action and the group now has an identity and has had it’s first meeting. Please read my next blog entry which will tell you all about our meeting and I will share some photos as well.  It was very rewarding and lots of fun.

The Future Looks Brighter

During our lives we meet inspirational people who change our outlook on life and on the future.

This has been happening to me this year while I’ve been doing my presentations and sharing our daughters story in relation to her disabilities and mainstream schooling and her communication journey.  I’ve met young adults with disabilities who through adversity have become successful . By successful I mean they are happy, they are doing jobs they love and being an integral part of society. Now isn’t that what we all want for all of our children regardless of their ability.

I have meet young non verbal adults with other disabilities as well, just like our daughter, who are attending uni, have great jobs and have great social networks.

These young adults are all amazing and have made the future look so much brighter for me when thinking about the future for our daughter.  I can now see that there are lots of opportunities for her once she leaves school.

I will continue to give her the opportunities to grow as a person and find her way.  For her to work out who she is,  what she wants to do and her passions in life.  The only difference is now I truly believe anything is possible.

The future looks so much brighter!!

My daughters realisation – I’m not Alone

Last week at the conference my daughter and husband arrived in time to see the presentation before mine, which was presented by a lovely young lady who uses AAC to communicate.  She gave her perspective on what it’s like to be non verbal and it’s challenges.

My daughter sat there with an amazed look on her face.  She hit my arm and after she got my attention she pointed at the young lady.  It was then it hit me…

My daughter had never experienced being in the presence of someone else that was non verbal and that used a device to communicate like her.  All through the presentation she laughed and watched intensely soaking it all in.  She listened to her talk, using her device and kept looking at me as if to say “look Mum, she’s just like me”.

It was after this moment I realised that very fact.  She hasn’t been around people with complex communication needs.  She hasn’t been around people who use AAC (alternative and augmentative communication) methods like iPads or speech output devices.  She goes to a mainstream school where there are no other students with communication needs.  She played soccer in a mainstream team with friends from school.

By no means am I saying that what we have done is a problem or is wrong but I do now realise that there is a need for her to socialise with people like her to help improve her awareness of her need to use her device to communicate and that she isn’t alone.  There are others just like her.  I want her to meet them and communicate with them.  The young men and women at the conference would be fantastic mentors for younger people like my daughter.

So here’s the irony – by mainstreaming our daughter we have limited her exposure to kids with needs similar to hers.  By having her at a mainstream school we have broadened the horizon of other kids in the school but we have limited her experience to some extent.

I still fully believe in mainstreaming my daughter at school but now realise the importance of giving her opportunities to meet other people with complex communication needs which will be a major focus for us over the coming 12 months.

AGOSCI Conference – Presentation Success

The day had finally come.  It was time for me to present my paper AAC Journey – Connecting with Success.   This was the story of our daughter’s AAC journey to date.  What has worked and hasn’t worked for us.  How she is connecting to the community with success including how I have set up her iPad to communicate when her signing or speech isn’t an option for her.

My husband and daughter arrived to watch me along with some supportive people that I have met along our journey.  It was an amazing experience standing in front of a group of people who were there to listen to me and were interested in sharing our story.  I only hope they enjoyed and learnt something from our journey.

To start my presentation I asked my daughter to come up with me and introduce herself using her iPad and tell everyone how old she was.  I then asked her what her favourite TV shows were.  She signed ‘I’ for iCarly and said Spongebob.  I wanted to demonstrate how she uses her different modes of communicating depending on what works for her.

I explained to everyone my daughter’s multimodal approach to communicating and how this enables her to succeed in an expanding number of social situations.  Her limited speech, signing, gestures and body language are her preferred methods of communicating however she now has the iPad to compliment these methods.

I was really happy with how my presentation went and received some great feedback.

Congratulations and thank you to all the organisers of the Agosci Conference.  I had a fantastic time and met some truly inspirational people.

Over the next week I look forward to sharing with you some of my experiences from the conference.

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.

‘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!