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.

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.  

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!!