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Friday, 9 December 2016

SEND Stars 5

SEND STARS is the series where I introduce bloggers who have very kindly answered my nosey questions.

SEND stands for Special Educational Needs and Disabilities and all the writers who are answering my questions have SEND in common. They are STARS because they are parents or carers of, or work with, children with SEND, and they are sharing their personal stories or campaigning for change in the form of a blog.

Their blogs help others understand challenges faced by these children and in the meantime the amazing personality of each individual child is being highlighted along the way. Those with SEND in their lives tend to be very busy - extra appointments, letters to write, meetings to attend, law to learn and the rest, so it's a wonder any of them find time to write at all. I do hope you'll pop over to their blogs or leave them a comment of support below (or do both!) to thank them for being brave and sharing their stories.


Now to reveal who week 5's star is.... 



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Who are you and how old are you? 
Hi, I'm Nicki and I'm 33, almost 34! 
Who else is in your family and what are their ages?
Paul - my FiancĂ© is 34, Amber (4) and Maisie (20 months.) 
Which members of your family have SEND (Special Educational Needs and Disabilities) or additional needs, and what are those needs?
Amber has Sensory Processing Disorder  (SPD) with traits of ASD and ADHD. She also has Hypermobility and her school are now questioning Dyspraxia. My partner has learning difficulties and Dyspraxia.
Is there an official diagnosis and if so, what is it, at what age was it given and by who?
Amber's Paediatrician diagnosed SPD in October 2015, at the same appointment she also found that Amber has hyper mobile joints. Amber was just 4 when diagnosed. In terms of the ASD and ADHD we now have her school on board and her Paediatrician said that she will look at further assessments when Amber is 6. 

If no diagnosis yet, have you seen any professionals with your concerns?
In terms of ASD, and that she shows many traits of PDA I have been in touch with a professional from Autism West Midlands. 
Can you list the job roles of everyone you've been involved with on your SEND journey so far?
Health Visitor - had known Amber since a baby and we returned to the area. She referred us to OT and has done a lot of chasing up! 
GP - our GP has experience with ASD and SPD. One of her own children has Asperger's Syndrome.
Family Support Worker - started home visits in Sept '15. Great support offering strategies to support Amber at home. Discharged in Sept '16 - which I'm sad about as children's centres have had their funding cut. 
Are your children in school (if so, what type of school) or home educated?
Mainstream first school. 
Very lucky to have such a great SEND team the school's Inclusion Manager is amazing.

What would you like others outside the SEND community to know about your child's condition?
Children with SPD can be both sensory seeker and sensory avoiders - for example my daughter doesn't like unexpected loud noises but she will create a lot of noise herself, often to drown out the noises - such as the hoover. 
Children with SPD are not 'spoilt' or 'naughty' what looks like a 'tantrum' will mostly be caused by a 'sensory overload,' and this is very common in busy public places - such as the supermarket. 
Tell us a fact or funny story about you or your life which is totally unrelated to SEND.....
Funny story: 
My parents actually joked about naming me 'Leanne' Then my name would have been: 
Leanne Perrins! 
I am not related to the Lea & Perrins Worcestershire Sauce company !
Fact: I have just found out today that I've been selected as one of the admins for a local mums network to where I live which has 4,500 members! I'm over the moon! 
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Nicki's blog is Sensory Sensitive Mummy, at www.sensorysensitivemummy2.wordpress.com 



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Thursday, 8 December 2016

Could you help bring the Jumblies to Life?

Time to spread some festive cheer and help, and see if anyone would be interested in supporting this lovely venture - hopefully an amazing performance in 2017 by 18-25 year olds with complex learning disabilities, special needs and communication difficulties. Read on to find out more about it and see what you can do - there's not long to go to help them hit their target, anything at all you can give would be much appreciated I'm sure. 

Please also share the post if you can - there could be some other interested backers out there who just haven't yet heard about this project. Now I'll hand you over to Nick from St.John's School and College to explain more. Thank you.


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As a fundraiser I’ve helped bring some wonderful and hugely beneficial projects to life; from state of the art immersive theatres to seemingly impossible to run social enterprises. It’s a tough old job but means once in a while you come across a project so interesting, so undeniably inspiring that you feel a real sense of pride when you start bringing money in for it.

Right now that project is the brain child of SEN provider St. John’s School & College and digital performance company Spectral Spaces, and it’s called The Jumblies Project.

PROJECT

The Jumblies is a 6 stanza poem written by English artist, poet, illustrator and author, Edward Lear in 1871. Lear is best known for the use of literary nonsense in his writing, which soon becomes clear when but a few lines into the poem the fictional, and presumably very tiny, people called the Jumblies take to sea in a sieve on an adventure!

I won’t reveal too many spoilers but I can assure you it is imaginative, moving, entertaining and well worth reading.

This bizarre and amusing Georgian classic will be adapted by learning disabled pupils of St. John’s with the support of Spectral Spaces and performed at the Brighton Fringe Festival and Brighton Digital Festival in 2017. However unlike your typical, perhaps on occasion dull, school or college performances The Jumblies Project goes a few steps further. The performances will be enhanced and adapted to one of ‘sensory room-esque’ quality with an interactive app for the audience, OptiMusic light beams, movement triggered soundtrack, interactive walls, interactive floor, scent machine and lots much more!

It will take a good 18 weeks of hard work and preparation but most importantly be designed, created, produced, written and performed by 18-25 year olds with complex learning disabilities, special needs and communication difficulties.

The Jumblies Project is an opportunity for our young people to show everyone out there that no matter your difficulties we are all creative, passionate, talented people and are more than capable of doing something to make our mark on the world. This is not just about putting on a performance unlike any other but about inspiring other young people and showing communities that no one is solely defined by a diagnoses and heck… why not go to sea in sieve (at least metaphorically.)

The project not only spreads a message of inclusivity in the arts, which is one of the hardest industries for any person to get a break in, but has core benefits for the young people involved. It promotes confidence, progresses their education, reduces challenging behaviour, lets them experience something new and perhaps most importantly, shows them that their efforts are to be celebrated and applauded, literally.

HOW YOU CAN HELP

Sadly nothing in life is free and this dream, from start to finish, costs £5,400 to become a reality.

So, like any good fundraiser who’s been inspired by an amazing idea to help amazing people, I wondered if you would be as amazed and moved too.

In a risky move, that I’m hoping will make and not break this project, I have turned to conquer the tricky beast that is crowd funding. This, in a nutshell, gives anyone who is interested the chance to contribute financially and help bring The Jumblies to life. It seemed only fitting that a project aiming to spread a message of inclusion and equality should give people the chance to be a part of it.

Using Neighbourly, a crowd funding site targeted at businesses and individuals, we have summarised the project, explaining what we are hoping achieve and that the money, although significant, will be worth every penny.

There is also a rather enjoyable video that inspired the project and features St. John’s learners, St. John’s ICT Coordinator Dan Axson and Louis, Mark & Matt of Spectral Spaces giving a taster of what the performance would be like.

We are hoping people will make donations of whatever they can spare or at least share the page on their Facebook, Twitter and LinkedIn accounts so even if you cannot donate you increase the chance of it being seen by someone who can.

We have already sourced £1,000 from an extremely generous charitable trust but there is a long way to go and not much time in which to do it.

So please click the link, be inspired, be part of something and help the 100+ pupils of a small learning disability college make an enormous difference to their own lives and hopefully the lives of so many others.

The Jumblies Project on Neighbourly: https://www.neighbourly.com/project/57ff9770c7ac8806c4fdbbc5/feed




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Wednesday, 7 December 2016

Winter Wonderland at Hyde Park (review)

If you're trying to decide whether Winter Wonderland at Hyde Park in London is worth a visit, then I'd totally say yes! After four years of trying to meet up at this annual festive event with my blogging friend Steph (who blogs at Was This In The Plan?), we finally made it this year and I LOVED it!


Hyde Park Winter Wonderland
Hyde Park is pretty easy to get to in London, with lots of tube and bus links. This is the scene which greeted us at the North entrance - so many more rides and stalls as you wander further in though. We were amazed by how big the whole site was - you could easily get lost in there after a mulled wine or two we reckon! That's where the Winter Wonderland app comes in handy - there's a map on it, as well as times of shows and lots of other useful information. My top tip would be to go for opening time, preferably on a school day! It was so nice and quiet, and even by 2pm it hadn't started to feel crowded. We've heard reports that it can be packed at evenings and weekends though - fine for older children but not much fun for the young ones when it gets like that I suspect.

We headed into the Magical Ice Kingdom first of all, and we were amazed by all the ice sculptures. You can see more of them in my video clip at the end; they are very impressive.

Magical Ice Kingdom boat sculpture
Magical Ice Kingdom sculptureTowards the end there is even an ice slide which you can take a ride on, and a throne to sit on - how could we resist?! It was cold in there though - I'd recommend thermal gloves if you like to linger and look at all the detail.

Ice throne at Winter Wonderland

There are plenty of places to get food and drink, from sausages to garlic bread and pretzels to crepes. I had a delicious burger for lunch washed down with another mulled wine, and followed it up with a chocolate fruit kebab for dessert; fruit = healthy, right?!


Chocolate kebab at Winter Wonderland

After lunch we headed off to the big top to watch a performance by Zippos Circus. Acts included a roller skater on a trapeze, a juggler, a magician, acrobats and a particularly entertaining fireman on a ladder - you'll have to watch my video to see what I mean...


Fireman at Zippos Circus

The circus show lasted about 45 minutes and was the perfect combination of skill and slapstick - something to lift the spirits if the mulled wine hasn't already done that job....
Two Stephs at Zippos Circus
The two Stephs at Zippos Circus Big Top!
Winter Wonderland is totally free to enter and wander about but the key attractions do of course cost money (well seriously, they're not going to run it for free, are they?!). The picture below gives you an idea of the main event charges (you may have to zoom in - or you can visit the website, hydeparkwinterwonderland.com).


Winter Wonderland prices

There's a big ice skating rink and big German style bier tents too, and there are dozens of rides ranging from teacups and swing seats, to the mega Munich looper roller coaster and of course the big wheel. 


Swing seat at Winter Wonderland

I took so many photos that I couldn't possibly fit them all into a blog post - so please do see my video below. It's short but should give you a flavour of what's on offer. Look out for the super high drop ride, the giant moving man with bird, the clever juggler at the circus who only dropped his pieces once or twice, and me showing Steph how to ride an ice slide with style...



As I mentioned above, it's free to enter Winter Wonderland; we were gifted tickets for two of the main attractions in order to give our honest feedback.

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Tuesday, 6 December 2016

This is our PDA Story (Week 21)

Onto week 21 now of my 'This Is Our PDA Story' series, where I've been publishing guest posts all about living with Pathological Demand Avoidance (PDA). 

PDA is a type of Autism Spectrum Disorder which is characterised by high anxiety levels and avoidance of everyday demands for that reason. There's more information on my page 'What is PDA?'. 
The writer this week is struggling with the challenge that is mainstream school. So many children with PDA do not thrive in an environment which caters for the masses, and as parents we are often left wondering what the alternative might be.

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Today is the first day of a new approach…(yeah right, how many times have we all said that)….but…today feels different.

I've decided I am not coping as well as I feel I should cope as an Autism Mum. I feel I am failing my son and his potential to flourish in this painful world he finds himself in. Not because I am not strong, but because I can see things are simply not working and this cannot be sustained.

This week I ordered a ridiculously expensive kids nutritional chocolate powder endorsed by Elle McPherson and booking a Dance Studio for 1 hour for my Son, so he can Dance, Dance and Dance, make those awesome shapes…on his own…no one watching, except me.

It’s also time to start accepting my son’s PDA and really letting go of ANY expectation. Expectations for him to come to the dance studio for starters… I am prepared to lose that £40.

My nearly 9 year old son is bright, alert, astute, funny, annoying, aggressive, loud, sweet, loving, sensitive, rude, imaginative, inventive, adventurous, scared, daring, home loving, obstinate, but above all, he is…my son.

If I don’t act soon, he will not surface out of this unacceptable educational system, which is not in anyway shape or form designed for kids with PDA.

My son is lucky though. Although expelled from his former mainstream school aged 7, he has been saved for now by an inclusive mainstream school that aimed to reintegrate him into the classroom. After 6 months we have realised that this won’t happen, and while we figure things out he is being ‘educated’ in a Nurture room, with 2 SEN TAs pretty much on his own. Occasionally he socialises with his peers. The school is doing an amazing job, but it’s not enough. We all know that he deserves more, but..

Yes the big But…a specialist setting is what is needed here, a school that caters for the Autistic child. My son isn’t classically autistic though, he is bright beyond his years. He has no problem with eye contact, and can discuss anything from the origins of the universe to matters of the heart, as long it can relate to a Super Mario Brothers video game. But it’s his PDA that stops him from being able to be in a school environment, or an extra curriculum class, stops him from enjoying a play date etc… Something inevitably triggers him into being a foulmouthed, aggressive, stubborn, uncontrollable health and safety issue, a risk to other children, teachers and himself. Tell me…where is the educational setting that will be able to provide for someone like him five days a week, 9-3, so that the parents can get on with providing for their family? Instead many parents just survive from day to day, often finding blame with themselves…because no doubt the inner voice can be heard to be saying…’you must be doing something wrong…otherwise things would be better…’

So…today I start thinking outside the box…I stop blaming myself, I relax, I let go, I take him to a dance studio with mirrors and a piano and a sound system and I let him move….and we’ll take it from there…


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For more information about PDA, please visit the PDA Society website at www.pdasociety.org.uk. They are also publishing a series of case studies - as you can see from my blog, with 21 weeks of material, this condition is more common than people think - there are more than just a handful of families living with PDA in this country.

If you click on the links below they will take you back to previous weeks of 'This is Our PDA story' on my blog where you can see the other examples of life with PDA.























   Week 1  



Cuddle Fairy

One Messy Mama

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