Mothers’ Day

Will you visit the grave of the

woman who gave you life?

Will you lay flowers

on the tomb,

in memory of the womb,

that pushed and shoved and swore

and bit the hand of the father whose effort put you there?

But there you slept,

an hour old,

against my chest,

for hours.

Beautiful, peaceful, hours

against my chest,

and there you slept

until

until

until your big brother,

with the red shoulder patches on his grey sweatshirt

swanked into the room,

like five year-olds do,

sat on the edge of the bed and crossed his legs.

He said you had a cute nose.

Then ate my tea.

Open letter to David Cameron

I got this fab email from David Cameron today. It was so exciting, I set aside my job application to respond. Here is what he wrote. Maybe you got one, too.

...................................

Dear Laurie,

It comes down to values. We believe if you have put in, you should get out.

  And if you have worked hard during your life, saved, paid your taxes, and done the right thing - you deserve security when you retire.

  

That's why we'll continue to increase the State Pension through the Triple Lock, so it rises every year at either the rate of earnings, prices, or 2.5 per cent - whichever is highest.

No more of the paltry increases - one year as low as 75p - we saw under Labour. Instead, the Basic State Pension has risen by £800 since 2010 with the Conservatives.

  And it's why we're protecting pensioner benefits including the free bus pass, TV licence and winter fuel payment.

Values also lie at the heart of our commitment to give people the freedom to invest and spend their pension however they like.

From six weeks today, no longer will you have to buy an annuity and have your own money doled back out to you. Instead, your money will be yours to do with as you like.

If you want to buy an annuity - fine. If you want to take a lump sum - fine. It's your money - you earned it.

And if you want to pass your pension on to your loved-ones, you'll be able to do so tax-free. No longer will you be hit by a shameful 55% tax - we've cut that to zero.

This is about values - Conservative values that say that everyone who has worked hard and done the right thing should know that they will have dignity and security in retirement.

Laurie - if you share these values, please consider making a contribution to our campaign today.

Yours,

Dear David

I spent years caring for my special needs son. I was a single parent and money was, and still is, very tight. I have been unable to save for my 'golden years'. In fact, for years, it was not possible to work but I have always aimed to improve my lot in life by going to college and then university; all as a mature student because I left school with no qualifications because I was ill at the time of my 'O' levels. Anorexic, in fact, brought on by living with an alcoholic father and abusive mother. 

Not everyone on benefits is a scrounger or dosser, you know, so why do your policies seem to assume so? And what is wrong with means testing Winter fuel allowance and child benefit? Not everybody needs it. 

It's is very unlikely I'll vote for you. The most shocking thing is you, too, have had a disabled son, which makes it really hard to understand why you seem to have an axe to grind against the most vulnerable people in society. I applaud your stand on family values and how you seek to introduce tax breaks for couples but I never chose to be a single parent and the same can be said for many people. In my case, my son would have been forcibly taken away from me and adopted if I had stayed with his (abusive) father. 

So, Mr Cameron, when you have stopped being a shiny faced public school boy with your out of touch values, and your image consultants, you may get my vote. 

With regards

Laurie

One Autistic Person’s View on Being a Parent

Really hate holidays... For those who have school age children or dependents how many families are really able to get out over the holidays? Planning to go out with a ASD child and NT child not easy... Especially when they clash as she wines (sic) him up...

   Spotting the above post on the wall of my most frequently used social media site this morning, prompted me to write this. Whether or not it helps anyone is another thing and, as I only have four followers, one of whom is dead so expecting this to go viral is unrealistic.

My reply to the post was:  It's very difficult. I kind of adopted a detached attitude, which worked better than thinking I had to somehow cope with every little squabble. Removing myself was incredibly effective. It's as though they were unconsciously competing for my head space.

   School holidays, for young Ed, were pretty much the same as term time as he was rarely there, anyway. Out of a possible nine terms in school at infant level, he barely attended for four of them and a good deal of that was part time. He went through four schools in three years, being permanently excluded from three of them. The ‘successful’ placement was at a small village school founded by the local church and held n the stranglehold of the Rector and his wife, who were both controlling and dictatorial people. Mrs Rector took a dislike to my son who, it seemed, displayed somewhat odd behaviour the good lady wife perceived as naughty. When my son’s class teacher gave him a certificate for good behaviour, Mrs Rector snatched it off him in front of the school and tore it up. How very Christian. I spent an entire performance scouring the faces of the 22 pupils of the school looking for my boy in a whole school production laid on at one of the churches the Rev Rector was in charge of. After the show, I found him in a back room, playing with a water game. Mrs Rector had banned him from taking part and nobody had seen fit to tell me. Years after events like this, my son still tells me new stories about the pain he carried as a child. Like how he was made to stand on a chair at Cubs because he did not want to join in. Typical of an AS kid but, of course, he was undiagnosed at the time because his behaviour was seen as the result of being brought up by a single parent struggling to cope and a bigger, wider, society assuming he was spoiled brat, always wanted his own way, needed a good hiding or even, as my mum once yelled at him ‘just like his mother’. She stormed out of the house in tears after he asked why that would be a bad thing.

'Edmund' now

   Which is why school holidays were almost an irrelevance, with a few exceptions. Nobody asked Edmund why he was not at school during holiday times. The rest of the time was worse than the run up to Christmas. In place of being constantly asked if he was ‘ready for Santa’,  who has never visited our house, incidentally, his most frequently asked question by shop assistants was why he was not at school. Out of his own, unprompted, initiative, Ed used to say it’s an inset day. What else was a 5 or 6 or 7 year-old supposed to say? I’ve been kicked out of school? I don’t go to school? I’m between schools at the moment, thank you? Why don’t you mind your own business? 

   Whatever time of day or place in the academic year it was, I was grateful for the positive help and input we got. There were holiday clubs in the area for disabled children and, although he had no official diagnosis of anything other than ‘mother struggling to cope’, they gave me some respite. Edmund hated them. He spent their duration riding bikes around the yard, on his own. Friends and family would either take him out, or both of us. There was also Kerry, a part time foster carer who took the wee boy for respite days. I sat in reception at the Social Services office, refusing to move until somebody helped me. We were appointed a social worker and introduced to Elaine, the first respite carer. It was a disaster. Edmund only went once after the introductory visit because Edmund locked himself in the bathroom and refused to come out. He was there for hours and eventually coaxed out by a social worker from the local family support centre. When asked what went wrong, he said he had not liked her; she was fat and smelly. Now, with hindsight learned by lots of trial and error, it would have been far better to have left the lad in the bathroom but people do feel they have to manage situations. Nobody knew he had Asperger’s at that time, granted, but even when they did, his behaviour was still dealt with poorly because nobody took any notice of his primary carer.

   Based on an understanding of my son aged somewhere between 6 and 10, I would now give this advice to anyone looking after him. This is not general advice for any parent of any autistic child. If you are such a parent, then you will no doubt know them far better and have a much closer relationship with them than anyone else ever will. So, then, these are Laurie’s hot tips that work with young Edmund. They may be useful to you:

1-      Keep the environment calm

2-      Play down every potentially volatile situation; raising your voice rarely works and usually causes tension to escalate

3-      When face with a weapon (chair, cricket bat, etc) look directly at the child NOT the weapon, walk towards him and remove the object. Stay calm, move slowly. He is your son. He does not want to hurt you. Back off immediately if you sense any danger to yourself.

4-      He needs you to be bigger, braver and stronger than him, or the stress he’s experiencing so tell him you love him; cuddle him and spend time with him. Your relationship can never be too strong

5-      Do not try to use words to reason with him; verbal language is often lost on even verbal autistic children (I used to be one of those, too)

6-      Be consistent. You cannot love him one day and hate him the next. If he’s clever today, he will not be stupid tomorrow.

7-      If you want to know what the hell is going on when he tries to push you in front of moving cars, has a meltdown in Asda or kicks holes in the walls, wait until the situation is calm and you are friends again.

8-      If he falls out with his siblings, leave them to sort it out unless weapons are involved, then see point (3) above.

9-      Be clear and consistent. Do not lower yourself to a shouting match. If it gets tense tell him you are going to make a cup of tea and you will not speak to him until he can be pleasant.

10-   Keep a door key and mobile phone in your pocket when you go outside for any reason. I’ve been locked out a few times so this is a good idea.

11-   Essentially, if you can’t remove the stress from the child, move the child from the stress. It doesn’t matter whether it’s a sibling or situation. Sometimes the situation is you.

12-   Remember how to laugh.

…………………………………

My children, two male and one female are now 31, 25 and 20. The daughter is, as she says, the ‘funny one’, the ‘middle child’ and the full sister of the eldest. Her brothers were both diagnosed with Asperger’s syndrome after me and how it all came about is a story for another day. My daughter has often been urged to take the test but she does not want the label, although she, like the rest of us, can clearly see her greatness. It takes a certain kind of special to store her vast DVD collection in alphabetical order; not only that, but they have to be the right way up in the box, with the titles laid horizontally. They have never all lived permanently under the same roof.

An open email to the HR Manager, Central Region

Some names have been replaced with asterisks

A**e

Thank you for taking the time to write but it seems you may have missed the point of my original email, which now seems to have been passed around quite a few people without anyone actually resolving to take any action. Have you seen it?

My point is not, as you seem to be implying, all that much to do with being unsuccessful at my most recent interview. I did request interview feedback from Amy through the person who rang to say I was unsuccessful and repeatedly through my manager but she has failed to provide any. Please don't bother her for feedback as it is not the point of my emails and being fed endless platitudes is getting tiresome. 

S****n K****r emailed on 22nd July to say somebody had suggested a meeting with me to discuss my concerns. These are copied from an email I sent to Sharon:

It would be nice to see the NAS actually actively seeking to recruit and nurture people on the spectrum. This is the outcome I hope for. If not for me, for the rest of out there in the 85% of people on the spectrum who are underrepresented in the workplace. The feedback I got from the Team Leader position on our team was more to do with how much more the successful applicant had. This is the general feedback from other positions, too, which is unhelpful. I have constantly put myself forward and have, in fact, been given extra duties such as presenting talks to incoming students and their parents, training new mentors and running the Socialeyes groups. 

It's not much use guaranteeing interviews to people on the spectrum, as you say. I have sat across from far too many disinterested people at interviews and have definitely felt my presence there has been to satisfy their 'two tick' scheme rather than see me as a likely candidate. No, the NAS needs to be looking to recruit us, not just tick their own boxes. If, as the NAS claims, really supports people on the autism spectrum, why don't they prove it by aiming to put more of us into suitable positions?

I had an interview last Autumn for the NAS Leicester Information Hub adviser position and nobody even got back to me to say I had been unsuccessful. Not being called to an interview and not hearing is one thing but not being told the outcome of the interview is disgraceful and very unprofessional.

It isn't even about support in applying for jobs with the NAS. It is about the NAS actively seeking to recruit and nurture autistic talent in the employment pool. On all of the vacancies advertised with the NAS, it says: Applications for this job are sought from anyone who is suitably qualified and experienced for the role but particularly welcome from those with a diagnosis of autism or Asperger syndrome. This does not go far enough. You ought to be actively seeking to RECRUIT and NURTURE, DEVELOP and ENCOURAGE people with diagnoses of autistic spectrum conditions. Why is this so hard to understand? 

At the Manchester Autism Show in June (I was one of the speakers and had the biggest audience of the day) I sat down for coffee with Carol Povey and had a reasonably lengthy talk with her about this very subject. My question to her was thus: do you think the NAS is so used to seeing people with autism as service users, they don't really consider them to be realistic candidates in the application process? She seemed to think I had a point.

What do you think?

Will you be reviewing your recruitment policies at any time in the future? 

Regards

Laurie

A Birthday and an Anniversary

It’s my birthday today; or, at least, should be. Providing this story gets published on the right day after being completed and submitted in a timely manner, it ought to be July 3^rd. If it is, then well done all of us for coordinating everything to such sweet perfection. If not, well, there’s always another year. At least we like to think so. Birthdays have always been rather more significant than Christmas, for me, never having been a lover of the melee surrounding such a communal festival. While we may share our special day with several million other people around the world, we do not know most of them and, unless we are one of a multiple birth, will probably be the only person in the family celebrating their personal ageing process that day.

Do others tie global dates and events to things we can pin to our personal experiences? Like remembering what we were doing when JFK was shot? Bit before my time but you get the point. Where were you when you heard about Elvis being found dead? And how did you first hear the news of Princess Diana’s terrible car accident or the Twin Towers ‘tragedy’? What is it that makes me remember November 14^th, 1972 as the day Princess Anne married Captain Mark Philips? Heaven’s sake. That their wedding day fell on Prince Charles’ birthday? Why would anyone outside their immediate family remember that in the first place? Maybe my brother had a point when he said I was always good at remembering dates, which was astonishing news. How could I possibly be good at something I forgot most of?

Days and dates and measurables are important, very often, to people on the autistic spectrum and I am pretty typical in that aspect. This year, on the day before the first anniversary of Connor’s death will no doubt see it adding a lot of reflection on life, death and the passing of time. I will be thinking back to how I spent the day on July 3^rd last year. What were you doing? I cannot remember. Some birthdays are more memorable than others.

There is a Biblical proverb which says: For to him that is joined to all the living there is hope; for a living dog is better than a dead lion. (Ecclesiastes 9:4, JPS 1917 ed). None of us wishes to be old, although many have longed for the wisdom acquired by years to have been more evident in our youth.

As the 107 days has passed and we have, together, counted them, a personal image has grown in my head, brought back from a dusty recess of a childhood memory and a visit to old Mrs Abbot. It was almost forty years ago and shortly after Christmas. Let me take you there.

There’s a clock standing in a dark wood panelled hall; a grandfather clock, standing to the left, set there by Old Father Time himself, surely. A dusty Persian runner stretches from one end of the polished floor to the other. Behind each door lurks a terrifying secret; maybe a monster ready to leap out and interrupt the sound of the languid tick (breathe) tick (breathe) tick (breathe) as its pendulum ambles from one side of the clock’s glass door to the other, hypnotising the dark Victorian house into submissive torpor. Maybe the door to the right will slowly creak open to allow a bent old hag to shuffle through on her slowly unwinding mortal coil? Perhaps the incumbent ghost is about to roll in from underneath the cellar door, like a sticky fog to rise up to the ceiling before stealing the souls of the petrified child shivering with fear in the gloom?  Words from Shakespeare grow like creeping ivy across the memory.

Tomorrow and tomorrow and tomorrow creeps in this petty pace from day to day,

the clock ticks and breathes. Old Father Time stands at the door.

To the last syllable of recorded time;

and all our yesterdays have lighted fools the way to dusty death.

Out, out brief candle!

     Life’s but a walking shadow, (Macbeth, 5:5:19-25)

Terrified, the frozen child stands like alabaster, hypnotised by the minute hand defying gravity to reach the top of the hour and chime.

This year, I will spend much of my birthday thinking about a remarkable young man I was never privileged to meet and whose family, no doubt, be thinking back one year to the last time life had some kind of ‘normal’ attached to it. To his family, I extend a Jewish traditional greeting on the death of a loved one and wish you all ‘long life’. May the memory of Connor, your lion, your Laughing Boy, remain in your hearts forever with the certainty the shadow of his life never leaves you.

Connor Sparrowhawk was a fit and healthy young man, who loved buses, London, Eddie Stobart and speaking his mind. Known as LB online, short for Laughing Boy, he also happened to have autism and epilepsy. On the 19 March 2013, he was admitted to Slade House Assessment and Treatment Unit run by Southern Health NHS Foundation Trust.

Tragically, after #107days in the unit, he drowned in the bath on 4 July 2013. 

Twelve months later #107days seeks to inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes. We want to harness the energy, support and outrage that has emerged in response to LB’s death and ensure that lasting changes and improvements are made.

The #107days of action will start on Day 0: Wednesday 19 March, and will continue until Day 107, the first anniversary of LB’s death, Friday 4 July 2014. This blog will be used to share information, ideas and evidence of the changes made, big and small. For more information, please go to:

 http://107daysofaction.wordpress.com/about-107days/

Text taken from blog. 

Kneading
in a
Box of Lego

A rather bizarre title for a poem but I wrote this as an exercise. I imagined each single syllable word was a Lego brick and there was a whole box of them to be sifted through, sorted and organised until something of a solid form was produced. When you get to the end, ask yourself, what happened?

ONE

                man

ONE

                girl

DAMP

                fog

DARK

                lane

LATE

                night

WET

                road

SHARP

                knife

FAST

                car

BRIGHT

                white

HEAD

                light

FALL

                down

RED

                blood

ONE 

                dead

The Year in Brief

    For the first time ever, I have decided to put together a newsletter to summaries my year, in brief, as many other people do. Instead of putting it into Christmas cards, this is a slightly more environmentally friendly electronic version. It also circumvents several processes; for instance, remembering to print out and post them, which can be a lot more complicated than it sounds.

    The beginning of the year saw Oliver and Felicity’s graduation ceremonies, which were very conveniently on the same day and from the same university, Derby. It was a unique experience as I had never been to one before. Even death threats would not have enticed me to my own back in 2010. Both children now have jobs. Oliver is a business analyst for a cloud company, which means practically nothing to me but it is a very fast growing company and involves him spending quite a lot of time scrutinising spreadsheets for errors. I think. He has lived in Milford with his partner, Suzie, near Belper, Derbyshire for about eighteen months. Felicity moved from her position with IMS Lettings in Derby to a new job in Barnsley. This meant she was able to move into a house with her partner, Dan.

    Martin, aka Ron, finished the plastering course he was on at New College, Nottingham (ncn) and was unemployed for a short time. All credit to himself, he secured a job as a team leader with M&S at their massive distribution centre in Castle Donington. He heads a team of twelve and has shown an impressive amount of maturity for one still so young. He is an inspiration to his team, which is quickly gaining a reputation for its great spirit, work ethic and high productivity. He recently passed his driving theory test and is due to take the practical on February 14^th.

    Work wise, I am still mentoring for the National Autistic Society at DeMontfort University in Leicester. This is turning into a busy year at the university as we have more autistic spectrum students than ever to support. As always, my personal approach is as hands off as possible and I enjoy wonderful, although unconventional, working relationships with my students. For the third year, we are running the Socialeyes social group for DeMontfort NAS supported students and we regularly have six or seven attendees. This is my second year of leading the group, which now meets in a lounge in the students’ union building. Early next month, I will be starting up another group at Leicester University, which will hopefully open up more opportunities for personal growth. It is still my aim to secure a regular income in place of, or additional to, my mentoring job but have decided to no longer disclose my Asperger’s syndrome on application forms. On another positive note, I have been delivering more training and talks and hope to increase my freelance workload as it is a longer term aim to be a full time speaker and trainer, or at least to do very much more of it.

    In January, I will be working with the BBC on a documentary about autism for the Horizon programme. My part in this will be pretty small but useful to go on a CV. I still work with autism researchers around the country, mainly at City University in London.

    On April 20^th, my dad died suddenly. Of course, it was very difficult at the time but, as a small mercy, work at DMU was almost over for the academic year and I took as much time away from my other, salaried, job as I needed. I helped dad’s wife out a little but, to my dismay and deep hurt, found that children of dead relatives have little or no say in any arrangements. I wrote and delivered the eulogy at Dad’s funeral, which was held in a Catholic church. For some reason, dad had been drawn to the Catholic way of worship. The incredible support from my children and Martin/Ron, especially, friends from within my Jewish community and my very patient partner, Jonathan, was heartening and very needed. I do, however, feel very let down by dad because he did not leave a will. Everything was passed on to his wife, which now means many personal items which have been in the family for very many years are probably lost forever. You can read the eulogy by clicking here. http://calling-earth.blogspot.co.uk/2013/05/dads-funeralthank-you-so-much-for-being.html#links

The demographic of pets in the family has altered quite a lot. At the beginning of the year, we had four cats and two dogs. We now have three cats and the same number of dogs. We had been looking after Simba, Felicity’s cat, until such time as she could take her off us when she moved in to her house in Barnsley. We then adopted a beautiful little tortoiseshell kitten I called Natalie, which took us up to four cats. In February, a young black and white cat moved in to the garden. Advertising him in as many places as we could think of, we eventually adopted him and he developed an attachment to Ron, who called the little guy Isambard Kingdom Brunel. In May, shortly before dad’s funeral, we took in a two and a half year old cocker spaniel we re-named Lexikate. She is a bouncy, energetic and fun little dog but nervous of men. Although she has settled down really well, Lexi can still be jumpy with strangers. Simba went to live in Barnsley and Isambard, very sadly, was hit by a car and had to be put down. Even now, we miss him. He was a fluffy, dozy dollop, with enormous paws who liked to ride around on Ron’s shoulder.

    There is little left to say apart from to wish everyone the kind of Christmas they hope for, spent with people who care for and love them. May every one of you have a great New Year.