This week my 10 year old daughter Daisy goes into hospital for major surgery. It's not the first major surgery she has had, over the years she has had many operations and anaesthetics. This week's operation is the most complicated, and risky she has had in her life. It has taken a huge amount of planning by her medical team and much soul searching on our part to agree to it, the hope being it will improve her quality of life and help remove some of the constant pain that she lives with.
We know she will be in theatre for around seven or more hours, she will probably spend some time in intensive care afterwards being stabilised , the rest is all uncharted territory but we know she will be in for a long stay in hospital as she recovers and we find a regimen that enables us to look after her at home.
How do you prepare your child for something like this? Especially when, as in Daisy's case, she has a learning disability.
Here's my advice to anyone with a child with complex needs facing an impending hospital stay, it's what has worked for us as we support Daisy through these traumatic and stressful times:-
Get the timing right.
Do not tell them too soon but don't leave it too late. Too soon and they will worry, too late and there is not enough time to process it. Over the past few weeks we have been talking to Daisy about the pain she has been feeling and how we have been having conversations with the doctors about things that may help with managing the pain. This way she was already aware of the connection between the impending hospital stay and finding a solution for her pain.
Use Social Stories to help articulate their fears
I have been using social stories for a while with Daisy and it's a really good way of helping her work through the emotions of what is going to happen and to try and focus on the positive outcome. Social stories are simple techniques to explain what is going to happen, to describe in the words the child would use how they feel and then to reflect on how they will feel afterwards
Use familiar words and phrases - for Daisy a "special sleep" is an anaesthetic. We acknowledge her fear and anger and talk about how mummy will be with her all the time. Talk about feelings and then talk about how she will feel afterwards. Social stories are a great way to help a child with articulate how they feel and work through those feelings focusing on the outcome.
Visit the hospital beforehand
We always visit the ward where Daisy will be staying beforehand and chat about the good things we can see there - the TV next to her bed, the play room, familiar staff. If possible try and meet with any play specialists to discuss your child's needs. Whenever Daisy needs a scan or specialised test we always visit the room where it will take place to see what happens and choose DVDs to watch while she is undergoing tests. Play Specialists, where available, are fantastic at distraction but also at finding ways to help your child understand what is happening. When Daisy needed to have an ileostomy stoma formed the play specialist brought along a dolly with a stoma bag and told her the story of when the doll had surgery and how she feels now. It took so much of the fear and anxiety out of the procedure.
You are your child's voice
Once you are in the hospital with your child you are their voice. Daisy has minimal verbal language but uses signing (Makaton and Sign Supported English) to communicate. I interpret her signs but also am very tuned in to how she feels, as are all parents of children with a learning disability. It's important that medical staff know to speak to your child, regardless of whether or not they can respond and to make sure they avoid use of any medical terms or jargon that may scare your child. Daisy knows straight away if the word "cannula" is mentioned and will burst into tears. Make sure that everyone who cares for your child knows that just because they have a learning disability they still have feelings and opinions. Your child has a right to have their opinion heard and not to be talked over.
Look after yourself
When your child has very complex needs hospital stays can be hard work on the parents/carers. It's often difficult to leave them and get a break as they can't ring a bell or call out for help. You can go stir crazy at times, especially when you are juggling the roles of carer, advocate and parent with an ever present background distraction of Disney Junior! Do everything possible to look after yourself. Take in your own pillows & bedding, headphones (to drown out the incessant children's tv), your own (extra strong) coffee from home, snacks to keep you going. Try and arrange friends or carers who can sit with your child for a couple of hours to give you a break. If you are able, go for a walk and get some daylight & fresh air. Whatever you need to keep body and soul together. And in the same way as you encourage your child to focus on the outcome, remember to do the same - you will get home, this is not forever.
Hospital stays and procedures are scary enough for children at the best of times, when a child has a learning disability they can be traumatic and highly stressful. Through our own experience we know that you can't avoid this stress but preparation and communication can help manage it and get you both through, hopefully in one piece!
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