Complex Communication Needs in Hospital

How do non-verbal patients get their needs and wants across to staff in hospital?

After a recent hospital stay I have concerns about the level of accessibility that non-verbal patients (whether this be from a disability or from illness) have to a form of AAC (Augmentative and Alternative Communication) to enable them to communicate their needs and wants whilst in hospital. I would think communication in this situation is vital, the ability to tell staff if they are feeling unwell, in pain or if they need assistance. I am hoping that stroke wards give their patients access to communication boards or some form of AAC however at least in our local area I worry this is not the case. I had a friend ask me late last year if I could help her as she had a family member in hospital who had a fall and hit their head. They were no longer able to communicate and were becoming very frustrated and angry. I went online and found a variety of good hospital/health communication boards and resources, which I printed out for her. They were grateful.

In our situation we advised the hospital at our pre-op meeting of our daughter’s complex communication needs and how she communicates. It was all written down in her file. I guess we were hoping they would have some sort of communication board available to their staff to use with her. I am not sure who actually reads this information, as I know no one that we dealt with during our 8 days in hospital was aware of her issues. All the nurses would ask Caitlin questions and when they couldn’t understand what she was trying to say/sign they would just look to us to interpret. This was fine for our situation but what if the patient didn’t have someone there to interpret their communications for them. What happens then? It really worries and upsets me to think that these patients could be going through pain or feeling unwell because as a society we haven’t got basic procedures in place.

Prior to our hospital stay, I had prepared a number of resources that we took with us to assist our daughter as I wanted and needed her to have the ability to communicate with us. I started with a social story on her iPad explaining the operation she was going to have. I also had a variety of communication options at hospital including visuals, a health style communication board and a hospital communication page on her device. I am passionate about AAC and a huge advocate for making communication accessible to everyone. Unfortunately, I fear none of these resources are made available to other non-verbal patients.

I would love to hear from AAC users or their family members of any positive or negative stories in relation to communication in hospitals. It would be great to get an idea of the range of issues that exist and it would be great to hear of any hospitals or States that are doing a great job.

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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.

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.