Gently They Rage

Introduction

…some are born different

Ihad a child who was different. When I say ‘I had’, it is because he died at the age of twenty-nine. My lovely son Stephen had been severely disabled with many conditions: cerebral palsy, making him unable to ever walk or support himself; choanal atresia, causing breathing problems and great strings of mucus that had to be drawn out with tubes and suction bottles; severe learning difficulties; mild hydrocephalus and, later on, painful epileptic fits. He was also never able to speak and many of these conditions were not diagnosed for several months.

He also cried incessantly and there was no pacifying him. At the same time, I was having to deal with my doctor ignoring my pleas for help and being fobbed off with the words, that is what babies do. These conditions took Stephen out of the realms of being ‘normal’ and into what was termed, at that time, mentally and physically handicapped, although the correct term nowadays would be a disabled child with complex needs. When he was young, and before the era of political correctness, the more uncaring would use words like ‘mentally deformed’, ‘spastic’, ‘retard’, ‘cretin’, ‘imbecile’, ‘lame’, ‘vegetable’, ‘cripple’, or even ‘reject’. Such harsh, hurtful words and so different to when you have a seemingly normal child, because then there is no added label. You have a baby and you expect people to say how beautiful it is, but when it is obvious that you have a child with conditions, the word beautiful is probably said as some kind of consolation and, often, after a startled pause because they don’t know what else to say. 

Stephen lived far longer than anyone expected and it was such a challenging life for him. I found it difficult to manage emotionally and physically and through the years I wrote my thoughts and feelings down, often late at night when I couldn’t sleep, as I needed to make sense of the life that had been given to him. Unlike now, there was nowhere to turn to; no organisations, little awareness from medical staff of the impact on families with disablement issues, and no websites to look at for advice. Instead, I had to cope with an element of disdain from many health professionals who didn’t have the compassion or training to cope with the situation. One of these times was when I took Stephen to the children’s hospital to be diagnosed. The consultant was quite aloof and I became upset, fearful of the outcome of our meeting. He didn’t acknowledge me as I entered the room and instead turned to the nurse sitting to my right and asked where Stephen’s father was. She looked at me to explain and I said that he couldn’t get away from work. With that, the consultant waved me out of the room without any explanation. I asked the nurse what I had done wrong and she said that he couldn’t cope when parents got upset and he always wanted the father to be present, but there had been no mention of this. Gosh, he must have found his job tough!

When I became pregnant with my third child – Stephen was my second – I was terrified of the same thing happening again. I was finding it hard to cope with the worry and looking after my first child as well, so he went for respite care in the week and came home at the weekends. We thought the break would give us time to focus on his sister; she had missed out on the attention she so deserved because, as is the case with many disabled children, especially those with medical issues, Stephen’s needs had to be dealt with immediately. Instead, the opposite happened. It became harder and harder to adjust from the easy flow of looking after a ‘normal’ child, to that of a child with demanding conditions and, of course, the guilt and exhaustion that always went with it. Later, when I started putting together this book, it was such a relief to meet with parents who were experiencing the same feelings and to find that we weren’t monsters after all. We were just trying to deal with our feelings of helplessness.  

Reaching out to others

Sometime after Stephen’s death, I joined a creative writing course at our local university and submitted a piece describing his early years to the tutor. After reading it, she suggested that I should get it published as I had opened her eyes to what it was like to care for a child with ‘conditions’. I had written about things she had never thought about and she felt it could help other people. However, my feelings were too raw to go public and I couldn’t see how my experiences would help anyone else as I always felt that I had let Stephen down. As his mum, I couldn’t make his conditions right or comfort him as he would always push me away (years later, I realised that he was probably reacting to his breathing difficulties and suspected autism). I also felt it would only be my version, and my version alone would not be enough to explain to others what it was like because we all react differently. One family might be able to cope with what another couldn’t, so it was suggested that, instead, I used my experience to talk to other parents about how they coped and with their stories I would have a fuller picture. 

I was also encouraged by a friend, Sarah, who had two ‘normal’ boys. She had said she couldn’t imagine what having a disabled child would be like and, of course, she couldn’t because she’d not had the experience. She felt that having her two was more than enough to manage and her comments made me think about the purpose of this book; I felt it would be good to help other parents and I decided to let the stories inform the reader so they could take from them what they needed.    

I met many parents throughout the country whose children have a variety of needs because I did not want to focus on just one condition. I contacted organisations connected to children with special needs, sending them details of what I wanted to achieve and asking them if they would let parents know, in the hope that they would want to participate. I was not disappointed. The response from parents wanting to tell their story was exceptional and the book was finally in process. 

My main goal was to encourage the parents I met to tell me how they dealt with something that they couldn’t change and how they coped with a situation they desperately wished their child didn’t have to go through and which affected their whole family. 

For most of us, it’s important to be able to identify with others through our jobs, our hobbies, and our friendships; that’s what gives us certainty. That is why we work hard at our relationships and join groups. When we are part of a gathering like a football match, a concert, church, as well as going to work, all of these things confirm who we are. But when something out of the ordinary happens to us it can produce feelings of isolation and differentness. Anything traumatic that happens which takes you out of the norm can feel life-changing, whether it is a serious illness, death of a loved one, divorce, loss of a job or, in this case, a child who has special needs. It can cause you to feel your life is out of your control and can change your position of being one with those who previously you had felt in common with.

Most of us do not welcome change that we have not instigated. We would rather be in charge of our lives and make the changes when we want. The effects of unexpected change can cause feelings of loss and loneliness and can affect our confidence. As well, we have to adjust to friends and family we were once close to, who now appear to be uncaring, all because they may not know how to react to our new situation or because they worry about saying the wrong thing. 

Why does it happen? That has been the cry of many of the parents I met with. Is there a reason? Could it be genetic? Or just chance? If you are religious, you may think it’s God’s will, or even a divine plan. There again, you may think that God has abandoned this child and your family, or perhaps you are thinking, Why me? That’s a funny question. Should what we perceive to be a negative experience always happen to other people? If so, how would you judge who they ought to be?  

For myself, I needed to believe that there was a purpose to it all. Of course, I don’t know if that is true, but it sits well in my thinking. Does it make it easier to manage? No, not always, but it helps when I think that it is not a random mistake or atonement for something that I have done. It helps me to feel that Stephen’s struggle wasn’t such a waste of a life because, when I look back, I can see that he had an enormous effect on many people, even though he was never able to talk to them. His life made many look at themselves and in some it brought out the best.  

Giving birth to a disabled child is not always a decision of choice, unless we have been forewarned by medical procedures. Usually, when we plan to have a baby, we picture a gurgling, happy child with ten fingers and toes, and there the picture stops. We don’t want to delve further, we can’t think of there being problems; that is what happens to other people, but what a shock when you find it is happening to you or your loved ones. Of course, we all want a ‘perfect’ baby and many parents even hope for a certain sex but, as most of us learn in life, we do not always get what we want.

So, how to cope? That was one question, among many, that I asked the parents I met, and what would have helped them to cope better? What got in the way of their coping? What did they feel they had learnt from this experience? Had they found inspiration or been immobilised by their feelings? I also asked about their happiest and unhappiest times, what impact this child’s condition has had on them and their family, and for any advice they could give to those in similar situations.

I have been asked whether I wrote this book to offer advice and guidance and I want to make it clear that I have not. I do not have professional knowledge, only my personal experience, but I have drawn together the experiences of other parents. I cannot say whether what the parents are doing is right or wrong because we all cope in different ways and in different circumstances, but their stories will give you the opportunity to take what you need and decide how it can help you. 

Who is this book for?

There are approximately 770,000 disabled children under the age of 16 in the UK. That equates to one child in twenty¹, making a large number of families who have to deal with an unforeseen change and, of course, it is not just the parents of these children who are having this experience; it is the brothers and sisters, nans and grandads, aunts and uncles, friends, and anyone who has contact with this child, including medical professionals and all front-line staff.  

When a child is born, a new stage in our life arrives and with it comes feelings of excitement. We know we will have to make adjustments, but when we discover there are accompanying conditions we also have to decide how we are going to deal with it all, because a child with special needs will certainly have a huge impact. Even if we don’t want to think about it, there is no doubt these children will change your life and will change you. They will put you in touch not only with your strengths, your limitations, and your vulnerabilities, but will challenge you in ways that you never dreamed of.    

No one knows, except for another parent, what it is like to hear a doctor give the heartbreaking news that your child will never be able to do the things that you dreamed of. At that moment, your whole life feels as though it is falling apart. There may follow conflicting feelings of pain, denial, guilt, panic, helplessness and vulnerability at the unfairness of it all and yet, at the same time, an overwhelming longing to love and protect this little life. It can all feel so confusing and frightening, and even cause you to isolate yourself from others with their ‘normal’ lives.

Of course, there aren’t always the early indicators to show that something is wrong with your newborn. The knowledge can be delayed and only become apparent when your child is not meeting its developmental milestones. In some cases, a mother’s instincts will warn her that something is wrong but can pose a problem when she doesn’t have the medical knowledge to know what it is and is unable to trust her instincts – especially when the medical profession might be denying her fears. Then there are those parents who are in denial that there could be a problem because they don’t want to acknowledge their deepest fears and the possible implications.

When I first had the idea for this book, I thought it would just be about children who had been born with conditions, because that is what I knew, but I was approached by two families whose children had been born ‘normal’, but who were altered by later circumstances causing quadriplegia and, in one case, the child losing its ability to speak. How tough it must have been to have this normality snatched away.  

I felt that many of the parents I spoke to welcomed the opportunity to talk to someone who had been in a similar position, knowing they wouldn’t be judged. I wanted them to know that whatever their experiences – negative or positive, challenging or rewarding – these could help anyone wanting to know about this subject.

I believe that sharing these stories, telling of the highs and lows of caring for a disabled child, can bring comfort and hope to others who find themselves in a similar position. Discovering how hard it is for other parents, with their feelings of inadequacy and pain, may help parents in a similar situation foster a sense of understanding and forgiveness of themselves. It may also help family members and friends who don’t quite understand what their relatives are going through in caring for a child with special needs, and may enlighten some of the medical professionals who are trained primarily to deal with the physical and not the emotional.

I also hope to highlight the underlying message that each family is different with their frailties and needs in a time of great vulnerability, and deserve to be treated as such. My aim is for these stories to provide a deeper awareness of the emotional and physical impact this situation can have on a family, in a way that training textbook style cannot provide, particularly for those who work closely with these families. It must be remembered that those who are trained in this situation do not have to deal with the emotional impact that comes from having a disabled child and more understanding of this could make a huge difference to the parents’ ability to cope.

What to expect from these stories

One summer, I sat with a group of friends and family in the sun enjoying a happy informal lunchtime hen-party. Quite a civilised affair, with beautiful food and flowers, enhanced by a handsome, muscular, although somewhat scantily dressed butler serving the drinks and attending to the barbecue. Everyone was excited and trying to talk to the bride-to-be, but it all changed when the bridegroom’s sister walked in with her two-week-old baby. All the friends’ and relatives’ attention suddenly focused on this little mite, revelling in its perfection. Even the previous thrill of the butler, with his tanned physique, paled into insignificance.  

As I looked on, I sat there thinking that this young mum probably had no idea how lucky she was. She was taking for granted her ‘normal’ child, and why shouldn’t she? She could not possibly perceive the heartache that could be felt from having a child that is not as expected and I wondered how different the group’s reaction would have been if she’d had a baby with ‘conditions’. Would there have been feelings of awkwardness and would the butler have been a welcome distraction? How polite would everyone be? All because the mum had entered into an exclusive baby club that chooses its members, but not one that she would possibly have considered joining? Still, all these years later, I could feel the heartache and separateness that comes from having an experience that was so painfully not intended. After all, who can forget that special moment when you discover you are pregnant and the excitement and anticipation you share with your family and friends? The news brings with it feelings of hope for the future, and your whole being is centred on the new life inside you. You dream of a little bundle that will bring joy into your life, someone to cuddle and play with, and to teach all the things that you know. It takes around nine months for a woman’s body to prepare itself for motherhood. Nine months where hormones are building to a peak, only to free fall if that mother finds out there is something wrong. As Katharine Trevelyan so eloquently says:

"There is nothing on earth like the moment of seeing one’s new baby. Men scale other heights for their moment of fulfilment but there is no height like this simple one occurring continuously throughout the ages."

That is what happens with a ‘normal’ child, but few of us dare to think that our dream might not turn out as we hope. A common statement is that we don’t mind what sex our baby is, as long as it’s healthy, but what if it isn’t? What if you have to wake up to a nightmare that you hadn’t planned for, knowing that your level of responsibility might be extended for much longer than you imagined? Instead, having to think about how you are going to not only nurture and protect this child, but also yourself and your family.

If you do find yourself in this position, what these stories will show you is that you are not on your own. These are real stories telling of the lives and feelings that these parents live out every day. They will talk about how it has changed their lives and challenged their whole way of thinking. What I found from my experience of having a disabled child is that it is unique to me, as are the experiences of other mums and dads in this book, but there are similarities and common threads to us all.

In the following chapters, sometimes I ask questions and some of what the parents tell me is free flowing. While transcribing their thoughts, I have tried to stay as close to their original wording as possible and I hope I have interpreted their stories and feelings accurately. Many of the parents were heart-searingly honest and some of their experiences are heartbreaking to read; some you will find frustrating, while others will lift your hearts, but I hope all of them will enlighten you. I ask you not to analyse them; just accept, with compassion, what the parent is feeling and all that they are going through.

References

1. Contact [www.cafamily.org.uk]

1

Susan and Daniel

My first story is told by Susan, who is married to Martin, both in their thirties. They have two children: Annabelle, eleven, and Daniel, eight. Susan describes Daniel as having a, constellation of health needs. These include being on the Autistic Spectrum, ADHD (Attention Deficit Hyperactivity Disorder), poor co-ordination, anaphylaxis and hyper mobile joints. He also has very poor eyesight caused by nerve damage.

I met Susan through a mutual friend on an evening out. She was a trim, bubbly young woman and when we introduced ourselves we discovered that we both had a child with special needs and felt an instant acceptance of one another. We met again a year later with the same friend and I told Susan my idea for this book; straight away, she offered her story.

We met for our interview on a chilly October day and Susan welcomed me into her bright warm house. It was very organised with no children’s clutter, although there were lots of photos of them. I later discovered that the house seemed to be an outward indication of how organised Susan is in coping with everything, as her story will show.

Susan told me that as soon as Daniel was born, six weeks prematurely, she knew that he wasn’t right. There wasn’t anything tangible to go by, only a feeling. She’d already had a nightmare of a pregnancy; Daniel had been one of twins and she had miscarried his sibling. He was very small, continuously cold, and it was difficult to regulate his body temperature despite extra layers of clothes and blankets. This was to be the start of many problems and, as time went on, Susan realised that he wasn’t meeting any of his developmental milestones. This was particularly noticeable because of having an older sister.

Daniel was also very floppy, didn’t move much, and, at the same time, had difficulty feeding because he had no sucking reflex. Susan had to rub under his chin to encourage him to swallow and he would only then take an ounce of feed at a time. When it was time for him to be weaned, he constantly choked. Telling me this, Susan sighed at the memory.

"It all took so much time because he also suffered with reflux, which meant that after a feed he kept projectile vomiting. Everything was covered in it and it made for so much washing.

He constantly cried, which was really wearing, and just would not be pacified. When I think back, I really don’t know how any of us got through it all, especially because he had an unusual problem with his nose being constantly blocked with stringy mucus. It was awful and not a bit like normal mucus, which you can wipe away, but more like strings of elastic that we had to pull from both nostrils. Eventually, we were given a machine that sucked it away by putting tubes into his nose but it all took such a long time.

And then Susan admitted something that she found extremely painful. In tears, she told me:

"I have a sickness phobia, which means that I can’t cope when someone is vomiting. Because Daniel used to retch a lot, I was constantly in a high state of fear and panic. I suffer terribly because I know I am not fair to the children. It’s a nightmare condition, especially because I have to throw away everything that they have been sick on – everything has to go because I cannot just wash it. You can’t imagine the guilt I feel. I love my children desperately but in that situation I just can’t be there for them and it’s unbearable. No one can understand who hasn’t got it, but I am lucky that their dad will come home from work to look after them so they are never neglected. When you have a fear of something, you can usually talk your way through the situation but when you have a phobia, you just react and want to run. It doesn’t make me a bad mum but it could seem that way to other people.

I hate what this phobia does to me and how it affects my family but I am there for the children in every other way – just not when there’s actually vomit. Any other illnesses, like colds and sore throats, pose no problems for me.

Susan then went on to tell me about taking Daniel for his first vaccinations at three months, which included the whooping cough.

"I took him and his sister together as she was due to have her pre-school jabs at the same time. She is petrified of anything medical, although we’ve never been able to work out why, and the whole event was a nightmare. The nurse gave Daniel his first jab while he was asleep in his car seat, then when it came to Annabelle’s turn I sat next to her on the bed and the nurse told me to distract her while she gave the injection. But as she jabbed the needle into Annabelle’s leg, she moved suddenly and the needle tore into her, which made her very upset, understandably, but the funny thing was it was the nurse who went to pieces and panicked. I had to take charge and I said to her, ‘Don’t worry, I’ll sort Annabelle out, you take Daniel and finish giving him his jabs.’ I knew he would be no problem because he was still asleep. While I turned to pacify my daughter, the nurse lay Daniel on the bed but she kept looking over at Annabelle and I had to keep reassuring her that she was fine and to just attend to Daniel.

"She gave him his second injection, then came over to look at Annabelle’s leg, saying, ‘Oh that’s terrible, that’s terrible.’ She was so distressed and I was still having to pacify her as well as my daughter. She then went back to Daniel but was still looking over at us. I also noticed that she kept looking at the bin. In the end, I asked her if there was a problem. ‘No, no,’ she said, ‘it’s fine.’

"Eventually, I took the children home but, a bit later, Daniel became very feverish so I gave him Calpol and put him to bed. In the night, he started coughing and was very restless. In the morning, he suddenly stopped breathing and went blue. Martin worked on him to try and get him to breathe and I rang for an ambulance. When the medics came, they managed to resuscitate him, sucked a lot of gunk (mucus) out of his chest and told us to get him to the doctor’s.

"When we rang the surgery, Daniel had started this whooping sound so, instead, Martin drove him straight to the hospital where he was diagnosed with whooping cough. He was very poorly for about six weeks and it was such a frightening time. We often wondered whether, in the confusion at the surgery, the nurse had given him the whooping cough vaccine twice and that was why she was in such a state but, unfortunately, we had no proof. We also discovered that nobody had taken into account Daniel’s prematurity and that he wasn’t the right weight to have his inoculations.

"Sometime later, a large red spot appeared in one of his eyes. When I asked the nurse at the surgery about it, she said that I wasn’t to worry as it was only a burst blood vessel. His dad and I wondered if it had happened because of his persistent coughing and straining but, although it has shrunk, it has never fully disappeared.

"We then realised that Daniel’s eyesight was deteriorating. He didn’t seem able to focus on objects put in front of him and instead of going to pick them up directly, which he had always been able to do, he would go around them before he made contact.

"We also noticed that when we hoovered right up to him he wouldn’t respond so, again, I took him to the surgery and told the doctor we were concerned that Daniel couldn’t hear or see properly. She waved a light in his eyes, tested his ears, and said that he looked fine and that we were just being overcautious. As I left the surgery, I hung onto her words, hoping that my fears were wrong.

"A few weeks later, when Daniel was