The unquiet within

Posted in Uncategorized with tags , , , , , , , , , , , , , , , , , , , , on May 8, 2014 by brassmonkeysblog

Dear Prime Minister,

Every morning Margi and I make our usual hurried journey to school in the car. We sit in the queuing traffic, singing along to the songs on the radio, sighing at the lambs as they bathed in the sun and watching the straying hens nearby as they try to follow the dirt track that will safely lead them back to shelter and food. Without fail Margi reminds me seconds before the turn,

“Don’t forget the shortcut mum.”.

Except for this morning. Margi daydreaming, my mind so mixed up and absorbed on other things the car continued straight ahead.

“You forgot to remind me.” I accused Margi.

Her lack of concern over this matter amused me as Margi, prone to neurotic tendencies and her dislike of changing directions, did not display her usual vexation whenever I veer off our normal pathway. The shortcut, strictly speaking is not a shortcut. It is an alternative route that will eventually lead us to our next familiar road. It is of the same length of the regular road  but cuts out speed bumps, halting buses, and the annoying mini roundabout where cars accumulate waiting to see who goes first. It’s not necessarily quicker at times, as others periodically will try this alternative route, creating an increase in traffic flow all waiting their turn at the crossroads, and as we wait, we  frustratingly observe the cars on the conventional route driving past without so much as a by your leave.Today was different, as we stayed on the same road the traffic flowed freely, buses moving, and without delay we turned at the mini roundabout and hastily drove towards the school. The radio played a new song to which we sang to, and we arrived at Margi’s school on time without any untoward stress.

But it is not really about Margi’s school run that I write to you. Instead it is a different matter that takes up most of my thinking these days, the distraction that causes me to miss the usual turns and have to follow the conventional route. Bea is now 16. In the eyes of society she is turning into a young lady and yet there are many years that separate her mind and growth from the predictable pattern of the nature of our age. She is so excited as she comes to the end of her school year and moves on into the 6th form. It’s strange to think of her going into 6th form, reminding me of how I was when I started 6th form, so confident in life, looking forward to the new changes, aware of a new maturity growing inside me but mixed with trepidation of what has yet to be fulfilled, where the future will lead, guided by the unquiet within. But now Bea is at that turning point, that significant period in her life. I try so hard not to cry in front of Bea or Margi. To witness your parent crying infuses consternation within your mind as you acknowledge their mortality and weaknesses, and the fear, as a child, that you caused this. And yet, as I knelt down in front of her, helping her fasten her shoes she began excitedly to talk about the prom. Margi joined in, talking about the dress and where it was to be, and as I looked at her poor, unpredictable feet prone to stumbles and falls,  I was aware of the noise within suddenly coming out of me, the audible sorrow that had been restrained for so long. It was no longer contained and they had heard the cry. As I tried to gain control Bea started to cry fearful of what she had done. I hugged her hard, and then Margi. As I  looked at Bea I said,

“You’ve done nothing wrong, I’m crying because this something mummies do when they see their girls grow up. You’re growing up now, you’re a beautiful young lady, and I’m so proud. I’m proud of you both.”.

But inside I continued to cry as fear took over my mind and heart. It had remained inside for so long, I’d been fighting it, pushing it to one side, not wanting to admit its existence. Yet this unrest had surfaced and with that I had to acknowledge my own internal commotion. The affirmation of having little insight into Bea’s future. For 16 years I have had to battle with agencies, pursue red tape, speak out on her behalf to seek the journey that is right for her. The direction that so few see as they stick to the mainstream. It is a natural parenting concern to consider what is the most appropriate and worthwhile direction for your child and to help them follow it themselves. As children grow, they gain independence and become more aware of their own destiny, recognising that they can have control over how to achieve their goals. And yet for Bea it is different. In Bea’s world she lives each day as it arises, enjoys every moment, absorbs all that surrounds her. Her love for all that is living is unassailable, she judges no one and has a trusting acceptance for everyone. And that scares me. For society can view young adults like Bea harshly, as insignificant, burdensome, of no relevance to their lives. It scares me that the older she becomes the more dependant we have to become on help from others. This particular transition in her life is full of wonder and new awakenings merged with reliance from a society that struggles to support reliable care and provision for the vulnerable. I am frightened that I will not always be there to fight her battles, I will not always be there to protect her from human and societal failings, and even in my presence things are taken from us, we get passed over, we are moved on and we become difficult.

So what becomes of Bea now she’s 6th form. Her prom night fills me with dread – everything that can cause Bea distress will be there – loud music, enclosed space, crowds of teenagers rushing past knocking her with their excitement and exuberance over the celebration of the end of 11 years at school. They will watch and stare at Bea and her friends as they recognise the difference between them, and even with all the inclusive policies that surround these events they will still remain ill-prepared in supporting a small, vulnerable young lady like Bea – who falls, becomes easily distressed, panics and tires easily. 16 year olds will behave like 16 year olds, so how should Bea behave? How should we behave?

We continue our life’s journey together, looking for the alternative routes but sometimes having to travel down the same pathway as everyone else. Sometimes it is much slower, more obstacles come our way, but there will be occasions when there will be surprisingly fewer restrictions in our way and just like everyone else we will arrive at our destination. Meanwhile, I continue to wrestle with emotions that know no boundaries and at times have little control as I try to let her go.

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Dance, then, wherever you may be

Posted in Uncategorized on June 1, 2012 by brassmonkeysblog

Dance, then, wherever you may be.

Dance, then, wherever you may be

Posted in Uncategorized with tags , , , , , , , , , , on June 1, 2012 by brassmonkeysblog

Dear Prime Minister,

We will soon be approaching a long weekend of celebrations and parties in honour of Queen Elizabeth’s Diamond Jubilee. They already have the union jack bunting and flags out down our street, visible to all who passes by. Not as many as when England are playing in some prestigious football match I note. In these times of fewer opportunities and shortened chances it is good to have these opportunities to celebrate and remind ourselves that we do have a Queen.

There was a special party at Brownies this week, Bea and Margi were quite excited. The Rainbows, Brownies and Guides congregated together and reaffirmed their promises and commemorated the presence of our Queen over the last 60 years.

Bea loves Brownies. She has been fortunate enough to attend the Brownie community for almost 3 years. At 14 I suspect she could be the eldest Brownie in the country, the world may be. But we don’t mind that, I am delighted that she can attend somewhere mainstream, see her accepted as a member of a group and be valued for being the person she is.  The children accept her, play with her and miss her when she is not well enough to attend. The leaders embrace her and try to include her in all activities. She is happy there. However, it has not always been like that, and I know that this is an exception rather than a rule. Society can play such cruel tricks at times.

Margi excels at dance. She moves like a woodland sprite shimmering within the crisp satin sheen of the moon. Her movements flow mesmerising your heart and soul. I recall one New Years Day we visited my brother’s house for a party. She must have been four. We had played out our party games, we chatted to people we had only just met and Bea spent her time sat watching the washing machine while eating her chilli and rice entranced by the whizzing movements as it encircled the clothes with its frothy cleanliness.Margi had a special request, she wanted to show the guests a dance. Excited by the prospect of my daughter showing off her fabulous talents to a willing audience I eagerly searched through my brothers CD collection, an arduous task I might add. Eventually I found the perfect music “The Flower Duet”. As we put the music on the guests continued talking amongst themselves, some would glance around waiting to congratulate a four year olds little dance. They didn’t know, but Bea and I did. We sat closely together on the sofa in anticipation of mesmerising act, we waited to be captivated. The music started and Margi slowly and confidently made her first move. Watching her hand enticingly lift in front of her face her eyes invitingly followed its lure, attracting our attention. She gracefully pirouetted towards us, encircling our hearts with her movements. Someone gave a slight gasp as they felt the touch of her magic, others remained quietly spellbound as she continued her melodic flow; swaying and turning, leaping and bending, her body had succumbed to the rhythms. Nobody moved, the room remained still as Margi allowed her body to flow at one within the harmonies of the song. The music finally came to an end. And then there was silence, seconds later returning from their trance, the audience clapped. She had worked her magic.

Bea, on the other hand would love to dance. In fact she was honoured with the “The Dawn French style of dancing award” at a mock Oscar party. Like an uncoordinated changeling she  clumsily moves, knocking things over as she tries to regain her balance. She practices and practices each move until she can master it in her own style. A joy to behold knowing the pleasure she too receives from this.

Wishing to embrace Bea’s desire to dance I enrolled her in the Junior Disco Dancing class. Margi had attended ballet classes with Miss Rebecca for several years. Miss Rebecca was always kind to Bea and she would awkwardly return the hug that Bea would bestow upon her every week when we took Margi to her ballet classes. Aware of some of the difficulties and practicalities that Bea could pose I discussed with Miss Rebecca the feasibility of her joining in the Junior Disco Dancing class. Miss Rebecca would love to have her. Bea was excited as she would finally be able to join a dancing class. Margi was excited as she was joining the same class and so were some of her school friends, and I was thrilled because Miss Rebecca puts on an annual show to showcase all her classes and I would have the opportunity to sit and watch both my daughters perform to the best of their abilities. I couldn’t wait. She started in September, the show was in June. Every week Bea would happily go to the classes, bounce up and down with the other children and try new tricks. Undaunted by Bea’s sudden onset of epilepsy I continued to let her go to the classes.   Not one to allow these things to thwart us either my mother and I would sit in with the class to ensure that Bea remained safe and Miss Rebecca could concentrate on teaching the children. These periods of observations gave an insight of how things really were within the class. I started to pick up on small subtle incidents that though did not cause me concern began to make me feel uncomfortable. Bea’s behaviour was exceptional, compared to many of the other children. She would sit attentively when told, listen and watch carefully what she had to learn and join in enthusiastically. Yet Miss Rebecca would often coldly correct her if she did not master the instructed move straight away and giving her little praise. Children would sit in their little huddles and Bea would be noticeable by her solitude. Undeterred by all of this Bea was happy to go to the classes and I thought that perhaps I was being over protective. Bea’s epilepsy gained control and I was happy to leave her at the classes without any further supervision.

The dance show was soon approaching. We were all given forms about the performances and I eagerly signed the permission slip for Bea and Margi to be in the show. Margi had left the Junior Disco Dance classes by this time as she was beginning to find them uninteresting and did not challenge her abilities to dance. But she would be in the ballet dance. I knew it would be a logistical nightmare for me to take them to all the rehearsals but realised that it would be worth it. Bea had over the last few years attended the shows as a member of the audience, she watched each dance with pleasure and would watch them time and time again on the produced DVD, endlessly practicing the steps of each performance. So every week I took Margi to her ballet classes and Bea to her Junior Disco Dancing class. As the show date was beginning to approach I noticed that Margi was having to attend additional rehearsals for the ballet. Bea continued to attend her class but there was no change. Margi received her letter about the cost of the costume and that she would be required to attend the full rehearsal two weeks before the show. Bea received nothing. I spoke to her about the show and asked if she would like to be in it. She said she would.  I had thought that perhaps she had been overlooked and when collecting Bea from her class mentioned this to Miss Rebecca. She looked at me somewhat remiss and said that it would be sorted out. While I was there I noticed that the rest of the children were comparing costumes, Bea had nothing.

A few days later, as I was about to bathe Bea and Margi, the phone rang. It was Miss Rebecca.

“Hello” I said.

“Hello” she said. “I’m ringing up about the show. I don’t think Bea can be in it”

I was somewhat taken aback.

“Why not?” I asked.

“I hadn’t realised that you wanted her in the show and I have no costume for her. You have never discussed this with me” was her terse reply.

“You should have been aware that she was going to be in the show as I have brought her to all the classes in preparation and have signed the permission slip for her to be in the show. That in itself would indicate that I wanted her to be in the show” was my response.

“I never received the permission slip”

“You did because I put the slip in your hand when I came to collect Bea, I had signed it for both Margi and Bea to be in the show, both their names are on the slip and there is no question about Margi not being in the show” I said.

Silence.

“Oh, well I don’t think she can be in it” she eventually came back with. “This should have been discussed a long time ago and not a couple of weeks before the show.”

“Yes, perhaps your right. I may be have been neglectful in discussing this matter with you and so I must take some responsibility for that, however, each time I have picked Bea up from your classes and asked how she was getting on you could also have used those opportunities to discuss any reservations you may have had about  her being in the show.”

Silence.

“Why don’t you really want her to be in the show?” I asked.

“I don’t think she can do it.” She replied. “You know, Bea is not going to get better.”

Silence. I tried to breathe and remain calm.

“Thank you for telling me that Miss Rebecca. I am aware that Bea is never going to get better, after all she has been my daughter for the last 12 years.” was my somewhat clipped response.

“Please don’t patronise me.” she said, her voice full of disdain. “She should have been in the baby class, she would have been better with them.”

I could visualise Bea clumsily dancing the teddy bears picnic with the toddlers, looking ridiculously tall compared to their tiny frames. I already felt the condescending and sometimes pitiful looks from the audience as they watched her half fearing that she would stand on their precious babes. My heart sunk.

“I don’t think that the baby class would be appropriate for a 12 year old special needs girl and I would hope you’d realise that after all you have a special needs policy.”

“I am aware of this, and I have other children with special needs.” was her defensive response.

“Yes, and they are of infant age and are in the baby class.”

Silence.

“Why don’t you really want Bea to be in the show?” I asked.

“She’s not been to the all the rehearsals”

“She hasn’t been to the rehearsals because you hadn’t informed us of when they would be. Why don’t you really want Bea to be in the show?” I asked again, realising the response.

Silence.

“Why Miss Rebecca?”

“Because she will put the other children off.”

“I don’t think that is right or fair, after all she is pretty well-behaved. So why?” I continued.

“I don’t think it’ll look right. She’s not very coordinated and doesn’t fit in”

She’d said it, she’d finally said what I had come to expect from others. The knife inside me tormentingly made another turn, jerkily tugging at every nerve within me  searing through my heart and my mind almost causing me to hit the ground. Determined not to cry we continued the heated conversation. Determined not to fall I battled and negotiated until we finally reached an agreement. I had to stay with her throughout the show in the dressing rooms until she was to go on, she was not allowed to leave the area until after the show, there was to be no exceptions as the other children had to stay there to. Conversation over, I placed the phone down. Bea was going to be in the show, so why did I feel as though I had won the battle but lost the war. Deflation. Exhaustion.

“Mum?” I heard a voice from behind. I turned, it was Margi.

“Are you crying? What’s happened?”

I sat down and tried to regain composure and order but a short sob came out. “It’s ok Margi, don’t you worry. I’ve just had a bit of an argument with Miss Rebecca but it’s been sorted.”

“Was it about the show?”

“Yes it was. Do you still want to be in the show Margi?” I enquired, after all she had always moaned about going to the rehearsals.

“Yes mum I do. Am I going to be in it?” she asked anxiously

“Yes, don’t worry.”

The following morning after copious amounts of wine and a restless night I awoke with a feeling of dread. My eyes still swollen from the evening I had spent crying I quietly helped Bea with her breakfast.

“Bea, do you want to be in the show or would you rather watch the show?”

She looked at me, I knew she could read my expression, and I knew she sensed the anger I felt towards to Miss Rebecca, no matter how I tried to hide it. She can be quite astute, it almost frightens me at times.

“Watch the show” she said. I reworded the question to ensure that she had given me the answer she wanted and not necessarily the one I wanted. The answer remained the same.

“Ok, we’ll watch it together then” and handed her breakfast.

You see, I could no longer bear the thought of her being in the show. The simple fact I had to argue her case and though a compromise had been reached it was under duress. So I later rang Miss Rebecca and told her of our decision and I suspect she was somewhat relieved. But a line had been crossed and the next couple of weeks before the show were so difficult. I remained polite and smiled at the other mothers as if butter wouldn’t melt in my mouth. But the butter tasted bitter and I wanted to spit it out.

We sat through the show, my mother, Bea and I. It was so difficult. Margi danced beautifully with the other little ballerinas. Gliding along the stage, every move to perfection. The creme de la creme, well almost, after all they are children with many different talents. But it didn’t matter as each child demonstrated their willingness to move, the pleasure exuding from each carefully thought out pose. And when one child made an accidental comical move the audience smiled and laughed gently to show the joy they felt when appreciating that human error was still prevalent in the most perfect of shows. Then my heart sank as I realised that the Junior Disco Dance class was to perform next. I had to watch the performance though my mind was telling me not to look. But I had to see, I had to see the dance so I could try to understand Miss Rebecca’s reluctance to include Bea with these performers. As I watched it became apparent to me what I had suspected. She did not want Bea in the show because …… because of what? The children bounced up and down awkwardly to the music with smiley happy faces. They then each took their turns in performing a little unstructured piece, hands flaying in the air, legs kicking randomly to the front for them to return to the bouncing. I had seen it all before as I’d sat through those classes ensuring that Bea was safe when she first started with her epilepsy. Yet her fits would have not looked out of place within this catastrophe of jerky gesticulations. Maybe I was harsh, but in the darkness I silently wiped the tears from my face hoping that Bea could not see. She would not have looked out of place, she would have been happy to join in but I realised that within this group she would never be accepted. Miss Rebecca wanted to showcase her dancing school’s great potential. She wanted people to see that she was open to teach to all abilities as demonstrated in the toddlers teddy bear picnic dance where a small child with learning difficulties smiled and looked adorable dressed as a teddy. She had not anticipated that a child with severe learning disabilities would want to dance, or at least express herself through movement and music.I felt sorry and sad for her. Her own coldness and desire to have the perfect dancing school had ill prepared her for further opportunities to enlighten her creative abilities.

Margi left Miss Rebecca’s school of dance and moved to another. Bea made her own decision not to return to the Junior Disco Dancing class. Sadly this is not an isolated case of societies all willing, all embracing attitude to offer Bea the promises of acceptance. The difficulty to follow through these assurances demonstrate how unwilling we all can be to strive towards the true meaning of inclusion. Meanwhile, Bea, Margi and I continue to dance in our own inspirational way and  hope that others will follow our music and dance with us.

Yours Faithfully

Daisy Vents

 

 

Suffer the Little Children

Posted in Uncategorized with tags , , , , , , on January 26, 2012 by brassmonkeysblog

Dear Prime Minister,

I am aware that it has been some time. My time up until recently has rarely been my own, divided between the  my children and sleep, but now I have time and you leave me somewhat exasperated. I will share with you why.

It was almost 16 years ago I met a charming man. Our relationship was exciting, consuming and obsessive. We married and along came Bea and Margi. Soon the passion that we once shared became my agony, slowly diminishing on his departure. I was left to bring up Bea and Margi, who was due to be born, alone. If he’d let me expose a my heart it would have surely been broken. But my heart, along with my dignity and some money remained hidden away. He’d lived off me like a parasite and when he knew that this was soon to end he moved on to exploit another. A regular pattern that he continues to maintain. As a result I was left heavily pregnant, depleted emotionally, physically and financially. Soon to give birth. I worked until they admitted me into hospital to induce my labour, the preciousness of two lives in jeopardy. Margi was born and we were safe. Her father did not come to see her until she was five days old, stayed briefly and took with him a camera full of photos of the joyful occasion. Fortunately there is a happy ending to this, for now. I rebuilt my strength,  nurturing a determined and contented family. Just the three of us, Bea, Margi and me.

My ex-husband disappeared, left me to deal with his creditors who soon learnt to leave me alone. He went abroad, his last conversation included how pointless  it would be me contacting the CSA as he would no longer be in the country. He contributed very little to the children emotionally and nothing financially. And yet the few times he saw them he would tell them how he loved them. He is back in the UK and has been for several years. He has asked to see the children, I have said no. Not until he starts to demonstrate his commitment to them — he must send them letters, then he can speak to them and then he can see them. He would need to rebuild his relationship with them, this would take time but in order to emotionally protect the children it seemed the most reasonable way. That was 6 months ago, I have not heard from him since.

Margi will ask “Does my dad love me?”. I cannot lie. “If a man cannot love himself he cannot love another” I tell her.

Margi told her fathers brother  a few weeks ago “I do not have a dad”. Neither of us corrected her.

And so I turn to you and your paternalistic government. You see I am an independent woman, a single parent, a divorcee. All the things that I perceive that you deplore. I failed to mention that I also worked for the NHS. But like my husband you start to take from me. You want more deploying your parasitical tendencies. The pressure of working for the NHS, my strong code of ethics,  and caring for two children, one with a disability with little help resulted with me deciding to stop work for a while. Take some time off and improve the quality of our lives. So I left my job and am in a fortunate enough position to only claim disability benefits for my daughter and her care and not to rely on the state for anything else. At the moment. I was also encouraged to apply for child maintenance through the CSA. Something I had previously considered but as I was financially secure and wasn’t sure of the repercussions had shied away from it. This time I decided to go ahead, assisted by the fact that the CSA made the contact. I gave them all the information that I had, his National Insurance number and a run of mobile numbers. That was it. That was three months ago. I have not heard from them since.

You tell me that you are going to cap the benefits of people out of work, deprive their children of finances that they may need. But what additional help do you offer? How do you support the “work shy” parents to engage into work. But no, you deprive them and say it is fair. That it’s the fault of the labour government that it has come to this. You are in control and you will control our finances. What does this say to the children?

You tell me that if I work and if I earn over a certain amount you will stop my children’s child benefits, regardless of the household. As a single parent it would only be mine, and yet it seems fair that a married couple who could both earn just under the threshold would continue to have their children’s benefit granted to them, like a good father would bestow his favoured son with gifts. Rewarding them for their marriage, willingly making me feel like I have failed in some way. What does this say to the children?

You tell me that as I have a disabled child who receives middle rate Disability Living Allowance though qualifies for additional help with getting around that she will have her benefit reduced. The financial costs of bringing up a disabled child are far greater than a child without these needs. Bea is 14 and requires a sitter to be with her at all times if I am not around. She will never go without, it will be the family that does. What does this say to the children?

And then you tell me that in order to claim some maintenance from an ex-husband that remains elusive and refuses to offer any financial support towards his children that I must pay.  An ex-husband that left his wife and children owing money to the family, the friends, the neighbours, the bailiff. When the children last saw him he was driving a BMW. He has fun, he laughs, he drinks, he smokes he has women to pay for his every need and if they don’t he will take their money regardless. And you tell me that I must pay to request that my children’s father contribute to their upkeep. I must pay with money that would buy my children shoes for school, food to eat, clothes to keep them warm. What does this say to the children? What does this say to MY children?

Inside the picture

Posted in Uncategorized on August 27, 2010 by brassmonkeysblog

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A simple letter

Posted in Uncategorized on August 11, 2010 by brassmonkeysblog

Dear Prime Minister,

I have had many intentions to write to you for some time but remained uncertain in what form was the most appropriate. I found a draft of a letter I had written some time ago, the anger and frustration bellowed out at me as I read it again, followed by undisclosed annoyance as I discarded it in the bin. I had considered posting it when I first wrote it. It told you of my fruitless plight to improve our situation and seek for acceptance. The letter was disposed of as I suspected very little would come of it.

A simple letter from one woman, a letter construed as a response to events around me that I had no control of. A simple letter expressing a desire for change. A simple letter with high expectations. Yet it would not be enough to show you the life I lead. The decisions you make influence my decisions.

It was not posted as I did not wish to receive a reply on headed Houses of Parliament note paper, type written by a faceless secretary whose role it was to compose the standard response advising me of whom to contact over this situation. You would never have read the letter. So it was thrown away with the other papers for recycling. To be taken somewhere to be reduced into pulp and once again transformed into an empty page. Recycled into headed Houses of Parliament note paper.

The wish to communicate with you remained and so I needed to find another approach. One that not only showed you my thoughts of life, my desires, aspirations and dreams but one that I could share with others. A taste of my life, a glimpse of how society is and remains to be affects the pathways that myself and my family decide to take. I want for you to see the joys that happen within our home, the choices we take and what we desire. I need to show you the occasional despair and exasperation that befalls us as we strive to achieve our goals and yet are battling against the elements that are thrown our way. The words, the actions, the well-meaning nature of people that we encounter.  I hope that you will start to understand the life that we lead and as policies are changed and decisions are being made you will start to see the pattern of our life as it starts to unfold.

I will write to you again soon,

Yours faithfully,

Daisy Vents

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