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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Communication Partners play a Major Role in Success

The timing is right!  I am a believer that for people to learn the timing has to be right.  By this I mean they have to want to learn, they have to be in an environment that promotes learning and there has to be an agreed outcome.

My daughter goes to high school next year and one of the concerns raised is her ability to communicate with the other students, teachers and carers at the school.  So I became motivated to improve her use of her communication device and I became a motivated communication partner.

In partnership with our speech therapist we are now having weekly sessions and learning ways to promote my daughter’s use of her device.  We have been using the same app for a number of years but it has never really been set up for efficient use and she hasn’t been motivated to use it, BEFORE NOW.  Now she has a team behind her.  It is amazing the progress a person can make when they are given the opportunities to have a go and they experience success (and failure) and have people around them motivating and encouraging them.  She takes her device everywhere now including school and appointments and people are amazed at her use of the device and now she even tries to initiate conversations.  Don’t get me wrong there is still a long way to go.

In a couple of months she has progressed from a very basic format on her communication app to a more complex format.  She has progressed from one word statements to now making simple sentences.  We are even introducing plurals, past and present tense into her vocab.  She is enjoying using it and is using it regularly even at home to tell us what’s on her mind, to tell us how she is feeling or what she want’s to do.  I am so proud of my girl, she is such an inspiration and she never gives up. She is patient with her communication partners it’s a shame we aren’t always patient with her when she is communicating. 

I now understand the importance of being a good communication partner for people with complex communication needs who use alternative methods of communication (AAC) like my daughter.  I have learnt that my role and the role of a communication partner isn’t just listening to them.  It is giving them the opportunities to learn to communicate their needs, wants and choices in a non judgmental environment.  It is modeling correct sentence structure and helping them catch up on the lessons we are taught from birth with speech.  It doesn’t take us months to learn to talk in sentences however, at times we give people a device and expect that they will pick it up and suddenly be able to communicate in full sentences and proper grammar.  We are kidding ourselves. 

By a communication partner I mean the person that they are trying to communicate with which includes family, friends and all other members of the community they try to converse with.  

If there is one thing I hope you get out of the blog entry, it is that you learn the importance of YOU as a communication partner to people who use alternative methods of communication like iPads.  They need you to be patient and give them time to communicate their message, respond to them appropriately, don’t be scared to ask questions or make a comment, they would love the feedback and show interest and respect in what they have to say.  Basically, give them the right to have a voice.

Life Might be Easier BUT …

I was driving along one afternoon, with my son in the front and my daughter with special needs in the back. She was looking out the window fixated on the outside world and absorbing the scenery as we drove by.  My son said to me “God she’s gorgeous. I can’t imagine life without her.” He then said, “life might be easier but it wouldn’t be better.”  The car went silent… We were both sitting there obviously thinking about this alternate life. 

I quickly came to the realisation that life would be greatly different.  I told my son that day.  “If we didn’t have her I would probably still be at my old job, working long hours and although working with friends not really enjoying my job.  I would be away from home from 7.30am until 5:45pm each day and so he wouldn’t be able to do all the sports and activities that he has been able to do over the years as we wouldn’t be able to get him there.”  However, the most significant thing that came to my mind while thinking about a life without my daughter was that I am a much better person with her in my life.

Having her has made me a much stronger person. Even though at times our lives have been a roller coaster ride of emotions and challenges as a result of her disabilities I am a happier person now.  I have had to become a lot more patient, a trait that I didn’t really have before she came along. 

As a result of having my daughter, I became a teachers aide for special needs students as I wanted to help other children and families with the challenges of schooling.  I love my job and I am able to spend time more time with my children.  I get to take my children to activities that they love like soccer and swimming.  We play soccer in the backyard after school and sit and cuddle on the lounge and watch TV together.  Even the jobs that I use to hate like cooking tea and bathing are now enjoyable as I appreciate and make the most of the time we spend together and cherish every moment.

Yes, having our daughter has changed our lives…. but all for the better!  She is such a character and continuously makes us smile and laugh.

So now when I have those days where I ask myself, WHY US?  I can confidently answer this and say to myself, “so we can be the happy, amazing family we are now”. 

Support for families

When filling out a survey recently it raised the question “Should families with children who are diagnosed with rare conditions be offered counselling at the time of diagnosis?

As a result of my own experience living with post natal depression I would have to say a huge YES!!!  I lived the first six years of my daughters life after she was diagnosed with a rare metabolic condition undiagnosed and living in a daze.  I still can’t remember a lot of those years other than going from one appointment to another, waking up each morning and just trying to get through the day.  My family suffered as a result of my suffering. 

I look back now and believe things would have been greatly different if I had been given counselling or some support from the date of her diagnosis.  Not just me but to our entire family.  We have all had our own struggles with her diagnosis.

It should be arranged for all family members and should be supplied as a free service.  I wouldn’t like to think that others have to go through what I did.  Since being diagnosed, treated and coming out the other side a much happier, stronger women who lives and enjoys every day, I can see the importance of counselling and early diagnosis of Post Natal Depression.  If you can see a family member or friend struggling don’t be scared to offer your support.

I didn’t understand when I was first asked whether I had grieved for my daughter.  I still remember asking “Why, she’s alive?” it seemed stupid.  Then once explained about why we needed to grieve for the child we expected and didn’t get, it all made sense.  This was when my life started to turn around.

I use my daughter and what she has to go through everyday to inspire me to make a difference and be a better, stronger person myself.  My family are my inspiration.

Complex Communication Needs – How Do We Educate Society?

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.

My Daughter’s Special Gift

My daughter with special needs is nearly 12 years old.  Over the years people have told me that we are all put on this earth for a reason.  I think we have found our daughter’s reason.

She is a beautiful, social and extremely happy girl who makes a difference wherever she goes.  People say to us that she has the power to make them feel good.  She has a wonderful ability to cheer people up or put a smile on everyone’s face.  We often have people say to us “I was feeling down until she came along.. you can’t help but smile when she is around you”.  At first I thought this was just family members but over time I have realised that I think it is her special gift to the world.  Just like Jasper in Twilight I believe she has the mood changing ability and if not it is a wonderful ability she shares.

When she enters a room she may appear small in stature but give her an hour and she will own it.  She would have gone around and talked to, cuddled or sat on everyone’s lap.  If your lucky she may even allow you to get her food or a drink.  After an hour she would have touched everyone’s heart in the room.

She is our beautiful girl with an amazing spirit.  

I just hope she stays like this and that as she gets older her experiences in life don’t change her.  That is why I am trying to make life easier for her and others like her.  

iChat My Way – my newest endeavour

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. 

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