NOTICE: THESE ARE THE INNER WORKINGS OF MY MIND! I MAKE NO EXCUSE FOR THEM, THEY ARE... ME. YOU ARE WELCOME TO READ ON - BUT PLEASE MAKE NO JUDGEMENTS!!
27.12.2009
10 years old
Is it OK to lack the happy lump in the throat on your eldest child's tenth birthday?
Is it OK to simply feel low and sad?
Simple answer – of course it's OK, because it is.
More complicated answer – of course not.
I didn't say longer answer, just more complicated.
It was Zack's tenth birthday today. It was not the best day, or the worst day. He was extremely angry about the choice of food for dinner, before he realised he was being offered what he wanted.
As I was preparing the birthday candles, Zack was trying very hard to get Tom out of the room due to the fact that “Tom is a pest”.
Kesia was refusing to eat her dinner, so lighting the candles was delayed.
It was very difficult to find a smile to put on my face as we sang happy birthday.
I have to stop there for now... family having noticed I am writing, there is a sense of discomfort...
Is it OK to lack the happy lump in the throat on your eldest child's tenth birthday?
Is it OK to simply feel low and sad?
Simple answer – of course it's OK, because it is.
More complicated answer – of course not.
I didn't say longer answer, just more complicated.
It was Zack's tenth birthday today. It was not the best day, or the worst day. He was extremely angry about the choice of food for dinner, before he realised he was being offered what he wanted.
As I was preparing the birthday candles, Zack was trying very hard to get Tom out of the room due to the fact that “Tom is a pest”.
Kesia was refusing to eat her dinner, so lighting the candles was delayed.
It was very difficult to find a smile to put on my face as we sang happy birthday.
I have to stop there for now... family having noticed I am writing, there is a sense of discomfort...
27.12.2009 3 for 3
When Tom fell ill, I remember thinking how lucky I was that it was my youngest who had fallen so ill. I already had two children, both under four years old, who neede their parents, and life had to go on. I also remember feeling lucky to have had two healthy children.
When Zack's problems finally erupted, I remember thinking how lucky I was that we only had one child with neuro developmental problems, and that Tom appeared to have a presentation of Noonan syndrome without learning disability. And I was over the moon that my little girl was all well.
Over the last couple of years, Kesia has become more and more like her Daddy – she is quite clearly not your run-of-the-mill eight year old. No panic: she is doing well at school, and functions well on the whole. The fact that she cannot discern fact from fiction is a bother, but she does at least ask. The fact that she cannot tell a joke, and rarely understands one is just a little quirk. The fact that she struggles to express her emotions is more worrisome, especially when her emotions are increasingly overwhelming and upsetting.
So today here I am – three for three. This evening, today, not one of my honeys is doing “OK”. I'd settle for OK – I'd love to think that one of them might be doing well, but that's pie in the sky. “OK” would do.
But Tom is losing weight, and not tolerating much of anything, oral or tube. Nanny and Grampy yesterday remarked on how skinny he is. He's hurting, but at least that's on the way to being addressed.
Kesia... later
Zack is no new worry, nor is he such a worry as he was. His school is absolutely the right place for him, and I'm thrilled that he is happy and thriving there. But we have to get through the next week. I cannot say a word to him without huge repercussions, and already he does not want to be here. This after weeks and weeks of “missing me” and “loving me”. I do not doubt those feelings at all. It's just a shame that he finds it so hard to be with me. The awful thing is to see him kick off, Nick go to calm him and not be able to do a single thing. Nick's resilience for this kind of behaviour is less than mine, and seven days is going to be a trying experience.
Kesia...
My little girl is breaking inside. She is missing Zack terribly. Terribly missing him, and has only just realised that he is there “for good”. Terribly missing him, but a day is enough to remember all the difficult bits of being with Zack. Terribly missing him, and blaming Tom for his departure. Terribly missing him, and trying so hard not to cry tonight when he was screaming at me and trying to pull me downstairs. Terribly missing him, and letting go when I told her it was alright to cry.
She is lost and cannot find her way to Kesia. So more often than not, she falls into the trap of being Zack, which I cannot allow.
Being lost, she has no control... So what she is controlling is her food and drink. Unfortunately, given her personality, and the fact that her little brother does not eat, this means that she is not drinking or eating. I exaggerate of course. But once again, Nanny and Grampy's first remarks on seeing her were how skinny she is. And half a sandwich takes an hour to eat. And she feels sick all the time. And she helps herself to water often, but then I find untouched glasses all over the house.
She's also in pain often, and I cannot tell the real from the psychosomatic, of which there is plenty. Whichever it is, the pain is real enough, and is wearing her out, and making things she enjoys (like gym) far more difficult to do.
And... as ever, following the pattern, no-one feels the need to take me seriously. Or at least, they take my anxiety seriously but not the reality of the situation. I've been really worried about Kesia for a year – last Christmas she went for 2 days without drinking a thing (or eating).
So today – who do I deal with?? My brain just cannot do three at a time. It's flitting from one to the other without actually landing anywhere. I have to find a therapist for Kesia, somehow, somewhere without going privately... phone NSPCC tomorrow. I have to find a solution for Tom's food, and his stoma infection... phone the nurse tomorrow. I have to survive the next seven days with Zack... rather, I have to find a way to help the other four members of the family to survive the week. I will simply because I can only stay out of the way.
Three for three.
Three out of three.
Three.....
When Zack's problems finally erupted, I remember thinking how lucky I was that we only had one child with neuro developmental problems, and that Tom appeared to have a presentation of Noonan syndrome without learning disability. And I was over the moon that my little girl was all well.
Over the last couple of years, Kesia has become more and more like her Daddy – she is quite clearly not your run-of-the-mill eight year old. No panic: she is doing well at school, and functions well on the whole. The fact that she cannot discern fact from fiction is a bother, but she does at least ask. The fact that she cannot tell a joke, and rarely understands one is just a little quirk. The fact that she struggles to express her emotions is more worrisome, especially when her emotions are increasingly overwhelming and upsetting.
So today here I am – three for three. This evening, today, not one of my honeys is doing “OK”. I'd settle for OK – I'd love to think that one of them might be doing well, but that's pie in the sky. “OK” would do.
But Tom is losing weight, and not tolerating much of anything, oral or tube. Nanny and Grampy yesterday remarked on how skinny he is. He's hurting, but at least that's on the way to being addressed.
Kesia... later
Zack is no new worry, nor is he such a worry as he was. His school is absolutely the right place for him, and I'm thrilled that he is happy and thriving there. But we have to get through the next week. I cannot say a word to him without huge repercussions, and already he does not want to be here. This after weeks and weeks of “missing me” and “loving me”. I do not doubt those feelings at all. It's just a shame that he finds it so hard to be with me. The awful thing is to see him kick off, Nick go to calm him and not be able to do a single thing. Nick's resilience for this kind of behaviour is less than mine, and seven days is going to be a trying experience.
Kesia...
My little girl is breaking inside. She is missing Zack terribly. Terribly missing him, and has only just realised that he is there “for good”. Terribly missing him, but a day is enough to remember all the difficult bits of being with Zack. Terribly missing him, and blaming Tom for his departure. Terribly missing him, and trying so hard not to cry tonight when he was screaming at me and trying to pull me downstairs. Terribly missing him, and letting go when I told her it was alright to cry.
She is lost and cannot find her way to Kesia. So more often than not, she falls into the trap of being Zack, which I cannot allow.
Being lost, she has no control... So what she is controlling is her food and drink. Unfortunately, given her personality, and the fact that her little brother does not eat, this means that she is not drinking or eating. I exaggerate of course. But once again, Nanny and Grampy's first remarks on seeing her were how skinny she is. And half a sandwich takes an hour to eat. And she feels sick all the time. And she helps herself to water often, but then I find untouched glasses all over the house.
She's also in pain often, and I cannot tell the real from the psychosomatic, of which there is plenty. Whichever it is, the pain is real enough, and is wearing her out, and making things she enjoys (like gym) far more difficult to do.
And... as ever, following the pattern, no-one feels the need to take me seriously. Or at least, they take my anxiety seriously but not the reality of the situation. I've been really worried about Kesia for a year – last Christmas she went for 2 days without drinking a thing (or eating).
So today – who do I deal with?? My brain just cannot do three at a time. It's flitting from one to the other without actually landing anywhere. I have to find a therapist for Kesia, somehow, somewhere without going privately... phone NSPCC tomorrow. I have to find a solution for Tom's food, and his stoma infection... phone the nurse tomorrow. I have to survive the next seven days with Zack... rather, I have to find a way to help the other four members of the family to survive the week. I will simply because I can only stay out of the way.
Three for three.
Three out of three.
Three.....
14.12.2009
Respite, noun a pause or rest from something difficult or unpleasant
Strange word, respite. Not one used so regularly in normal everyday life. And yet, one that has come to mean the difference between existing and living for me.
I was thinking of this yesterday, and into the evening. Tom was at Cherry Trees, our local respite centre. Insert a parenthesis here as I describe the setting...
(Down a little winding lane, ending in a cul de sac, is a beautiful old building, initially reminiscent of a school but actually an old hospital. About one hundred years ago, children afflicted with tubercular hips were treated here in Alexandra Hospital. Cars nestle higgledy piggledy in the small car park, as best they can and always leaving access for the two minibuses. When you are as small as I am, you can just about make out the frames of various swings and play equipment above the high garden fence, and the heads of the staff as they answer your ring.
Cherry Trees is a home away from home, but lacking all the tension. The main house has a lovely quiet room with sofas and beanbags where the children can listen to music or watch the television. The other room has two distinct soft play areas - one for children such as mine who can and love to scramble around screaming and jumping in delight. The other is much more quiet and involves many sensory toys and cushions. Across the garden is the barn, which now house an amazing sensory room complete with lights, music and water bed. What is currently the temporary kitchen and dining room is usually the messy room to paint and do crafts in.
Most bedrooms have a couple of beds, decorated in a very homely fashion. Bathrooms and toilets give away the nature of Cherry Trees' inhabitants more than anywhere else, with their hoists and special seats.
More than any of these immovable things, anyone who visits Cherry Trees will notice the staff. Always quick to react, but gentle in their movements, acutely aware of their charges' disabilities, yet full of high and stringent expectations, they are the beating heart of Cherry Trees. Most of all, they have fun!)
So.. this musing is going to meander, because it has been ten days since I started it, and I have not had the chance to revisit it since.
Respite... in the world of special needs children, in Surrey, at the moment, this takes on several forms. There are many ways of getting help at home. In this case, a carer comes to your home to look after the children, allowing you usually three hours to rest, or go to the dentist, or do the last minute Christmas shopping.. or simply to have someone to help with the normal routines of the home. It is invaluable help, but as the children grow older, I find it much harder to leave the house when someone is here. Mostly that's because they are more argumentative, or a bigger responsibility and I don't feel comfortable leaving it completely to someone other. So as respite, it's not brilliant, but as help to keep going - it makes the difference between night and day.
Then there is respite such as is offered at Cherry Trees. There are not enough places at Cherry Trees, and not enough places like Cherry Trees.
But when Tom (or Zack) is at Cherry Trees, I truly rest. The weight of looking after my boys leaves my shoulders, and I feel substantially lighter, both physically and mentally. I know that they are able to look after Tom's medical needs, just as I know that they are more than able to handle whatever Zack throws at them (it has to be said that Zack has taught them a thing or two about dealing with a bright child who is autistic!!).
So the nights when the boys are at Cherry Trees are the nights when I sleep.
Strange thing... you only realise the reality of a situation when it is taken away. So I only realise in those mornings how badly I sleep the rest of the time. Similarly, it is only with Zack's departure to residential school that I realise quite how much his disability ruled our lives. Often in the simplest ways, life was not normal.
I am rambling, but this is a part of why I started this...
Many parents resist respite, social services, home services. It's not surprising really. All this help comes at a price: your privacy, your sense of control, often your sense of parenthood are sacrificed when you make the call to say "I need help".
I didn't. At least, I tried not to. As soon as Tom fell ill, I knew in a very objective, detached way that I would need help. "I" because Nick needs to continue working. "I" because I have tended to do the childcare on a day to day basis. "I" because in the face of crisis, I am the one who holds the others. So "I" decided that for better or worse, I would ask for help and do my best to accept it.
It was very difficult. After all, I am the great Looker-afterer. If there is one thing I do, it is cope in the face of adversity. So to pick up the phone to a stranger and utter the fateful words: "I need help". That was hard. And the first people who came to help didn't stay that long. They were wonderful, and a big step in the journey of accepting others, but I just didn't know how to let go. I will always remember the first lady who helped us, though her name temporarily escapes me. She taught me, slowly but surely how to use such help. Liz also started with us back then - Tom was 8 months old. She still sees us twice a week, and feels more like an aunt than a carer. She has been with us through thick and thin - Tom's surgeries, his tube feeds, his vomiting, Zack's school problems and behaviour problems... through to the decision to home educate, then to send him to residential school.
Many times, Liz does little more than collect the children from school and listen to me. But a big part of the help she provides me is a kind and non-judgmental ear. I am certain that a great part of the reason I lasted so long before breaking is Liz, Katie, Annette, Emma... all those wonderful listeners who are never shocked and always show such empathy.
All of a sudden, I'm done here for now..
I was thinking of this yesterday, and into the evening. Tom was at Cherry Trees, our local respite centre. Insert a parenthesis here as I describe the setting...
(Down a little winding lane, ending in a cul de sac, is a beautiful old building, initially reminiscent of a school but actually an old hospital. About one hundred years ago, children afflicted with tubercular hips were treated here in Alexandra Hospital. Cars nestle higgledy piggledy in the small car park, as best they can and always leaving access for the two minibuses. When you are as small as I am, you can just about make out the frames of various swings and play equipment above the high garden fence, and the heads of the staff as they answer your ring.
Cherry Trees is a home away from home, but lacking all the tension. The main house has a lovely quiet room with sofas and beanbags where the children can listen to music or watch the television. The other room has two distinct soft play areas - one for children such as mine who can and love to scramble around screaming and jumping in delight. The other is much more quiet and involves many sensory toys and cushions. Across the garden is the barn, which now house an amazing sensory room complete with lights, music and water bed. What is currently the temporary kitchen and dining room is usually the messy room to paint and do crafts in.
Most bedrooms have a couple of beds, decorated in a very homely fashion. Bathrooms and toilets give away the nature of Cherry Trees' inhabitants more than anywhere else, with their hoists and special seats.
More than any of these immovable things, anyone who visits Cherry Trees will notice the staff. Always quick to react, but gentle in their movements, acutely aware of their charges' disabilities, yet full of high and stringent expectations, they are the beating heart of Cherry Trees. Most of all, they have fun!)
So.. this musing is going to meander, because it has been ten days since I started it, and I have not had the chance to revisit it since.
Respite... in the world of special needs children, in Surrey, at the moment, this takes on several forms. There are many ways of getting help at home. In this case, a carer comes to your home to look after the children, allowing you usually three hours to rest, or go to the dentist, or do the last minute Christmas shopping.. or simply to have someone to help with the normal routines of the home. It is invaluable help, but as the children grow older, I find it much harder to leave the house when someone is here. Mostly that's because they are more argumentative, or a bigger responsibility and I don't feel comfortable leaving it completely to someone other. So as respite, it's not brilliant, but as help to keep going - it makes the difference between night and day.
Then there is respite such as is offered at Cherry Trees. There are not enough places at Cherry Trees, and not enough places like Cherry Trees.
But when Tom (or Zack) is at Cherry Trees, I truly rest. The weight of looking after my boys leaves my shoulders, and I feel substantially lighter, both physically and mentally. I know that they are able to look after Tom's medical needs, just as I know that they are more than able to handle whatever Zack throws at them (it has to be said that Zack has taught them a thing or two about dealing with a bright child who is autistic!!).
So the nights when the boys are at Cherry Trees are the nights when I sleep.
Strange thing... you only realise the reality of a situation when it is taken away. So I only realise in those mornings how badly I sleep the rest of the time. Similarly, it is only with Zack's departure to residential school that I realise quite how much his disability ruled our lives. Often in the simplest ways, life was not normal.
I am rambling, but this is a part of why I started this...
Many parents resist respite, social services, home services. It's not surprising really. All this help comes at a price: your privacy, your sense of control, often your sense of parenthood are sacrificed when you make the call to say "I need help".
I didn't. At least, I tried not to. As soon as Tom fell ill, I knew in a very objective, detached way that I would need help. "I" because Nick needs to continue working. "I" because I have tended to do the childcare on a day to day basis. "I" because in the face of crisis, I am the one who holds the others. So "I" decided that for better or worse, I would ask for help and do my best to accept it.
It was very difficult. After all, I am the great Looker-afterer. If there is one thing I do, it is cope in the face of adversity. So to pick up the phone to a stranger and utter the fateful words: "I need help". That was hard. And the first people who came to help didn't stay that long. They were wonderful, and a big step in the journey of accepting others, but I just didn't know how to let go. I will always remember the first lady who helped us, though her name temporarily escapes me. She taught me, slowly but surely how to use such help. Liz also started with us back then - Tom was 8 months old. She still sees us twice a week, and feels more like an aunt than a carer. She has been with us through thick and thin - Tom's surgeries, his tube feeds, his vomiting, Zack's school problems and behaviour problems... through to the decision to home educate, then to send him to residential school.
Many times, Liz does little more than collect the children from school and listen to me. But a big part of the help she provides me is a kind and non-judgmental ear. I am certain that a great part of the reason I lasted so long before breaking is Liz, Katie, Annette, Emma... all those wonderful listeners who are never shocked and always show such empathy.
All of a sudden, I'm done here for now..
26.08.2009
So... I'm on the warpath. This musing is a copy of a letter i will be sending tomorrow to as many important people within the local NHS trust as I can... Then we will see
To whom it may concern:
I am writing to you to voice my concern regarding the disappearance of Community Nurse for Children with Disabilities, Mark Brown.
Ten days ago I saw Mark to discuss a behavioural intervention that we had been obliged to undertake with my son in consultation with the local police. Needless to say, when one is left with no option but to involve the police in a nine year old's life the situation is serious and emotionally distressing. Our initial meeting had gone well, and this meeting with Mark was to discuss how to move forward from there.
Two days later, I contacted my nurse at Clarendon House (who has been seeing me following a severe breakdown in March, all due to my son's disability) as she and Mark were due to see me in reference to the domestic violence unit becoming involved with my family. She informed me that Mark was no longer working for the trust.
In bewilderment, I attempted to contact the CTPLD for some explanation. None of the three teams that I contacted (Mole Valley, Epsom and Cobham) were answering the phones. I left messages for Helen Devlin to contact me on each of their answerphones. Eventually, I was able to contact someone at the Complaints department of the trust, who assured me that Ms. Devlin would call me within two hours.
Ms. Devlin did indeed call me, with the same baffling message, that Mark was no longer employed by the trust. She refused to give me any details, falling back on the remark that any details could not be disclosed in order to protect Mark's confidentiality. I asked her to reassure me as to Mark's health, and to explain how a situation can come about in which a community nurse leaves with no notice, no final visit and no hand over. In my experience within both the health service and the education system, such a thing is unheard of.
Ms. Devlin assured me that continuity of care would be provided, although she failed to explain how a year's worth of extraordinarily dedicated work resulting in a trusted relationship can be replaced so easily and without Mark's help. Maybe she fails to realise that children with such disabilities as autism rely completely on continuity, and make relationships only with great difficulty. She promised to call me back on the following day after having spoken to the senior nurse in the service, Phil Perkins. A week later, I have received a letter telling me that Phil will be taking on Mark's patients.
I have since learned through a friend that Mark was dismissed. I would like an explanation as to how such a thing is possible. Mark Brown has shown nothing but absolute dedication to his work and to his patients. He works with a family as a whole, understanding that a child with such disabilities affects the whole family, and that parents can need help maintaining a healthy and strong relationship with each other as well as with their children.
Mark is endlessly patient with our children, perpetually giving of his time and energy, and always firm. He stands strongly with the child, yet has the ability to make the child understand that he is absolutely behind the parents. I have attended talks given by Mark to groups of parents and teachers who look after children with learning disabilities, and the reception he gets at such gatherings is one of gratitude and respect. At each of these meetings, he takes questions from the floor. In every case, someone has asked the question, “how can we be referred to you?”, which is followed by a rumble of approval.
I and my husband and children are privileged to be one of Mark's families. He has in no uncertain terms saved our family this year, and I believe that he may have saved our lives.
Given my experience of Mark, and that of at least four of his other families that I know, I am utterly confused that the trust should have made the decision to dismiss him. In light of the work that he does with us, I respectfully request an explanation of this dismissal, and a clear plan of how the trust expects to replace the time and energy given to his patients.
Children's services are in crisis. I do not know the details of budgets, work conditions or criteria. But I know that I and my younger children are in physical danger due to my son's disability. I know that I spent most of the weekend and Monday with a friend whose daughter attacks her on a daily basis. She is covered in deep, permanently scarring scratch marks inflicted by that daughter, and has had almost no help in the last twelve years. Our friends of the past fade away as they are frightened by our children. Our families are so deeply hurt by our personal battles that they cannot stay and watch us being abused, and yet they are powerless to help.
Now, you have removed the one person who helped.
When speaking to one of the other community nurses, she made the comment that the service was no longer providing any behavioural intervention. She also made no attempt to intervene when a child was attacking her mother. I am left with two questions. If this service is no longer helping us with these extreme and challenging behaviours, and they are not prepared to step in to protect someone in immediate physical danger, what is their role? More importantly, if they do not provide the help that we so desperately need, who will?
Early and regular intervention is no doubt expensive. Common sense dictates that such intervention is far cheaper than the cost of a family breakdown. In such a case, psychiatric treatment of one or both parents will be inevitable. The disabled child and their siblings will require fostering, or more specialist care provision. These costs, however, can be nothing if compared to the long term costs of such a traumatic breakdown. I am in no doubt that I am not the first person to come to this conclusion.
Yet Surrey children's services seem to be increasingly reactive, and are taking less and less proactive measures to help families in desperate need. This must change, and it must change immediately. There are many steps to be taken in order to improve things, but one of the first must be to reassess your relationship with Mark Brown.
Thank you for your time, and I would appreciate your response as soon as possible. In the time that it takes for you to receive this letter and read it, the reality is that I will have been hit, kicked or punched by my son. His younger and medically vulnerable brother will probably have been pushed over and hurt. My friend's arms and face will be bleeding once again, and her younger son will have new bruises.
In the time it takes for you to respond, a mother will be curled up on the floor as her child kicks her repeatedly. While the beating occurs, she or I will hush calmly, reassuring our other children, and trying to reach our disabled child through the blur of their anger. Once the storm is over, we will pretend that we are alright, and we will take our child in our arms and try to bring them back to our world and out of the darkness and fear that overcomes them.
In the time it takes for you to effect change, someone will be in danger, and someone may not live to tell the tale. I speak from the heart, and there is no room in my life for exaggeration.
Yours truly,
Benedicte and Nick Symcox
To whom it may concern:
I am writing to you to voice my concern regarding the disappearance of Community Nurse for Children with Disabilities, Mark Brown.
Ten days ago I saw Mark to discuss a behavioural intervention that we had been obliged to undertake with my son in consultation with the local police. Needless to say, when one is left with no option but to involve the police in a nine year old's life the situation is serious and emotionally distressing. Our initial meeting had gone well, and this meeting with Mark was to discuss how to move forward from there.
Two days later, I contacted my nurse at Clarendon House (who has been seeing me following a severe breakdown in March, all due to my son's disability) as she and Mark were due to see me in reference to the domestic violence unit becoming involved with my family. She informed me that Mark was no longer working for the trust.
In bewilderment, I attempted to contact the CTPLD for some explanation. None of the three teams that I contacted (Mole Valley, Epsom and Cobham) were answering the phones. I left messages for Helen Devlin to contact me on each of their answerphones. Eventually, I was able to contact someone at the Complaints department of the trust, who assured me that Ms. Devlin would call me within two hours.
Ms. Devlin did indeed call me, with the same baffling message, that Mark was no longer employed by the trust. She refused to give me any details, falling back on the remark that any details could not be disclosed in order to protect Mark's confidentiality. I asked her to reassure me as to Mark's health, and to explain how a situation can come about in which a community nurse leaves with no notice, no final visit and no hand over. In my experience within both the health service and the education system, such a thing is unheard of.
Ms. Devlin assured me that continuity of care would be provided, although she failed to explain how a year's worth of extraordinarily dedicated work resulting in a trusted relationship can be replaced so easily and without Mark's help. Maybe she fails to realise that children with such disabilities as autism rely completely on continuity, and make relationships only with great difficulty. She promised to call me back on the following day after having spoken to the senior nurse in the service, Phil Perkins. A week later, I have received a letter telling me that Phil will be taking on Mark's patients.
I have since learned through a friend that Mark was dismissed. I would like an explanation as to how such a thing is possible. Mark Brown has shown nothing but absolute dedication to his work and to his patients. He works with a family as a whole, understanding that a child with such disabilities affects the whole family, and that parents can need help maintaining a healthy and strong relationship with each other as well as with their children.
Mark is endlessly patient with our children, perpetually giving of his time and energy, and always firm. He stands strongly with the child, yet has the ability to make the child understand that he is absolutely behind the parents. I have attended talks given by Mark to groups of parents and teachers who look after children with learning disabilities, and the reception he gets at such gatherings is one of gratitude and respect. At each of these meetings, he takes questions from the floor. In every case, someone has asked the question, “how can we be referred to you?”, which is followed by a rumble of approval.
I and my husband and children are privileged to be one of Mark's families. He has in no uncertain terms saved our family this year, and I believe that he may have saved our lives.
Given my experience of Mark, and that of at least four of his other families that I know, I am utterly confused that the trust should have made the decision to dismiss him. In light of the work that he does with us, I respectfully request an explanation of this dismissal, and a clear plan of how the trust expects to replace the time and energy given to his patients.
Children's services are in crisis. I do not know the details of budgets, work conditions or criteria. But I know that I and my younger children are in physical danger due to my son's disability. I know that I spent most of the weekend and Monday with a friend whose daughter attacks her on a daily basis. She is covered in deep, permanently scarring scratch marks inflicted by that daughter, and has had almost no help in the last twelve years. Our friends of the past fade away as they are frightened by our children. Our families are so deeply hurt by our personal battles that they cannot stay and watch us being abused, and yet they are powerless to help.
Now, you have removed the one person who helped.
When speaking to one of the other community nurses, she made the comment that the service was no longer providing any behavioural intervention. She also made no attempt to intervene when a child was attacking her mother. I am left with two questions. If this service is no longer helping us with these extreme and challenging behaviours, and they are not prepared to step in to protect someone in immediate physical danger, what is their role? More importantly, if they do not provide the help that we so desperately need, who will?
Early and regular intervention is no doubt expensive. Common sense dictates that such intervention is far cheaper than the cost of a family breakdown. In such a case, psychiatric treatment of one or both parents will be inevitable. The disabled child and their siblings will require fostering, or more specialist care provision. These costs, however, can be nothing if compared to the long term costs of such a traumatic breakdown. I am in no doubt that I am not the first person to come to this conclusion.
Yet Surrey children's services seem to be increasingly reactive, and are taking less and less proactive measures to help families in desperate need. This must change, and it must change immediately. There are many steps to be taken in order to improve things, but one of the first must be to reassess your relationship with Mark Brown.
Thank you for your time, and I would appreciate your response as soon as possible. In the time that it takes for you to receive this letter and read it, the reality is that I will have been hit, kicked or punched by my son. His younger and medically vulnerable brother will probably have been pushed over and hurt. My friend's arms and face will be bleeding once again, and her younger son will have new bruises.
In the time it takes for you to respond, a mother will be curled up on the floor as her child kicks her repeatedly. While the beating occurs, she or I will hush calmly, reassuring our other children, and trying to reach our disabled child through the blur of their anger. Once the storm is over, we will pretend that we are alright, and we will take our child in our arms and try to bring them back to our world and out of the darkness and fear that overcomes them.
In the time it takes for you to effect change, someone will be in danger, and someone may not live to tell the tale. I speak from the heart, and there is no room in my life for exaggeration.
Yours truly,
Benedicte and Nick Symcox
2.08.2009
To what extent are responsible for others?
As a mother, I am responsible for my children's welfare, physical, emotional and their ability to achieve their potential. Schools don't often like a mum like me who really wants to know what's going on and why my daughter is coasting along!
As a wife, already the question is more difficult. I feel responsible for Nick's emotional wellbeing, but only because to the same extent I trust him with my own. Watch out, I do not mean to imply in any way that all the responsibility is on the other, merely that the love I feel for him encompasses a care. In my case, I can take too much of that responsibility on my shoulders, often creating misunderstandings. It's a work in progress! Certainly, we look out for each other more than we might for a stranger.
As a daughter... I don't know what the correct answer is, but I have always felt responsible
As a mother, I am responsible for my children's welfare, physical, emotional and their ability to achieve their potential. Schools don't often like a mum like me who really wants to know what's going on and why my daughter is coasting along!
As a wife, already the question is more difficult. I feel responsible for Nick's emotional wellbeing, but only because to the same extent I trust him with my own. Watch out, I do not mean to imply in any way that all the responsibility is on the other, merely that the love I feel for him encompasses a care. In my case, I can take too much of that responsibility on my shoulders, often creating misunderstandings. It's a work in progress! Certainly, we look out for each other more than we might for a stranger.
As a daughter... I don't know what the correct answer is, but I have always felt responsible
31.07.2009
I don't really know where to write this. It's more of an event, that I need to put "out there" to stop from going mad, but I worry that those who care for me will read it and worry, and that those who don't will...
Well, what conclusion do you draw? That here is a "bad" child? That his parents really aren't controlling him? I don't know.
So it's here, in my musings. That warning at the top of the page is as much for your protection as for mine, nearest and dearest. It's so terribly hard to speak of these things that are at once so terrible and so sad. Helplessness is a difficult thing, and there is nothing that you can do to help at the moment. If I tell you, am I merely burdening you with more concern and sadness unnecessarily? Or actually, do you have a right, even a duty to know the bad alongside the good?
Once again, I feel I must guard your hearts. I am protected, both physically and emotionally, and all is being done that can be done. In that you must trust. As Mark reminds me often, "trust and power". But the reality of my life is difficult, increasingly so. I cannot be the sole keeper of these events, and so I write them here. A diary is not the same - for some reason it's important that this can choose to be read, that it is not a secret.
My sweet boy is lost right now. He is so far inside his own world that I can barely see him, hardly hear him. Occasionally he sees me and recognises me, but more often he seems to see me as an obstruction. The confusion of the real world, the anxiety of a life which has fallen apart, the fear of an unknown future... All these things translate into a powerful rage that finds its focus only in me.
So now the help has to focus on me and safety.
A little broken laugh of shards of glass echoes inside me as I think that I now have my own personall line to the emergency services. All I need do in the case of a prolonged attack (and I wish some were not prolonged) is to dial 999. None of the usual questions for me, oh no! The computer immediately flashes up "send a police officer to this address immediately".
The service is unquestionably remarkable, as is the calm, understanding and kindness of the police officers I have met.
The need for this service makes a little part of my heart crack - like the pebble that hits the windscreen of a car on the motorway. There is a chip in my heart.
I have to choose between my children... Solomon eat your heart out, baby!
And the one who is threatening our safety is the one who is most vulnerable, whose life, quite literally hangs in the balance.
I want to thank the friends who dropped their children at their neighbours last night to come and stay with me until Nick could get home.
I want to thank those other friends who truly understand all this because it is their normality as well.
I want to thank all those who help.
I want to hope that my little boy will eventually find his place in our world. That he will realise how much we love him. That he will not think we gave up on him.
Enough now.
Well, what conclusion do you draw? That here is a "bad" child? That his parents really aren't controlling him? I don't know.
So it's here, in my musings. That warning at the top of the page is as much for your protection as for mine, nearest and dearest. It's so terribly hard to speak of these things that are at once so terrible and so sad. Helplessness is a difficult thing, and there is nothing that you can do to help at the moment. If I tell you, am I merely burdening you with more concern and sadness unnecessarily? Or actually, do you have a right, even a duty to know the bad alongside the good?
Once again, I feel I must guard your hearts. I am protected, both physically and emotionally, and all is being done that can be done. In that you must trust. As Mark reminds me often, "trust and power". But the reality of my life is difficult, increasingly so. I cannot be the sole keeper of these events, and so I write them here. A diary is not the same - for some reason it's important that this can choose to be read, that it is not a secret.
My sweet boy is lost right now. He is so far inside his own world that I can barely see him, hardly hear him. Occasionally he sees me and recognises me, but more often he seems to see me as an obstruction. The confusion of the real world, the anxiety of a life which has fallen apart, the fear of an unknown future... All these things translate into a powerful rage that finds its focus only in me.
So now the help has to focus on me and safety.
A little broken laugh of shards of glass echoes inside me as I think that I now have my own personall line to the emergency services. All I need do in the case of a prolonged attack (and I wish some were not prolonged) is to dial 999. None of the usual questions for me, oh no! The computer immediately flashes up "send a police officer to this address immediately".
The service is unquestionably remarkable, as is the calm, understanding and kindness of the police officers I have met.
The need for this service makes a little part of my heart crack - like the pebble that hits the windscreen of a car on the motorway. There is a chip in my heart.
I have to choose between my children... Solomon eat your heart out, baby!
And the one who is threatening our safety is the one who is most vulnerable, whose life, quite literally hangs in the balance.
I want to thank the friends who dropped their children at their neighbours last night to come and stay with me until Nick could get home.
I want to thank those other friends who truly understand all this because it is their normality as well.
I want to thank all those who help.
I want to hope that my little boy will eventually find his place in our world. That he will realise how much we love him. That he will not think we gave up on him.
Enough now.
27.07.2009
Wisdom vs that little voice inside my head
Against the wise advice of Mark....
The thing is, I've just had a wonderful evening. It may yet turn when I ask Kesia to go to bed, and Zack to stay in his room, but so far it's been quite magical.
Yes, harsh words were spoken by Zack.
Yes, Tom tried to whine about Kesi not playing with him at Challengers.
Yes, bathtime threatened to be a horrific battle.
But...
Somehow, a little magic occurred...
A little spark of happiness, a small tingle of expectation...
Bathtime just... happened. I don't know how, I don't know why, and yet it did.
And then the magic continued - that is the beauty of this evening. We had as close as we can get to a family meal around the table. Chatting, exchanging thoughts about the day and hopes about the morrow.
Zack cleared his plate when I asked him to. That may seem a small thing, but it is the first time in a very very long time that he has done anything I've asked without a fight. His brother and sister followed suit, and before I knew it, all was clean and tidy!
We then had a calm bit of television, again together, again talking about what we were watching.
Tom is now in bed, asleep.
Zack and Kesi are playing together with their DS gizmos.
Nick is home since I started writing, and enjoying this unexpected hiatus of domestic bliss.
So, against advice I long to know what went so right today!! I am smiling as I type this, because I know full well that there is no answer. I am storing this evening as a good memory to be retrieved in darker times.
But a little voice inside still asks, "How do we make this happen tomorrow?".
How indeed?
Tomorrow will bring what tomorrow brings.....
The thing is, I've just had a wonderful evening. It may yet turn when I ask Kesia to go to bed, and Zack to stay in his room, but so far it's been quite magical.
Yes, harsh words were spoken by Zack.
Yes, Tom tried to whine about Kesi not playing with him at Challengers.
Yes, bathtime threatened to be a horrific battle.
But...
Somehow, a little magic occurred...
A little spark of happiness, a small tingle of expectation...
Bathtime just... happened. I don't know how, I don't know why, and yet it did.
And then the magic continued - that is the beauty of this evening. We had as close as we can get to a family meal around the table. Chatting, exchanging thoughts about the day and hopes about the morrow.
Zack cleared his plate when I asked him to. That may seem a small thing, but it is the first time in a very very long time that he has done anything I've asked without a fight. His brother and sister followed suit, and before I knew it, all was clean and tidy!
We then had a calm bit of television, again together, again talking about what we were watching.
Tom is now in bed, asleep.
Zack and Kesi are playing together with their DS gizmos.
Nick is home since I started writing, and enjoying this unexpected hiatus of domestic bliss.
So, against advice I long to know what went so right today!! I am smiling as I type this, because I know full well that there is no answer. I am storing this evening as a good memory to be retrieved in darker times.
But a little voice inside still asks, "How do we make this happen tomorrow?".
How indeed?
Tomorrow will bring what tomorrow brings.....
17.07.2009
If you know Mark Brown, please take the time to fill this out!
ACHIEVEMENT AND RECOGNITION AWARDS 2009
NOMINATION FORM
Guidelines:
Before you begin to complete this form, please take a few moments to familiarise yourself with the rules, as outlined on the last page and read the following information about the nomination process.
· Nominations must be on this form and returned by 5pm on Friday 18 September 2009
· If you want to make more than one nomination, please photocopy this form, or download a copy from the Trust’s extranet or public website.
· Completed forms may be returned in person or by post to: Jo Whitby, Ridgewood Centre, Old Bisley Road, Frimley, GU16 9QE. The closing date is 18 September 2009.
· Alternatively you can fax or email them to her on fax 01276 605599 or [email protected]
· Please note that the most important part of the nomination form is the question where you are asked to describe (in not more than 350 words) why the individual or team you are nominating deserve to win the award. It is this part of the form that the judging panel will base their decisions on – so please take some time to think through your response carefully. To assist you, here are some of the questions that the panel will be judging against. Please keep these in mind when giving your response:
- Has the individual or team made a significant difference to the lives of the people who use our services, their carers and/or other staff?
- Has the individual or team exceeded what would normally be expected of them in their job?
- In doing what they do, how much does the individual or team listen to the views of other people – such of people who use our services, carers, staff and other partners?
- How ambitious and/or creative and/or innovative and/or dedicated is the individual or team to want to make a difference?
Successful Category Awards are:
Bronze (Highly Commended) - £50 cheque plus an award
Silver (Runner-Up) - £100 cheque plus an award
Gold (Category Winner) - £200 cheque plus an award
Categories are:
1. Creativity and Innovation (Light Bulb Moments)This category will look for outstanding developments or new ways of working by a team or individual who can show clear and direct improvements to patient care and/or service delivery now or for the future.
2. LeadershipThis is for an individual that has demonstrated leadership and management skills. Irrespective of their position, this person will have acted as a role model, set high standards, acted as a champion for these standards and encouraged others to do the same. This category will look for individuals who through their actions have inspired and/or motivated others. The qualities of leadership are not exclusive to managers and therefore this category is open to all staff.
3. People Who Use our Services and CarersThe Trust is committed to involving not ignoring and listens to the people who use its services and their carers. This award will recognise both individuals or teams who have shown commitment to creating a person centred service, either by involving people directly or through partnership projects to improve services or experiences of the NHS.
4. The Team of the YearThis award is for the team that has demonstrated their ability to deliver clear benefits through working together effectively and efficiently. This may be against a backdrop of considerable pressure eg staff shortage; resistance or changes, which have achieved significant improvements in practices or services through effective team working. The definition of a team in this context is two or more members of Trust staff sharing the same goals in either day-to-day work or on a particular project or task.
5. Employee of the YearThis award recognises the achievements of an individual who goes beyond his or her job description to treat people well and enable the Trust to deliver its objectives. They will bring about change and clear benefits for the people who use our services and their carers through their creative thinking, commitment, vision, determination and drive.
6. Partnership WorkingThis category will look for individuals or teams who have worked to improve and foster partnership working within their area of work. Partnership could include, work with staff side colleagues, social care colleagues, or PCT colleagues.
7. Volunteer of the YearThis award is for an individual or charity that has worked in partnership with the Trust, giving up their time (UNPAID), to bring benefits to people who use our services, their carers and staff.
8. Valuing DifferenceThe Trust is committed to ensuring that the services we provide reflect the diversity of the communities we serve. Winners in this category will need to demonstrate how they value difference in their everyday work.
9. Partner of the YearThis award is for those individuals or teams who work within the Trust providing services on a contractual basis and whom an external contractor/partner employs. The winner of this award will need to demonstrate how they have improved services which benefit our staff, people who use our services and their carers. Nominations could be external estates/hotel services etc.
STARS Awards 2009 Nomination Form
Please complete the details below:
Your Name: Job Title:Email: Address:Telephone No:
Please give the name of the Individual or Team that you are nominating together with their contact details. If you are nominating a team, please give a ‘lead’ contact, for the team and their contact details. Please also list out the other members of the team and their contact details (listing on a separate sheet if necessary).
Nominee’s Name:Job Title:Email: Address:Telephone No:
Which award are you nominating them for (ONE CATEGORY ONLY PER SHEET)?
In no more than 350 words, please describe why you think the individual or team should win this award. Please include at least two examples of what has been achieved as evidence to support your nomination. (Please use a separate sheet of paper if needed, but remember the word limit.)
Description continued
If you are nominating an individual or team for the User and Carer Involvement category, you will need the support of two people who use our services and/or the people who care for them and/or people representing their interests. Please get their permission first before giving us their names and contact details, in the space below. This information will be stored and used in accordance with the Data Protection Act 1988. The information which you provide will only be used by the Trust for the purposes of nominating staff or volunteers for an award.
Name (first person):AddressEmail:Telephone no: Name (second person):Address:Email:Telephone no:
Completed forms should be returned to: Jo Whitby, Ridgewood Centre, Old Bisley Road, Frimely, Surrey GU16 9QE
Closing date for nominations is 18 September 2009
Rules:
The following rules are designed to make the nomination process as clear and as fair as possible.
1. Nominations can be made by the following:- Employees of Surrey and Borders Partnership NHS Foundation Trust and Social Services employees who are working as part of an integrated team managed by Surrey and Borders- People who use our services- People who care for people who use our services- People in organisations that represent user or Trust services and their carers- Employees of partner organisations
2. All nominees for awards must be employees of Surrey and Borders Partnership NHS Foundation Trust at 31 March 2009 or employees of social services who are working as part of an integrated team managed by Surrey and Borders – except for Volunteer of the Year – which is open to anyone working for the Trust in an unpaid capacity during the year and Partner of the Year – whereby individuals need to be employed by the contractor at 31 March 2009.
3. There is no limit to the number of nominations that can be made by any individual team or organisation.
4. Individuals, teams or organisations may not nominate themselves or members of their family.
5. Nominations must be made on the STARS Awards nomination form and completed in full. EACH NOMINATION MUST BE SUBMITTED ON A SEPARATE FORM.
6. Nominations received after the closing date will not be considered.
7. The judging panel will include the Chair or a Non-Executive Director, Chief Executive, representative from Diversity and Inclusion (or nominated deputy), person who uses our services and carer representative, Director of Workforce and Development (or nominate deputy), and a staff side representative.
8. The decision of the judging panel will be final. No correspondence will be entered into regarding their decision.
9. Short listed individuals will receive two tickets for the awards ceremony. Short listed teams will receive a maxim of 3-5 tickets. It will be up to teams to decide amongst themselves how the tickets are allocated.
10. Nominators have the right to remain anonymous ie their names will not be disclosed to the nominees. Please make it clear when completing your form if you do not wish your name to be disclosed to your nominee.
06.07.2009
Advice gratefully received
I have three children and a husband.
Zack sleeps in his own room, but does not fall asleep until late (around 10 or 11pm). He has Asperger's syndrome, as many if not all of you know. Melatonin and Phenergan have stopped working. He seems unable to stay in his room, and has several meltdowns each evening at the moment, during which he often goes into his siblings' bedroom to play with them.
Kesia and Tom share a room which is divided by a curtain. Kesia has slight trouble getting to sleep although this is recent, and suffers the very normal "I can't sleep" scenario each night. Tom ordinarily falls asleep very easily, but is now being kept awake by his brother and sister, and then ensues a healthy dose of the naughties.
I can happily boast that until about three weeks or a month ago, the one time that could be garanteed to be reasonably stress-free was bedtime. The bedtime routine has barely changed since Zack was a baby in terms of times. Activities and sleep time of course are different, but we are the embodiment of the bedtime routine.
And now I am at a total loss. Nick and I have lost that precious couple of hours that was the only time we had to regroup. He and I play ping pong with Zack's meltdowns, calming him down one minute, for him only to explode and the other of us be needed to take over. "Manipulation" you cry. You are right certainly at least in part. Now please tell me how we can alter the behaviour...
I need strategies!!! Please be imaginative! Help help help.....
02.07.2009
Waking up...
And slowly... oh so slowly...
I think I may be waking up!
There is a long way to go, and I won't do it alone.
A dear dear friend helped me see a positive way to find that help. Thank you.
I have now had two days of a relationship with my darling boy. It feels good.
More than anything else, I feel hope.
And so there is a smile inside of me...
23.06.2009
Mark... thank you
And then earlier this year I met a real, solid, guardian angel. He does not have wings, and he will be the first to say that he does not really fit the “angelic” description. But he has been my guardian angel in the last few months more than I could ever have hoped or prayed for. He has laughed with me in good times, held my hand in bad times, and when I fell a great height into a pit of despair and hopelessness, he caught me. He refused to drop me, and made me believe that I could get up again, stand straight and continue to fight the battles that were coming my way.
My guardian angel’s name is Mark Brown.
Many people in the “disabled” community know him, either because he comes into their homes to help them help their children, or because they hear him talk at meetings. The sex education talk tickled many of us mothers whose children do not understand the world in a conventional manner - no space for innuendos and subtleties!!!
The outreach teachers from various special schools know him well, as do the consultants at Epsom hospital. The question on everyone’s lips at the end of his talks is “How can we get referred to you?”.
Mark is an unsung hero. I and my little horde are known as one of “his families”. He cares for us with passion and professionalism, and raises the nursing profession to its highest level.
To my shame, and no doubt that of others, I have been so caught up in the difficulties of life that I have taken his help for granted these past few months. And I fear that the families he helps are all caught up in troubling, emotional and exhausting lives that leave little time to shout across the hilltops, “This nurse is my life raft! He makes it possible to live.”
To a small thank you, Mark only replies, “It’s my job.”.
I want to shout in the street, in the offices of bureaucrats everywhere in the NHS and other public services:
“Look at this man. Look at the dedication he pours into his work every single day. Look at the difference he makes to so many lives today, tomorrow and for the rest of their lives. Watch him with a child who does not know how to communicate. See how he enters their world, at their own pace, taking the time to find the special language that will move them forward.
See the care with which he gently pulls a family together, finding the weak spots others have missed. See the smile on a sister’s face as she realises she too can have some help.
Hear his honesty. Listen to him speak to parents about the future, one they never wanted to face but which must be dealt with. Hear him list the options, tell the optimism within the suddenly restricted world these parents dread.
Call him on the phone. Hear him answer, his voice always calm, always caring. See him move, drive, arrive to help. Watch him knock and enter, calling out a bright, “Hello!”, bringing the sunshine of hope along with him.
See him watch, and listen and wait for the tears to stop. Then see him pick up the telephone, and talk and talk until the men and women behind their desks agree to give the help. See him make a cup of tea, calm an autistic child and return to Mum, waiting for the storm to pass a little.
Follow him one day, to catch a glimpse of what he does. Follow him two days, to see the families he helps. Follow him a week, and learn how much he counts.
Then ask: why did we not know him before? What can we do to help him? How can we recognise the value of this man, his work, his time?”
Mark Brown. In his own words, a nurse. His work is with children and adults with learning disabilities. He is absolutely a professional.
Mark Brown. In the words of many of “his families”, a guardian angel. His work is with our children, disabled but no less human, no less worthwhile. His commitment to our children extends to our families, because “what is a child without his family?”. And so his work is with us, through the tears and the laughter, the bad times and the good. He cares. He is absolutely a Nurse.
18.06.2009
Tom's bloods are normal
An hour and a half talking to Louise, and as she leaves, I think… I think I believe it a little.
I had an awful dream last night. Tom got hurt and disappeared. Kirsty was there, could see him and was waiting for the ambulance, but he was invisible to me. It was awful, and I was crying, but no tears would come, it was just awful dry crying.
So… I don’t want him to be ill, and I don’t want him to die.
Sounds so obvious.
The blood is normal.
And I’m glad.
And having a good cry which feels okay too.
23.05.2009
This Saturday morning
The grand opening of a new cake shop on a beach, both beautiful and overlooked by a gigantic mountain of rubbish, where "beautiful people" live alongside the poorest of the poor.
A beautiful wooden table in the centre of the shop, filled with platters of cakes, chocolates, sweets and drinks (cups of tea).
Bookshelves made of books, so that the entire structure topples, threatens to fall, and settles into a new construciton each time a book is taken from it.
A band playing on a stage... badly, but singing the praises of the cake shop owner.
A maelstrom of conflicting emotion and sensation - taste, sound, colours that are more intense than could be imagined.
Little noises impinge on this melting pot of sensation. A small thud, followed by quiet voices,
"Straighten your leg... good boy!".
Smaller, more commonplace feelings. The touch of cotton on skin, the feel of limbs stretching longer than in the dreamworld of blurred vision in which even self is a hazy idea.
And then.... as consciousness emerges...the realisation that all in the house is quiet. Not asleep, yet quiet. Conscious, yet calm.
A smile unfurls, like a butterfly from its cocoon. With it, a feeling of peace and pure happiness to be stored and remembered in more stormy times.
Saturday morning awakening.
Kesia and Tom are in the sitting room, practising handstands.
Zack is still fast asleep.
From the strange world of dreams, I awake.
Calm.
Happy.
At peace.
18.05.2009
Getting to tonight
This amazing little baby arrives, and inserts itself - himself - so tidily into your life.
So satisfying that you think a sister would be lovely.
Baby number two arrives, and finally you get a cuddle from the first.
Baby number two doesn't appear to like people much, and toddler number 1 is taking the terrible twos to lengths you never really imagined, but still...
Baby number three is a little unexpected in his timing, but holds you and loves you in a way the others didn't, so he is forgiven.
So far, so good.
Hard, but good.
Worries are springing about toddler number 1, but...
Then baby number 3 falls ill - really ill.
And so the proverbial hits the fan.
Toddlers number 1 and 2 are scared - mummy and daddy are sad and baby number 3 has disappeared.
House moves happen unexpectedly, and visits to the hospital impinge on life, with needles for blood.
New house, new language, new school.
More doctors, nurses, needles.
Toddler number 1 increasingly challenges any authority figure and talks of death and dying - often.
Toddler number 2 takes off nappies all the time.
Baby number 3 clings on to life...
From then until today, this rollercoaster I'm on just won't stop. As soon as I begin to think that I can breathe, something else happens.
So today, tonight...
Boy, nearly young man number 1... has gone into his sleeping brother's room to kick him. Then punched me for telling him off.
Daughter, carer number 2... is scared, again. Is crying, again. Missed her psych appointment because of brother number 1, again.
Little boy number 3... is tired. Is sore and confused. Was so lovely this weekend and evening, really acting his age...
Today, tonight...
Man, partner, husband number 1 and only... is close to snapping. Is so desperately sad, and emptied of hope...
And there are no words to make it better today, tonight. None that I can find anyway.
05.05.2009
I know and count my blessings - but they don't take away the strife
My little Tom is fairly healthy, very happy, and is beginning to eat - he ate frankfurter sausage today. It was his decision to try and he was so proud of himself - justly so!
Kesia is a strong little girl who has learnt to be nurturing, caring and compassionate. I am so proud of her.
I have learnt patience in the last nine years. It has made me a better person.
I have a home, no financial troubles (so long as we budget!!), and the fantastic NHS - no joke.
I have the full support of both my parents and parents-in-law! How many girls can say that!!
All this is wonderful, I know it, I tell myself every day. Please believe that I neither forget these things nor do I take them for granted.
That said...
My sweet boy Zack needs so much more help than I can give him. How do we get through until that help comes? Not will we - please give me how!
My little girl takes the weight of the world on her shoulders - and doesn't know how to share it.
Little man Tom... well, ...
Nick and I live with this big empty hole where talk of future hopes and dreams should be. How long before that takes its toll?
I need practical answers - I don't have them. That doesn't mean I am wallowing.
22.04.2009
Kesia about Mummy
1. What is something mom always says to you?
Be good
2. What makes mom happy?
me being good
3. What makes mom sad?
not me doing what mummy says
4. How does your mom make you laugh?
jokes
5. What was your mom like as a child?
very small
6. How old is your mom?
36 or is it 37 now
7. How tall is your mom?
i've no idea
8. What is her favorite thing to do?
play with us
9. What does your mom do when you're not around?
work
10. If your mom becomes famous, what will it be for?
being the best mum ever
11. What is your mom really good at?
looking after us
12. What is your mom not very good at?
nothing
13. What does your mom do for her job?
being a good mum
14. What's your mom's favorite food?
roast dinner
15. What makes you proud of your mom?
everything
16. If your mom were a cartoon character, who would she be?
i don't know
17. What do you and your mom do together?
loads of things
18. How are you and your mom the same?
we're both girls
19. How are you and your mom different?
i've got yellow hair
20. How do you know your mom loves you?
cos i just do
21. Where is your mom's favorite place to go?
wisley gardens
17.04.2009
Misery, love... thoughts on a painful Griday morning
They... whoever they are... Have they known misery? Have they been caught between that unconditional love we feel for our children, and the knowledge that that same child is the cause of you and your love's misery?
If they had... would they really say that misery loves company, that love conquers all?
Misery is a fog that surrounds you, envelops you and suffocates. It does not encompass, for that would imply some companionship in some way. When you see someone you love in that fog, your love can conquer misery. You comfort them and reassure, you take the time and give the time for the fog to lift, and sometimes, if you are very lucky, you have the means to lift the fog.
But other times, when the misery comes from deep within love itself... When your little boy is so caught in his world that the only thing coming from him is rage and anger... When you are suffocated by the same misery that afflicts your love...
There is no reassurance to give. The comfort you want to give is the same you need for yourself... The reassurance you crave is not there to give... There is no time, because life goes on and on... and cannot wait for misery to lift.
So you are left. You and your love, each suffocated in your own fog, each desperate to give and yet receive the love and comfort that will help lift it.
So.. so far, love does indeed conquer all - but not alone. Love, perserverance, mostly a great deal of stubbornness and patience. But misery is so close to despair...
We tread a fine line...
Did "they" ever think of that? Misery does not love company, misery loves solitude and thrives on silence. Love can conquer much, but is fragile and needs nurturing. Above all, love needs company, and requires sound, communication, touch.
03.03.2009
Big changes afoot
It's a huge decision, mixed up with a lot of guilt (for giving up on homeschooling), trsut that I'm doing the right thing at the right time, sadness in seeing the lack of progress he's making in the real world, and fight and fury in order to get it done!
Last week I spent many many hours into the night writing up a document siply asking for an assessment! It ended up around 500 pages long, and the panel decides tomorrow.....
It's heartbreaking to well so much on the negative, in anyone, let alone your own child. More and more I'm facing the possiblity that he may not be ablet o live independently, that he is considerably disabled, not perfect, not ok. It all goes against instnict when I see him figure things out in the flash of an eye, and understand concepts that it took me into my twenties to grasp.
The next big decision we took was to try some medication. He's been getting increasingly violent and anxious, and the whole family has been suffering. So we get home with the medicine and a bag load of hope! I read the notice, only to read "anti-psychotic mediaction". Scary! But to be honest, I'm at the end of my tether, so there we go. Luckily we have a fantastic paediatrician. It is making a difference. We haven't found the right dose yet, but Zack is managing his outbursts better.
So in terms of residential school... Am I sending him away, getting rid of him, making it easier...? I don't know, and that's hard. I think he will genuinely be happier with fewer transitions, and boarding school offers the opportunity of making school a fun place, but there is also the hint of relief, of an easier life without him there during the week. That comes with a bucketful of guilt...
31.12.2008
Tied to a computer??
Not so long ago, I might have been reading a book, sleeping, or watching TV. Now I come here.
for me, the internet is more than anything else a meeting place. I know people all around the world whom I consider friends. I just accepted a friend request with no qualms, because that person is a friend of Thomas. Whether or not this new person will click is beside the point. The point is that everything I know of Thomas, and every contact I have had with him is trustworthy. So I consider him a friend.
Through our troubles with Tom and Zack, I have found some very specialised forums, and have met some wonderful people.
So when I find myself attached to this little computer, I feel that I am opening the door to other people - to laugh, and cry sometimes, to find support and advice, and sometimes hopefully to give it.
I am become a computer nerd :D
31.12.2008
Project positive on Neurointegrity
So... I start this at the bottom of the rollercoaster of life... Any tiny little positive is desperately needed....
Zack did great in France last week. We allowed him to go anywhere in the village on his own (high up in the mountains, no shops, few cars...) and he loved the freedom. He was really adorable.
Kesi......... this is harder. She's really struggling right now, and taking control with food and drink which is really worrying. BUT she ate and drank well today!!
Tom is on continuous feeds right now because of vomiting etc... but he's now happy to wear his backpack and carry on playing. He even plugs his extension into his G button on his own now.
31.12.2008
A thought about choices and identity...
In school, I was always in the music department, and this defined me. More than i wanted then, I have to say. I loved and still do love music, but it isn't the only thing that I am. Anyway, we had a lot of fun, and achieved some really good things, I think. I went on to do a music degree. I don't know if any of the others did that (I've only just made initial contact with some). So for a number of years, music was everything I did.
I was lucky to be in a university which was and is reknowned for engineering, which allowed me to get to know a very different beast! The logical, rational type, who completely counter balanced the emotional people who typified the music department. I've found myself between these two groups forever, apart from high school, when a wonderful group of friends were led by Alex in the school jazz band.
He roped me in, a willing victim of his enthusiasm, as a double bass player. Those of you who know me will laugh if you didn't know this before. I'm under 5 feet tall, and had to use a step to reach the strings! I was not an improviser and this music was completely alien to me. I loved being a part of it, but at the time couldn't "let go" enough to really progress as much as I would have liked.
The reason I mention the famous jazz band is that most of the people in it had that wonderful "mathsy" quality that I couldn't find in the classical music world that I inhabited.
After school I became a music teacher. I've always had the teaching bug, and enjoyed it, although the work conditions were always rubbish! And then motherhood!
In the last few years, music has become lost. I sit at the piano, desperate to play something, to release emotions that are eating me up, and I can't. I don't know what notes to play, what sounds to make, what to do. Classical music is too intense, and improvisation (which I am getting better at), doesn't lead anywhere enough. That's undoubtedly because improvising doesn't come naturally, but the result is that I'm stuck.
A friend suggested that having children who are "broken" in some sense has left me feeling that my creativity is broken, or not good enough, or something. She may be right, but I'd like to know how I fix it.
When I was little, I used to throw all my sadness and anger into the piano. A Chopin prelude was my favourite outlet, and the family quickly recognised that I was upset when they heard it played a certain way.
I want to find my music again. I'm so happy to see that so many of those friends are real, day to day musicians. I suppose I feel a bit jealous. Probably because life is too hard right now, and I long for an escape! But I would love to be able to sit at the piano, and play the sadness away.
So I was Miss. Music. And then Mum, I suppose (teacher, nurse). And in all that, I rebel against those labels because they seemed to pigeon-hole me and close other doors.
This is an insight into the mush that is my mind right now. I am who I am, the same as any of us. Who that is, eludes me sometimes, and other times is clear as day. Musicians, any help will be happily appreciated. If you know what I could play, please let me know!!
PS I have made a conscious decision not to re-read!! Therapy and all that - stuff has to come out somewhere!
30.12.2008
A life of my own
So I hoped that a note, (or several when things feel rough) would be the place to do that.
Right now, and for the past few years, life revolves around my children. That seems tto upset, even offend some people around me. Contrary to their beliefs, I do not put them above all else, forgetting to look after myself, or have that elusive thing "a life of my own" . By the way, I hate that phrase. It devalues everything I do, as if I was tied to the things I choose to do.
I have three children, and two of them have “special needs”. Another difficult phrase...
My eldest has asperger's syndrome, a form of autism. He is very bright, and loving, and angry and sad. He struggles so much to understand the world, and though he speaks very well, he communicates very badly. I've homeschooled him for three years now because he was being bullied at school, and not coping with the environment at all. He was terribly fragile mentally, and is only now, slightly, getting better. I don't know how long I will homeschool. But right now, it's the right thing to do, and I enjoy it.
Kesia comes next, and is a remarkable little girl. She is very caring, and astute. She tries to make everyone feel better, and gets very upset when that isn't possible. Recently, everything has crashed for her, and she is very unhappy. We're trying to help her, but it is going to be slow, and difficult.
The little one, Tom, has Noonan's syndrome. It's a complicated syndrome, but for him, it means cardiac problems, tube feeding, leukaemia (which is stable, all fingers crossed) and a myriad of little additional things. The feeding is the one constant which takes all my energy, physical and mental.
If I haven't mentioned my husband, it's because he isn't a problem, and doesn't drain my energy. He is a wonderful support to me. So many people criticise him for working........... for not “doing enough”............... We work. We've been together for 17 years now – we must be doing something right!
So that's me. I do not have a job, an office, an outside “life of my own”. I am a mum, and my children make that a full time occupation. It's hard work, and not always fun, to say the least. But I think it's important, and I think I do it well. It is my life. The fact that I share it does not make it someone else's. And all in all, I probable wouldn't trade it!!