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 tToby Newbold Pain Non-verbalwo-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.

Toby in hospital as a baby

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 yvonne@yvonnenewbold.com and I’ll get straight back to you.

Yvonne Newbold

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.

 

 

Yvonne & Toby

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. 

Special Parents Handbook

The Special Parent’s Handbook

£10.00 plus postage & packing

Shipping UK & Worldwide – please select UK, Europe or Rest of World from the drop-down menu – all orders despatched within 48 hours
Price including postage & packing UK & elsewhere

Would you like your copy signed with a personal message?  If so, please just let me know by email – yvonne@yvonnenewbold.com

Recognising pain in the non-verbal child
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12 thoughts on “Recognising pain in the non-verbal child

  • April 14, 2015 at 10:36 pm
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    Excellent article Yvonne. You have expressed very clearly the difficulty in being listened to as a parent of a disabled child and the frustration of being non-verbal. It is a shame that the NHS do not extend their ‘experts by experience’ concept to parents of disabled children; as you rightly say, mum knows best. It is not rocket science to know that those who are non-verbal or with limited understanding will express being in pain in diverse ways and it is key to the health and well-being of disabled children and adults for those involved in their care and treatment to be open and amenable to the knowledge that parents have. The links to further reading are a very useful addition, thank you.

    Reply
    • April 16, 2015 at 1:24 pm
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      Thank you Susy Jane. I think the NHS culture is changing, but not quickly enough. I was compelled to write this after being contacted by a number of parents who are facing a brick wall when it comes to getting effective pain relief for their non-verbal children. These children often don’t present pain symptoms in the way that clinicians are trained to look for, and when your child is in extreme pain and no one is taking that on board, what else can parents do to get the help their child needs? I’ve lost count of the numbers of times it’s happened with Toby, and the feelings of frustration and powerlessness are impossible to convey properly in words. Thank you for all your supportive comments, and for sharing it with other parents too. Take care and hope you’re having a good week. Yvonne

      Reply
  • April 15, 2015 at 3:17 am
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    So eloquently put! As a mother of 5yr old twins with severe cerebral palsy (one with a trachy) it was nice but also sad to know that we’re not alone. Thank you for directing us to your research, I shall certainly be reading through the links provided.

    Reply
    • April 16, 2015 at 1:29 pm
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      Thank you for your very kind feedback, Claire. It sounds like you have a lot on your plate, and it’s so hard when you need support and instead they don’t listen. Very sadly, this isn’t an isolated problem. Just from reading comments on social media sites it’s very clear that this is something that is affecting countless families, not just here in the UK, but everywhere. Attitudes are changing, but nowhere near fast enough. I hope the research links may help, and also, the more of us who talk about the problems online the greater the chance that we will be heard collectively, which may shift thinking among the professionals eventually. Very best wishes to you and your family. Yvonne

      Reply
  • April 16, 2015 at 11:54 pm
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    Spot on!!!!!!!! I have twin sons on the spectrum one of my guys non-verbal, severe behavioral issues well u all know, the other guy is asperger’s which is a nightmare on a whole different level. I don’t think anyone listens at all. Or they pretend. My husband and I operate a 501-c-3 for children on the spectrum providing recreational and social activities, without the fear of social stigma or bullying. I must write in upwards of 5 grants and other 5 donation request almost always turned down. The most popular reason for denial is business or foundations work with At Risk Kids. I reply back I can not think of a more at Risk group than our population. Or we hold an event for autism, mind you it’s only once a year. I am appalled at how are children (any age) are dismissed, ignored and at times shunned than our’s. In our area their are no brick n mortar groups, that could provide job coaching&development & placement, life skill training or any activities. For some insane reason I feel general population does not understand that are children might be non-verbal but have wants, needs and desires of every one else. Blow me away. I am by no means a timid gal, and usually do very well when it comes to my boys IEP’s but for anything socially not making much progress with outside world. I have used all the tricks in the book to reach the decision makers of these companies as well and still nada. Second reason I receive is they donate towards research, medications and studies. I applaud their efforts and that is very much needed but what about every day life for our children. Do they not deserve some good old fashion fun. I know I am not stopping I will continue to fight the good fight for my children and all of our amazing, sweet,talented, loving children. Any ideas or suggestions please, please let me know.
    Sharon

    Reply
  • April 16, 2015 at 11:56 pm
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    Hi again my personal info did not appear let me try it one more time

    Reply
  • April 17, 2015 at 12:13 am
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    Hi Sharon, thank you for your replying. It sounds like you have your hands full, and I feel your frustration. Have you managed to find any other special needs parents locally? Often it take a collective voice to make things happen, and meanwhile, even if there are only 2 or 3 families you can find to start with, you can at least go to the park together and get some like-minded company for both you and the children. It’s only a thought, and you may have already exhausted all those sorts of options until you’re blue in the face. However, I couldn’t survive without my very special tribe of very special parents. They just “get it” in a way nobody else ever will. Also, what about FB groups – can you network on there and see if there are any other families in the same situation? What about the boys’ schools? Can they offer any after school clubs or activities, or are they linked into a network of information on what’s going on in the local area for our type of children? You are so right – our children need and deserve a good quality of life too. Very best of luck, and you will find something out there somewhere, or if you really can’t, some of the very best facilities for disabled children were created by parents who wanted the best for their children. Take care, and very best wishes to you and your family. Yvonne xx

    Reply
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  • April 19, 2015 at 1:56 pm
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    Thank you Yvonne, brilliant article. The professionals don’t like to admit that we are the experts when it comes to our children and knowing there is something not right. As a part of a team approach don’t forget DisDAT which is a pain assessment tool that can help people working with our loved ones monitor and assess pain, there are a number of websites where you can download it, here is a good one:

    http://www.stoswaldsuk.org/how-we-help/we-educate/resources/disdat.aspx

    Best wishes, Ian

    Reply
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