I wrote this many years ago. It's heavily influenced by a book called The Good Fairies of New York by my most favourite author Martin Millar. I was lucky enough to meet him recently at one of his readings in London and yes he does look like Iggy Pop ;-)
The Healing Good Fairy Poem
When a good fairies heart is broken
She'll fold her wings and bow her head
No bitter words or anger spoken
Her gentle heart she'll mend instead
She'll tumble down and spin a while
And take to drink till darkness fades
But soon she'll find the heart to smile
And dance in light and summer shades
She'll steal the shadows with her smile
And with flaming iris burn
Deep into your soul once more
Keeping darkness from return
Thursday 18 October 2012
Wednesday 3 October 2012
Welcome to Munich - Aftershocks
The world around me was determined to stay the same. Unchanged and busy getting on with the detail of daily routine. I slotted back in but felt like an imposter walking around in my old shoes.
Two years later little man was diagnosed with High Functioning Autism and I was handed a red, see through, plastic folder full of information and in it was The Holland Poem. I didn't notice it, I didn't get the chance to read it. Before I knew it I was quitting my job to help support little man in the classroom and taking my local education authority to tribunal for failing to meet his special educational needs and to get him into specialist provision. Bye bye old life of mine and hello to endless nights of no sleep because little man just didn't see the point. I fought on bolstered by fifty thousand cigarettes and a recycling plant full of red wine and I won.
Since then I've met and tried to support other parents with the same issues. They'd all been given The Holland Poem. "But I've gone to Beirut" said one Mum and I knew how she felt. Whilst I was in Munich I was sad that I wasn't in Kefalonia and I wished I was. In Munich I was terrified for my little man and just wanted him to be healthy and well. I found untapped reserves of strength and resourcefulness. I was deeply touched by strangers who reached out to help with immense love and caring.
The Holland Poem is all about finding acceptance. Health and education professionals are big on acceptance. There's a feeling that comes across if you challenge or question what they say, that you're only doing it because you haven't reached acceptance yet, that you're fighting diagnosis rather than the system and you just know that they're about to shove that poem into your hands again.
So what do you accept? I accept the looks from other parents who don't understand because for every one of them there's a parent who does and who will be alongside you. I accept my sons difference, his quirkiness, his perspective, his jaw dropping honesty, his determination and his destruction. But I don't accept that this place, this Holland is a place where I have to battle for an education for him and for therapies that will help him develop and cope. This place where there are unjust laws that make difficult lives just that little bit worse. So I'll put on my marching boots and I'll shout at the top of my voice in the hope that from over here in my Holland the rest of the world so determined not to change will hear and come and visit and maybe even stay a while now that truly would be acceptance
Two years later little man was diagnosed with High Functioning Autism and I was handed a red, see through, plastic folder full of information and in it was The Holland Poem. I didn't notice it, I didn't get the chance to read it. Before I knew it I was quitting my job to help support little man in the classroom and taking my local education authority to tribunal for failing to meet his special educational needs and to get him into specialist provision. Bye bye old life of mine and hello to endless nights of no sleep because little man just didn't see the point. I fought on bolstered by fifty thousand cigarettes and a recycling plant full of red wine and I won.
Since then I've met and tried to support other parents with the same issues. They'd all been given The Holland Poem. "But I've gone to Beirut" said one Mum and I knew how she felt. Whilst I was in Munich I was sad that I wasn't in Kefalonia and I wished I was. In Munich I was terrified for my little man and just wanted him to be healthy and well. I found untapped reserves of strength and resourcefulness. I was deeply touched by strangers who reached out to help with immense love and caring.
The Holland Poem is all about finding acceptance. Health and education professionals are big on acceptance. There's a feeling that comes across if you challenge or question what they say, that you're only doing it because you haven't reached acceptance yet, that you're fighting diagnosis rather than the system and you just know that they're about to shove that poem into your hands again.
So what do you accept? I accept the looks from other parents who don't understand because for every one of them there's a parent who does and who will be alongside you. I accept my sons difference, his quirkiness, his perspective, his jaw dropping honesty, his determination and his destruction. But I don't accept that this place, this Holland is a place where I have to battle for an education for him and for therapies that will help him develop and cope. This place where there are unjust laws that make difficult lives just that little bit worse. So I'll put on my marching boots and I'll shout at the top of my voice in the hope that from over here in my Holland the rest of the world so determined not to change will hear and come and visit and maybe even stay a while now that truly would be acceptance
Monday 10 September 2012
Welcome to Munich - Part 6
We were too much of a risk for the airlines so we had to take a less mainstream means of travel home, paid for by Dad's credit card. Standing beside the brown heavy metal carriages of the sleeper train I felt very small and terrified at the prospect of the journey ahead. I had been given diazepam just in case of other seizure's, it was just us now. But then up reached a little hand hugely thrilled and excited at the prospect of sleeping on a train. No fear just a beaming smile with arms out stretched asking to be carried on board. Then I saw the adventure in the unfamiliar, the intrigue of the unknown. He loved the way the seats turned into bunk beds and lying tucked up in the top bunk he quickly drifted off with the gentle rocking of the old overnight diesel.
I lay with the smell of Dad's shoes and socks under my nose, I'd never smelt an unwashed Dad before and I realised I saw both my Dad and Step mum slightly differently. Their humour and support in a situation that had been traumatic and uncomfortable for them. Just one more night of sleeping in my clothes I thought and then I contentedly fell into sleep.
We were all more cheerful in the morning and we reflected on the last few days with humorous disbelief. Step mum returned like Mrs Overall after a coffee run and presented three coffee's on a tray with just a spoonful of liquid remaining in each of them, giggling away to herself as she stumbled from side to side with the rocking of the train.
Journeys end at Waterloo station and we stood at the top of the escalators like refugees, plastic bags in hand, blinking in the sunlight and laughing at Dad's unzipped flies. Dishevelled and exhausted we got into Dad's car knowing that we would soon be home but that things had changed. An experience like that gives you a new perspective, a depth and a feeling that things will always be a little bit different as a result.
I lay with the smell of Dad's shoes and socks under my nose, I'd never smelt an unwashed Dad before and I realised I saw both my Dad and Step mum slightly differently. Their humour and support in a situation that had been traumatic and uncomfortable for them. Just one more night of sleeping in my clothes I thought and then I contentedly fell into sleep.
We were all more cheerful in the morning and we reflected on the last few days with humorous disbelief. Step mum returned like Mrs Overall after a coffee run and presented three coffee's on a tray with just a spoonful of liquid remaining in each of them, giggling away to herself as she stumbled from side to side with the rocking of the train.
Journeys end at Waterloo station and we stood at the top of the escalators like refugees, plastic bags in hand, blinking in the sunlight and laughing at Dad's unzipped flies. Dishevelled and exhausted we got into Dad's car knowing that we would soon be home but that things had changed. An experience like that gives you a new perspective, a depth and a feeling that things will always be a little bit different as a result.
Saturday 18 August 2012
Welcome to Munich - Part 5
We spent five days in the hospital in Munich. My father and Step Mother stayed in accommodation provided by the Franciscan Monks, which was basic but immensely friendly and supportive. Step Mum bought me and little man new undies and T-Shirts from C&A's and we then carried our worldly possessions around in their plastic bags all week.
Those five day are blurred into one now and I can't remember exactly what happened and when. I can remember the look on one of the consultants faces when she observed little man making stimming movements with his head, moving it from side to side. They carried out an MRI and an EEG, I was impressed at receiving both in just one week, something unheard of under the NHS. All the staff were wonderful and I remember laughing with the EEG lady when I asked if she was ok being in our holiday photo's and her smiling at the camera whilst she placed electrodes on little mans head. I recall converting stones into pounds and then into kilo's in my best German, for the anaesthesia for the MRI, hoping I'd got it right. (I'm sure they checked!!) Then sitting along side another Mum waiting for the test and passing her tissue's saying "Me also" and smiling.
The tests showed nothing abnormal but we were offered an extra two weeks there for further tests and assessments. One afternoon, after a session in the play room we couldn't get back to the ward as one of the adolescent boys was trashing the room. If I'd known then that Autism was a spectrum and about meltdowns I probably would have said yes to the further two weeks and I'm sure I would have got an earlier diagnosis. But it was a strain, I had a job to hold down, I was worried about my father and my step mother who I knew would not leave my side and I just really wanted to get home, to get back to normal. I wasn't ready to stay there at that point.
The nights were restless with thunderstorms rolling in each evening from the Bavarian mountains. I had to put my fingers in little ones ears in order to block out the sound so he could drift into sleep. I was worn out. The night we left I went to the home of the Franciscan Friars and again met Maximillian. He must have sensed my apprehension about the journey home. Now I'm not a religious person, I believe that love, compassion and kindness are all human traits to be celebrated as such, nothing more, but as he placed his hand on our heads and blessed us I was truly thankful. He gave my little man a knitted soft toy which we now call Maximillian the guardian dolphin and it gave us the little added bit of hope and strength that we needed to continue on our way safely back to our lives.
Those five day are blurred into one now and I can't remember exactly what happened and when. I can remember the look on one of the consultants faces when she observed little man making stimming movements with his head, moving it from side to side. They carried out an MRI and an EEG, I was impressed at receiving both in just one week, something unheard of under the NHS. All the staff were wonderful and I remember laughing with the EEG lady when I asked if she was ok being in our holiday photo's and her smiling at the camera whilst she placed electrodes on little mans head. I recall converting stones into pounds and then into kilo's in my best German, for the anaesthesia for the MRI, hoping I'd got it right. (I'm sure they checked!!) Then sitting along side another Mum waiting for the test and passing her tissue's saying "Me also" and smiling.
The tests showed nothing abnormal but we were offered an extra two weeks there for further tests and assessments. One afternoon, after a session in the play room we couldn't get back to the ward as one of the adolescent boys was trashing the room. If I'd known then that Autism was a spectrum and about meltdowns I probably would have said yes to the further two weeks and I'm sure I would have got an earlier diagnosis. But it was a strain, I had a job to hold down, I was worried about my father and my step mother who I knew would not leave my side and I just really wanted to get home, to get back to normal. I wasn't ready to stay there at that point.
The nights were restless with thunderstorms rolling in each evening from the Bavarian mountains. I had to put my fingers in little ones ears in order to block out the sound so he could drift into sleep. I was worn out. The night we left I went to the home of the Franciscan Friars and again met Maximillian. He must have sensed my apprehension about the journey home. Now I'm not a religious person, I believe that love, compassion and kindness are all human traits to be celebrated as such, nothing more, but as he placed his hand on our heads and blessed us I was truly thankful. He gave my little man a knitted soft toy which we now call Maximillian the guardian dolphin and it gave us the little added bit of hope and strength that we needed to continue on our way safely back to our lives.
Wednesday 18 April 2012
Welcome to Munich - Part 4
I'm taking my time about this I know. Workmen took over my life for a while and it's been hard to think of anything but kitchen tiles and central heating systems since January.
So back to Munich. The ward was small and square. Bright morning sunshine streamed in through a large window at one end of the room and reflected off of gleaming walls and floors. My son lay beside me in a cot still sleeping.
My head was pounding less and I started to think about insurance companies and £100,000 emergency landings. I'd left everything regarding holiday insurance to my father. I hadn't given him any information or checked any documents. Convulsions and maybe seizures would be classed as pre-existing conditions. Were we covered? Panic set in. When my Dad and my Step Mum got back I told them and all three of us panicked. Dad couldn't remember what he'd said although he thought he'd mentioned convulsions and at the time I hadn't checked or helped. I had been dealing with a messy marriage break up and it had been a struggle to arrange the E111. I decided to pluck up courage and call the insurance company and ask very tentatively and very casually who picks up the bill. "Oh no, you're ok, the airlines insurance covers that".
Celebratory clanking of tea cups and huge smiles of relief followed and young man started to wake. He was so little he thought he was now on holiday. We kind of went along with it. He couldn't understand what had just happened and I didn't want to scare him or disappoint him. So started our very special holiday.
Once the panic had gone and little man was up and at it, we found the play room full of wooden toys and most importantly his beloved Thomas the Tank Engine. Every day for over a year I had laid out a brio track and played Thomas, Percy and Gordon. It was becoming a strain to add smiles, thrills and genuine enthusiasm into the story but just one look at the delight in that little face gives you the energy drink you need to complete the marathon.
It was beginning to dawn on us that we had no clothes to change into. We were told that our luggage had reached its destination and would stay at the hotel until the return flight a week later. Nice to know Buzz Light Year would be spending the week on a sun-drenched island and we laughed at the thought of Buzz sunning himself in his speedo's and shades, whilst we all tried to work out where to wash our undies. I resolved the matter that night in a hospital bath. Sitting there, deep in water, scrubbing my socks with soap that smelled like school. I hung them to dry on the metal bars of the hospital bed and unfolded my rickety put you up and moved it close to little ones. I slept in all my clothes as I was surrounded by other patients who were all boys, some in their teens. I had no idea what the next day would bring and just lay watching my son until I drifted off into the early hours.
So back to Munich. The ward was small and square. Bright morning sunshine streamed in through a large window at one end of the room and reflected off of gleaming walls and floors. My son lay beside me in a cot still sleeping.
My head was pounding less and I started to think about insurance companies and £100,000 emergency landings. I'd left everything regarding holiday insurance to my father. I hadn't given him any information or checked any documents. Convulsions and maybe seizures would be classed as pre-existing conditions. Were we covered? Panic set in. When my Dad and my Step Mum got back I told them and all three of us panicked. Dad couldn't remember what he'd said although he thought he'd mentioned convulsions and at the time I hadn't checked or helped. I had been dealing with a messy marriage break up and it had been a struggle to arrange the E111. I decided to pluck up courage and call the insurance company and ask very tentatively and very casually who picks up the bill. "Oh no, you're ok, the airlines insurance covers that".
Celebratory clanking of tea cups and huge smiles of relief followed and young man started to wake. He was so little he thought he was now on holiday. We kind of went along with it. He couldn't understand what had just happened and I didn't want to scare him or disappoint him. So started our very special holiday.
Once the panic had gone and little man was up and at it, we found the play room full of wooden toys and most importantly his beloved Thomas the Tank Engine. Every day for over a year I had laid out a brio track and played Thomas, Percy and Gordon. It was becoming a strain to add smiles, thrills and genuine enthusiasm into the story but just one look at the delight in that little face gives you the energy drink you need to complete the marathon.
It was beginning to dawn on us that we had no clothes to change into. We were told that our luggage had reached its destination and would stay at the hotel until the return flight a week later. Nice to know Buzz Light Year would be spending the week on a sun-drenched island and we laughed at the thought of Buzz sunning himself in his speedo's and shades, whilst we all tried to work out where to wash our undies. I resolved the matter that night in a hospital bath. Sitting there, deep in water, scrubbing my socks with soap that smelled like school. I hung them to dry on the metal bars of the hospital bed and unfolded my rickety put you up and moved it close to little ones. I slept in all my clothes as I was surrounded by other patients who were all boys, some in their teens. I had no idea what the next day would bring and just lay watching my son until I drifted off into the early hours.
Wednesday 4 January 2012
Welcome to Munich - Part Three
On the runway, walking towards the ambulance, I remember looking back at the plane and up into the cockpit. I saw the pilot looking at us and wondered what he must be thinking. I saw my father and my Step Mum get into a cab. Then I followed my son, who was being cradled by a paramedic, into the ambulance.
He was lying, as I had seen him before, on the ambulance bed face covered in an oxygen mask and I knew where to sit and I held his hand. There was a very important looking paramedic already on board who spoke good English but it was a while before he did. I asked him how long it would be before we could get the all clear and carry on with our onward voyage to Cephalonia. The words he spoke next shook me out of my holiday fantasy and into a very new and very real world. He said "Do you know how much it takes to land an aeroplane?" "£100.000..... no air line will fly you now, and we would want to carry out a few tests before you go anywhere, you'll be with us for a few days I'd expect". It felt like I had been hit by a huge demolition ball and it had shattered everything. I was reeling, And that was the moment, the crux of the matter, the turning point, the point of no return. I wept. I could not stop the tears. I was sitting there holding my sons hand worrying about him and keeping a constant watch on his breathing. From past experience I knew that with good medical help and rest he would be ok in a day or so and life would continue as normal, or so it had previously. But now life was not continuing as normal. My holiday had ended and I was on the way to somewhere I didn't know and I didn't know how to get home from.
The journey to the children's hospital took about an hour and I tried to look out of the window and take in as much as I could to get my bearings but it wasn't helping. When the ambulance doors opened a tall, blond, young German man took my son in his arms and carried him towards the hospital entrance. This was strange as at home they would have put him on a stretcher and wheeled him into A&E. I followed and we were taken into a small room where my son was placed on a bed, without any oxygen, and we were both left alone for some time. I was not sure where my father and my Step Mum were and I kept thinking if breathing was a concern why are they so unconcerned? Finally a nurse came in with my Step Mum who seemed confused as to where my father was. So I asked the nurse in my best school German but she kept saying he was at the "Station " we were both totally confused and a little panicky. Why would he go to the station? After a frantic broken German exchange we found out that "station" in German means ward. Our first exasperated giggle of relief and then we followed her up to my father in "the station". Lots of questions and tests and examinations followed and we were eventually taken to a cot on the ward where I placed my son and he continued to sleep.
We sat there for a while in a shocked silence until in walked the most serene person I have ever met; Maximilien, a Franciscan Friar. He took my father and my Step Mother away to show them local accommodation that his church provided. I sat beside my son and then the most powerful and painful migraine took hold. I managed to ask a nurse for some nurofen and then closed my eyes for a while.......
He was lying, as I had seen him before, on the ambulance bed face covered in an oxygen mask and I knew where to sit and I held his hand. There was a very important looking paramedic already on board who spoke good English but it was a while before he did. I asked him how long it would be before we could get the all clear and carry on with our onward voyage to Cephalonia. The words he spoke next shook me out of my holiday fantasy and into a very new and very real world. He said "Do you know how much it takes to land an aeroplane?" "£100.000..... no air line will fly you now, and we would want to carry out a few tests before you go anywhere, you'll be with us for a few days I'd expect". It felt like I had been hit by a huge demolition ball and it had shattered everything. I was reeling, And that was the moment, the crux of the matter, the turning point, the point of no return. I wept. I could not stop the tears. I was sitting there holding my sons hand worrying about him and keeping a constant watch on his breathing. From past experience I knew that with good medical help and rest he would be ok in a day or so and life would continue as normal, or so it had previously. But now life was not continuing as normal. My holiday had ended and I was on the way to somewhere I didn't know and I didn't know how to get home from.
The journey to the children's hospital took about an hour and I tried to look out of the window and take in as much as I could to get my bearings but it wasn't helping. When the ambulance doors opened a tall, blond, young German man took my son in his arms and carried him towards the hospital entrance. This was strange as at home they would have put him on a stretcher and wheeled him into A&E. I followed and we were taken into a small room where my son was placed on a bed, without any oxygen, and we were both left alone for some time. I was not sure where my father and my Step Mum were and I kept thinking if breathing was a concern why are they so unconcerned? Finally a nurse came in with my Step Mum who seemed confused as to where my father was. So I asked the nurse in my best school German but she kept saying he was at the "Station " we were both totally confused and a little panicky. Why would he go to the station? After a frantic broken German exchange we found out that "station" in German means ward. Our first exasperated giggle of relief and then we followed her up to my father in "the station". Lots of questions and tests and examinations followed and we were eventually taken to a cot on the ward where I placed my son and he continued to sleep.
We sat there for a while in a shocked silence until in walked the most serene person I have ever met; Maximilien, a Franciscan Friar. He took my father and my Step Mother away to show them local accommodation that his church provided. I sat beside my son and then the most powerful and painful migraine took hold. I managed to ask a nurse for some nurofen and then closed my eyes for a while.......
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