The Sensory Story Project

We love The Sensory Story Project and have been watching it from its early stages.

As a mum to a child with a visual impairment, sensory stories are a huge part of our lives but trying to find or make suitable sensory toys to read with stories has become a problem as he has grown older.

Jo, who created the Project, kindly provided a few sample ideas for us to look at and I asked my son to take a look.

Take a look for yourself and let us know what you think.

NICE guidelines for treatment of autism in children and young people published

NICE, The National Institute for Health and Care Excellence, has today published new imageguidelines for the treatment of autism in children and young people. “Autism – the management and support of children and young people on the autism spectrum” has been developed in collaboration with the Social Care Institute for Excellence (SCIE) and is the culmination of a long period of public consultation.

The guideline includes the different ways that health and social care practitioners can provide support, treatment and help for children and young people with autism and their families and carers, from the early years right through to transition into young adulthood at 19. It states key priorities as:

  • Full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.
  • Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism. This includes the impact of autism on the young person and their whole family or carers, how to assess risk and how to provide individualised care and support, ensuring a consistent approach across all settings.
  • Making adjustments to the social and physical environment and processes of care. This includes using meaningful visual supports, personal space and sensory sensitivity requirements and arranging appointments at the beginning or end of the day to minimise waiting time.
  • Working with parents, carers and teachers to use play-based strategies aimed at increasing attention, engagement and reciprocal communication in the child or young person. The guidance states that any interventions should be delivered by a trained professional.
  • Understanding enough about the child’s condition to be able to anticipate and prevent challenging behaviour. This includes being aware of sensory difficulties, any mental or physical health issues such as pain or anxiety, co-existing ADHD, communication problems or changes and difficulties at home.
  • Families (including siblings) and carers should be offered an assessment of their own needs, including personal, social and emotional support. Practical support such as short breaks and emergency plans and assistance with planning for future support of the young person.
  • Transition to adult services should inform and include the young person in the planning and, where appropriate, their parents or carers, as well as informing about their right to a social care assessment at age 18. For young people aged 16 or older whose needs are complex or severe, use the care programme approach (CPA) in England, or care and treatment plans in Wales, as an aid to transfer between services.

Research Recommendations

The guidance also made several recommendations for future research for the improvement of autism services.

  • A key worker approach for children and young people with autism and their families should be formally evaluated in a randomised controlled trial.
  • Managing behaviour that challenges in children and young people with autism. A group-based parent training intervention (such as educating parents to identify triggers and patterns of reinforcement) should be evaluated using an RCT.
  • Managing sleep problems in children with autism using sleep hygiene intervention or melatonin in children (aged 4–10 years) with autism.
  • Treating co-morbid anxiety in children and young people with autism to look at the comparative clinical and cost effectiveness of pharmacological and psychosocial (such as Cognitive Behavioural Therapy) interventions for anxiety disorders in children and young people with autism.
  • Teacher-, parent- and peer-mediated psychosocial interventions in pre-school children with autism to investigate if comprehensive early interventions such as the LEAP model, are effective in managing the core symptoms of autism and coexisting difficulties (such as adaptive behaviour and developmental skills) in pre-school children.

What NICE says not to use

The guidelines also state interventions that should not be used, which may prove controversial to some.

These are the use of neurofeedback or of auditory integration training to manage speech and language problems and the use omega-3 fatty acids to manage sleep problems.
The guidelines also state that the use of secretin, chelation or Hyperbaric Oxygen Therapy should not be used to manage autism in any context in children and young people.

The above is just a prėcis of the whole guideline,  that you may wish to read in its entirety, but it gives an overview of what is included. You can find the appendices here What do you think? Are you pleased with the guidance and will they improve services and treatment?

Learning Disability Week – our own superheroes

Mencap have launched Learning Disability week to raise awareness across the UK.

This year Mencap are celebrating families and recognising the hard work they do to support their loved ones.  Their theme is “Who is your Superhero?” and this has caused hours of conversation here at SNJ.

We came up with several people whom we admire and are inspired by, but no one felt quite right. This was because we both kept coming back to the same answer in our heads, but it just felt a bit sappy to say it out loud, being the bad ass gals that we are.

Who is that person, we hear you cry? Well, and we make no apologies, that person – those two people – are our husbands.

Debs:    I met Chris and within 18 months we were married.  I could be me with Chris – warts and all – and he was still happy.  Then Chaos in Kent arrived.  Within 10 months we were parents to K and 2 years and 4 days after our wedding the twins arrived and somehow we were parents to three children.  The next few years were chaotic to say the least – premature births, hydrocephalus, Visual Impairment, ASD, SLCN, Dyspraxia and a number of other labels were hurdles we had to face.  We had to sit outside operating theatres, sit beside incubators, learn a new language and system and somehow find time to just be mummy and daddy.  We also had to remember to be Chris and Debs – which as any parents will know is not easy – but somehow we did this and managed to stay together and more importantly, we also still smile and laugh together.

chris collageHe is a really hands-on Dad who has never once shown any disappointment or shame in having kids with disabilities. As far as he is concerned, we have the three most amazing children ever!  He calls them his “hat trick”.  He is the Dad who bores his friends with Youtube clips of the kids; he is the Dad who forgets that one of our children is blind and then tries to keep a straight face as J tells him off for walking him into an obstacle. He is the Dad who is more excited than the kids at the Cadbury’s outlet store and the Dad who has had to learn to share his beloved PS3 and PS Vita.  He is also the Dad who will do the appointments if I need a break.  When J was younger, he wore artificial shells in his eyes.  Having them fitted and measured was just too much for me at the time so Chris took time off work and these appointments became Dad & J time.  There was no sacrificing sighs or comments, he just knew that this was what I needed.

I write blogs, speak at conferences, support friends who run support groups, coach colleagues and I also run a parent carer forum – most of this on a voluntary basis.  I also provide training across the SE and in addition to all of this, I am a mum and wife!  I hate saying no to anything and I am an “ideas” person so often find myself sat at midnight on my laptop researching a new project or trying to keep all the balls up in the air.

Chris just supports me.  He listens to me rant about politics and personalities, he listens to me rave about a yet another new idea I’ve had, he even took to twitter so he could share my work.  He drives 40-50 miles to work each way every day and often, has to start making dinner when he gets home because I have been so full on with the kids or work that I’ve not got round to it.  He is the dog walker, the toy fixer, the go-to video game man, the bacon sandwich weekend man and he also cooks a mean roast dinner.  The kids adore him and watch for his van to pull up at night because they know there will be tickles, teasing, throwing into pools and all the other things they love.

Now, don’t get me wrong, before any women out there start thinking I am married to a saint, let me assure you that Chris is a total bloke – he worships Liverpool FC, drives a white van, can sleep through the loudest noises, doesn’t know how to put clothes in the washing basket and I have to “remind” him when certain tasks need doing (I say “remind”, he says “nag”).  He is however, a totally supportive husband, a much-loved and adored fun Dad – so yes, he’s my Superhero.

Tania:

Marco and I have been married for 16 years next month. It was not a long courtship. We got together on a Sunday, He gave me keys the following Tuesday, I moved in to his flat in Clapham the next week. Two months later we were expecting Son1, Two months after that we were engaged and five months later, we were married. I have never, in all that time, doubted that I married the right person.

m&tLike many parents of kids with Aspergers, realising your child is different is a gradual process and he has been at my side every step of the way.

Although we were 29 when we met, we were still kids and we’ve grown up together having plunged head-first into parenting. Sceptics thought we’d never last, especially with my somewhat flighty track record.

The two of us with a new baby that neither was really prepared for was like watching a TV comedy, me the ‘glamorous’ TV newsreader, him the handsome, witty.. er.. accountant. Both of us clueless. Especially because Son1 was not your average babe who defied the parenting manuals. Defiance is his middle name.

Son1 would lie between us and repeatedly raise his legs in the air and bang them down on the mattress in the middle of the night. He’ll get fed up in a minute, we thought. He did not. Marco had to hold Son1’s legs down to stop him – and that kid was strong, even at four months old. This was not in the handbook.

Sleepless, Son1’s eyes would glint scarily in the light of the street lamp outside our flat; it was a sure sign of things to come.

We made it through those long, difficult years of discovering that our boys had additional needs, diagnoses, relentless fainting attacks by Son2, screaming meltdowns from Son1, finding schooling solutions, making adjustments, applying for statements,  even moving home to facilitate all this.

I was bad-tempered, anxious, exhausted, often ill (which we now know is Ehlers Danlos), irritable when under stress, which was most of the time.

And Marco? He was patient, understanding, loving, constantly helping me, even coming home from work because something had happened that I couldn’t cope with.

Now, when the boys are older, instead of things getting easier, the opposite has happened because of my illness. His life has got harder, taking on the lion’s share of driving the boys around, cooking, tidying, learning a new role of pushing me in a wheelchair, which is hard for both of us to come to terms with.

I meanwhile, am reduced to hobbling around, frequently sleeping for hours, constantly popping strong pain meds, doing what I can, which isn’t much.

This is not what we were expecting, but he has handled it in the way he handles everything; calmly, with good humour, wit, and charm. He was once named in his junior school class as the person most would like to be friends with and it’s easy to see why.

Every parent of kids with additional needs will understand when I say that my youthful dreams of an exciting, adventurous life have long since been replaced by wishes of a calm existence. It’s enough of a roller coaster ride living with your children.

My husband is my own superhero and source of calm; the perfect foil to my Type-A-ness that brings me ambition but also trouble if I drift too far away. He is the touchstone that I need to remind me that just being alive and together is sometimes enough success for one day.

Add the power of your voice to #ThisIsMyChild

thisismychild-250As you know, Special Needs Jungle is delighted to be involved with the MumsNet #ThisIsMyChild campaign, reviewing its inaugural blog hop and if you blog (and if not, why not?) I do hope you will write your story and add it to the link.

The idea of the campaign is to raise awareness of what lies behind the child having a melt-down in the supermarket or having a screaming fit at the playground.  To those who’ve seen this, as MumsNet says, “Did it make you go a bit… judgypants? Did you think ‘well, that child could do with a firm hand’? Or did you think that there might be more to the situation?”

It’s happened to me, as I wrote some time ago in my Sidelong glances post and if you’re a parent of a child with SEN/Disability, 10 to 1 it’s happened to you too.

TIMC-solus

Now, no one’s perfect, let’s face it – I know I’m far from it. But if sharing your story can help make just one person pause before hoiking up those “judgypants”, it might be something you want to consider having a go at. If you don’t have a blog but have thought about it, this might be the opportunity you were waiting for. If so, Don’t forget to join MumsNetBloggers so you can enter the linky.

I’m roping Debs in to read all the linky blogs – two sets of eyes are better than one, after all – and will do a review of the ones that made the biggest impression in a week or so. We’ll be tweeting as many of them as possible too and adding some to our Facebook page, using the #ThisIsMyChild hashtag to help you find them.

Although we are lucky in that we special needs parents support each other via our blogs, Facebook, Twitter and online communities – for example, I’m a volunteer moderator at RareConnect for Son2 and my Ehlers Danlos Syndrome – it would be good if we felt more supported by the general public as well.

#Thisismychild is a great campaign and with the power of MumsNet behind it, it’s already getting lots of media coverage. Our Debs was speaking about it yesterday on Radio Kent (after 63 mins, for a limited time)

What are you waiting for?

Click here to enter your link and view this Linky Tools list…Powered by Linky Tools

NAS petition – Single point of appeal for EHC Plans

The NAS has launched a petition calling on the Government to amend the Children and Families Bill to create a single point of appeal for challenging provision in Education, Health and Care Plans.snj joined upThis change is essential if the Government are to deliver on their commitment to “ending the agonising battle many parents fight to get the support for their families, as they are forced to go from pillar to post between different authorities and agencies”.The NAS welcomes the replacement of education-only statements with joint Education, Health and Care Plans. However as currently drafted the Bill does not provide a joined up system of accountability and redress. Parents will have to go through separate appeals processes for each element of an Education, Health and Care Plan to challenge inadequate provision. They will continue to battle the system on multiple fronts.

Parents tell the NAS that social care and health complaints procedures are difficult to navigate, can take months and sometimes years to resolve disputes and are unable to offer the robust remedies currently provided by the First Tier Tribunals in relation to education statements. The solution is to enable the First Tier Tribunal to hear appeals and offer remedies for all elements of Education, Health and Care plans. Despite debates on amendments to this effect during the Commons stages of the Bill, the Government has resisted this change, claiming existing routes of redress for health and social care are sufficient. This flies in the face of parent’s own experience and the Government’s own ambition to create a joined up and family-centred SEN system.

Time is running out for the Government to deliver on their promise to end parent’s battle for support. The Children and Families Bill is expected to pass into law in early 2014. It is vital that the changes are made during the remaining stages of the Bill on the House of Lords. Take action today by signing their petition.

Please note the SEN changes introduced in the Children and Families Bill will only apply to England.

For more information please contact policy@nas.org.uk

 SNJ are supporting this petition.  The Children and Families Bill is supposed to make life less complicated for parents and having three appeals systems is in no way, by any possible definition, less complicated.  Nor is it line with the “joint” approach that the whole reform system is supposed to be about.
Sign now and show your support.

#ThisIsMyChild MumsNet Special Needs campaign

Tania writes…

MumsNet have today launched a new “myth-busting and awareness-raising” campaign called #ThisIsMyChild.

thisismychild-250It’s been launched in response to requests from MumsNetters and supported by input from some of the leading charities in the field.

Its aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act to make life easier for everyone caring for children with additional needs.

I am delighted and very excited to have been asked to support the campaign and will be picking my favourite posts from a Linky being launched on Tuesday – so standby for that.

Debs and I will  also mention some of the posts here on SNJ as the campaign progresses.

For this campaign to be a success MumsNet need it to reach far and wide, so please share as widely as possible – via Twitter (@MumsnetTowers), on Facebook , Google+ and anywhere else. You can use the HashTag #ThisIsMyChild on Twitter, Facebook & G+ too.

Already up is a Gallery, Mythbuster, Strategies and Facts and Figures.

The Mythbusters have been collated with help from campaign partners, Every Disabled Child MattersContact A Family and Mencap, and with help from the National Autistic Society.

The strategies is worth reading: I recall once, after the committal of my mother’s ashes, far from home, we went for a pub lunch and ASD Son2 was upset, refusing to eat or drink and had his head down. A woman across from us stared and tutted disapprovingly the entire time until I had finally had enough, got up and challenged her. She replied that she was actually staring at me (which she wasn’t)! Rude and a liar! She soon left. It still makes me cross to think about it, six years later.

Anyway, the campaign is definitely worth joining in with, adding your special needs blog posts to the link when it’s launched,

In case you didn’t know, MumsNet has a whole section on Special Needs with lots of information.

Of course, bloggers who write about their children with disabilities are every week trying to raise awareness, so it’s great that MumsNet is giving all those blogs a boost and helping the cause in such a high-profile way.

If you haven’t been to the MumsNet site in a while, you should pop over as it’s not just for mums of babies, but has an enormous amount of information on parenting, skills & careers (MumsNet Academy) too.

blogfest_headerWhile we’re on the subject, I’m thrilled to say I will be on one of the panels at MumsNet BlogFest joining lots of high profile speakers at the event such as Prof. Tanya Byron, one of my favourite writers, Lionel Shriver, and Louise Mensch. (I’m sitting here going ‘Lots of high profile speakers….and me.)

It takes place on Saturday November 9th. I’ll be easy to spot, probably in the wheelchair with long-suffering Debs pushing. Please say hello if you’re going – I’ll be more scared than you!

Does your child know “no means no”?

Debs writes….

I am a trainer for my local Safeguarding Children Board and it is a subject I am passionate about.  One of the people who inspires me, as a mum and and as a trainer, is Emily Martinello.  Emily is a Sexual Development Consultant in Nova Scotia, Canada and here she talks to SNJ about the importance of teaching our children to know how to say “no”.

skotan_No-sign“The worst part of my job as a Sexual Development Consultant, is that I am the bearer of bad news.  My suture is education, support, and resources, and I do my best to fix the band-aid burn.

What research shows us is that up to 80% of women and 30% of men with intellectual disabilities are sexually abused before the age of 18.  That is more than four times the rates of their typically developing peers.  What we also believe to be true is that more than half of these abuse situations are chronic, meaning by multiple people, or on multiple occasions.  There are many components contributing to this high number, and there are opportunities for learning throughout the lifespan that can hopefully reduce each one.

No means No

There’s a stage everyone seems to dread, the “nos”.  When children say “no” to everything.  I guess no one likes it because it’s annoying.  I, frankly, love it.  (Full disclaimer: I don’t have my own kids yet- so I love these “stages” more than most!)  I love it because I love that children are learning to exert their independence.  They’re learning the building blocks to consent.

I was at a dance camp a few weeks ago for children and youth with special needs, and listened to a volunteer fight the “no’s” to trying on a costume.  My “Sexual Development” brain was screaming “who cares?  It’s a costume”, but I can see where the volunteer’s helper brain was going “it’s camp, we have costumes, it’s fun!”

Luckily, I was saved by the dance teacher who said “it’s okay, she doesn’t like costumes”.  PHEW!  But how many times does this girl get her no’s rejected on a regular basis? And what is she learning each time?  I’ll tell you: that her “no” means nothing.  That she doesn’t have the right to say no to something.  And really – it’s a costume!  If she can’t say no to that and mean it, how is she going to know to say no to the big things?

Of course there’s a second part to “no”- the hearing part.  There’s a new trend in caring for children, where saying no is a no-no.  Instead, care givers are supposed to say things like “first you need to”, or “not right now”, or “gentle hands”.  The problem with this is that children aren’t hearing “no” enough in a meaningful way.

When we think about sexual development, knowing “no” is one of the most important skills we can teach.  Saying “no” to things like “do you want to clean your room?”, “can you help me out?”, or “do you want grilled cheese for lunch?” is just the beginning.  Eventually, there may be bigger “no’s”- whether it be “sex” as a relationship, or maybe it’s some building blocks to keeping children safe.  Things like “NO, you can’t come in the bathroom”, “NO, you can’t change my clothes”, “NO, I don’t want your help in the shower”.

main_okYes means Yes

There’s some good news, too!  We want children to be able to say YES!!!  There are many opportunities for healthy, loving choices to be made.  This can be things like “do you want to play blocks with me?”, “will you be my friend?” YES!  YES!  YES!  Later on, this could include saying yes to things like, “can I take you on a date sometime?”, “will you kiss me?”, “Can I see a Doctor?” YES! YES! YES! Likewise, hearing “yes” is also valuable.  YES, I want to be your friend!  YES, I want to play with you! YES, let’s go see the Doctor!

Finding opportunities for teaching yes and no are everywhere – it’s the listening to the answer that’s the hard part.  Sometimes it’s all in the way the information is presented, “are you all done?” becomes, “it’s time to clean up now”.  “Let’s go outside, okay?” becomes “we’re going to go outside!”  Be prepared, if you are the one who asks the question, you’ve got to be the one who accepts the answer.

Knowing the No

The thing is, children with special needs don’t always get the chance to really ‘know the no’.  Sure, there may be a brief stage of “no’s”, but the stage is often accompanied by a lifetime of “yes’s”.  As part of education and therapy, compliance is pretty key.  But in the real world, over-compliance is dangerous.  This raises the concern about children being liked- that being non-compliant might look like being unfriendly, unwilling, or unable.

However, typically-developing children don’t typically need to prove that they are friendly, willing or able.  At least not by being testing with compliance.  Children with special needs shouldn’t need to prove this either – in fact, I’d go on a limb and say they just shouldn’t answer that test.  If there’s someone in their life who needs the child to prove who they are, there’s the proof that they’re not welcome.

There’s also another bonus,  once a child learns that they can say “no” and mean it, they don’t need to try it out so often.  We can use the “no stage” as a platform: to listen to, honour, respect, and admire a child’s ability to be a self-advocate.  And ultimately, to set the stage for knowing themselves, No-ing themselves and no-ing others.”

You can find Emily on Facebook Sexual Development Consulting or you can ask questions here.  Emily is happy to write more posts for us regarding sexual development for our children so what would you like advice on?

Review: Let the Rest-e take the iPad strain

Tania writes

I was recently contacted by a lady asking for help publicising a new product called a Rest-e that takes the strain of holding iPads, hardback books or other mobile devices for long periods that children and adults with disabilities might find difficult.

Chime Carlin said, “My friend and I have started a new business designing, making ourselves and selling really useful products but in fabrics that attractive to the eye too. The Rest-e was our idea of a tablet stand that didn’t keep falling over when the touchscreen was used. My friend’s daughter has disability issues that make her hands tired when holding the tablet for long periods and this was our solution.

“Then we found the cable kept getting squashed which weakens the wires and then stops working so, we added a button hole which prevents the wires from being crushed. We added the loop for easy carrying and so it can be hung up on pegs when not in use. The light weight means anyone can transport it and we throw our in the car (they double as head rests as they are so comfy).”

son2-2

Chime’s email came into my in-box just at the right time, as I was looking for something for Son2 and also for myself, as we both find that our EDS gives us the very same issues. I had already tried a goose-neck stand that clamps onto nearby furniture with limited success.

Chime kindly agreed to send one for Son2 to try out and it has been a HUGE hit. It’s a pyramid shape, filled with bean-bag type beans in a hard-wearing cover, that can be custom ordered. We’ve all tried it out and the consensus is, it’s fab!

It is something that we would have bought if we’d seen it online, even if we hadn’t been sent one to try out.

son2-1

They also make a smaller size Rest-e for a charging stand for mobile phones and they make them in various colours and designs. They have a Facebook page at  www.facebook.com/readingrest

The Rest-e retails at £15 and features:

  • Ergonomic design helps reduce neck strain and awkward posture
  • Light-weight and portable, it can be effortlessly carried by children
  • Supports hands-free reading – ideal for Special Needs
  • Facilitates group-sharing activities – enabling you to maximise resources
  • Enables device usage whilst charging ensuring no  time is wasted
  • Versatile – for real books, e-books, i-pads & sheet music
  • “Rest-es” can be coordinated with your organisation’s colours
We are so delighted with the one we were sent in a jolly union flag design, that we’re planning to order more for other family members.
And, Chime, whose company is Betty-May, www.betty-may.co.uk, is offering one lucky Special Needs Jungle reader a chance to win one too. Just fill out the form below for your chance to be picked from the hat by Son2.
Because it’s the summer hols, we’re keeping the draw open until midnight on August 31st 2013 which should give anyone away chance to see the post and enter. 
Enter using the form below. Good luck!
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