Why my son can’t talk
My son, Toby, is non-verbal. He is two days away from his 21st birthday and he has a handful of single words, mostly names of the people he loves or the activities he likes to do. He has no words to describe past, present or future, or to indicate his emotions or feelings, or to tell me he is in pain. He has a condition called Pseudo-Bulbar Palsy which means that the muscles in his throat do not co-ordinate properly, so he has very little control in verbalising meaningful language. He also has a severe learning impairment which means that his cognitive ability is at an equivalent level to a neuro-typical two-year-old. On top of that, he is also at the most severe end of the autistic spectrum. Toby has been dealt a particularly cruel communication-skills triple whammy, and of all his multiple disabilities, it is his inability to clearly communicate which most impacts on his quality of life.
This lovely one-minute-long video will give you a very good idea of how tough it is for Toby to talk and you’ll also see how hard he tries. He’s playing “round and round the garden with his big sister, Francesca and our friend, Dewayne.
The problems this causes him
A non-verbal child will always struggle with making friends, understanding the world around them, and in being able to get their most basic needs met. They can never ask questions, share their worries and fears, and it is infinitely harder to connect with people they meet in their daily lives. With Toby, I have seen time and again, his slow, painful attempts at communicating being impatiently ignored, with people taking it upon themselves to speak for him or to second-guess what he is thinking and feeling. They might be spot-on or they might be a million miles away, and the only person who would know is Toby, who cannot tell us. Most of us take communication for granted, and we share ideas, thoughts and feelings with others freely – we easily find companionship, like-minded friends, and we can persuade, debate, tell stories, recount our experiences and reach out to others all the time. Toby will never do any of that, and for me as his mother, it is a constant source of sadness.
However, he is one of the lucky ones. He has worked with some very skilled and committed teachers and therapists, and he is part of a loving and devoted family. Together with his team, and over many years, we have worked tirelessly to open up other communication methods for Toby, and he is still making significant and exciting progress with visual timetables and very recently, moving to the use of pictures on an ipad. But it will never be the same as being able to chatter away nineteen-to-the-dozen and keep up with normal conversation.
The impact on self-esteem
This inability to talk is isolating in a way that most people cannot begin to imagine. It is also hugely damaging to self-esteem. Just try and think how you would feel if, ever since you’d been born, nobody had been able to listen to what you had to say, to reassure you, to understand that you need a bit of extra care, to laugh along with you as you told a funny story of what happened at school today, or that your feeling were hurt by a thoughtless comment. Toby lives surrounded by thoughtless comments and less than sympathetic facial expressions. He is used to people making assumptions about what he thinks or wants and getting it wrong as much as they get it right, and he has no way of doing anything other than going along patiently with their errors.
When pain is ignored
What if you were really in extreme pain, and nobody knew? What if, despite screaming out and thrashing about and doing everything you could think of to try and alert other people to help you with this excruiating pain, someone assumed you were “playing up” and “being difficult”. It happens. It has happened to Toby more often than I can remember, and in places where it really shouldn’t, places such as hospitals and care homes.
When a mother first brings her baby home from hospital, the baby cries, and the mother has to work out what each cry might mean. At first it’s an impossibly confusing task, but as the bonding process strengthens between mother and child, it becomes easier and easier. After a few weeks, a mother just “knows” if her baby’s cry is communicating hunger, or tiredness, or feeling cold, or being unwell. The mothers instinct has developed, and when that instinct is really strong, sometimes a mother just “knows” before her baby even starts to cry.
When their mother gets ignored too
If that baby is disabled and needs extra care for years upon years, the mother’s instinct becomes even more highly attuned, certainly when it comes to the very big things like pain and real distress. Yet in hospitals, on many, many occasions, when I’ve tried to tell staff that Toby is in pain, I’ve been dismissed as being “over-emotional”, and ignored and marginalised as effectively as happens to Toby. There is no feeling in the world more frightening, frustrating and physically painful than a mother unable to get doctors to listen to her concerns over her child who she knows needs urgent help and attention.
What can a mother do to make them listen? Sadly, very little indeed. Once hospital staff, or care home staff, or community medical staff, or school staff, or local authority staff, make up their minds that the mother is “over-emotional” and therefore must be unreliable, the non-verbal child has lost their only chance of being heard. Once Public Sector staff have closed ranks and decided not to listen, the mother is silenced just as effectively as the child. It has happened countless times. I was ignored in intensive care when Toby was 6 weeks old, screaming and banging his foot in a frenzy against the side of the cot. I was begging and crying and desperately trying to persuade them to unwrap the bandages to have a look to check that the intravenous drip wasn’t hurting in some way. At the time I didn’t know about i/v burns. I do now. Toby has a huge disfigured ugly scar on the side of his ankle because they didn’t listen, a scar that took the skin off so that we could see bone, a scar that took over a year and countless infections before it started to heal. This photo was taken the day before it happened.
There were other times too. Plenty of them. The scars from all of those may not be so visible, but they are still there, carried by both Toby and me. When you are not listened to, the damage continues for life.
The “Them and Us” Brick Walls
I’m not alone. Only last week I was contacted by another mother who isn’t being listened to either. She is one of many hundreds I’ve met, and I’ve also seen countless thousands of online discussions on this very topic that take place on a daily basis, so huge is the problem for parents like us.
When they stop listening things can snowball out of hand. Staff from one professional body talk to others within the child’s team, spread their assumptions about you, and before you know it, no one is listening to anything you know about your child. Parents of disabled children soon develop another instinct, to know when a teacher, or a classroom assistant, or a social worker, or a therapist, or a respite worker, or all of them together, have stopped listening. When they have stopped taking you seriously, when they choose to ignore everything you know about your child, based on years upon years of being with them and caring for them with the intricate moment-by-moment detail that only a parent understands, it feels as if an impenetrable brick wall has been built – a them and us wall. They are the paid professionals, they are the ones with the paper qualifications, they are the ones who call all the shots, make all the decisions and decide what is best for your child. You are the over-emotional, unreliable one. The fact that you are the only true expert of your child, the only person who cares passionately about your child’s future, the only person who will be there in the middle of the night every night for decades to come if needs be, simply doesn’t come into it. They’ll pay you lip service, and you may get a patronising smile, but your child has been appallingly short-changed in the process and so have you.
Why does it happen?
It’s not always their fault. Their training generally focuses on basing decisions on fact rather than feeling. They are looking for evidence, a clinical sign, a number on a blood-test scale, or a tangible symptom. A mother’s instinct transcends all that, the way a mother just “knows” isn’t scientific, but it’s no less real. Addtionally, the science-based training leaves little room for the softer skills such as communication, listening – as much to what isn’t stated as to what is – the “reading between the lines” skills, and also most professionals have the importance of keeping a “professional distance” drummed into them throughout their career. So they are far more likely to listen to colleagues or allied professionals – other doctors, teachers, therapists, social workers – than they are to listen to what parents are saying. Their colleagues present things in ways they understand and that do not threaten them. They use evidence-based factual concepts to explain their thoughts, not emotional feeling-based language that a frightened, frustrated and angry parent might use.
How can we help our children get the help they need?
So what can parents do? One of the things we can do is to learn to communicate as if we were a professional too. Do some research on the internet, and see if you can find any recent academic papers that back up your concerns. For instance, last week I did a lot of internet browsing on behalf of the parent who has asked for my help. It was exciting stuff, because I can see that the medical profession is beginning to turn a corner, and to recognise that learning disabled and non-verbal patients are not getting their pain managed as effectively as the wider population do when they are in hospital. One of the best aspects of the research for me is that time and again medical teams are being urged to include and listen to the parent’s view.
If you are a concerned parent, you don’t have time to wait and hope that your child’s doctor may also luckily stumble across a particular piece of medical research that backs up what your child needs them to know right now. Instead, try and find it yourself, and as respectfully as you possibly can, let your child’s medical team have a copy, and you can helpfully highlight the relevant passages to back up what your are trying to convey. At the bottom of this page I’ve included the links to some of the research I’ve found relating to pain and non-verbal children.
Can I help?
Communication, pain-management and the difficulties of being properly listened to are covered in several of the workshops I’m now doing with groups of parents and groups of Public Sector staff around the country. I’m trying to bring down those “them and us” brick walls everywhere, because they aren’t helping anyone, least of all the children. We have to find a different, kinder and more collaborative way of doing things, and if I can help make that happen then I’ll do whatever it takes because it’s so important. I’m talking at conferences and running workshops in schools, hospitals and social care settings, creating safe spaces to explore ways of doing it better with the next generation of disabled children and their families. If you’re interested in finding out more about how I might be able to make a difference with your staff teams or groups of parents, please email me on firstname.lastname@example.org and I’ll get straight back to you.
Meanwhile, here are some of the links to articles and research I found on the internet relating to pain and non-verbal children. I hope some of it may help your child be heard more effectively.
An excellent overview of pain in children with Cerebral Palsy from My Child at Cerebral Palsy.Org http://cerebralpalsy.org/information/pain-management/
A very comprehensive 75 page report from The Royal College of Nursing caled “The Recognition and Assessment of Acute Pain in Children. Although it’s long, there are good chapter headings which you can use to go straight to the relevant information for assessing pain with our cohort of children. https://www.rcn.org.uk/__data/assets/pdf_file/0004/269185/003542.pdf
This I thought was excellent. It’s an academic thesis by Karen Kleivene in Oslo, Norway. It’s called “Pain in non-verbal children with severe multiple disabilities”, and even though it’s 89 pages long, it’s written so clearly in understandable English, with lots of particularly spot-on passages you could use as quotes to back up your concerns. https://oda.hio.no/jspui/bitstream/10642/628/2/Kleivene_Karen.pdf
This is an excellent, easy to do, check-list of things to look out for that may indicate pain in a non-verbal child. It’s called “The Non-communicating Children’s Pain Checklist” and it was developed by Lynn Breau of Paediatric Pain Research, who are based in Canada. It was written primarily to help clinicians detect pain in children who have had surgery, it would also work well with our children. A parent could use it very effectively to gather evidence and record pain-related behaviours in their children to present to the professional team at a later date. http://www.aboutkidshealth.ca/en/documents/akh_breau_post-op.pdf?hc_location=ufi
Finally, if you don’t already know, I have a Facebook Page called “The Special Parent’s Handbook Page“, where I post the very best material I can find every day on the internet relating to families like ours.
Toby now, all grown up but never too big for a hug from mum
If you’ve found this useful, you may like to read my book “The Special Parent’s Handbook”, which is the book I wish someone had been able to give me on the day Toby was born, when I know nothing about disability or how hard I would have to fight on his behalf to get the essential medical care, education and therapy he would always need. In the book I share everything I learnt along the way, not just about how to make Toby’s life easier, but also from everything I also learnt from Francesca and Adam, my other two children, who were later to be diagnosed with multiple additional needs of their own.
The book is available directly from this website as well as from Amazon. To buy it here, please select the correct drop-down menu for your geographical location, so that the shipping costs are adjusted accordingly.