Research backs Emma’s FACS battle

One of my fellow special needs mums, whom I met over Twitter, Emma Murphy, is spearheading a campaign highlighting the emerging dangers of taking the Epilepsy drug Sodium Valproate (Epilim) in pregnancy after many cases have emerged of children born to mothers taking the drug had developmental difficulties and other disabilities. It’s being described as ‘the new thalidomide’.

Emma and one of her children

Emma and one of her children

Emma Murphy has already made a splash with her campaign and today there is an article in the Telegraph about research which bears the anecdotal evidence out.

The findings were published online in the Journal of Neurology Neurosurgery and Psychiatry. Researchers at Alder Hey Hospital in Liverpool, studied 528 women in the north west of England. Just fewer than half the mothers had epilepsy and all but 34 of whom took anti-epileptic drugs during their pregnancy. Fifty nine mums took carbamazepine; 59 took valproate; 36 took lamotrigine; 41 took a combination; and 15 took other drugs.

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Storytelling Week

My colleagues over at NetBuddy have an article in The Guardian about Storytelling week and how to engage your children, especially those with special needs, in the wonder of a great story.

I’m delighted to have been quoted in the article, which you can find here: Storytelling: Netbuddy’s top tips

My own tips, from my own experience are:

  • Choose your books carefully: Books can be an ideal opportunity to instil social awareness. There are many great books that can help and that use social stories to model behaviour.
  • Repetition and associating reading with something pleasurable is the key. As a former TV and radio newsreader, I know that the way you read and the words you stress are just as important as the actual words themselves.
  • For my children, repetition not only of the story but using the same intonation, helped them with familiarity of a book and helped them to link the story with the image. Using the same tone and stressing the same words each time, meant they knew what to expect and helped them to join in.
  • Many children with ASD are highly visual and so using a book that has bright and engaging images coupled with reading the story the same way every time can serve to make the book a ‘safe haven’.
  • Choosing a book that coincides with a child’s special interests is always useful – this is why Thomas the Tank engine is so popular with boys with Asperger’s!
  • Even now, though Son2 is 13, he can still remember the books we read together aloud. He loved Thomas but the ones he really remembers are not the ones you would expect – “Oi, Get off our train” helped feed his environmental awareness, “Dudley Top Dog” appealed to his love of dogs and “Guess how much I love you” was soothing, every single time we read it.

These are ours. What are yours?

Guess How Much I Love You

Guess How Much I Love You

Dudley Top Dog

Dudley Top Dog

9780399233678

Son1’s Fave: Little Bear’s Trousers

9780099853404

Oi! Get Off Our Train!

A morning with Monty, a very special boy.

My good friend Angela, who is my ‘co’ in co-chair at Family Voice Surrey, always has an air of unflappability. I’m not quite sure how she does it.

As well as being the parent of two sons with ASD, she is studying to be a psychologist. Angela’s younger son, Monty, is a delightful boy who attends a special school. But his ASD means that, like other children with autism, he has a schedule and a sense of reasoning all of his own that can be exhausting.

Here, Angela writes for SNJ about a morning with Monty.

***

In the distance I can hear screaming. It sounds terrifying and it’s coming closer.

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Ten tips when your child is newly diagnosed with a special need or disability

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He’s not a condition, he’s my boy

You may have suspected, even all but known, but the moment when you finally get a confirmed diagnosis for your child is a watershed.

You may feel numb, distraught, helpless. If you had dreams or expectations for your child’s future, they’re now in tatters. It’s time to start again with a fresh set of hopes.

When your child receives a diagnosis of any special need or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD.

But what practical steps do you need to take? Here are ten tips below, please add your own in the comments.

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Key Working : Whose Job Is It Anyway?

When the SEND Green Paper was launched in March 2011, the Department for Education said they would “test the role of key workers”.

Several parents approached our parent-carer forum in Kent asking “What is a key-worker”,  “Can we choose the  key-worker  if we are involved?” and “Can a key worker be employed by the Local Authority and be truly independent?”

Confused by Key working?You're not alone...

Confused by Key working?
You’re not alone…

Eighteen months later, parents are still asking the same questions and practitioners are, understandably, asking “Is this another task for me on top of my existing, increased, workload?”

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SNJ is the new SEN site expert on NetBuddy!

NetBuddy logo strap_V1[1]I’m delighted to tell you that I’ve been asked to be the new SEN site expert for Netbuddy.

Netbuddy offers practical tips from people with first-hand experience of learning disability, autism and special needs. It’s a great resource and I’m really pleased that they’ve asked me to join their team of advisers. (more…)

Chinese Whispers and Garth’s Uncle

As you may have read on Friday, Special Needs Jungle has a new regular contributor in Debs Aspland, the director of Kent PEPS and parent of three children, all with disabilities. Today is her first post about the essentials of good communication.

Communication:  the imparting or exchanging of information or news

It sounds so easy.  It requires one person (the sender) to give another person (the recipient) a piece of information.  The communication is complete when the person receiving the information understands what the person giving the information has said.  So why is it so difficult?

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Teenagers and suicide- a growing challenge for our times

Mental health in adolescents with or without special needs is a growing concern and a particular interest of mine.

I found an article on MedPage Today about a survey of teens who had been treated for suicidal thoughts and mental health problems that indicates they are still at risk of attempting suicide. This, to me, says that  just because you have sought help for your young person in this situation, you can never afford to think the problem has gone away.

sad boyParenting teens is, in so many ways, much more difficult than parenting younger children. A balance must be found between watchfulness and intrusion. They naturally do not want to share their inner thoughts with their parents and keep so much more to themselves. They often think that they should be able to sort out emotional problems for themselves, when they are in no position to do so alone. (more…)

Exciting news from Special Needs Jungle-bringing in a fresh perspective for 2013!

I have some exciting news for Special Needs Jungle for 2013!

In 2012, the site really took off and now covers a much wider range of issues about special needs and disabilities, thanks to the many fantastic guest posts that people have kindly contributed. I am aware that my boys are growing older and have a certain type of special need and I have been thinking about how to expand the parental perspective  for the site.

Last year, I met the most amazing woman, a fellow transplated Northerner with an incredible knowledge of SEN/D who also has three children of her own with a range of disabilities. Her name is Debs Aspland and she is also the chair of Kent PEPS parent carer forum. Her energy and dedication amaze me.

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Ordering at Starbucks, Asperger’s style

Yesterday, I took the boys shopping to Basingstoke. As I’m not currently able to walk far, I sat in Starbucks armed with my iPad to do some work, while they toured Festival Place, pockets filled with Christmas cash.

Now, I’m not good at Starbucks. I don’t even like coffee that much and would rather not consume my daily calorie allowance in one latte topped with whipped cream. Then, what size do you want? I can’t even remember what the sizes are called, never mind how big they are. By the time I get to the front of the queue, I’m as glazed as a doughnut, so I always go for tea, Earl Grey, errm, medium? Ish? I know, it’s very “Mrs Brady, Old Lady” of me.

cupI hadn’t been there too long before Son2 joined me with his purchases from Lush. He is a big Starbucks fan so I gave him some cash for a drink and he joined the inevitable, slow-moving queue.

I had a proud moment, marvelling at how Asperger’s Son2, 13, was now able to queue and ask for what he wanted by himself as well as meander round the shopping centre (that he knows well) without me.

I watched from my seat as he made his choice, paid and wandered over to end to await his order. Then Son1 appeared, exchanged a few words with his brother and came over to me, looking incredulous.

“He said the woman asked what his name was to put on the cup and he told her it was David!

David is not Son2’s name. Not even one of them. Not even close. Son2 approached with his drink and I asked him why he’d said that it was.

He shrugged. “I panicked!” he said. I understood immediately, for, dear reader, the apple doesn’t fall far from the tree.

We headed back to the car but it soon became apparent that Son2 was not enjoying his choice of beverage, a Vanilla Spice Latte. He passed it to Son1 who asked him why he’d chosen it.

Son2 grinned. “I panicked…”

Skiing, Steam Punk and a view to the future

Happy New Year and I hope you all had a great Christmas without too much stress!

Ours was relatively quiet, with both Son1 and Son2 away skiing with their special school in the run up to the big day. We were more than half-expecting to have to fly out to Italy to collect Son2 after a few days and, indeed, he did Skype me gloomily after the first day, reporting that he didn’t like skiing and couldn’t stand up, his joints hurt and he felt faint. Sure enough, that evening, the phone rang. It was one of the party leaders assuring us that he was fine, and they would be trying their best to persuade him back onto the nursery slope the next day.

We held our breath until we heard back from Son2 the next evening. And what a change! Thanks to the experience and knowledge they have of him and their patience with reluctant participants, he had got the hang of it and was, he said, “Almost ready for the slopes”. By the end of the trip he was, “Better than Mr Faasen”, the school’s 12 foot rugby-playing PE teacher, whose care of Son2 last year made a huge difference to him. (more…)