Today I was talking with a group of mums, all of whom have children with problems – as well as children who dont have anything in particular wrong with them. One of the mums was explaining how she felt when her child was first diagnosed as being on the autistic spectrum. She said that her heart sank and she just cried and cried. Her husband remonstrated with her that she had been sure of the diagnosis before they met with the paediatrician. But she said that the difference was that this was the ultimate confirmation, and could no longer be ignored.

All of the mums were very clear that they loved their children to bits; they were clear that these children brought just as much happiness and new thinking to their lives as the other children in the family. But, they also said that they remembered the feelings of grief and guilt and loss that they experienced at diagnosis and that some of these feelings were present with them today, despite the counterbalance of joy and pride that they also felt.

It is so easy as professionals to forget that a diagnosis of a problem is like a blow to the bottom of your stomach. It is very much like a bereavement, in that you have to acknowledge the loss of all the dreams and hopes you had for this child . In some ways, this is true for every child . During pregnancy, you may imagine that your child will become a top model ,a scientist, a footballer, soldier or even an Andy Murray. The child is born and gradually during infancy and beyond , you realise that he or she is their own person and will develop their own interests and hobbies . A diagnosis  is, however, different.  This is a total confirmation that your dreams might not happen –the child with cerebral palsy is unlikely to run faster the Usain Bolt – and in order to move on, you have to accept the child you have and to enable the potential he or she shows.

Some things can still work, but maybe not as you expected. There are a couple of beautiful child models with Down’s syndrome. There are successful deaf models; young people with Tourette’s syndrome play football, sing and dance to professional standards. But it is harder. One young man on the autistic spectrum was brilliant at throwing the javelin . He wn a gold medal at his first competition  , and a bronze at his second. At his first competition, he did not try very hard but was thrilled to get the silver. When asked, he said ‘ now I’ve got a full set’

All our children can bring us tremendous joy . But for many, it is not the particular joy they expected and hoped for, and it is not easy always for parents to forget their dreams . Professionals must be aware of this and take time to take into account the feelings of loss experienced by newly diagnosed parents .

Just had a meeting with a legal eagle – a barrister and the solicitor who has asked me to write the report. Martin was bereaved of his sister in a fairly awful accident which he witnessed. She was expected to survive but four days after the accident suddenly died. This was shocking for all concerned, but particularly so for the boy who was present and felt responsible. I have been involved with him since a couple of months after the accident and have been helpful in some respects, less so in others. Anyway, this meeting was to determine how the law should proceed in his claim for damages. The accident happened just after he had gone to Secondary School. Immediately afterwards, he suffered from extreme grief and shock. He seemed anxious to die himself, and was having all the effects of Post Traumatic Stress Disorder. Martin was, in particular, having nightmares and flashbacks – the sudden re-living of the experience, without warning and with great vividness. His secondary career has not been great although he has been, by and large, well-behaved and caring at home, and reasonably well-behaved at school. However, his whole adolescence has been warped, limited, damaged – choose what word you will – by his ongoing PTSD. He still has nightmares and flashbacks, and, of course, his parents were also traumatised and unable to maybe give him the support they otherwise would have done. But the damages issue consists almost entirely of consideration of his loss of earnings. I believe he is less well qualified than he would have been had he been happier and I believe his self-esteem is lower than if he did not have a sneaking worry that he allowed his sister to be killed. With better qualifications and higher self-esteem, he might have been able to find a job he really enjoyed and earn more money than now seems likely. Of course, it is equally possible that he would have become a naughty boy and got into trouble; we can’t know. But to suggest that the big loss is loss of potential earnings, rather than the loss of an adolescence shared with his sister and with parents who were not themselves in mourning, is a travesty of real values. This was apparently a professional crime executed by people who had thought it out (really???) And the police are treating it ‘like a murder case’, presumably because of the vast amounts of money involved. The law says that Money is more important than Feelings and bereavement. Sad, isn’t it!

One of the hardest things about working with children is determining how much of the problem lies in what particular arena. So many of the children have very real and multiple difficulties. So the child whose father left when he was a toddler, might also be struggling to deal with his ADHD or epilepsy, a difficulty with reading and his grandmother’s death. A teenager who is worried about his looks and future, has doubts about his sexuality and is really anxious about the direction his life should take. What is/should be the priority? Where should we start? Is the Mother’s worry more appropriate or valid than the child’s? Justin has mild acne, diabetes, has been bullied and has just lost his Uncle in a car accident. The bullying was dealt with by a change of school but this has not been totally successful. He gets called ‘Gay’ by boys and girls he meets on the buses and has started, not unreasonably, to avoid public transport. His acne is not visible to me, but his mother tells us that he spends a lot of his time looking in a mirror and trying different sorts of concealer. He was close to his Uncle and tears well up when he tries to talk about him and although he has been diabetic for some years, he is fed up of having ‘a problem’ and wants to be like everyone else. Certainly this was a reasonable referral. Parents hate to see their children unhappy but sometimes it feels as if this is more of the state of adolescence than any one problem in particular. Justin has a girlfriend and theirs is a close, sexual relationship of some months standing. So why is he upset when he is called ‘gay’ by boys he knows only slightly? The diabetes is under control and he manages his diet well; but after several years of needing to ‘control’ what he eats, he’s had enough and wants to go and eat what other people eat without having to think about it.  I feel, half way through this first assessment interview, that, actually, Justin was coping well with all of these things until his Uncle died. His mother’s brother was not much older than Justin. They had spent a lot of time together, he had been a role model and a support. His Uncle was young, the accident was awful, and the newspaper reports meant that the situation was prolonged while all sorts of people commiserated and said how dreadful it all was. And of course, it took a little while for the inquest to happen so that there was a delay before the funeral. Everything made things worse. When you are young, you believe yourself to be invincible. Bad things don’t happen to you , and even if people in the family die, they are old, and it’s their time. His Uncle had been young. Justin knew that one day he had been there, playing football with him in the garden, and the next, he was dead. So Justin learned about death in a very harsh manner, and this sudden knowledge, changed his perception of everything else. Nothing could be easy or frivolous now, people can die.  Bereavement responses are difficult. It can take a year to come to terms with the loss of someone you love. And while you are coping with this, everything else can seem much more complicated. We shall start with bereavement counselling and hope that in this way, I can contain some of his depression about other aspects of his life. Teenagers are often in a state of flux: anxious about who they are and where they are going. They can seem horribly sad and enormously elated. I think this is a lot more, triggered by the loss of his Uncle.

Last Saturday as I left the house, I met my neighbour. He is a tall attractive man and he was inclining his head in order to hear what his daughter was saying. She is just 4, and was obviously on her way to ballet class. She had her special skirt on and that ballet cardigan that ties behind the back, and looked proud and confident in the way that only little children can. She was clever and off to ballet with her daddy who loved her a lot. And he gave the same impression: look at me, I’m taking my daughter to ballet.
It was hard not to think about the contrast with Hazel’s mum. She brought her daughter to see me this morning, pushing the wheelchair carefully so as not to bang the paintwork. Hazel is a bright and bubbly, pretty nine year old. She has some sort of problem which means her mobility is severely restricted, although she can walk a few steps. She’s also diabetic and has difficulty in coping with the regular physical interventions – particularly the injections. Hazel cries then, and her mum hates it – she feels unhappy for Hazel and guilty that she should be hurting. And then maybe cross with Hazel for needing all this help and even more cross with herself for putting her daughter in this position. We all feel guilty when things go wrong for our children – and wish we could take the emotional or physical hurt for them. What I think aggravates all this, is our own secret expectation of the child. From early childhood and playing at mummys and daddys, we develop ideas about what our own children will be like – whether we will give them opportunities denied to us  – wearing a special scarf and hat, going horse riding etc – or being at least as good and possibly better than us at chess, football, English etc. We all have our own dream child in our head, so private that we rarely share them with anyone, and possibly aren’t even particularly aware. Until the baby is born. With the best will in the world, we try to accept the baby we get, but some little part still plans for the secret dream child. Often the gap is not enormous – your daughter becomes a tomboy, enjoys clothes and looks fantastic but doesn’t shine in science, or your son is great in school but doesn’t enjoy sport – but when the child has a disability, things are harder. The child can not walk independently and therefore will need help. The child can not talk fluently and will not be able to express himself. The child can not make sensible decisions and will depend on you to determine what he really wants.  This is a very hard thing. Most parents love their children unconditionally and will do anything to help them, even if it means modifying the idealised version of a beautiful daughter who will eventually be happily married with children of her own. And most parents are little aware of the loss, changing their expectations in the light of the child they are getting to know. The parent of a disabled child has further to go in letting go of a dream they are barely aware of.  Hazel’s mum is a star, and Hazel will have every opportunity she can be given, she will be loved and cherished, perhaps over-protected….. And if her Mum occasionally acknowledges a regret, or dreams about a different world where Hazel is also off to ballet class, well that’s OK.

A couple of weeks ago, I had a referral regarding young children whose father had died quite unexpectedly while their Mum was out. The older child had recognised that Dad was dead and had kept the younger occupied till Mum came home. I phoned Mum to talk about the referral and we agreed that it was better that the children went through an appropriate grieving process but that Mum would talk to me if she felt she wanted to discuss things. We have since spoken twice, she phoned today. She is amazing and intuitive, helping the children to hold on to normal bits of their lives while adjusting to an enormous change. She talks to the children together and separately and is acknowledging that, at their different ages, they have different needs and understanding.  She had already tried to clarify for the children exactly what had happened, so that they would not be left with misconceptions or misunderstandings. Children often take blame, and feel they should have been able to do something even in quite catastrophic circumstances. They need frequent reassurance that nothing could be done.  They also need the chance to discuss different ideas about what happens after death – I personally tend to imagine people I loved sitting on clouds and observing what happens down here, obviously some pragmatic children might point out that they have not seen people when flying on holiday. Other people point out stars as ‘Grandma’ or ‘Daddy’, others explain that we do not know, but that as long as we remember and benefit from all we learned from the deceased, they will never really die. This is the sort of discussion done well by people who are close to the children, with whom the children can take the risk of saying something that might sound silly.  The children were being quite clingy – they had discovered that people die, and can die in a second. Mum was allowing them to sleep with her but encouraging them to separate, and going in to school when there seemed to be the need. We talked about her giving the children something she valued so that they would believe that she would always come back if she could, if only to collect her special ear-ring!!! We also talked about explaining exactly what would happen to the children if , say, she had to go into hospital for a while. They need to be clear about who would look after them, to know that they would be safe. Our most recent conversation was about sending messages to Daddy on helium balloons. By writing messages for them on tags on the balloons and then releasing them into the sky, they can ‘talk’ to Daddy. It’s important that they feel they can continue to dialogue with him, even if his replies aren’t spoken out loud.  This is a wonderful woman, and it might be that helping the children is enabling her to cope also. I am pleased that she feels comfortable about phoning and it is probable that I will never need to meet with the children; this would seem the best way. Obviously if things go pear-shaped, or she feels out of her depth, I will be delighted to help.

It has been months since Sam’s parents split up and he looks a lot better today than when he first came. Then he cried and cried – and he’s 13 so it is not a common sight – this clever boy was devastated when his parents told him they were separating. Mother told me that they had not got on well for years and that this was almost inevitable, but it seems to have come as a big shock to Sam, although his sister and brother seem to be coping well. For session after session, I have just encouraged Sam to tell me how he feels and to help him  ‘reframe’ what he is experiencing, all the while not allowing him to retreat into a fantasy of his parents getting back together. I have told him that, while it is possible, it is easier if he thinks this is forever and tries to see the advantages. Both parents have been to see me and clearly want to help Sam and the others to be happy. The father has been visiting the home every day and has probably spent more time with each of his children since separated than he did before.  However, he has also been on a couple of holidays with a colleague, and Sam has been on holiday with his mum and siblings but without his father. Today he came in chatty and full of plans for the weekend. The appointments have moved from weekly to every three or four weeks and he seems to have done well. He tells me how his father has moved into his own house and, though Sam looks tearful as he tells me this, he cheers up and tells me how they watched television together and of the new kitten they will collect in three weeks. He’s clearly delighted about the kitten and happy to have spent the night alone with his father – the parents are sensibly allowing each child to have their own space and time with each parent. Sam still has many worries about all this though he wants a return to the status quo.  Even though his parents argued about most things, especially money, he preferred the familiar. Sam liked knowing that his parents were under the same roof, even if they were arguing or not speaking. It’s strange how most children prefer to know that their father and mother are in the same house as them, even though they might barely talk to them other than to say a hurried ‘Hi, dad’ on the way to school. And Sam and I have more things to talk about – as he is leaving, his mum asks for a private word and tells me that Sam thinks he smelled perfume on his father’s pillow at the new house????  I don’t know if this represents progress or not. Clearly Sam is becoming more accustomed to things and happier to trust his mum and talk things over with her. On balance, this seems like a good thing.   This was written almost two years ago…. funny how things have moved on. Sam failed his last appointment and had failed one before. He has applied to do various A levels, and continues to chef as a part-time job, making stacks of money and having a jolly life. His Mum has a boyfriend whom he gets on well with, his Dad has become an optional extra in that he will talk to him sometimes but is no longer devastated by absences, nor does he feel let down. His  Mum is wanting to move house and that seems to be seen as an opportunity rather than a loss. Sam is voting with his feet – he feels fine. Now. It’s great. I have succeeded if there remains a vague memory of a bad time and someone helping….can’t remember who exactly, but that’s OK.