#SilentSunday Rockstar in Training.

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#SilentSunday: A Parenting Truth To Live By

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My Daughter's Trial - a compelling play by my friend Gulshanah

Rehearsals are now underway for My Daughter’s Trial, written by my friend, Gulshanah Choudhuri, an SEN Barrister and the mother of a daughter with Down's Syndrome.

The play, described as compelling and fast moving, features Parveen, an ambitious young Muslim barrister who faces her own trial when she must decide whether to section her mentally ill mother against her family’s wishes.

As Parveen juggles her professional and personal responsibilities, the action switches rapidly from courtroom battle to domestic turmoil, made even more complicated when her opponent in court turns out to be the love of her life.

Witness the actions of both the defendant and Parveen, and judge for yourself who is really on trial

The play is being staged in the atmospheric former Westminster County Court, hidden away in Covent Garden. 

Parveen is played by Goldy Notay.  Goldy is best known for playing the lead in Gurinder Chadha’s It’s a Wonderful Afterlife, Basimah in Sex and the City 2, and opposite Martin Clunes in the ITV series The Town.  She recently starred in Beloved, Produced by Len Loach, which was the closing night film at Cannes. She is a well-known face on TV from regular appearances in Holby City and Doctors

Capacity is limited so don’t leave it too late.  Put it in your diary and book your tickets now.

April 8-11, 15-18, 22-25  7.30pm
Brown’s Courtroom
Above Brown's Restaurant
82 St Martin’s Lane
London WC2N 4AG
Book tickets via
Soho Theatre Box Office  020 7478 0100
Or via www.sohotheatre.com

Gulshanah's website is at http://senbarristers.co.uk

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The tumble dryer that felled "superwoman"

It was the tumble dryer that did it.
You know when you're going flat out and then something unexpected happens that suddenly overwhelms you? Well for me it was the tumble dryer packing up. On a weekend. When Son1 was away on a very dirty survival weekend in the Lake District.
You could say, well at least it wasn't the washing machine, and you would be right, but still, when you live with two boys and a husband who exercises, a lot, it's still pretty bad. Youngest also likes his clothes soft and cuddly, not stiff and line dried and when you have Autism, this matters a great deal.
You wouldn't think something as every day as a broken tumble drier could spark such a wave of knock-down exhaustion, but it  did.
I've been working pretty much flat out this year with my DysNet job, my Special Needs Jungle doing really well and being involved with the Surrey SEN pathfinder reform. I've been on business trips to Belgium and Sweden and met many new and wonderful people through my work  and I've enjoyed it all. Well, most of it, anyway.
I have been energised, flying. I've even been described a few times, rather amusingly, as "Superwoman."
But I bet superwoman wouldn't have been defeated by a tumble dryer.
Superwoman wouldn't have wailed so loudly that her husband hurriedly offered to take the pile of wet laundry to dry at the launderette.
"We live in Farnham!" I cried in response. They don't have launderettes! When people in Farnham's tumble dryer breaks, they just get a new one!"
He quietly picked up the pile of damp washing and hung it up on airers in the conservatory, flicking it out to release the creases like an expert.
I skulked into my study, checked my email and listened to Joss Stone on Spotify asking "Tell me what we're gonna do now." Well quite.
Well, of course, what I'm going to do, once I've got over my mini melt-down, is ring D&G and book a service call. Though the local people can't come for a few more days.
Problem solved, you might think.
So why do I feel like I've suddenly been run over by a truck? Why is it that a tumble dryer breaking has prompted all the not so good things that have happened in recent weeks to play on my mind?
All of a sudden, exhaustion has knocked me down like a tidal wave. I take a nap and wake up feeling like I haven't been asleep at all. Waking up in the morning feels like it's the middle of the night.

There is a tightness in my chest and eating makes me feel sick. The incredible workload that I was managing well now seems like I'm at the foot of Everest with not a Sherpa in sight.

I'm old enough to know that, in the end, this too shall pass. Maybe with the help of a spa day or a day out, if at all possible.
But it just strikes me as funny that the final straw can be something that you least expect.
And just in case you're wondering, AEG, your A-rated vastly expensive Lavatherm 59800 condenser dryer with heat pump, sucks. Had it four years and it's broken three times already. Considering it cost £500, that's something approaching rubbish.
Just sayin'

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Why coffee mornings are good for the soul

Earl Grey and a restorative chat

Being a parent of children with special needs can be isolating. You may have found that your circle of friends has grown smaller as you've struggled with learning about and coping with your child's differences and finding the best help for them. 

Parents of 'normal' children haven't had to go through this and may find it difficult to understand. You feel like you're banging on about your disabled child and boring them to tears or, worse, making them pity you. So gradually, you withdraw and in time you may have found that you have few people outside your family to talk to - and even they may not understand.
You may even find you barely go out at all, because going out with your special needs child is like preparing for a mammoth trek across hostile terrain requiring such careful planning for unseen eventualities that you're exhausted before you get out of the front door.

Teachers may not properly understand or cater for your child's needs. Other parents, many of whom don't know you or your child, may stand in judgement of your apparently inadequate parenting skills.

You may start to feel depressed or unable to cope with the demands upon you. You may wake up every morning, open your eyes and think, "Here we go again". Some parents have described it as being like Groundhog Day and I can totally empathise with this.

I've come late to the party, but in the last few months, I've embraced a partial antidote - the special needs coffee morning. A place where no one pities you because you're all in the same boat. A place where you can discuss your child's behaviour without fear of judgement and where you may even hear some practical tips that have worked for other mums in a similar position. A place where you can talk with like-minded souls about the absurdities of trying to find the right educational provision and the hoops you have to jump through to get it. A place where friendly ears are guaranteed, along with a reviving cuppa and maybe even a yummy piece of cake.

This week (and it's only Tuesday) I've been to two - one I have been hosting at my house for NAS Surrey in Farnham and the other at St Saviour's Church in Guildford, where I was invited to speak about my Special Educational Needs Statementing book.

The women (mainly) at these groups are welcoming, determined, resilient and caring, despite the battles that they have fought or are still going through and the daily challenges that caring for often unreasonable, sometimes aggressive but always loved disabled children brings.

No one judges you, everyone swaps stories, tips, resources and support and it is such a relief to be able to share frank experiences with others, knowing they're not going to be shocked.

After I spoke at the Guildford coffee morning today, Psychologist, David Wheeler, gave a talk. He spoke about how many problems with children and adults are caused by their 'needs not being met'. We parents of special needs kids, more than most, spend so much of our time trying (and often failing) to meet the needs of our children that we have no time or energy to meet our own.
Coffee mornings like these are a good way to meet some of these needs to talk to others, share our stories and knowledge and let off steam.

If you are a special needs parent feeling isolated, why not join a group that has coffee mornings, some have creches - or if you know other parents of SEN/disabled children, have a meet up. 

If you run or know of such a group, why not leave details in the comments - you may well be helping someone.

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The Teen Party - I survived but Youngest almost didn't

So, the day of the much anticipated teenage party arrives. Son1 is cool about it as usual. I am running about checking he's thought of everything before I realise that it's his party and if he can't be bothered to pre-plan, then neither can I.
Apart from, of course, ordering in all the food and soft drinks that will be inhaled by the party goers. This is my job, to be welcomingly silent, remain in the kitchen and produce copious amounts of refreshments.
As I'm setting out cans of drinks (less easy to spill than glasses, I reason), Youngest 12, enters the kitchen. He's not been having a good time lately, his Asperger's has rather taken over.
"I'm going to sit on my bedroom balcony for a bit," he announces. Distractedly, I reply that he doesn't have a balcony. We've just refitted his Technolair but a balcony was not on the specifications.
Minutes later, I hear a rumble and then Youngest falls past the kitchen window, crumpling to the hard patio floor outside.
I shriek and dash out as Youngest picks themself up ambles off. "Oh My God! I screech, what did you do? Are you hurt? You could have been killed!"
"I slipped," Youngest says calmly. It turns out that the 'balcony' was the windowsill and Youngest had slid down the small half-roof under it and tumbled to the ground, falling ten feet. A grazed knee, nothing worse, luckily but my nerves were shot.
I locked his window and poured myself a calming sherry.
Minutes later the first party goers arrived. My visiting sister, unused to teenagers, took herself off to her room and shut the door. Then she evacuated the house entirely for the relative peace of the nearby pub while I tried to ignore the noise level that only twelve teens, girls and boys can make.
I think the party was a success. Certainly Son1 was happy. I shared a glass of wine with some of the Mums at the end and the house was ours again by nine thirty. The Sky+ HD remote control vanished, never to be seen again - no one has admitted responsibility.
Would I let him have another party? Well, yes, I think I would. His friends are all nice young people, polite and respectful. But most of all, I cannot say enough how wonderful it is for Son1, whose ADHD & undiagnosed Asperger's when in mainstream saw him with almost no friends and an angry child. Now, with four years at the right specialist school with intensive social skills training and support, he's doing well and his recent review at school described him as a popular boy. This thrilled me more than any academic success.
I hope that with the continuing support of his school, he can turn these newly found skills into second nature. He's going to need them - he's climbing Kilimanjaro in 2013.

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Boys safety threatened- Teachers and Police make swift response

Big drama at our boys' school yesterday. After a phone called threatened extreme violence against the school, the boys, who all have some type of special educational need, were speedily escorted to the large sports hall where they stayed along with staff, teachers and even the builders for the next five hours, protected by armed police and the police helicopter.
By all accounts, the boys behaved impeccably, despite the lack of lunch - even the catering staff had to seek sanctuary in the hall.
Parents were kept as informed as possible, given the circumstances, although we were understandably frantic, not knowing what was happening and if our sons were in any real danger.

Debbie Cox, Mum (Meridian TV)

After the police ascertained that it was safe to do so, the boys were let out and the fantastic catering staff got to work to whip up some lunch for the boys, aged from 8-18.
I would like to thank all our school's brilliant and talented teachers and staff and Surrey police who looked after our sons so admirably in an unexpected time of crisis.
The police response was swift and decisive - a lesson to anyone who thinks they can terrorise vulnerable children for any reason. The person who allegedly made the phone call was apprehended before the day had ended on suspicion of making threats to kill. I'm really not sure what makes anyone do such a thing or even if he had the means to carry out his threats, but our police officers are to be praised for their response.
Today, the teachers set about reassuring the boys. My own youngest, who has Asperger Syndrome, was so anxious that we kept him at home for a recovery day.
Today, Meridian Television put together a report on the incident featuring some of our boys, our Deputy Head, Andy Williamson and gorgeous mum, Debbie Cox (not Knox as titled!)
You can view the story here:

http://www.itv.com/meridian-west/threats-to-pupils47416/

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Ritalin, talking therapies and what I think our kids really need

On the Mumsnet blogger site there was a piece by MP Pat McFadden about the increase in prescribing of ritalin. I wrote about it on my www.specialneedsjungle.com blog, but as it's something I feel so strongly about, I'm reposting it here.
Ritalin, talking therapies and what I think our kids really need…The Health Minister, Simon Burns has said that the chief medical officer and the NHS medical director are planning to write to clinicians to remind them of the full range of NICE guidelines on conditions—including ADHD—that affect children’s mental health. It came in response to an adjournment debate called by MP Pat McFadden on the rise in prescriptions for children of the drug methylphenidate (Ritalin, Equasym etc) used to treat people affected by the symptoms of attention deficit and hyperactivity. These symptoms affect behaviour and the ability to learn and as well as being found in ADHD, are also co-morbid in young people with autism, Asperger Syndrome and other similar development disorders.

Mr McFadden made a plea for the Minister to carry out a proper, comprehensive review of the use of these drugs involving professionals from the medical, psychology and teaching fields, as well as the families of those who have been prescribed the drugs. He asked the Minister, “Will he commit his Department to carry out a proper research project into the use of the drugs, including the age of the children receiving them? Secondly, in the light of the huge growth in prescriptions, will the Government carry out a proper review of practice in the field, as called for by the Association of Educational Psychologists, before the new guidance comes into effect in 2013?”

Mr Burns said he himself had a family member who was successfully being treated with Ritalin. “Across hospital and primary care, the prescribing of drugs for ADHD increased by around 12.5% between 2007 and 2010, the latest four years for which data are available, and by around 6% in 2010 alone. Prescribing in primary care alone increased by 22% in that four-year period, reflecting a significant shift in prescribing activity from a hospital setting and into primary care. Looking back further, one sees that prescribing in primary care has tripled in the past 10 years.”

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It weren't like this in my day..

Coming to the end of a long, long, long summer holiday. I haven't written anything for over a month because my children have squeezed out any energy I have as if they were sucking out the last drops from a Capri-Sun juice pouch.
Don't think I don't like having them around, I do. But for two months and four days solid? When everything they want to do besides play on the computer either requires a) great expenditure of money that I don't have, or b) great expenditure of energy that I also don't have.
They've been on a film and animation course (£70 for one for two days) and a make-a-movie course (£280 for both for a week); they've been to Grandma's several times; they've been to Italy; they've been to the park with the dog umpteen times (and complained every single time); they've watched the Disney Channel until they developed American accents; they've had friends over and been to friends' houses; they've been on bike rides and long walks. And now, by September, they are experts on Roblox, a computer animation program for kids where the worst that can happen is to be called a 'Noob'. My eldest son knows every Michael Jackson song word for word (and of course, that means so do we- I can hear it as I type).
The thing is, all of these activities, except the TV watching and computer time, involve an adult, ie, me or sometimes Grandma.
When I were a lass, oop North, I used to spend the summers wandering around the village and meandering through fields and along streams alone or with friends. My sister and I used to play out for hours, unfettered by the irritation of grown-ups, coming home only for dinner and tea (we didn't have lunch in the North-West). We used to call round for friends across the village without a parent needing to be with us.
Even on school days, my mother would leave for work at 8am and we would have to get ourselves to school, home again and start the tea, letting ourselves in with keys that were tied with ribbon around our necks. Now, I'm not saying being a latch-key kids was ideal, but it taught us independence and to make our own drink of juice if we wanted one at the very least.
Is the danger to our kids any greater today than it used to be? Well, yes, it is if you count the increase in traffic and as my kids have Asperger Syndrome, it's not so easy to let them out of your sight. But is the danger of being snatched off the street by an evil-doer any greater? I honestly don't know the answer to that, but I do know that because of the media input, the fear of the worst is much greater than it was when I was a child.
I don't remember my mother ever worrying about us being kidnapped and murdered when she waved us off on a Saturnday morning to walk to Tottington for our ballet class, or of me coming home alone from school aged 7 through our quiet village. She wouldn't have dreamed of walking or driving me to a friend's house unless it was too far for foot travel and not on a bus route.
And yet, even if my children didn't have special needs, I couldn't imagine letting them go any further than a short walk with the dog, and that's only the elder one as he is almost my size.
The question is, does this lack of early freedom do our children any long term harm? Or any long-term good? Again, I don't know the answer but I'm not about to experiment with benign neglect to find out. I would, however, be interested in your views, so leave me a comment if you have time.

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Credit Crunched

For the past six months we have been a no-income family. My husband was made redundant last December (and a Merry Christmas to you too, Fidelity Investments).
Since then he has applied for literally hundreds of jobs, along with several thousand other financial services accountants who had also been turfed out of their jobs.
My husband is quite senior and quite specialised, which made the hunt for a new role even more difficult. Recruitment agents, for there were many, were with a few exceptions, useless, often clueless and frequently in need of a few lessons in the etiquette of returning phone calls. The problem is they're not evil, just overwhelmed with desperate candidates all looking for work.
The most depressing aspect was the fortnightly visits to the job centre. Last time, my husband was told he needed to 'widen his scope' in the nature of jobs he was looking for. Thanks for that, Gordon Brown. One minute you're a boss with an MBA, the next you're looking for work as a supermarket trolley collector and all those years of study count for naught. Let's see how you like it next year when your P45 arrives in the ballot box.
I was a 'Blair babe' for the last three elections. I was born a northern, working class girl from a single parent family. I worked hard, got a good career for myself, married and gave up work to look after my special needs children. We are the very kind of 'hard working family' that politicians bang on about. We did what we were supposed to do. Now, thanks to the greed of those at the very top, we're also victims of the so-called credit crunch and lax regulation of the banking system.
Now I've realised I'm no longer working class. I've pulled myself up by my clichéd boot-straps into the upper middle classes who pay 40% tax and don't get tax credits of any kind. Blair and his mesmerising rhetoric are gone and in his place is someone who I'm sure means well but for whom I did not vote. It's time for us to have a general election so we can cast our verdict on the state of Britain and who should lead us.
The last six months have been exceptionally stressful. Like most people, we have a mortgage to pay, food to buy and also school fees to pay for our elder son's independent special school. My husband negotiated a good redundancy package and we had hoped he would fall into a job and we would be able to keep most of it.
Unfortunately, that's what everyone else in his sector was hoping too and for the first half of the year their experience 'more closely matched what the client was looking for'.
Still, despite everything, we have been lucky. We are not destitute, we are still up on the deal, just, and my husband has had six months off to tend to his hobbies and his new Brian May Red Special guitar.
I have had company at home, where I work from, and the children have had much more access to their Dad than would have been the case had he been slogging away in the office. The sad thing is, we haven't been able to enjoy it, because of the fear of running out of money and the uncertainty of whether he would ever get a new job looming over us.
I'm going to miss him when he starts his new job in a week's time. I'm going to have to take the kids to school every morning myself as well as pick them up. There'll only be the dog to talk to and I'll have to do all the walking, rain or shine. But that's okay. That's part of my job description anyway and for the first time this year today I woke up feeling relaxed and well rested, not anxious and depressed.
Only now do I feel able to write about our experience. But, Mr Brown, you've lost our vote, not that it ever counted for anything in the Tory heartland where we live in Surrey. Our Conservative MP seems like a nice chap and I may well find myself, for the first time ever in a general election, voting with my head rather than my heart and my roots.

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