I have helped start up a social group called iChat My Way for people of all ages who have complex communication needs and use or are learning to use alternative ways to communicate (like iPads, photos, pictures, signing and gestures etc). The aim of the group is to be a fun place where users, carers and siblings can practice their AAC use in the community, make friends and learn from each other. The group has the full support of management and staff at McDonalds who are also committed to increasing the communication accessibility of their restaurant for people with complex communication needs.
The issue I have now is how do we educate the rest of society to be patient, tolerant and accepting, allowing people with communication needs the time they require to express themselves, request information or order food.
At our meetings I have witnessed people rolling their eyes, standing behind our members tapping their foot, we have even had someone try to push in front of us. I think this is sad and I can’t believe that people think it is acceptable behaviour.
What I have realised is that society is not use to people with communication needs having the technology to allow them to have a voice. In the past parents or carers would have ordered for them. They would not have been able to express themselves or request information or tell you a story. So with this new technology and with the person centred approach to disabilities giving people with disabilities a greater sense of community and value, it may now be time to start educating the rest of society and making them aware of people with communication needs.
Society has learnt to be aware and empathetic towards people who are blind or who are deaf. Now it is time they become empathic and aware of people who have complex communication needs.
In my aspirations to help as many people as I can I have created, with the assistance of a speech therapist I met during my presentations this year, a fun social group called iChat My Way. We are starting this group to support people, of all ages, with complex communication needs to meet others who use alternative ways to communicate (AAC) and their carers in our local area. The aim of this group is to socialise, practice using AAC in the community and learn from each other about using different AAC methods. But most of all making new friends and having fun.
We have just had our first meeting and although it was a small get together it was still very rewarding and a lot of fun. It was held at our local McDonalds who have been amazing in making their restaurant communication accessible. They have even learnt some Key Word Signs to use when we order and they have menu choice boards made up for us to enable people unable to speak to point and order what they want.
In the past I have always ordered what I thought my daughter wanted to eat or drink. She didn’t have the capacity until recently with her iPad Mini to order or make decisions for herself. I now know that I wasn’t always correct.
At the group on the weekend this was witnessed again. There was a young girl who attended and using her few words and the menu choice board she ordered herself a Happy Meal with a cheeseburger, apple slices and a strawberry shake. We all had a laugh when her mother said “I would never have guessed that’s what she would have ordered. Normally I order her nuggets and fries.” It shows us that as parents we don’t always get it right. But as a parent with a child with complex communication needs we do our best.
We all had a great day and loved ordering our own meals, sharing iPads, playing in the playground and using a number of different ways to communicate to the McDonalds staff. I think the McDonald’s staff enjoyed the day as much as we did.
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.