Please let me come too

I stood heart in my mouth, I no longer could find the words needed to comfort him, I couldn’t make this pain go away.

I tried to be strong, really I did! But it was hard, it was incredibly hard to see him this way yet again.

As he sobbed, catching his breath through his endless stream of tears he tried to speak “Mum, please beg them to take me… please”

He would normally explode in a fit of anger, haul himself into a wall smacking his head as he screamed and used endless obscenities as he raged. Not this time, it was like he had no energy, no fight left in his body… He was broken.

“What use will it do” I asked him…

“I knew he would do this, I knew it” he sobbed as he lay in a heap on the hallway floor.

I turned away so that he wouldn’t see my own tears for I needed to be strong, strong for my child.

Two hours later my son was still laid out on the floor, red faced with bulging sore eyes. He wasn’t having a tantrum, he just laid silently as if in a deep trance.

My child had been told he wasn’t allowed on a school trip, he would be excluded on that day instead! Do you think his reaction was a bit extreme?

I don’t!

My son had been uninvited from many school trips, coincidently excluded whenever one was planned. I was in no doubt that this was just because my son has Aspergers Syndrome.

This was however a trip he had looked forward to! One they had continuously used as a reinforcement tool for gaining desired behaviour. They excluded him for two days, except one of these days feel on an inset day meaning it would consequently role over onto the next day, the day of the trip! What had he been excluded for? Something so small I can’t even remember!

It wasn’t just the missing out that hurt my child, it was every single act of rejection he was submitted to, each one breaking down his self confidence a little more.

So, why am I writing this now… Of course I mentioned it before, back when it happened, his now in a special school and enjoys many trips. However, this is not the case for every child and when I hear of another child being continuously subjected to the same treatment, it breaks my heart a little more!

The UK is fall of children stuck in pupil referral units, treated like a criminal when many just have SEN and have been failed by the system. Others are out of school because no one is willing to take them (especially when they see that exclusion record with your child’s name on it) this was the case for my child for around 6 months.

In my opinion the laws surrounding exclusion are slack. Why is it that children are excluded on trip days, given a double dose of punishment. Surly regulations should be made much tighter!

If you have a child subjected to this type of treatment then it’s time to speak up. Your not alone and if we all come together we have a much stronger chance at getting heard.

Questions & Answers

I was recently tagged by the lovely Kate over at “Kate on thin Ice” to answer 11 questions, before writing my own 11 questions and tagging some more lovely bloggers. Below are my answers to Kate’s questions

1. If you could wave a magic wand and change one thing about mums, what would it be and why? As a mother to a child on the autism spectrum as well as two other children, I’d wave my wand, in the hope of removing the ignorance towards mothers of children with autism, an ignorance that far to many of our society display today. Although I’ve become accustomed to the stares, looks of horror on the faces of my fellow shoppers, during one of Little man’s supermarket style meltdowns, to such an extent it doesn’t affect me as it once did! I’d still make it magically better if I could, especially for those parents new to this difficult, yet highly rewarding challenge of parenting a child with a hidden disability!

2. How many hours or minutes of housework do you do per day? However many time will permit! I have to admit, their father is a dab hand with the vacuum cleaner, I’m more of a sorter (you know, separating the lights and, darks for the wash, embarking on a mission to pair together socks, organising the cupboards and dealing with the bills)!

3. If you could change careers, what would you change to? Well, right now my career is taking care of my children. Little man is now in an independent special school more suited to his needs, my daughter continues to do great in school, while my youngest Harley who has just turned 2 is entertained by myself during the day. I do however volunteer helping parents of children with autism to get their child’s special educational needs met in way of a statement of SEN. I help when the LEA has turned down the request to assess or when the end of the assessment results in the failure to issue a statement and the parents are taking the route of the tribunal. The training I did was awesome and my very high pass marks were a result of my desire to help other families (especially as I’ve gone through the whole procedure with the extra addition of a disability discrimination claim I had filed against his “then”  mainstream, primary school… to which the school later backed down on, resulting in us coming to a settlement and an apology given to my son, one I had been waiting for, for what felt like forever).

Although Ive developed a strong interest to issues surrounding Education Law, and also that of child psychology and mental health, I now see myself changing directions and have considered doing something that involves me working for myself therefore giving me flexibility which I need having three children, one with additional needs! Yes, I have some ideas, though I’d rather not say anything just yet (watch this space)!

4. What is your favourite cocktail? Has to be a Mojito though it’s not often I drink, well, apart from the odd class of white here and there!

5. What is your claim to fame? Being me, surly… someone’s got to notice me sometime soon! Serious through, I do have a bit of a big mouth, so thought, why not exercise it in a productive manner! You see, I’m considering becoming the stalker of the man who lives at number 10! I feel someone needs a word with him before the country finally crumbles and disappears! Why not me? I’m sure that will do something for both our public profiles 🙂

6. What is the quirkiest object in your home? My son of course, his so very quirky but in the greatest possible way! Would I change this quirkiness? Hell no! Its part of who he is, plus I think quirky is very much all the rage at the minute!

7. Charity Shop Or Designer Boutique? As much as I love a Designer Boutique, which I normally only get to see from the outside these days…  A good Charity shop, wins every time. I love the whole excitement that comes with finding that unique item, the discovery of a beautiful find, marked up at a bargain of a prize! I go to some lovely charity shops and have been known to make a day out of it with a friend! Jumping in her car, we will drive some distance just to find them hidden little gems in tiny villages, or well sought after locations. Yes, I’ve had my fair share of magpie finds, one of my most recent, a real pair of women’s Ray bands in the children’s brick and brac box! How much?… A tiny 20p

8. How many hours of the day are you away from your own house? These days, not many! When Little man was in mainstream though I did seem to spend more time in his school then he probably did! The problem now is, you try to get the things done, that you can’t with all three at home, before you know it, its afternoon, leaving little time for the walk in the park you had planned with your toddler.

9. What is your guilty pleasure? Twitter & pinterest while sipping something chilled from the fridge and munching on a Lindor egg (you know… the red ones the size of a creme egg but with a far better centre)!

10. Retro or Modern? Both, though Retro in the home is a big hit with me right now! I love the vintage floral looks, pale pastel shades inspired from the 40s and 50s… I’m dead girlie, love shabby chick, classic and pretty vintage finds. I’m currently redecorating my bedroom, though at this moment it’s an overcrowded space, with bare walls! I want to ensure I have everything I need, to create that dreamy creation in my mind, and think I’m going to try to pin my way there on Pinterest.

11. What is the one challenge you are most proud of overcoming? This is likely to be the challenge to get my son’s special educational needs met, a statement of SEN, a place in a special school and of course a fight to prove my son was being discriminated against within his mainstream school. I hit some massive lows, cried many tears and in the earlier years of his life I even found myself on Prozac! Pre-diagnosis, I felt like I was screaming yet no one looked up. I was even taken to court for school attendance issues despite my child not sleeping of a night, having to be carried in the gate, massive meltdowns, so bad that even Supernanny could not have fixed them (she, was actually filming a family on my mothers road last summer and couldn’t get away quick enough when my Little man started throwing himself about and shouting some form of inappropriateness for the world to hear! I dare to think what she thought, though actually, now, I couldn’t give a hoot!

So here’s my 11 questions I want bloggers to answer!

1. How old was you when you gave birth to your first child & was this planned?

2. How did you feel both physically and mentally following the birth of your child, for example, how long before you felt yourself again, fitted in your old clothes, returned to work etc.?

3. Did you experience the “Baby Blues” or suffer postnatal depression? If yes, are you over this, slowly getting better, or maybe things are still quite hard?

4. What are your family values?

5. Are you a SAHM or a Working mother?

6. So, why did you start your blog?

7. Do you feel less isolated when blogging and interacting with other bloggers through social networking sites and if applicable, blogging events?

8. Are you going to Britmums Live and if yes… what are your reasons for wanting to attend? “waving hand in the air… I’ll be there”

9. As a blogger do you ever help the promotion of certain charitable organisations or engage in campaigns for a good course? If yes, what charities and why?

8. What’s the most amazing experience you and if applicable, your children, have experienced as the result of your blog?

9. Do you have a goal you want to achieve as a result of you’re blogging talent? Maybe it’s to write an E- Book, start an online business, start vlogging, or like me begin self hosting (I think I’ll be taking this leap in the early summer)?

10. Name one blogger who regularly inspires you

Finally…

11. What piece of advice would you offer to a new blogger or anyone considering starting a blog?

Now I tag

•  Mum of Three Boys
• Bluecrisps
• Him Me and Three
• Mum of One
• Romanian Mum In London
• White Lily Green
• Emma in Bromley
• Life Love and living with Boys
• Doing it all for Aleyna
• My Life My Son My Way
• The Boy and Me

The Rules:

You must post these rules.
Each person must post 11 things about herself on their blog.
Answer the questions the “tagger” listed for you in her post, and create 11 new questions for the people you tag to answer.
Choose 11 people to tag and link to them in the post.
Let each blogger know that you have tagged them.

Also please leave a comment for me after you have joined in so I can take a look at your answers.

Images via google docs

Related articles

• Mainstream And Special Needs Schools (growingupautistic.wordpress.com)
• Meme – My 2011 Highs and Lows (aspergersinfo.wordpress.com)
• Special Education v Mainstream Schooling (dderbydave.wordpress.com)
• Little man’s special school put Orchard toys to the test (aspergersinfo.wordpress.com)

Our worse ever meltdown & coping with little sleep

Image via Wikipedia

I was going through documents I have stored on my Mac and came across this. I’m unsure of the reasons I wrote it, though I think it was meant as a guest post concerning “Meltdowns and a lack of sleep” I don’t even think I sent it to whoever was meant to feature it, so I’ve decided, instead of cluttering up my Mac, I’ll share it here with my readers.

The post comes in two sections, “Worse ever Meltdown” & “How I deal with the lack of sleep”

Our Worst Ever Tantrum

I have three children, a daughter of 9 and two boys! my toddler is 2 and his brother, my eldest is 11 years of age and has a diagnosis of Aspergers (a form of autism that results in impaired communication and interaction skills) and sensory processing difficulties.

My eldest, AKA Little man, has had more meltdowns than I ever thought possible! His increased anxiety levels and inability to filter out certain sensory stimuli has made meltdowns exhausting for all.

We’ve seen it all! Hitting, swearing, kicking everything and anything, throwing objects, slamming doors, running off and non stop crying! But nothing was to prepare us for that Wednesday evening on the 22nd September 2010. My son had received a high number of exclusions from his then mainstream school. He was taught in isolation, (Kept away from other children like a monster). My child was never allowed to attend school trips or participate in activities, this was lowering his already low self-esteem and I was becoming extremely worried. That evening I received a call from the head-teacher who informed me my child was excluded for the third time that month. I was promptly reminded that the Friday was in-set day (translated that means staff training day!) So, he would be excluded for the trip. He has missed trips for as long as I can remember anyone would think we were used to it! But this one was important he was looking forward to it so, so much because they would be going by coach (transport crazy) It was left for me to break the news and his heart. He didn’t hit me, nor swear, he sat deadly quite for a minute or two, slowly absorbing my words! Then shockingly he stood up and started throwing his entire body into the wall almost knocking himself out in the process. He scratched his own arms till they bleed, he slapped himself in the face over and over again and punched himself in the head while chanting, “I just want to be normal” Some five hours later, and a smashed up bedroom, I found him laid in the middle of the room amongst his destroyed beloved model buses. His eyes were so sore and red, his breathing still heavy that he continued to catch his breath. Yes, I’ve been hit, abused or embarrassed in public. His kept me up the entire night screaming and crying, yet it was defiantly this meltdown that outweighed the rest, It is one that has stuck firmly in my mind… Because for me it was scary to see a little boy, my little boy, react in such a way he could have seriously hurt himself.

Lucky his now in a more understanding school better suited to his overall needs.

Coping with little sleep!

I remember my health visitors promise some 11 or so years ago! She looked me in the eye and said, “I promise you he will soon get into a routine… babies always do”! Yet she lied to me, because that isn’t true is it! Not all babies do! My little man is no longer a baby but a lively 11-year-old boy He has Aspergers (a form of autism) and as soon as he hit three months old, he stopped sleeping! I waited and waited for that routine to come, the one she had promised, after all she was a professional right? Well, here I am, still waiting for that so-called routine!

We all need to sleep in-order to refuel our brains and boost our energy levels. I’ve often stayed awake for nights on end (which wasn’t done by choice)! When my little man does finally sleep, I struggle! Maybe because it’s only a few hours till I should wake for it’s a school day and I fear the attendance officer getting on my back, or maybe because I’m scared I wont wake to care for the children at all. I find I’m touchy and over emotional some days, where others I’m fine, I just get on with things the best way I can! Sleep really does make everything seem better, I just wish my son would believe it and give it a go sometime! I’m no super mummy and more often than not, after a few days awake I just suddenly drop! My eye lids become so heavy as if they have weights hanging from them! Seriously I find my self sleeping as I stand, clean, bath or even board a bus… which really isn’t a great way to be!

Related articles

• Top Three Tips To Get You’re Kids To Sleep (aspergersinfo.wordpress.com)
• Christmas Meltdowns, Supermarket Style (aspergersinfo.wordpress.com)
• A meltdown free Christmas (well almost)! (aspergersinfo.wordpress.com)
• What Lack Of Sleep Can Do (teeceecounsel.wordpress.com)

A great 2011 for A boy with Asperger’s

A boy with Asperger’s 2011

At the beginning of the year I wrote a two-part post covering all the stuff that had happened during 2010 (yes, seriously this took two post and most of it was nothing but bad happenings). So, looking back through 2011 and realising just what an amazing year’s blogging I’ve had, I just had to do it all again.

So here it is, the busiest year on the blog so far, A boy with Asperger’s 2011

January: Not the best month to be honest, we finally get that all important statement of special educational needs for Little man, only toilet paper would have been worth more. Nonetheless we fight to the depths of the earth and it’s amended later in the year and thankfully contains everything he needs thanks to those all important independent assessments & reports.

February: We finally get some good news, which I document in the post, “The end of a chapter” The mainstream school in-which Little man used to attend finally holds up their hands and we get that all important apology in writing, we therefore settle on the Disability discrimination case only weeks before the tribunal hearing. Another great high to February was the invite I received from Cadbury that saw me and a friend attend an excellent Adult only event (no not in that way) we actually tried to set world records doing normal household chores with a twist (making a bed, unravelling toilet rolls and more besides). This was also the month that I got to interview Colin an adult with Asperger’s who had a very interesting message for Mr Cameron.

March: This was a terrible month, the month that saw my eldest Little man (AKA, A boy with Aspergers) get punched in the stomach by a much older youth of eighteen, while playing at the park with a friend and his mother. Little man was just ten at the time and had said “The wrong thing” to a group of older kids, you can read the post “How could that hurt my little boy” for the full story. March was also the month I shared my concerns on the pending Green paper in the post “Aspirations or clever financial alterations”

April: I’m contacted by the lovely Anna Kennedy in regards to her ‘Autism and bullying’ campaign, as a result of this little man appears in an ITV news report which I wrote about in the post “Little man’s television debut” which was perfect timing, what with it being autism awareness month. I also highlight how appearing on the television went to his head a little resulting in him asking everyone and anyone “Do you know who I am”

May: It was this month I wrote one of my favourite post to date “I’m no Vicky Pallord” I also discover that I’m nominated for a Mad blog award shortlisted in two categories, “Most inspiring blog” & “Blogger of the year”

June: Brings with it a fresh start for the Little man when the local LEA crave in before yet another tribunal, agreeing his place at his independent special school for children with autism and aspergers. This was also a really exciting month in the world of blogging, I was featured in two local papers, making front page news in “The Southlondon press” with the Headline “Mum sets blogging standard” & I was also featured in the “Newshopper” both highlighting the news that I had become a finalist in the Mad blog awards 2011. I also got to attend my first ever Cybermummy (blogging conference) and with it the blog received it’s first ever sponsor Londontown.com who paid for me to stay in a beautiful hotel on the night of the conference.

Nonetheless, although the above is all fabulously exciting, June was also a very emotional & overwhelming month, what with Little man adapting to his new routine and little sleep, it resulted in me writing this very open and honest post “falling apart”

July: This was the month I started the Santa’s little helpers feature resulting in me working with some pretty spectacular brands, we were also invited to the multimedia screening of Mr Poppers penguins in London’s , Leicester Square. Alice-Sara brings her friend who are both  excited by the odd celeb spot. In the middle of the month me and the children attend the Pandemonium festival in Northampton to celebrate the release of kung-fo panda 2 as VIP guest of Cadbury. The children get to test the new mini games, Harley becomes obsessed by the panda himself and we eat lunch next to the ambassador of china (Yer, I was praying that Little man didn’t treat the guy and his family to a demonstration of a meltdown, “Asperger’s style”)! Myself and Harley my youngest also attended the Boots bump to Baby event in London’s beautiful Haymarket hotel where Harley took a shine to the lovely Rachel Stevens and the boots clothing range (from the pic below who would think his only 18 months here). July is also the month I treat readers to an up-date on the amazing progress Little man is making at his new school.

August: A busy yet crazy month as I celebrate the publishing of my three page article in the SEN publication (please check it out by clicking HERE if you haven’t already). Myself, youngest Harley, sister and her daughter get invited to the tots event of the year, “The lollibob” where we go VIP and the kids have a blast meeting the likes of Bob the builder, Peppa pig and Ben and Holly from the Little Kingdom.

August was also the month that saw chaos unfold in the devastating London riots. I organised a Lewisham riot cleanup on twitter with the use of the hash tag #lewishamriotclean and from then on everything went a little mad, what with being interviewed for the BBC breakfast show by Gabby in the back of a taxi on the way to Lewisham following a sleepless night due to the sounds of rioters looting the supermarket directly across the road. Then as myself and Little man (yes, he cleaned Lewisham too) stood in Lewisham with a dust pan and brush waiting for fellow locals who I’d rounded up with the help of social media to join us, I’m shocked to discover the BBC are there to greet us. Yes, they interviewed me and followed my progress throughout the day, I later cringed watching myself on the 6pm news, in a report that seemed to go on for ever. My use of the quote “Lewisham is cleaner than usual” following the councils own operation seem to be something of a hit and spread across the papers and internet like wide fire! The images of Little man clearing up outside JD Sports still melt my heart and make me mighty proud.

 

August saw us working with some great brands, Micro Scooter & Meccano to name just a few. Little man also has great fun testing sensory toys this month and I try to raise awareness for child mental health by opening up and writing “Just a Little girl”

September: This is a month that holds some great memories for me, not only did myself and some of the other Mad blog award finalist find ourselves invited to TKMaxx London’s flagship store to choose evening dresses and accessories for the for the Mad blog awards ceremony but I also went on to win ‘Most inspiring blog 2011’ at the awards itself, which was held at the fabulous Talk-Talk experience centre in London’s Soho. Not only did I win, get to meet a host of other fab bloggers but I also experienced a great working relationship with my mad blog awards sponsor ‘OptiBac Probiotics‘.

With all the above going on I really don’t know how I managed to squash in one of my most popular post on the blog to date, “How well do you really know your child’s teacher”

October: was a month that saw the blog working with some pretty big brands such as Sainsburys & Argos, I make two local papers again having been interviewed by the SouthLondon Press and the Newshopper on winning a Mad blog award! Little man takes over the blog, (well, kind of, he finally says how he feels in his first interview, for the blog) where he talks about his Asperger’s, discrimination, bullying, feeling different and acceptance, click Here to read.

November: I’m delighted to become a judge at the BBC Christmas ideal home show for the face of Argos competition which was an amazing experience. I’m invited to lunch by Sainsbury’s at the BBC NEC Winter food show where I also get to watch a live Master chef cook off, I have a great time and meet some awesome people at Liberty’s London when I attend a charity event and I also start working with the wonderful ‘John Crane’ and ‘When I was a kid’ check out the post ‘Joining Forces‘!

It was in November I wrote the post “Merlin’s Magical wand helping children benefit from the magic, well that is unless they have autism” which had 2,000 hits within a few hours and is the busiest post of 2011!

December: The last month of ‘Santa’s Little helpers’ I therefore launch the ‘Santa’s Little helpers, the big christmas countdown’ we feature loads of fantastic competitions with awesome prizes up for grabs. I also get invited onboard P&O ferries to take a trip from Dover to Calais alongside the lovely “Romanian mum where we shop till we drop, and to end such a fabulous year’s blogging, I’m lucky enough to be invited by the fabulous Tots100, to it’s big Christmas party at Butlin’s Bognor Regis where myself, friend and children get to stay in the beautiful Ocean hotel, though Little man finds the change a bit hard to bear.

Wow, there it is, what a year!

There’s been some massive ups and as you can expect one or two downs (what do you expect, this isn’t a fairy tale you know!) But you have to admit, it’s a massive improvement from 2010 that sadly along with 2009 saw much stress and heartache, which just proves, you never know what’s lurking around the corner!

I really do hope that ‘A boy with Asperger’s’ has provide readers with smiles, laughs, entertainment, inspiration, awareness and more!

Merry Christmas and a happy new year to all my amazing loyal readers
We love yer!

Merlin’s Magic Wand helping children benefit from the magic, that is unless they have autism!

Image by amanky via Flickr

When you have a child on the autism spectrum life is that bit harder, no matter how much you dress it up it’s not easy! We as a family have been judged and judged again, Little man has often been left to feel his not “Normal” that he doesn’t deserve the experiences that other children have, he feels this because at the tender age of 11 his been discriminated against more times than I care to remember! 

 2009/2010 my son missed out on nearly every single school trip that his then mainstream school embanked on. Why? Well, he was either conveniently excluded on them days, not given letters, or just remained in school in the hope I’d never hear about it! Disgusting I know.

 It was the most stressful time of mine and my son’s life, we had no choice but to take the discrimination route and just as the Tribunal date neared we settled the case happy that the school had finally given up the lie! I remember my son throwing his whole self into brick walls and scratching his arms till they bleed when the head teacher called late in the evening to inform me my son was excluded the following day and would therefore miss the one trip he had so looked forward to for months! My child was labelled a liability and a health and safety risk.  

 Thank goodness for charities like Merlin’s magic wand, the charity that creates magic for disadvantaged children, especially those with a disability and young carers like my daughter. 

 He missed all his school trips but at least come the summer holidays we would have our trip to Chessington World of Adventures to look forward to! The Merlin’s entertainment group really were creating magic for children like mine. 

 Little man didn’t feel so different as he raced around one of Merlin’s attractions, smiling from ear to ear. 

 As a parent of a child who benefits from such an awesome charity I did my bit to donate and even considered over coming my fear of heights  by embarking on a sponsored skydive next year to raise some funds in the name of this awesome charity & the NAS.

 Lately I’ve been running some competitions here on the blog to win tickets to a number of Merlin’s attractions, It’s basiclly a sponsored competition isn’t it! However unlike many other companies and brands do, Merlin’s didn’t offer any compensation to the blogger, after all it’s free advertising to the brand and many bloggers spend time writing and checking each entry before drawing the winner. Many of the other bloggers I know refused to do this, they just don’t have the time to run a competition and the fact their isn’t really a thank you for doing so added to this (after all this wouldn’t happen in newspaper or magazine).

 Nonetheless, I didn’t vacillate when it came to such competitions and was happy to help, after all look how Merlin’s have helped my child and millions more like him on the autism spectrum. This was me giving them something back alongside my readers! So, why not!

 Yesterday I visited my Facebook page (A boy with Asperger’s) only to discover something that hurt and angered me!

 This is what I read…

 Dear Merlin’s Magic Wand Applicants,

 For those of you wishing to take advantage of our complimentary tickets for 2012, there has been a change in the way that Merlin’s Magic Wand will manage applications in 2012, for those families whose children are on the Autistic Spectrum or who have any Autistic related disability.

 This year (2011) Magic Wand handled over 5000 applications, nearly 50% of these were from families with children with ASD.

 Our Charity has very limited resources and funds and unfortunately we are no longer in a position to be able to manage these applications as efficiently as we wish. Therefore we have had to put in the following process in order for us to continue to work with families of Autistic children.

 Applications from individual families will no longer be accepted. You will need to contact your local National Autistic Society Branch (NAS) in order for them to apply for tickets on your behalf. If you are not a member of your local NAS, you will need to contact any other organisation that you are a member of (incl Special Needs School) that specifically handles children on the Autistic Spectrum. They will be able to submit an application on behalf of all their members.

 The NAS are aware of this new procedure and the regional offices will be asked to contact the families on their books to see if they wish to take advantage of our attractions complimentary tickets.

 We apologise for any inconvenience that this may cause, however, this change needs to be made so that we can help as many children as possible and for us to continue our promise of giving children magical experiences.

 Thank you

 Hilary Birkinshaw Charity Manager

 Nicky Elliott Applications Manager

 The Merlin Magic Wand Charity

3 MarketClose/Poole/Dorset/UK/BH15 1NQ 

Fax: +44 (0)1202 667867

 This was posted on the wall by one of the admins I have appointed on the page.

 I read this three times and was utterly disappointed to learn that basically Merlin’s our heroes were kicking us in the teeth just like so many have and will continue to when you’re a family that consist of a child with autism.

 From reading this a number of times I am in no doubt that this is yet another act of discrimination against our children! How can it be interpreted any other way when it quite clearly reads, 

“This year (2011) Magic Wand handled over 5000 applications, nearly 50% of these were from families with children with ASD.”

 Before going on to state that they will no longer accept applications from families of children with ASD directly and this must now be done via NAS or through application from a special school!

 As mentioned I fought a discrimination case and we come out the other side smiling, I’ve helped a number of families who also have children with autism who feel they are being discriminated against. 

It’s even harder when a group of children are being  singled out and treated differently than children with other types of disability especially when it is being done by a children’s charity!

Above Little man enjoying a trip to Chessington world of Adventures thanks to Merlin’s Magic Wand in 2010

Here is Merlin’s promise which I’ve taken from the Merlin’s Magic Wand Website

Magical and memorable experiences

Unfortunately, many children, through circumstances which are not of their own making, are not in a position to be able to experience many of the things that most children take for granted, including trips to theme parks and attractions. 

This may be through difficulties in the home, or maybe because they have to care for a sick parent or relative. Sadly, sometimes children suffer abuse or have serious health problems which prevent them from having a normal life. 

We hope that by making available magical and memorable experiences, at one of Merlin Group’s many and varied attractions, Merlin’s Magic Wand Children’s Charity can bring some pleasure and improvement to the lives of some of those children.

 I do wonder if Merlin’s are fully aware of the laws surrounding disability discrimination. Surly the big guys at Merlin’s run this decision past it’s legal team?

 Here’s something they should have read…

 Service providers are not allowed to discriminate unlawfully when providing goods or services to people. Discrimination when providing services means:  

• refusing to provide a service, providing a lower standard of service, offering a service on different terms than you would to other people.

 So, yet again, because you can’t see autism it makes our children less worthy of a smile?

 Has Merlin’s ever considered the fact the reason the applications sent from families of children on the autism spectrum is so high is because there are a massive number of children with autism that actually benefit from this type of help? Autism is more common now than ever yet the misunderstanding and judgemental crap is still smacking them in the face with crap such as this!

 Merlin’s what were you thinking?

 From what I understand Merlin’s Magic Wand is a charity for disadvantaged children and that’s not only those with disabilities! Example… A single Parent can apply for help from Merlin’s simply stating how disadvantaged their children are simply because she is so broke, Merlin’s will then make the decision whether to issue the tickets or not!

 The point I’m making is, our children should be allowed to enjoy the things that children are meant to enjoy without having to fight tooth and nail to do so. 

The fact that Merlin’s are stating it is only the families of children with autism who need to take this new route of action is discriminating and god dam flagitious. Our children didn’t ask to be born with autism and we as parents spend much time and energy trying to install self-confidence into our child with autism or aspergers syndrome. I tell my son he is no different from other children, he just has some extra special ways, yet his not silly he knows that the world is a harder place to live in when you have a “Label” such as his! Its imperative that children on the autism spectrum don’t get left on the sideline, but receive the same opportunities as others their age.

 Not every family of a child on the spectrum are members of the NAS and sadly this may shock you Merlin’s but do you know how hard it is to get your child into a special school? Your changes will not affect my application as my son goes to a special school but only after one hell of a battle, one that almost killed me! Now your asking parents of children like mine who haven’t been as fortunate as me to win the battle with the education system, to battle  your application process. Yes, sadly I find this barbaric and have trouble understanding how you think your actions are even justifiable? 

 Merlin’s are not saying this to the parent of a child in a wheel chair, just to the parent of a child with autism… Why? Because you can’t see autism just from looking at the child, there is no physical disability so our children are sadly pushed aside.

 I ask would Merlin’s state this about a child’s race or religion? I don’t think so!

 They have more and less stated that they hope by taking such action the application number will fall and they can help more worthy children to have fun.

 Will, I be sharing this with my 11-year-old son? No, I don’t want him to feel rejected not by a charity that he is thankful to, not to one that he trust, I wont do that.

 Since making the discovery I have visited the Merlin’s magic wand Facebook page which has a wall full of comments from parents, advocates and adults on the spectrum. Sadly I have not read any statement given from Merlin’s. I await such a statement, I would of course like to hear why? and hear it from them!

 I didn’t receive the email about the changes, I don’t know why, maybe I will in the next few days, they obviously have a number of parents to upset given they have stated that half its applicants are families of children with autism. 

 I will finish the current competition I have running solely because I have opened it and it wouldn’t be fair on those who have entered to suddenly remove it, however, I won’t be running another competition on their behalf simply because I’m not just a mother who writes a blog I’m a mother to a child on the autism spectrum who writes a blog and it would seem that right now Merlin’s couldn’t give a flying f*** about that!

So, there you have it, Merlin’s Magic wand are bringing smiles to the faces of children all over the world, that is unless they have autism!

Please leave a comment and share your views, especially if your child or loved one will be affected by the changes. Like I always say, in order to raise a subject and get heard we need to spread the word, so lets do it!

Related articles

• Autism Advantage? NO! Conor Advantage? YES! (autisminnb.blogspot.com)
• Rise in autism ‘may be linked to clever parents’ (telegraph.co.uk)
• Uncovering the mystery of the rise and rise of autism (mirror.co.uk)

My contribution to the world of SEN

A while back I came up with the idea of creating a number of information sheets, that contained information for parents regarding special educational needs (SEN). These would be first published on the blog with the option of a download via my, ‘Goggle Doc’s’. 

 Like always, I took this plan and laid it out bear, for all members of my facebook page to see! This was in the hope of gaining constructive feedback, and establishing just how many people within one group may benefit from such information! The feedback has been overwhelming, with all that responded requesting I push on a head as many are at their wit’s end.

 Bearing in-mind the, ‘Green paper’ and the impact it would have on the way an LEA statemented a child, I was unsure whether It would now be a waste of time to go ahead with such an idea. However, given the response and the fact I’m still seeing a mass of parents visiting the, ‘Boy with Asperger’s facebook page’ on a daily basis, all with the same concerns, relating to the SEN system, especially that of the statementing process, (how it works and what rights they have). I decided to go ahead! 

 Of course these documents will need a complete overhaul, once the new system comes into play, but for now, they may be very beneficial to somebody who is about to, or otherwise already on, the Special educational needs roller-coaster.

 It’s a big old jungle out there, meaning there is a huge amount of information you will require! So… this is how if decided to deliver it!

I will create three sections, these will be… section one,‘Understanding Special educational needs’ (requests, assessments, decisions). Section two, ‘Tribunal, the right to appeal’. Section three, ‘Preparation and the hearing’. Section four, ‘Maintaining a statement of SEN’(annual review, requests & decisions) Section five, ‘Disability discrimination’

 Now you know what Sections will be covered, here’s what each will contain!

 Section one, ‘Understanding Special education needs’ (request, assessments and decisions):

1. Introduction to Special educational needs (SEN)
2. Stages of SEN & Is my child receiving the right support
3. Request for a, ‘Statutory Assessment’
4. Decision to make a, ‘Statutory Assessment’ (Process & time-scales involved in carry out an assessment)
5. Decision to Statement (Delivered in three sections 1) The proposed statement, 2) Parental choice (type of school, including a break down of options) 3) The final statement.

Section two: ‘Tribunal, the right to appeal’

1. A refusal to carry out a statutory assessment
2. A refusal to issue a statement
3. Appealing the contents of a first Statement (including the school named in part 4)
4. Appealing the contents of an amended statement
5. A refusal to amend following a statutory reassessment 
6. A refusal to change the school named in part 4 of a statement
7. An LEA’s decision not to amend a statement of SEN following an annual review
8. An LEA’s Decision to cease to maintain a statement

Section Three: ‘Preparation and the hearing and decisions ’

1. Mediation 
2. Witnesses 
3. Working documents
4. Representation
5. The hearing
6. The decision

Section four: ‘Maintaining a statement’ (annual reviews, requests and decisions)

1. The LEA’s duty to deliver the contents of a statement (required steps if duty is not delivered)
2. The right to request the school named in a child’s statement 
3. Requesting a Reassessment of your child’s special educational needs
4. The Annual Review process (Including information on an interim review)
5. The Annual Review Year 9
6. Annual Review Year 10

Section five: Disability discrimination

1. Admissions
2. Every child’s right to education
3. School trips and education & additional activities (including playtimes, assembles, after school activities)
4. Unofficial exclusions
5. Exclusions
6. Alternative education
7. Permanent exclusion
8. Raising complaints
9. Claiming Disability discrimination and the Law!
10. The order of the tribunal

 Each section will come with useful links and contacts. Section one, (a) will be posted on Monday the 12 th September. This post will be copied and added to the SEN, Know how! Page (This page will list all the post already published, providing a link for easy allocation). This means you will be able to locate your desired section and its content whenever you require it. It’s a challenge to bring you, my readers, all of the above. But those that know me, even in cyber-space, will know, I love a challenge!

My plan is to cover all the above, depending on how fast I can do so, is yet to be seen. Remember the laws and procedures applying  to Special educational needs are all gearing up for a change (I will adapt this as need be, in-order to fit in with the new Education, health and Social care plans as of when it arises). As for how often I can publish each section and what it contains is random. I’m not prepared to tie myself to a certain day of the week, for one, this would be far to many weeks and at times I may decided to write two at once, or three a week, other weeks, I may have no time to write non at all. SEN is a complicated process, you really do need to be in the right frame of mind to get this out there. You should also remember I haven’t personally been through every single one of the listed above. However, I have been through many, and have read and studied a great deal in the subject. 

 Disclaimer: The information provided, has no bearing on my role as a tribunal adviser with NAS, and the advice provided is given on an independent level through my own choice to help others dealing with the listed issues and is created to form an additional feature to this blog and my facebook support page. Each post will contain a link that enables you to download as a fact-sheet via Goggle Docs. Copyright still remains the same! No one should copy or republish the information without given credit to the author and providing a Link back. If you require the use of this informational for anything but personal reasons, full permission must be sought. Please do not edit any of the wording in any of the post or the downloaded documents (these are provided for personal use only)!

Are you really brave enough to put the word Aspergers down on your job application?

The power of the internet is truly amazing, for me it’s brought information, peace, opportunities, comfort, experiences, support, education, understanding and friends. (Those and so many more!) 

 Yesterday, I got to meet one those friends in the flesh, over a fabulously delicious skinny latte, with lashings of cinnamon generously sprinkled over a layer of froth. (No, that wasn’t a snip-it from the Marks & Sparks commercial, but me really appreciating a good mug of coffee!) Thanks Neil 🙂

 Star bucks was the ideal setting to chat to a new friend, one I had been wanting to meet for sometime but life being life just made it an impossible task… Well till now! 

 I suppose to classify Neil as a “New friend” isn’t quite right! You see, I’ve known Neil for sometime now, though conversations are only ever exchanged in the land of cyber-space. Neil, an adult on the autism spectrum who was given a late diagnosis of Aspergers syndrome, is a regular contributor in discussions and a massive supporter of the support page, ‘A boy with Asperger’s’ the Facebook page in which I created some few years back as an added addition to this very blog (hence the name of course). His opinions are always given in a frank and honest manner, his certainly given some great advice to many of our members, including that of myself. To be honest Neil has provided me with a sort of insight, highlighting how things could possibly be for my own child in adult life (an important issue to which I will elaborate on soon enough)! 

 Here I was, finally about to meet Neil who yes as mentioned has Aspergers. Just, after 1.30 lunch time I arrived to found Neil awaiting my arrival at the entrance. I knew it was Neil and his profile pic on Facebook had sod all to do with it! So… What gave him away? Only the fact he checked out my footwear as I entered through the door ensuring I had no sandals upon my feet (Yes, Neil hates sandals) There was no awkwardness having only previously met in cyberspace, well… this was the case for me and Neil seemed just fine too! Having got passed the shock that was caused by the similarities of my common London girl accent to that of someone you would likely find staring in the soap ‘Eastenders’ We chatted about life in general. Honestly, Neil is a genuine guy who is extremely interesting and speaks from his heart. He says exactly how it is (Which is an aspie trait you cannot fail to appreciate). 

 Everything Neil said was of interest, I found it a privilege to have him tell me about his life on the spectrum. He put the myths to bed and although I myself  always knew it possible, it was just so good to hear that the best part of his life has been a great success! How else can you describe a good education, (through it wasn’t always easy) a happy marriage and a beautiful son. However, there was something that had never been quite right! At no fault of his own Neil has never been able to hold down a job! Why because society wont allow him that right, the basic human right to make an honest living, to be the loving husband and father who provides and I should add ‘Wants’ to provide for his family… WHY? Its simple! Neil is not seen as a) a “Team-Player, b)  a big communicator  and c) one of them (you know part of the click) Yes, that’s right, those that will a least give him a chance assume his some kind of character from the film ‘Rain man’ sitting him in the corner alone, far away from his colleagues, drawing the conclusion that it’s for the best as this is what those with aspergers want and need to be social isolated from the ‘world… Well, isn’t It! 

This alone screams out loud how little those in the work place, especially that of senior staff really know about AS!

 Neil isn’t under-qualified in-fact he proves that yes, people with AS have great minds and given they put everything into it just as one would who isn’t on the spectrum, they can go on to obtain good qualifications, even having excelled in many areas of  their learning. Is it right that many people on the autism specturm or those with learning disabilities, mental health problems, especially those who’s condition is characterised but that of a difficulty with social communication, are taught by society at large that it is at there utter best interest to go to collage and then university, for god knows how many years, to obtain a degree only to face to total disappointment on the discovery that they are completely unemployable? Even when they do get their foot in the door ready for the challenge of the world of work, a large number of employees with a disability are treated just like my friend Neil (Though you haven’t yet heard the half of it)! Note: I’m not stating those with autism or any other form of disability shouldn’t go to university, obtain a degree! Maybe one day that of my own son will, through that’s his choice and his alone! Nor am I stating that all employers treat employees who have autism/aspergers or other, in this same manner… That would mean I was writing this in a discriminating way! I acknowledge that there are many that do not discriminate and actually do take the time to get autism aware and inflict that awareness on all of its employers! But sadly the number that do not are still far to high, just ask Neil or better still,  just go back a few months when MP Philip Davis outrageously called for all disabled to work for less then the minimum wage… Something he must have unquestionably considered fair in his discriminating little brain! 

 Neil’s last job ( in IT) saw him and around approximately fifteen other employees, employed on a fixed term contract! Neil once again was sat in a corner, left to his own devices. Where was the structure? Of course there wasn’t any. As a woman who isn’t on the spectrum, though I often like to be left to my own devices, I like to know exactly what it is I’m supposed to be doing, how, when and how long for in order for me to do it and do it well, who don’t? For someone like Neil this is imperative! This didn’t happen, like many people with a social communication difficulty he didn’t feel to ask, he didn’t want to, this wasn’t the comfortable thing to do. Failing to see that In-fact Neil was human and would kind of appreciate come social interaction… No one took notice! The results… Neil’s work wasn’t at its finest (but still good I must add). 

 The very end result…

You guessed it, (If, u didn’t after such a long rant then you’re clearly not following.)  Neil’s contract came to an end as planned and just as it did for those fifteen others! Well, fair game then, a contract ending is just that, a contract ending! Where is the problem? Here’s the problem… The other fifteen, all except Neil that is, found themselves happily celebrating the fact they immediately had their contracts renewed for a much longer period of time by their once more praising boss. What a sack of crap!!! Seriously can you imagine how that must have felt? Maybe It felt something like how my own son felt when he was taught in isolation, away from others, left to his own devices, maybe it kinda resembled that same feeling like when my son was told he wouldn’t be allowed to attend educational trips or participate in activities alongside that of his peers! My point… From class room, to office, child to adult discrimination due to others inability to except the person you are, that of disability discriminate still delivers that same devastating blow! Was it Ok, after all the contract had come to a timely end? Crap! This was wrong and Neil for one knows it. Lets not forget its not his first job and likely wont be that of his last! He was told, Sorry you are not much of a team player and yes your work wasn’t always up to scratch. The fact is, having they had made the work place that bit more accessible, made adaptions allowing for his Aspergers from the word go, with the added courtesy of  some instructions, which would have been much appreciated, Neil would have produced the work expected and would likely have been a great deal happier in his working environment!

 My very last point… Promise!

 Not only did I learn from Neil that my son could possible get married, have children, ride a motorbike and hate sandals as much as him! I also learnt he could possible found himself unemployable and yet again the target of discrimination. Yes, my child may have got in to our desired school but like Neil showed me… To get into his desired job is something his yet to face! 

 Neil is looking to make a stand! His words to me, “I want to change things so children like your son don’t have to grow up and be treated in the same way!” My opinion… That was spoken with passion! Please help. I don’t often plea for your help (Ok, Ok excluding that of the Mad blog awards) but this is so very important and its life changing for him and so many others. Neil is searching for other adults both young and old who have autism or other related conditions to get in touch. He wants to collect your stories and get them heard… I guarantee that this will be a campaign he will fight to the bitter end but to do it alone just makes it harder! Neil is looking for people who feel they were discriminated against at work due to their disability, who wants change and wants it with a passion. 

Contact me here by leaving a comment here on the blog

To visit Neil’s Blog: Click HERE

Contact me on twitter: @Clairelouise82

 

Related articles

• A College Structure for Students with Asperger Syndrome (education.com)
• Special Edition – Aspergers (education.com)

When did it become OK to mock disabled children based on who they’re parents are?

Tonight I write this post about an important issue that has really been irritating me these past few weeks.

Being me, I just can’t leave it be and found myself needing to raise the issue here on the blog. 

So, what is it that’s eating me?

Well, sometime ago, last December to be precise, a certain “so called” comedian publicly made fun out of someone less fortunate than himself live on TV. Frankie Boyle went all out and shamefully made Katie price’s disabled son Harvey the butt of his incredibly vile “Jokes”

So, why have I brought it up now? 

The story has yet again been brought to the publics attention through the media as a result of Katie’s new show, ‘Katie, Sticking up for Harvey’ which has been aired on Sky living. I haven’t seen the show, unfortunately I don’t have access to the channel, however I did read a recent article at the, ‘Mail Online‘

 “Mock me all you like but leave my disabled son alone: Katie Price’s heartfelt denunciation of Frankie Boyle’s vile slur and the TV bosses who defended it.”

This was the headline that drew me to the story that I found myself reading with an open mind. 

Now, I’m not your biggest Katie fan, I don’t really watch much of her stuff unless my sister is about, not because I don’t like the woman, just because I’m not really interested In her world. However when I have seen the show and its had scenes with her son Harvey as well as her other children, she comes across as a loving mother. Now I know she’s no angel and gathering from this article she isn’t claiming to be one, yet the comments I have read from the wider public left me a little dumbfounded. It’s my opinion that many missed the point completely. It all came across as some kind of “We hate Katie Price Campaign!” 

One thing I continued to read over and over again was, “Of course Katie didn’t write this she’s to thick” Come on guys… a) does it bloody matter who wrote the article, it still clearly makes the same important points and b) have you all forgotten, the woman cannot be that “thick” she has made herself a tidy sum of money that will see her children through education and beyond. This brings me onto my next point. Sadly many comments showed a certain amount of resentment, with many asking how can she possibly understand what its like to raise a disabled child purely because she has a nanny! I’m sorry but I feel many parents of disabled children myself included, ask for the outside world to look at us without ignorance! Is Katie price exempt from this? “Stop Milking it” was another comment… “Oh god I hope that person never has to raise a disabled child, the pure cheek and ignorance of such a comment” Sadly I expect Katie expected such comments, still this doesn’t make it right. 

Although I’m aware of people having their own opinions, I found it quite shocking how some even felt it was Ok to condone Frankie Boyle’s sick remarks (to sick for me to repeat). 

Just because Katie price doesn’t have to worry about getting funding for her child’s school placement or getting the council to part with the cash for respite, doesn’t make her any less of a mother to her child, it doesn’t mean she loves him any less then you or I love our children. Most importantly It doesn’t give scum-bag comedians the right to pick on a disabled child like Harvey, surely it doesn’t right? 

To read comments stating Harvey should be hidden and it’s Katie’s own fault for having him in the lime light clearly highlights that we still have some way to go with raising autism awareness. I for one commend Katie price for standing up for her disabled child and speaking out for him! Would I have done the same? Hell yes, I’d done it in a heart beat!

As for both Fankie Boyle and the TV bosses who defended him…. You guys should be utterly & totally ashamed of yourselves! Disability discrimination shouldn’t be happening especially by those in the public eye, its nothing less then disgraceful and I don’t know how you can sleep at night!

Related articles

• Frankie Boyle is a mouse… (heatworld.com)
• Katie Price: Standing Up For Harvey – Sky Living, 9pm (mirror.co.uk)
• Katie Price challenges Frankie Boyle to meet her son Harvey (mirror.co.uk)
• Frankie Boyle’s Katie Price joke was signed off by Channel 4 chief (guardian.co.uk)
• Katie Price says Channel 4 boss showed ‘lack of judgement’ over Frankie Boyle joke (mirror.co.uk)

Holy Macaroni Its A Panda

It’s around 1 P. M Friday 27th, May and I’m applying the last coat of mascara In my desperate attempt to become something of a yummy mummy, though human will properly do just fine (no sleep the night before makes this a challenge). The plan is to make myself somewhat presentable in-order to escape this house and the housework that comes with it and instead hit the shops before my little “cherubs” return home from school! As I grab my handbag and a pair of lifesaving oversized sunnies (recommended for any tired mummy for hiding a multitude of sins ), I set off for the door where I’m greeted by our “ever so friendly postman”.

Bills, bills and more bloody bills… Hang on what’s this??

Err, I hate surprises, in my experience surprises put through my letter box are not usually the welcome type!!

I tore open the envelope and began to read… blah… blah… blah… “Holly Cow!!” I couldn’t quite believe it! I read it again, then again, then yes, you’ve guessed it… AGAIN!

My eyes start to blur, a tear drops onto the paper, closely followed by another, they rapidly increase in-till the words written within the letter are no longer recognisable.

For once these tears were not caused by sadness, but joy, relief and gratitude! Throwing my head back, I looked up above and said aloud, “Thank you god, thank you!”

My Little man had just been given a chance, a way through, a future!

This letter was from a school, not just any school but one that I have been keen for little man to attend for some time. (Keen being a slight understatement!) The school is fully independent and even better it’s an autism specific school.

Holy-Macaroni… Its so long since anything went right with little mans education that I was a little unsure how to react. Is it appropriate to give it some… “Woo-hoo get in there my son!!” (Quite literally) How about engaging in a little victory dance? One things for sure, as ecstatic as I was, something seems to be holding me back from doing either!

It’s Just a school placement right!

It’s so much more then that for us, for Little man! It’s his chance! Shamefully it’s been a hell of a long time since anyone had been willing to offer my son such a thing!

Do you know how it feels to suffer rejection over and over again? Maybe you do! But how many people can honestly say they knew that feeling at the young age of ten? I’ve watched every last inch of Little man’s self-esteem fade away, I’ve seen & wiped the tears from his eyes, I’ve spent days and nights giving him reassurance, trying to repair the damage and help him gain back his confidence… only for someone to come along and undo it all again, all them hours, days and weeks to make progress… vanished in seconds.

The worse thing of all is the questions projected at me! I’ve had to answer questions no mother would ever expect nor want to answer when their ten year old child asks, “Mum, why can’t I just be normal” or “If there is a god, why wont he help me fit in?” These are a selected few… There are sadly many more, some I find I am unable to write, by doing so I become a broken mess with questions of my own! This accompanied with his tendency to self harm by throwing himself into brick walls or his scratching his arms till they bleed is the extent of damage been done at the hands of those that should have provided an education suitable to his needs while ensuring his emotional and metal well-being was protected from harm, but instead taught him that, “it isn’t OK to be who you are!”

My son went through something I wish for no other child or adult! He was discriminated against for being the person he is, because it wasn’t what was considered “Normal”, what society expects from a child! As his mother I felt somehow responsible for this after all it was me that placed him in this mainstream primary school! I finally did remove him from at the beginning of December 2010, which felt amazing for all. Being a parent who has a legal duty to ensure their child is in school has been a nightmare for me! I have a child with social communication difficulties who developed school phobia (Yet no one told me such a thing existed) why ever not? After all this landed me in court.

The above was a situation I was placed in twice and of course this was before his behaviour became unsettled & challenging in the school environment.

It was towards the end of year three that things change! Along came a string of both unofficial exclusions (aka Illegal exclusions) and fixed period exclusions with added threats of the permanent type on a regular basis. There was even an unsuccessful push towards a pupil referral unit (PRU). I decided to get myself educated on education law… More particularly that of ‘Special educational needs‘

When your child is excluded or removed form every school trip/activity, isolated and hidden on the day of inspections, then you know there is something very wrong happening! Just before our tribunal hearing for the case of disability discrimination, I finally agreed to settle. A formal letter of apology was given to myself and Little man, review and adaption of policies was agreed, and most importantly staff training in special educational needs and discrimination would be carried out by July this year! Having removed him from the mainstream setting he has now been out of school since early December last year. Yet before this time he was only in half days taught in isolation (himself and a TA) this or exclusion meant he was educated at home more then in school. Since January he has received home tuition, on a part time basis of five hours per day. During this time and also on this very day I have been battling for amendments to be made to Little man’s final statement of SEN. This had been so badly written and lacked so much provision it wouldn’t be worth having (In other words it was no worse then not having a statement at all) Of course the LEA wouldn’t agree to the high fees of the independent school and firmly stuck to their guns, Well… they did up in-till time started running out. Having searched high and low for a state run special school over an area of around four or five boroughs, with all schools claiming they could not meet Little man’s needs. The LEAs response to the tribunal on the 5th of this month therefore stated that they are no longer in a position to oppose pt 4 of the statement, “My request for the independent school” as they were unable to secure a placement anywhere else!

Wow.. This meant that the LEA had approached all the school’s they felt suitable for little man, yet all refused… Although I wanted my Little guy at the independent school, it was still disheartening knowing no one else were willing to give him that chance

The school had assessed Little man in the library setting on the 16th and just this week he took a tour of his soon to be new school. Although he states his never going to a school again and his now really attached to his tutor, something magical happened as he liked it so much he asked, “So, when do I start?”

A slow transition at little man’s own pace is planed. This will involve his tutor attending alongside him in the beginning gradually reducing the support as his confidence grows.

I won’t lie and say I’m not scared, I’m petrified! Yet something tells me to put my fears aside because this is where it all begins, this is where it gets better! I have the pleasure of seeing my child happy as over-time he rebuilds all that’s been lost and damaged along the way, while achieving his dreams & showing everyone that never offered such chances or failed to see him as more then a child with difficulties… what they missed out on! An Amazing boy With Aspergers

Oh, in cause you’re all wondering… Did I make it to the shops? Yes, I did, though I wished I had looked in the mirror before setting off! All that crying had me mistaken as a Panda bear that or battered woman

Remember if you like the blog and think me and the little guy deserve a nice shinny award then please vote us the most inspirational blog at the ‘Mad blog awards 2011″

Blink and I’ll sleep for a week!

Life right now is nothing short of manic. There’s simply no other word to describe it!

April has been one incredibly overwhelming month and we are just past the half-way mark.

I feel I’ve been put through my paces and had every emotion in my body put to the test. Some days I’ve been in fighting mode, others I’ve been so exhausted I’ve just wanted to crawl into my bed, hide away from the world while indulging in some longed for sleep. 

With each passing day I’m one step closer to hearing my little man’s fate, and no matter how much I try to prepare myself, I somehow feel that we’re hanging from a cliff top ready to drop!

Little man currently has no school placement for the whole of our borough and those that boarder us have taken one look at my sons papers & decided that they don’t have a placement available or lack the resources needed in-order to meet his level of need. 

Each day his left without a school is one day closer to him never going back! This shameful situation has ultimately made him regress, causing his social skills to decrease, and his dislike towards school to heighten. My ten year old son is now so anxious at the prospect that he will one day be expected to step foot in side a school along side other children that he will now require a tremendous amount of support when that day comes!

Whoever said that children on the higher end of the autism spectrum, have less complex needs were delusional! 

Just because my son has a reasonably good vocabulary and met most of his milestones doesn’t make his needs any less complex. However I don’t need to go into that, I don’t have to try and prove such a fact anymore, the system finally took note, it just did so a little later then needed!

This past year or so, my family has been left dangling from a string, I often ask god when that string will break.  April has come around so quickly, this time last year we were at the beginning of the tribunal process. However this wasn’t a special educational needs appeal but sadly a disability discrimination case! At that time and for a significant time thereafter, Little man endured so much. Fixed term exclusions that subsequently occurred one after another, removal from nearly every school activity, including educational outings, school plays, Christmas assemblies , etc. He has been illegally excluded and subjected to long spurts of isolation (received 1-to-1 teaching, just him and a teaching assistant in what was known as the den), he would only attend from nine till twelfth, and was made to play in the infant playground with children of a much younger age. My little man was classified as a potential health and safety risk that was a threat to children and staff! Can you imagine how that impacted on a little boys self-esteem! In December 2010 I eventually made one of the best decisions I’ve ever made for my son, ‘ to remove him from the educational setting that was impacting hugely on his mental well-being!’  As a parent I could not stand by while he was subjected to such treatment. 

During the beginning of October 2010 at the height of the discrimination the local education authority (LEA) finally agreed to undertake a statutory assessment of Little Man’s Special educational needs that he so desperately needed! In all honesty this couldn’t have come at a more convenient time! I was quickly running out of ideas and needed my child in an educational setting with staff equipped to meet his needs. 

Believe me, I was under no illusions that this was now plain sailing… some may say I’m somewhat a pessimist but as I’ve stated once maybe twice before that I prefer the term ‘REALIST!’ And as expected the LEA didn’t wanna play fair!

In January 2011 I received the proposed statement of special educational needs but instead of providing a statement that held the potentiality to see him progress, I instead received a proposed statement that provided nothing more then, ‘GOOD OLD COMMON SENSE!’ This statement was made final in March and delivered with a covering letter explaining that the statement had only been finalised to meet time-scales and would be amended to include my suggested amendments…. YES, I’M STILL WAITING!

In February 2011 just a few days before the disability discrimination hearing we eventually came to a settlement that saw his ‘old’ primary school review its policies, train staff in disability discrimination and a formal apology was given to myself and of course little man. 

Little man is currently being educated in a library on a 1-to-1 part-time basis by a tutor his now overly attached to.

Why? Because no ‘special school‘ will offer him a place.

On the 3rd of June our appeal against parts 2, 3 and 4 of little man’s statement will be heard by the SEN first tier tribunal. I will need to prove that the one school I’ve found that can possibly meet his needs, an ‘independent special school’ should be named in part 4 of his statement. I will also need to prove that part 2 does not list all his difficulties and that part three needs amending as to provide the right provision needed for him to succeed, such as… 1-to-1 support from a learning support assistant or at least a teaching assistant, as-well as occupational (OT) and speech and language (SALT) therapy.

 

I’m thankful for the fact that I’m a trained tribunal support adviser and volunteer caseworker for the NAS. This has obviously given me a greater understanding of the SEN law and tribunal process, nevertheless emotionally it’s no easier! I’m still a parent who has had to watch her child regress. Of course I feel a certain amount of anger towards this horrid system that has allowed such a situation as ours to reach this point (let’s not forget that I’m a mother who has been taken to court twice over her child’s school attendance, no one wanting to investigate the underlying issue nor listen when I pleaded for someone/anyone to help! I guess to some prosecution was the more appealing option) However it’s this past resentment that keeps me fighting and empowers me to help others who are walking the path I’ve walked!

So here we are now in April 2011 and as mentioned it’s been incredibility pressing. I’ve had a Birthday that saw me turn twenty-nine, I’ve been busy with my volunteering duties and contracted Pneumonia which I’m only just beginning to get over! I’ve been preparing Little Man’s appeal while also going a tad insane as a result of the Easter holidays & if this wasn’t enough… MY HOUSE LOOKS LIKE IT BLEW UP!

Despite all the above there is something else that has happened these past few weeks in-which I consider to be far more significant then anything I’ve already addressed! Its something that happened within me, a realisation if you like! I’ve had my eyes opened and although I knew Little man hand significant complex needs that admittedly have been made somewhat worse due to his lack of a suitable education, I’ve got to see his difficulties and what scale these are impacting on many areas of his life. The proof that without early intervention, an understanding environment and the right support, the effect on the child with Aspergers can be detrimental. 

On the 4th and 15th of April Little man underwent two independent assessment. One was carried out at our home by a fantastic independent psychologist (EP) who had her work cut out for her, commenting right from the start that Little man was a hard child to assess! The second assessment was carried out in central London just off Harley St, but this time by an independent speech and Language therapist (SALT) who again was a pleasure to met. Both assessments were carried out for the purpose of the tribunal. I needed independent assessments in order to gain reports detailing Little mans current difficulties and suggested provision to be added to part 2 and three of his statement.

On the 4th of April I sat and watched him struggle to cope with the assessment process that was carried out by the EP, his concentration was noticeably low and he found it near on impossible to focus on anything he was given! His anxiety levels were scoring. The Ep worked so hard with him and after four long hours she managed to gather enough information to write her report. 

On Friday we hit Central London for Little mans SALT assessment but even in a different setting from the home Little man found it hard to participate. With much persistence and an offer of a chocolate egg from the therapist we eventually got some off the testing done. I had of course realised that an SALT programme would be needed, but sat there listening to him try to make sentences with the inclusion of a word given by the therapist while looking at a picture in a book. It proved that despite his vocalness, his ability to put what he sees into words is somewhat a struggle for him. His literal understanding was also very apparent on the day!

Both therapists mentioned the possibility of an underlying condition which of course was ADHD and the EP is also pretty sure his dyslexic ( however she was in agreement that his mathematical skills are great) It was also recommended by both that little man undergoes an independent occupational therapy assessment (OT) due to concerns with both his fine and gross motor skills. I’ve also stated with certain task Little Man is like an elephant playing football.

After the SALT assessment we spent the day indulging in Little mans special interest (transport) Visiting London land marks by train, tube and bus. We visited Greenwich market where Little man met a magician which bowled him over before spotting a vintage model bus which after a little begging I reluctantly brought him. We hung out at the O2, visited Canary Wholf (that he didn’t enjoy and got the message across by bending his body into a ball and screaming that the tallest building in London was falling on-top off him! Well, that’s a post for another day) We also took the clipper (fast river boat) along the River Thames. He had such a blast and he smiled almost the entire day, with not one meltdown in sight!

 As I sat on the Dock-lands light rail (Yes we commuted on many types of transport that day!) I watched him shuffle awkwardly when another child sat by. He was obvious to the battle that lie head and maybe it was better that way!   

picture of  Little Man and Mr Magic

My little man, is just that little! His a ten year old boy and it’s not to late to give him what he needs! I hope that the professionals within the LEA and those employed by such a service read this and realise the effects their decisions, treatment and all to often delays have on the child and their family as a whole. Yes it’s your job, but this is mine, “to see that my child gets what he needs, is given the same opportunities as his peers and gets the adequate education he and so many others like him are entitled to” 

“Yep, you may not like it ‘LEA’ but this mothers on a mission!!”

MASSIVE THANK YOU TO EVERYONE WHO HAS NOMINATED THE BLOG FOR A MAD 2011 BLOG AWARD. THE BLOG HAS BEEN NOMINATED IN NOT ONE BUT FOUR CATEGORIES!

SO SENDING YOU ALL A MASSIVE VIRTUAL HUG FROM MYSELF AND THE LITTLE MAN TO SAY THANK YOU, YOUR TRUELY THE MOST WONDERFUL READERS!

If you enjoy reading the blog, ‘A boy with Asperger’s’ then how about nominating us for a Mad 2011 blog award. I’m nominated in the categories most inspiring blog, best blog writer, best family blog and blogger of the year. Please visit the Mads and help me and the little man grab ourselves a fantastic award. I’m secretly  hoping to reach the final in the most inspiring category 🙂 To help me get that little bit closer click the image below. Stage 1 requires you to nominate a blogger of the year (Full ULR required… aspergersinfo.wordpress.com if you fancy  nominating me for that) Then stage two list all 15 categories, just scroll down to ‘Most inspiring blog” and enter the full url ‘aspergersinfo.wordpress.com’ Feel free to nominate the blog in as many categories you see fit… ‘I’m cheeky but keen!’

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