Tag Archives: disability

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

23 Nov
Day 255: Magic Wand

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!

Things the whole family can do this half term

14 Oct
Summary: London Transport Museum Author:SolGru...

Image via Wikipedia

Things to do this half term to interest all the family including the child with Aspergers.

 It’s hard when half-term comes around and your left to entertain three children one on the autism spectrum who isn’t easily pleased.

 I give it my all when taking all three of the children out together. I find that most of my problems come from Little man and his sister, Its like embanking on a world war two mission. 

 However, regardless of how many times I’ve heard myself state, “Never Again”

There’s always a next time.

 When taking three children out anywhere, great organisation is required! When one of them children are one the autism spectrum, this level of preparation goes to a whole new level.

 I admit, I’m the kind of girl who likes to do things on a whim, but since becoming little man’s mother this is damn right impossible!

 Here I have put together a list displaying a number of places we have visited.

 LEGOLAND

 Little man loves Lego (he builds buses out the stuff) he therefore loves visiting a land full of it. Alice my daughter is also very keen and always enjoys a day visiting the attraction.

Legoland is part of the Merlin’s entertainment chain. If your child is on the spectrum or has any other form of disability or is in some way considered to be disadvantaged, you can apply to ‘Merlin’s magical wand’ who provide family days out to one of their attractions (some being Legoland, Chessington and Thorpe Park).  Tickets are for all the family (only one application can be made per year) Merlin’s can also help families cover travel cost (including mileage) and occasional provide funds towards over night accommodation in special circumstances.

 If you can prove your child is notable to sustained long queues, they will receive a wrist band entitling them to enter via the exist point of each ride (note the new system does mean that on certain rides a certain time between rides needs to have passed before accessing). Photo id and proof of disability is needed to gain the wrist band. 

 We will in deed be returning to Lego land this half-term! Staff are friendly and most seem to have some idea when it comes to hidden disabilities (which is always a positive in my book)! 

London Transport Museum

(Covent Garden)

 A firm favourite with the little guy not so much with the siblings (the excitement wears of on the second or third visit)! However daughter is happy to take the tour, again…….. Given we hit the Covent garden market place following the museum with the opportunity to indulge in an ice cream (even in October)!

 Yes, we have been to the above thousands of times ( exaggeration, though it tends feel this way) but with kids entering free and adults paying £10 (you can normally find many offers at your local train station or online) it’s not expensive. However stay clear of the dinning area (Money, money, money… If you want money left, you will grab a Mac ds on your way home! Please take my word for it)! 

The transport Museum is very autism friendly so there is no worries on that front. 

Crystal Place Park. 

 Just up the road from where we live, Crystal place park host the ruins of the old palace. 

There is a large boating lake and lots of sculptures of  dinosaurs dotted all over the place, (lots of children on the spectrum love this feature) and a giant maze which little man is terrified off. There is also a big swing park with some pretty funky play equipment, a mini petting zoo (not open all year round) plus the famous Crystal palace sports ground

 The park has no entrance cost (small cost for the zoo + boating lake) Little man seems to love it as well as my other two children, (Alice and Little Harley). There is lots of space to just ran about in, which is a great way to get little man tired ( following a trip to the park seems to be the only time he sleeps of a night)

Greenwich Park

 We used to live in Blackheath which host one of the many access points to the park. Currently there are some works commencing as part of the Olympics 2012 but there’s still plenty to do. 

Sometimes during half-terms and summer holidays there is a train that can take you to one end of the park to the other (note it’s a big park) Little man is train bonkers and this is his best part of the day. There are also a number of deer kept in the park and squirrels will take nuts gently from your fingers if you offer. The park has a huge lake where peddle boats are rented out cheaply plus a large play area that doesn’t seem to get to busy since the works started out (which is better for us given little man’s social skill difficulties). There is also a massive sand pit great for sensory play (not to great if your child can’t stand the stuff due to the fact he is tactile defensive… Yep that’s little man, though this only applies to him sitting or standing in the pit).

 The park also offers a great view-point of London and appeared in the film ‘Layer Cake’

The park is famous for its time keeping (yep, it’s of course the home to Greenwich Meantime) and just outside the gates you are greeted with the lovely Greenwich Market! Little man loves this place as there is a stall which sells a massive selection of vintage model buses and vricals.

The park is free but some of it’s attractions (train and boating may require a small fee depending on the time of year). 

The Science Museum

London

 Free entry and granteed to provide a great day out. Lots of things to discover with many interactive displays for the kids to engage in. Both Little man and Alice love the Science Museum though little Harley is still a tad young to experience the full benefits of such a place. 

One of little mans favorite features is the simulators. Yes, I’ve got to admit, they are mine too. 

Please note these normally require a payable fee to ride.   

 You will also find a pretty awesome gift shop which isn’t overly high in it’s pricing. Little man brought a lava lamp on his last visit (with his tutor).

NEW CHELSEA F.C. MUSEUM 

 We haven’t visited the museum as yet which is located on site behind the legendary football stadium at Stamford Bridge. It’s reported to be a massive 670sqm and offers state of the art technology to create a totally awesome experience. Visitors can experience a mix of audio displays through to interactive tours with 16 different zone all together there is something for all football fans. Little man doesn’t play footie but his grown up with a family full of  Chelsea supporters (count me out, I only support Frank lampard *giggle*) It’s my side of the family that are Chelsea nuts and it’s my father (Little man’s grandfather) who will be taking little man this half term. My brother and nephew will also join them much to their delight. This one isn’t for me and Alice and we will do something else on that day. Not sure the youngest will get anything out of it given his only 22 months old so guess he will join his mummy and big sister on a shopping trip (that’s my kind of day out)

 We will let you know what little man thinks on his return from the Chelsea Museum. 

Check out the cool video below to give you an insight into what It’s all about.

As easy as child’s play

27 Sep

google image

Play, A god given right for all children!

 Its importance is critical to the development of every child regardless of, Class, age, race, gender or ability!

 With every game of peek a boo, every story told and building block added to a carefully constructed tower, your child learns something new & exciting.

 A child may not speak or be able to hear, he may not walk, they may be even confined to a wheelchair, nonetheless this doesn’t mean the child will benefit from play any-less, regardless of a child’s disability, they should be encouraged in play, and will enjoy it like any other child.

 As a mother to three children, I really love playing and interacting with my children, whether its make-believe, a board game or something else all together! Though yes, I do admit it’s not always easy to find the time, yet its something I consider important so try to make it a priority (something we engage in a few times a week minimum).

 As most regular readers will know, my eldest son has Aspergers syndrome which forms part of the autism spectrum. At almost 11 years old, Little man was my first-born, when I was at the tender age of 18. I noticed pretty early on in little mans life that his play style was somewhat different from what I considered to be typical play for a child his age.

 My daughter didn’t come into our lives for a further two and a bit years, meaning I had plenty of one on one time with my developing baby. Games such as Peek a Boo or sing alongs didn’t give of that WOW factor for Little man, instead they sent him into a howling frenzy. 

 Regardless of the above I persisted in my quest, a road of discovery, encouraging my child to engage in interactive play. I knew he got enjoyment from playing alone, I didn’t discourage, though I didn’t reframe from interactive play either! I’m convinced this has been of some benefit to my child now his older. 

 Play helps feed a child’s imagination helping it grow, it allows a child to use creativity while helping them to connect to their surroundings and adapt play to their environment. I believe that play can help a child learn certain roles and requirements while aiding the development of dexterity, physical, cognitive strength.

When your child is on the autism spectrum, play may not be what you typically expect it to be!

 Yes, I learnt the hard way, don’t we all? 

 I learnt that my child didn’t actually require all the latest toys that the boy next door was playing with. My expectations both before and after Little man was born were unrealistic, I had naively assumed that all children played the same way! Play was play, nothing more, nothing less, It all amounted to the same thing! God I had a shock awaiting me and a hell of a lot to learn.

I had no intention on lying to my friends and family when I announced that Little man loved Bob the builder only to end up with a house full of Bob merchandise come Christmas! In some respects I think I half convinced myself it was the case, well he had at least glanced in the direction of the tool kit I had brought him!  It wasn’t just Bob the builder, I was a mother moving with the times & quite honestly the latest craze that I quite often learnt about from the gloating neighbour who would quite often proudly inform me about the latest Spiderman bike her son was now whizzing around on! The next week Little man would have that very same bike, though it remained in the cupboard by the front door only ever seeing the light of day once, twice if you include the day I awkwardly tried to get it home on the bus. This was one of hundreds of toys that were both a waste of time and yes money!

 Looking back as I write this I get a glimpse of how bloody crazy I was! Yes, total denial sweep through me.

 It was only once I had taken a few steps back and observed the situation that both myself and especially little man began to benefit.

 I note… No, Little man did not like playing with Cars (though he quite does today) he did however love spinning the wheels over and over again! I decided that actually that was OK.

 I note… No, Little man did not love Bob the builder (though I only wish I had kept all that merchandise as my youngest is Bob gaga) though he did love Thomas the tank. I decided again, that was fine!

  I discovered that between the ages of 2 and 7 Little man only ever really played with train sets and transport mats despite his bedroom now looking like the Disney store!

 Finally I excepted this!

 I stopped focusing on that Little boy next door, therefore letting go of that, “My child should be playing with that toy” scenario! I focused on the Little man instead and what I saw was no longer what I felt I needed to see through my own stereotypical rigidness, I now saw Little man for the child he actually was! I successfully learnt my first very valuable lesson about play! 

 “Play is unique there is no right or wrong way of doing it”! 

 By stepping into Little man’s world while taking small steps to engage with him in this child lead play I noticed he slowly became more interactive, wanting me to take an interest in his games. 

 Yes, all along I just needed to go with the flow (so to speak) I needed to embrace and celebrate his interest, a massive milestone

 Oh, and did I mention that big credit should be given to my wonderful daughter? Siblings can actually be a massive source of learning  for the child on the spectrum, Alice-Sara certainly was!

 Alice-Sara was that child who played like I also assumed all children did! She played the way I always expected the Little guy would!

 Through sheer willingness and determination his younger sibling did something wonderful without really knowing it! She introduced her older brother to role-play! She taught him the value of this type of play and helped him develop the tools needed to engage in it!

 google image

 It is this aspect of play that I firmly believe is the true instrument needed for a child with Aspergers to progress.

 I don’t know if Alice-Sara just longed for this type of interactive play from her older brother, but as a small child she fought to get it, and she did!

 OK, it isn’t perfect, as much as he is able to engage in such play it is still largely ritualistic and he can become overly controlling often using his younger sibling as a play object, yet his come a long way!

 However ritualistic and Un-spontaneous his play maybe, his sister has successfully taught him how to play schools (a game he still plays today, though it always involves a school “bus”) he also loves playing shop keepers and hospitals (if his the ambulance driver of course)! 

This variety of play offers so much to the child on the spectrum. The child will learn important social interaction skills, and a number of other important life skills they will acquire in life. 

 I’ve seen my Little man go from the child who really did prefer the box as opposed to the toy that came in it at Christmas (mainly due to what I was giving him) to a child who now enjoys play so much more and through he still does it alone, he is much more willing to play with his peers even if they don’t always oblige to him joining in. 

 Yes, he still has them “odd” items on his Birthday and Christmas wish list; Batteries padlocks, neon electric fly zapping lights; and 20 cans of DR pepper to name a few; yet he also loves, computers, lego, model buses and trains, bikes, scooters, board games and magic tricks. 

 Recently I saw a worrying statement 

“As easy as child’s play don’t apply to children with autism”

 That is bum fluff!”

 “Just because it isn’t typical doesn’t mean it isn’t magical!” 

I learnt that the hard way, I hope you don’t!

Section one, Part (1) Introduction to special educational needs

13 Sep

  Introduction to Special educational needs

 So, what exactly is the definition of Special educational needs?

A child is only considered to have special educational needs, (SEN) if they have a learning difficulty that requires a greater level of support than his or her peers. This would therefore require educational provision to be made for the child.

 A child who has a disability that prevents them from fully accessing the same educational facilities as his or her peers, would also be considered to have SEN. This also counts for children who have social and emotional difficulties, or conditions that affect a child’s mental state, though this child would only be seen as having SEN providing such a condition hinders them from fully accessing educational facilities, therefore requiring provision that is either extra or different from what the school gives through its usual differentiated teaching.

 Children that are younger than the compulsory school age, can also be considered as having SEN, if it is determined early on, that such child could not fully access the same educational facilities as his or her peers, or they have a learning diffculty that will certainly require special educational provision that is extra or different to the provision given to his or her peers, as and when the child was to start full-time education.

Section 312 of the education act 1996, stats, Special educational provision means:

“a) For children of two or over, educational provision which is additional to, or otherwise different form, the educational provision made generally for children of their age in schools maintained by the LEA, other than special schools, in the area.

b) For children under two, educational provision of any kind.”

Definitions in the 1998 Children Act (section 17 [11], Children Act 1989) defines a disability to be…

“A child is disabled if he is blind, deaf or dump or suffers from a mental disorder of any kind or is substantially and permanently handicapped by illness, injury or congenital deformity or such other disability as may be described.”

 Autism and misconceptions

 It is often the case that parents of children whom have been diagnosed as having an autism spectrum condition assume that their child’s educational setting will naturally make adjustments and accommodations for the child! Most assume that a child with autism is automatically considered to have special educational needs, therefore requiring additional provision to be made. Again isn’t actually the case at all. A formal diagnosis of autism is just that, “A diagnosis of autism” nothing more, nothing less! Such a diagnosis does not entitle a child to receive additional educational provision (through the school must make reasonable adjustment for any child with a disability, this is a different thing all together).

 Although a child with a diagnosis of an autism spectrum disorder is classified as having a, ‘disability’ this is not a ‘learning difficulty’. Whether the child has a learning difficulty is usually determined by the school or local authority (LEA) dependent of the child’s age.

 Common confusion

 It should be noted that despite a child’s autism, they may well succeed academically, requiring little if any extra provision at all. This is more commonly the case for children diagnosed with High functioning autism or Aspergers syndromeHowever it is extremely important to remember that regardless of a child with autism high academic progress, who may have even received the top grades in their class, can still be considered and seen as having special educational needs. As mentioned before, if such a condition as autism affects areas of the child’s social and emotional functioning while at school, hindering the way they access education could result in a child being placed on the special educational needs register. Behavioural difficulties, exclusions, misunderstandings, due to poor social interaction and communication, increased anxiety and school refusal are all factors that should be taken into account when considering if a child has SEN. Sadly it is often the case that LEAs refusal to carry our a statutory assessment or even issue a statement as they claim the child does well academically therefore not requiring additional provision to be made. This is not true and certainly isn’t a good enough reason not to make educational provision for such a child.

 Lastly it is important to remember that just because a child doesn’t speak English as a first language doesn’t  mean they have SEN.

 Coming up next time… Section one understanding special educational needs, part two, ‘The stages of SEN and is my child receiving the right type/amount of support?’

All information has been created to help others for their own personal use, this advice is independent and is given by myself a lone (No 3rd party participated was used throughout). Please do not use article for anything other than personal use, nor edit the information in any way. All published articles, throughout this site remain property of the author and this blog. Alway seek permission before using any post for anything other than described above. 

Thank you 

Creator

Claire-Louise

To download or see the rest of the fact-sheets via Google Doc’s Click HERE

Bopping at the Lollibop

11 Aug

Friday the 5th August was certainly a day to remember for both myself and that of my youngest, 20 month old, ‘Harley’ aka little, ‘H’ 

I had been very fortunate to obtain a, “Press pass ” entitling a family of four free  VIP access into the Lollibop (the three-day festival designed especially for tiny-weeny partygoers) It was noted that the festival was best suited to children aged ten and under, Little man is ten, eleven in October, looking at the programme, I didn’t think it would appeal to him… I was right! It didn’t! Little man decided to spend the day with dad, over indulging in his, “Special interest… Buses” My eight year old daughter had already made plans to go on a trip to the seaside with her friend (I know, better social life than me)! So, It was just me and my very cheeky toddler, ‘H’. Knowing I had access for up to 4 people, I decided to invite my younger sister, ‘Rachel’ and her daughter, “Amy” a 18 month old crazed, “Waybuloo fan” 

Finally the day had arrived, I don’t know who was more excited, Me or the children? Yet the morning wasn’t one of my best! Everything that could possibly go wrong… did! Harley thought it was a great time to show of his talent, “Having a tantrum” and as for me, I was putting washing powder in the microwave and milk in the washing machine. I hadn’t hardly slept a wink the night before and this had nothing to do with Little man! I had struggled with the hellish heat and found it impossible to get comfortable. This resulted in me walking around like a zombie the best part of the morning. Finally having left the house I met up with my little sister and niece and we headed to the train station. Once there I discovered I had forgotten Harley’s rains resulting in a crazy dash around Oxford Street in a bid to purchase my third pair of rains this year (forgetful being my second middle name, Late my first). We finally reached Regents park, the location for the Lollibop. Harley had cried the whole way there. I was at my wit’s end, praying the day would be worth the stress of that horrid morning.

It wasn’t particularly hard to locate the venue once of the tube at Regents Park. It was pretty well sign-posted and only a two-minute walk just across the road. However, we should have entered via the press tent, which I just couldn’t locate. We were thankfully allowed through the main gate where we were directed to the press area to obtain wristbands and passes. My first impressions were good ones! Just through the main gate to the right you would find, “Lollibop’s transport for kids” (Smart trike with parent handle) were available to borrow for the deterioration of your day, I’m unsure if there was charge for the service, but I don’t think so. The area looked amazing, with lots going on. The queues didn’t look that long and the smiles displayed on the face of almost every child said it all! 

On the way to the press tent, we bumped into some really funky characters, Our first of the day. Harley looked at this two funky little oldies with nothing but confusion, Me I thought they were pretty cool. Harley was here to see someone with a little more popularity, “Bob the Builder” would be his highlight of the day, what with him being his biggest fan. Having made it to the press tent, I met the very lovely Jen and her team. After a warm friendly welcome, a cold drink and a nappy change, we were off. 

Leaving the pushchairs safely in the VIP tent, we put this pair of over excited toddlers on their rains (yes, new rains £12 Oxford St) and off we went. 

Bob the Builder was due to meet and greet in the 3 Ft and under area of the festival, in around 20 minutes time. So, with this in mind we decided to stay close by, opting to set the kids free in the soft play area. What is it with kids and balls? Seriously Little H is ball pit crazy. He loved diving in and out of the balls  and Amy seemed to enjoy it too… Well, that was in-till a bigger boy dived in, knocking H flying over the side of the pit. Thankful it’s a great padded area and my little boy was brave, he wiped his little tears, got up and throw himself back in. The soft play area was nice enough… However a little constructive criticism, “Big kids should not have been allowed in the soft play area or that of the 3 Ft area all together” (with the exception of meet and greets , yes bigger kids like Bob too). It was clearly designed for the smallest of little people and having ten-year old + boys jumping all over the place ruined a great play session for what looked like many. Lastly it wasn’t fenced in, meaning your child would escape every ten minutes and you would need to set chase. Apart from these two things, It was lots of fun.

Harley seemed happy in the soft play area and I wondered just how I would persuade him to leave. Then he saw something! “Bob Builder, Bob Builder” Harley shouted frantically. Yes, there was Bob making his way to his meet & greet. I grabbed Harley making a mad dash for the gate, “I didn’t fancy a long wait as Harley just wouldn’t have understood” Luckily we only had one or two people in front. 

This to me was the highlight of the day! It made the whole stress of that morning extremely worth it, I even had a tear in my eye as I watched my little boy walk up to Bob, put his little hands out and say, “Bob Builder, hello” In a shocked little voice. I whispered to the big guy,”I warn you, this is Harley and his your number 1 fan and from now on, your biggest stalker” It was at that moment I thought to myself, “Jesus, How am I going to get him out of here” We tried to get Harley to turn to face the camera so I could catcher the beautiful moment. Amy obliged without problem, yet H was unable to take his eye’s of the big guy, he was totally star struck. Take a look for yourself!

As suspected H didn’t fancy leaving his mate Bob the Builder! I turn around to see just how long the queue had now become…  there was only one thing left for me to do, The good old, “Grab & run” As he so angrily kicked his little legs while delivering a string of  head-butts to my chest, he shouted, “No, no, More..More… Bob builder, Fix it” I turned to see Bob bobbing up and down obviously indulging in a little giggle… “Harley really was acting the crazed little fan” 

I carried Harley straight into the WOW tent located bang next door. It was filled to the very rim with fantastic WOW toys. They had Wow play tables with at-least three toys on each. The tent was busy and from every corner you could hear the sound of mothers ordering their children to share. Myself and H are a massive fan of WOW toys and Harley has been lucky enough to review a few this month. These are toys that will be added to the Birthday and Christmas list in our house for sure. 

This visit to the WOW tent had also given me the chance to meet Lucy who had put together Little Hs reviews… It was nice to personally thank her for so kindly doing so.  Just as I contemplated moving one I realised that the tent had some empty seating, so it was nice to take a break and chill for five minutes while H and Amy explored all the wonderful toys that surrounded them. The WOW team had the right idea when it came to keeping the kids happy. With the parents all set to move on only to be faced with refusing toddlers, (this or they wanted to take the toys with them) the WOW team came to the rescue  with they’re cleverly prepared surprise! Each child was given a cute little WOW toy as a gift on their exist. This Just proves that these guys really do know children when it comes to toys as most smiled and bopped away happily. 

It was such a hot day on Friday. We sat on the grass where I topped up the children’s sun cream while my sister grabbed them an ice lolly to help them cool down. These were steep at £2 each, but it came as no surprise, it wasn’t any more than other festivals and child friendly events we have attended so no shocks there!

Next we took a trip to the Alfresco Bandstand, which was a nice area, smaller than the main stage but not as busy! The Waybuloo’s were busy teaching the children their moves. Harley waved and clapped and it was Amy’s turn to be star struck. Sitting on her mummy’s shoulders her face displayed one almighty smile. It was these little moments that made Lollibop a festival that stood out from the rest. Sadly Amy didn’t get to give the Waybuloos a hug as they were entertaining up on the stage which was fenced off for health and safety reasons. 

There was plenty to do and see, everywhere you turned something magical was taking place. It was hard to follow the scheduled acts and appearances that we wanted to see due to the sheer wonderful distractions we faced, Clowns, music, beautiful stalls and amazing activities. 

The Children meet Peppa and George Pig (from a parents view these guys weren’t pretty) There was no photo opportunities as again they are in an enclosed area. However, despite this, the children were able to touch them and say hello face to face. I had to laugh when George pig put his face near Harley’s leaving him shouting, “Woo, woo pig, away, away” as he pushed his snout in a bid to get him out the way. Yes, these guys are pigs remember 🙂  they didn’t look as cute as they do on the TV but H soon got used to them, again needing to be carried away (My chest was bruised by now)! 

We then visited my favourite area, “The Enchanted Forest” It truly lived up to its name, with stalls selling everything from fairy wings to fairy dust, there was toadstool seating areas and a range of magical activities, it was a lovely area within the festival. This was the place to find great storytellers and awesome bubble blowers. It was beautiful watching the children happily run around chasing bubbles. 

We then Checked out some of the yummy food on display! The Children had not long eaten when we arrived at the park at just gone 1 pm, a few hours after it had opened at 11 am. This resulted in the children showing Little if not any interest in food. However, as for Me, I was staving, but at that point in time I didn’t fancy the queue, I was just to hot (Food queues were not outrageously long but long enough to put me off )!  With this we left it till a little later in the day when at some stages they could be found empty.

There was much more exciting staff needed doing! We danced to the, “Zingzillas” and the fabulous sounds of “Rastamouse and da easy crew” who were performing on the main stage. The Cbeebies Presenter Sid was hosting the show and did a brilliant job too. The area did get a little busy as expected, However, it was nice to see Alex, (another Cbeebies presenter) stood next to me with his family. Of course he could have got himself right up the front… What with it being his turn to host the same show at this very same festival the next day it wouldn’t have been hard. Yet to see him with his child on his shoulders happily dancing to the sounds of the easy crew in the same way I was, did put a smile on my face.

I also noticed something very interesting about the main stage, (In a good way) It had a large viewing platform! Ok, What did I care, Little man wasn’t at the festival right! Just to see that they were catering for those with disabilities was a wonderful sight! Some of those who accessed the platform wouldn’t have stood a chance of seeing anything down below as there were those in wheelchairs and other children like Little Man who wouldn’t have coped well with the crowding that was taking place on the ground. Honestly If my Little man was younger and interested in the Lollibop I would have been able to take him that day with little problems. The organiser had noticeably tried to make the event a good one that was fun and accessible for all.

Having had a good boogie with my smiling toddler, sister and niece, we grabbed some food (fish and chips… Very yummy but a tad expensive, though it was expected). This was followed by beautiful fresh strawberries and cream, one word, ‘WOW’ very lush. As we ate we watched some funky makeovers taking place! These were done on random people out the crowds & pulled up on stage. The makeover itself was pretty funky business, involving coloured hairspray, “Lots of it” funky makeup, sick on gems and other funkiness … Seriously this was entertaining stuff , I loved it! 

Soon after we took a walk back to the VIP tent where we decided on taking the children back out to the main festival area in their pushchairs, both looked a tad hots and eye rubbing was a sign little H was getting tired. All the same I was surprised when they both happily complied with no fuss made at all (Not normally Harley’s style).

The Press/VIPs tent was much cooler with seating areas in and out. I was quite surprised to see a number of Celebes within the area( I dunno why I was, after all those with children are their to give their kids a fantastic day just as I was! I guess, I just didn’t think about)! Well,  all were very down to earth, enjoying the sunshine with their children just like anyone else meaning no one felt out of place (re-phase… I didn’t feel out of place), Celebes included, ‘Jeff Blazer’ and his children & ‘Angela griffins’ to name a few. Lucky, I don’t get star stuck, that is… unless your an overly good looking Hollywood film star (I say no names) Well after a short rest,  a lovely cold drink and quick game of spot the celeb’ we set back off exploring.  

We checked out some of the many stalls where I was shocked but presently surprised to meet Andrea (The very lovely business mum… founder of the “Mommy I’m here child locator”) I’m currently running a giveaway on this very blog, where I’m giving away one of her lovely teddy bear child locators (ends 25th August) I was also very lucky to conduct a review on the wonderful child locator, which funnily Harley had tied to his shoe lace at this very festival, (The fault of losing him in at the lollibop, any festival in-fact… makes me feel a little light headed.) Meeting Andrea allowed me to put a face to the name and personally thank her for the review opportunities and her wonderful device I now can’t live without! Andrea is a very inspiring business woman  and extremely nice lady, was so glad we met!

We hadn’t been out the vip area that long when I suddenly noticed the two little were knocked out sleeping in their pushchairs. With this, me and my sister indulged ourselves in a little harmless childish behaviour I even considered getting my face painted (I didn’t… much to my sisters delight) 

We also visited the lovely stall of the online shop,”festivals Kidz” where I got to meet the lovely founder, ‘Romany’ who was making beautiful head dressings with dried flowers for the little fairies of Lollibop. The stall was amazing selling items like, ear defenders in a cool range of neon colours (great for those on the autism spectrum and well as festival goers). There were also beautiful, yet funky kites on display and some really awesome “Tees” all half price. The stall was filled with lots of festival treasure from pretty fairy customs and girlie raincoats, to head dresses and baby items. I loved the many circus bits and pieces which again are great for those on the autism spectrum & those with Sensory processing disorder (SPD) These products would be ideal in helping the development of motor skills or could be used for their sensory benefits. A,” must visit” both on and off line.

Sadly we didn’t get to visit the actual circus, nor did we do any off the baby mini mission activities or indulge in “Baby loves disco” which has the likelihood of becoming a firm  favourite off mine! Yes, serious, I love to dance and it seems Harley does too! Baby loves disco could quite well be a match made in heaven!  Really looking forward to hearing more about the company at the…  “Business mum’s unite” in October this year. Our reason’s for not being able to participate in the above planed activities is down to a couple of now snoring toddlers ! With this we Instead walked off in the hunt for a couple of helium balloons (Bob the builder for little H and Waybuloo for Amy) these were  very reasonable priced. reasonably priced at £5 for a small and £6 for large (serious I’ve seen these things sold at a tenner ago, so was nicely surprised)

As the time quickly passed, regardless of our enjoyment, We left a little earlier at 5.45 pm as opposed to 7 pm, If the children were a tad older we would have stayed till the very end! This doesn’t mean we were bored or there wasn’t enough activities for the toddlers as their seriously was!This wasn’t to do with the children’s entertainment needs, I’m not stating their wasn’t enough on offer for them, quite the  opposite in fact… The children were totally knocked out with all the excitement of the days events, and didn’t even get to try everything, there was  just so much to do! that they were still happily sleeping when we headed off home. 

A quick Little summing-up on the festival designed for little people

I was lucky to have free Vip tickets so for the festival. Hence reasons why I haven’t really commented on such issues. However I did hear parents moaning about cost stating their disgust at the price for a little one to get in! In the defensive of Lollibop, It was advised that tickets should be brought on line avoiding the gate fee & a situation where you’re paying a lot more… Tickets on the day equal pricey tickets and we all knew it! It know it’s easy for me to state, but I truly felt that given their was such a great line up and so much to do, You got your moneys worth… After all its no more than other places this time of year, such as, “Lego land” and in my view Lollibop is just as good, especially for my little Bob fan!  When I arrived at one queues were very small at the gate and also not huge in the park itself. I did hear that the queues were very long on the Saturday & Sunday, I can only comment by stating, “Yay I got the right day” (This really wasn’t the case Friday) How about Maybe a book and return service  for meet and greets, workshops and face painting for next year? s that something that could be organised?

The location was perfect (I’m a London girl and love Regents park & it famous, ‘London Zoo’) maybe a Lollibop tour  could be worked upon for all those missing out on such a great event. This would put the smiles on lots of little faces,  which is so worth the effort!. The event was big but everything was nicely compact and easy to locate. I wasn’t to keen on the Haystack seating! I ran over thinking we were gonna find a mini farmyard for little H & Amy to explore. 

The festival was awesome, very child centred, as stated on the tin! Yet it provided an amazing day for all the family, and had lots happening. It still managed to keep that rather hippy feel about it that I love..  (If that’s the right word for it). This atmosphere was helped by the sights of Little girls in tutus, and fairy wings with pretty flowers in their hair running around throwing handfuls of fairy dust while playing with glittery hola=hoops! This made me wish that my daughter was there with me, “I know she would have loved it” 

So the big question: Would we come back next year and do it all again? Gosh, Yes! Lollibop is magical, a festival that will continue to develop it’s magic into total awesomeness  with every passing year. It’s a festival that’s not to be missed!

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

7 Jul

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!

revolutionary device designed to keep children from wandering could benefit families of children with autism

4 Jul

Scrolling through my twitter timeline I came across a link that lead me to a site called, ‘Safe Girl Security’ who were promoting a really great product. To my delight some few weeks later I was approached and asked to review that same product, to share my views with my readers, to which I was happy to oblige!

Why?

Because I could see a great idea that could benefit families of young children especially those with autism

The Mommy I’m here teddy bear child locator is designed to give parents like me a little extra piece of mind!

 The locator is designed in a fun teddy bear design making it more appealing to a toddler or small child!  The locator is offered in a choice of two colours, pink or brown

 This locator is designed to send a signal from a hand held transmitter to a receiver that will give off a high pitch chirping sound allowing a parent to successfully locate a wandering child.

Given you notice that your child isn’t where they are meant to be in a reasonably good time after they have wandered off the locators chirps are loud enough to lead you to your child avoiding a potential accident or even fatality.

 When I first read about the Mommy I’m here locators my first thought was for parents with children on the autism spectrum and those with other special needs. I have sadly read one to many stories in the news and social networking sites that highlight a missing child with autism or sadly one that has had a terrible accident after becoming lost. This locator itself can of course be used for an older child however the product does seem to be aimed more at mothers with younger children. Nevertheless it’s my view that it all comes down to safety and the locator can do what it does for a younger child just as well for the older one.

 Putting it to the test

 I received the ‘Mommy I’m here’ child locator and was pretty keen to give it a go right away. However this wasn’t possible and it was a few days till I got the privilege of putting it to the test. Although my little man who has Aspergers syndrome has done a bit of wandering in the past his learnt as his grown to stick to the no wandering rule. He can be very rule bound and now tends to seek permission before going anywhere

So, the obvious choice for me was my 19 month old toddling terror Harley. Yes, he is at that wandering age and don’t I just know it!

 There was however one little issue! The teddy bear locator we received was pink and little man being so rigid in his thinking laughed continuously for some hours branding his little brother a little sister! Not like this mattered in anyway whatsoever to Harley… After all who says boys can’t do pink?


 I thought Harley would happily participate in my little test but he seemed to be in one of his little moods. I put the teddy receiver on to his shoe but he just wanted it off in-order to discover and play with it… Trust Harley!

Plan B was to attach the teddy receiver to the belt loop in Harley’s jeans. My trick… To do this before actually putting them on him! I made sure the teddy receiver was  switched on by switching it on at the back and checking that its tummy was displaying the bright red light. With this I opened my street door and waved him off (Seriously guys I’m joking!)

 I did in-fact open the back door allowing Harley a little explore time in the garden

 I went back inside and stood at the kitchen window watching Harley trying to pull the washing of the line (not impressed) I then took the transmitter out of my pocket (that comes on a key chain and has a little extending arial) and pressed the button.

 Well, it worked and pretty well too!

 Tip! let the little one get used to the noise or at least make them aware that they are wearing it. What started of as a good idea actually back fired on me when Harley almost jumped out of his skin. What’s great is you control the receiver, once you have your child in sight you can quickly stop the chirping at the touch of a button. The noise was extremely high pitched and I guessed it could be heard from a distance (every dog on the street barked that’s for sure)! I later tried it out again at the park! Daddy took Harley and walked ahead, after five minutes once out of sight I hit the button and tracked them down like a mother in the special forces. It was fabulous, one mother even asked where I got it from to which I happily told her.

  It’s worth noting that the noise produced by the locator may upset a child with auditory sensitivity but for me the safety aspect would far outweigh this.

I would suggest that you try to get your child as familiar with the sound as possible in order to avoid any distress. This is worth any time and effort.

 Although we mothers hate to think about the possible risk involved with children we need too in order to keep them safe! The world today doesn’t only offer our growing children a host of adventures but a host of dangers too. Like it or not there are some very unpleasant people in the world and this alarm could help keep your child that bit safer. If somebody attempted to snatch your child the noise is so high pitched and loud that this would possibly startle an abductor.

The thick Velcro strap is designed to keep the locator in a secure position throughout your child’s wear. I found the strap allowed you to secure the receiver in such away that someone attempting to remove it quickly would have to do some fumbling around to achieve this. The fact that it can be discretely hidden under any layers of clothing made this even better.

 This is a great product that I would highly recommend for toddlers, young children and those with special needs and autism. Just imagine having your child wear this when shopping in a busy supermarket, at the park or when visiting the beach.

The locator would also be great to use when your child is on a school trip or when out and about with a group of children, when its much easier for a child’s wandering to go unseen.

 You really can’t put a price on your child’s safety. Yet living in the real world I’m fully aware that piece of mind often equals a huge price tag! Not all parents including myself are in a position to part with a load of cash, especially when you’re a stay at home mum or dad or a  carer for a child with a disability.

That’s why I recommend the, ‘Mommy I’m here child locator‘ that  little bit more! At £29.99 I think it’s a great price that is very affordable allowing all parents regardless of their income the ability to keep their child safe from possible harm.

 Recommended: Check out the mommy I’m here child locator with new alert feature. This means the locator will send an alert to the key chain transmitter when the child wanders out of  range .

Visit the safe girl security website or call 0844 579 1129 where you can find a number of other fantastic products for all ages. Panic alarms, blinkies and child locators are just a few.

The gift of a beautiful friendship

31 May

A few days back I met up with one of my good friend’s for a spot of shopping and a catch up. 

It was during this catch up that I released how lucky I am to have this friend in my life!  Here’s why…

In adult life friendships can be hard things to maintain. Its thought to be even harder when only one of the two friends is a parent, which is the case for us!

This is often true for many, including me! What with the pressures being a parent brings…  It’s a time consuming task that leaves little room for socialising. Its sad but true that for many this type of friendship don’t last the course. 


This is even possible for some of the strongest friendships, those that have been maintained since childhood! Do you remember the days spent with that best friend who you swore would be your best friend forever? You know the one… You swore you would move to a foreign country with, share a flat with, be bridesmaid at her wedding, godmother to her children, and finally grow old and die with! There is a good chance that you haven’t seen nor spoke to that special someone for a very long time.

 It’s not only the factor of starting a family or getting married that sees such great friendships flounder, but also the changing interest you acquire as you sail through the different stages of your life!

Some of my closest childhood friendships have been lost through the years… and yes, many were lost when one of us started a family! Still, It should be noted that I haven’t only lost friendships with childless friends, but those who like me have at least popped out one child… In my case three!  After all… it’s a busy job being mum!

So, what happens when you throw autism into the mix? One friend not only starts a family but one of her children ends up being on the autism spectrum or has some other form of disability/special need? If the above is true, surely this leaves little hope of friendship survival!  

Sadly many of my own friendships just haven’t made it past the finish line! In all honesty, I properly only have a few that have. 

And guess what?

These are friendships I have with friends who don’t yet have children, bringing me back to the reason I consider myself a very lucky mummy!

As I sat with my friend discussing the Ins & outs of my youngest child’s tantrums, my daughters developing “attitude” and little mans offer of a school placement, I could tell that my friend was totally engaged with what it was I had to say! By now some of my friends would be checking their mobiles & making their excuses! Fortunately this isn’t the case with Donna!

You read a lot about the child with Aspergers not being able to make or maintain friendships, sadly this is all to often the case for the child’s parents too! Its something you read far less about, who wants to admit that as a grown arse woman you struggle to make or maintain friendships! Well, I’m not ashamed to state that, “Yes I find it extremely bloody hard!” Why?  Many people Just fail to understand Little man and a good nine times out of ten, they just can’t cope with his challenging ways! 

As for the aspect of making friends, this never seems to happen when out and about with the children. Fellow parents tend to look at myself & Little man before turning to gossip with the mothers in their group. Its like a whole room of eyes just on you! Have you ever felt that, the feeling that the whole room is looking at you? I have! Its something I feel daily! Every time I reach the school gate, go to the park or take the children to the soft play area. I feel it because normally the whole room is looking at me! 

Myself & little man can clear an entire park with our presence!  Oh yer… We could properly put you out of business, clearing almost any child friendly event presented to us. Does this make me sad! It breaks my bloody heart every-time I think about it. 

Do you know who makes me feel better at times like these? Donna! That’s the beauty of friendship!

Donna is like my sidekick, my backbone if you like, she keeps me strong and smiling. Donna isn’t just a friend who listens with real interest but supports and encourages me in anything I do… no matter how crazy (and I can be pretty crazy at times). She was by my side through Little man’s diagnosis, has attended & supported me through two court case’s when Little man was a school refuser, she has been there for nearly every meeting with his old mainstream school or the LEA, and she even attended the early bird course as she herself wanted to learn more!

One of my happier moments to our friendship was the day she held my hand as I pushed my youngest child into the world some eighteen months back. (Donna would likely state that held her hand I did not, referring to it as more of a squeeze that was so tight I almost cut of her blood circulation.) 

Donna is a woman who isn’t scared to share a day out with me and my children. (Even when I’ve arrange a sitter she encourages me to bring them along.) Donna has been present during some of little mans most challenging meltdowns, yet she’s never ran away leaving me to it, she’s encountered the stares form the public, chased Little man across a massive heath (yes he was determined to escape on a bus!), she’s talked him across a bridge when he was to frighten to move, she’s even patiently listens to his non-stop bus talk & constant singing of Bruno Mars hits! But best and most importantly of all… she loves and excepts him for the little boy that he is!

How amazing is that!! 

Post dedicated to my friend Donna Jordan to show my appreciation at having her in my life 

A love hate relationship

1 May

So, today I’ve been inspired to write this post by my beautiful daughter.

You see, my little princess is feeling a little left out! I guess I haven’t really treated her like the little princess that she is just lately.

I hold my hands up, life has been far to busy and she hasn’t received quite as much attention as I would have liked to have given her. I’m not stating I’ve neglected here, “As if my little diva would let me,” I’m merely stating that we need some one-on-one time without big brother! There has been less chick flicks & girlie pampering but far to many tears.

I look at my daughter with such pride, she is this truly amazing little girl who never fails to melt my heart. Like most siblings of Children on the autism spectrum, she seems quite mature for her eight years.

Over these past few months, which I must add have been pretty emotional for all, I’ve noticed my little girl has mimicked one or two of little man’s behaviours. It doesn’t take a genius to know why she has done this, after all little man gets quite a bit of attention when displaying such behaviours. Alice-Sara (My daughter) has claimed that she can no longer use certain cutlery when eating her dinner as it makes her feel fuzzy (tactile sensitivity). She has stated that it’s to noisy in school and has gone as far as throwing a tantrum over a miner mishap that wouldn’t normally bother her. This isn’t all! More recently see seems somewhat resentful towards her brother. It’s understandable given a good degree of the time he isn’t very nice to her and is extremely hard to live with, but it’s also to do with how much time I need to spend attending to Little mans needs, both social and educational. Last week I almost died of shock when my daughter, who enjoys school refused to attend. She throw me with her claims that she hated it and certain teachers didn’t understand her, yes, something her brother has stated through sobs of tears! She insisted that in-order for her to attend I would need to write some letters and sort things out in terms of her education! She also informed me that maybe it would be better to home educate her for a a bit while things settled down, Her worlds not mine! “Guys this little girl has a stack of friends and is popular with both the pupils and the teachers. Her reports always come back glowing with nothing but prise written all over them”. I knew what this was really about! With Little man’s pending Sen tribunal due to be heard in June, I have been writing statements, emails and filling out a ton of paperwork, mainly parental information needed to form part of his independent SALT and EP assessments. I have also been doing quite a bit of casework for my role as a TSS volunteer. Alice-Sara confirmed this to be the issue when I insisted we talk about it on the way to school when she so angrily stated why storming towards the front door, “Oh, You would have done it for him.” Yes, ‘him’ meaning Little man!

Alice-Sara loves her brother, however things are not always easy for her. All brothers & sisters normally quarrel, I’m not denying that, but come to our house, I promise you its beyond ‘Normal’!

Now, it’s not always the little dude who is the one to kick things off, my daughter has become accustomed to setting him off and she’s learnt how and what buttons to press in-order to get her desired reaction. However his rigid thinking and tendency to be inflexible and controlling has either brought her to breaking point or reduced her to tears. Lately she can’t seem to breathe without it bothering him. Just a few days back little man treated the family to a night on pain-killers. My daughter needed Calpol (children’s medicine) for her headache and although I had just taken a couple of good old paracetamol for my own chronic headache, I could have done with something a tad stronger like a few handfuls of tranquillisers to knock me out for the rest of the week!

Alice-Sara decided that having tried a ‘Fish Finger’ for the first time they were actually quite yummy. When dished up and the kids sat down for dinner, little man’s eyes wondered across the table in the direction of her plate. “OH NO…”

Little man: “Mum, you’ve given Alice the wrong dinner!”

Before I could answer…

“No, she hasn’t. I like fish fingers now.” Announced Alice-Sara.

Well, what happened next wasn’t anything unexpected as it happens on a regular basis! A full-on blow up was had that consisted of him claiming that his sister shouldn’t be allowed to like fish fingers as he likes them! “She’s copying me,” and “You’re horrible mum! They were my fish-fingers!” Those statements and a load more, accompanied together with kicking doors and throwing whatever was in his reach went on for a good proportion of the night. A real head banging event!

Last spring when things were really difficult at school for Little man which resulted in some challenges at home, I began to worry for both my Little man and my daughter. His aggressive behaviour was at a point that was deeply concerning. We went on a day out accompanied by my friend who ended up having quite an eventful time and one I’m sure she wont forget for some time! It was during this day out that I decided we as a family needed to seek professional help & support! Alice-Sara was happily flying a kite on the heath following the ‘Bike & Kite’ festival we had just attended. Out of nowhere came little man who had decided it was time she stopped! He run over giving her a massive shove that saw her fall to the ground. No tears followed, she didn’t even complain, just got up bushed herself off and returned to the joy of flying her kite. In that exact moment I realised that I had just witnessed something that scared the ‘crap out of me!’ Was this the ‘Norm’ for her? Did she consider it an acceptable thing for her big brother to have done? Would this little girl ‘my little girl’ grow up thinking it was Ok to be pushed around? I don’t want my daughter to ever allow herself to be treated like this, not by anybody including that off her big brother! It was lucky that at this time I was in contact with a lady who works for the autism outreach service for our area and how lucky was I when she agreed to visit me at home and have a chat with my little princess. I also gained some good ideas on strategies that I could implement that would hopefully stop little man becoming so physically aggressive towards his sister. It took some effort but results were seen, his hitting faded out and Alice-Sara would no longer turn a blind eye to his behaviour.

Sadly these past few weeks something has changed in the little man and myself and daughter have received some unwelcome attacks as a result. He even attacked his sister on a packed train when returning from the West End because she, ‘Disrespected Transport for London’ when placing her tired little feet on the seat she was sat on.

How can I make it stop? Consistency is our only hope. Strategies that we used last year have been tried but sadly failed, however this mum is on a mission and won’t give up on finding another strategy that works!

I’m guessing a number of parents of children on the autism spectrum will agree… consistency is a ‘must’ for all children but isn’t the easiest thing to apply when dealing with the child with Aspergers and they’re challenging behaviour.

To bring this post to a close I’ve finished with something positive. After all this talk of violence I think I need to! So, besides sharing some contact details for sibling support groups that some off you may find helpful, I’ve also included this beautiful picture that I captured yesterday on the train when on our way out for the evening to see a show in the West End to celebrate the Royal Wedding. Little man has his arm around his sister who happily excepted a hug as opposed to a slap or a punch! No-one requested he gave her a hug, it’s something that you just don’t see him do! I don’t know who was more surprised me or my daughter!

The Charity Barnardo’s run a number support groups for siblings of disabled children around the country. Some groups are mixed for both the Sibling and their brother/sister with a disability, whereas others are dedicated to the sibling alone. (028) 90672366 is the contact details for the London regional office. If anyone requires the number for their area drop me a comment or contact the above number as I’m sure they will help.

Contact a Family is another organisation who cater for siblings of children with disabilities. Further info can be obtained by calling… 0808 808 3555

Mencap are happy to put people in-touch with their local sibling support group. The number for England is: 0207 4540454

Kids are an organisation which runs play, education and social initiatives for disabled children and it is suggested that siblings may also benefit from their clubs, outings and residential weekends, and can be contacted on: 020 7359 7635 email: enquiries@kids.org.uk

Aspirations Or Clever Financial Alterations! You Decide

12 Mar

We waited and waited and on the 9th, March 2011 we finally got to see  what the Coalition had in store for us in way of the ‘Green Paper’ titled ‘Support and aspiration: A new approach to special educational needs and disability’


Talking as a parent i’m pleased to see that the  proposed education, health and social care plans (EHSCP) that are planed to replace statements of special educational needs will still give parents the same legal protection that a statement brings. The proposed plan would be aimed at 0-25 year olds not just school aged children. The plans will also involve support in the areas of health and social care as well as education, something that has been missing for too long! However I do wonder how this will affect those already with statements especially in terms of funding and the talk of allocated key-workers. Surely the statements will be reviewed in the same way as the EHSCP and so forth! The statements will therefore need to be maintained in-till the child reaches 25 and be amended to include the health and social care aspect.

Another proposal I welcome is the prospect of being given more choice on where our children are educated. I know many will accuse the coalition of  creating barriers to inclusive education in mainstream schools, but I am a firm believer that mainstream is not always the right way. People must remember that all children are different regardless of their special educational needs or disability, Just because society thinks that every child with sen/disability should learn beside their peers, In reality this isn’t easy for some (My son included) I believe that mainstream was seriously affecting his mental health which is the case for many children. I’m also very interested to hear more on the proposal of individualised budgets with greater parental control giving us a voice that allows us to express views on what services and provision such funding should provide. This is proposed to come into action by the year 2014. In till such date I will remain completely open mind. My mother used to tell me, “If something seems to good to be true, then it probably is.” For that reason I dare to get my hopes up.

Some maybe shaking there heads branding me a pessimist! Well, they would be correct, I’m just that!  Sadly it’s true but myself like many others have been made to feel this way when it comes to SEN & education. It’s my opinion that things will never be easy and we are used to battling for every thing our children need. I for one would be a little shocked to discover that I actually had some time on my hands to do other things instead of battling the system by way of phone calls, meetings, emailing, letter writing, campaigning and so on…  I really struggle to get my head around the idea that parents will be able to have an active part in the decision process surrounding their child’s provision & funding. We have to drag the local authority by the arse all the way to the tribunal just to get a little TA time or use of a laptop! So if this does plan out I for one will fill a little strange being suddenly heard and valued (Well, valued maybe pushing it a tad to far!).

Though some of the proposals look good on paper, I’ve been asking myself , “Are these just words being sugar-coated to look sweeter then they really are?” I mean, let’s not forget that the government are in the process of making huge cuts which will affect many of the services that have a role to play within this very paper. How will they be able to provide what is expected of them? Another important question to ask is, “How much are the Coalition planing to save through the implementation of the green paper?”

I’ve also been thinking about the legal side of things. Given the position I’m currently in (Advising parents on their appeal rights on LEAs sen decisions) I see a lot of re-training heading my way if the green paper is fully implemented. The law would need to under go a radical overview, with large areas, especially section 26 and 27 of the Ed act 96,  needing to be rewritten from scratch and the publication of a new code of practice.

But one of the biggest concerns for me is the proposal of a “single, multi-agency assessment” on the same day, rather than separate assessments on separate days. As much as I welcome a speeder assessment process then that of the current statutory assessment (10 week assessment, with the overall process from start to finish taking 26 weeks) but to propose just ‘one single assessment’ with the involvement of all professionals (and possibly even voluntary agencies) is quite honestly barbaric!

The paper has empathised that those children considered to have the most complex needs, will be the children assessed and issued with an education, health and social care plan, therefore how do they propose to assess a child with such complex needs in one single assessment? Children on the autism spectrum will be just one group of  many children who’s needs may be completely missed due to the child’s particular mood, environment, behaviour, anxiety , etc., on the chosen day of the assessment. I know that my own child would not cope with such an assessment, what with all them eyes on him and questions fired at him! What would it even involve? Are we talking about sending an autistic child (or any child for that matter) into a room with a large number of professionals sat with inquisitive prying eyes, clip boards, and a list of questions as long as their arm? If yes, I guess they can expect a shock at the response they get! It just isn’t going to happen… Surely complex means ‘COMPLEX!’ my definition of  such a word would be, “A complex issue or range of problems that take time to fully resolve” The government is forever banging on about children being placed on the sen register at the drop of a hat, well, I can see a situation being created leading to children dropping of it just as quick!  My son can just about cope with an assessment with one or two professional, any more then this rather than being chucked off the register, he will likely be labelled as a child who is dangerous because he will likely hit out as an attempt to escape the highly stressful situation that he has been placed in. Although I agree it’s not ideal him or any other child with sen having to undergo a range of assessments over a course of time, the one day method wont make things any better but a great deal worse!

Let’s be honest would you or I enjoy being sat in a room with a range of people staring at you like some caged animal reporting your every-more?

26 weeks is way too long but one day! Seriously there is no in-between with this government. I mean do the they really have the child’s best interest at heart?

We have to ask ourselves, has the green paper been created with the  ambition of improving the life chances open to children with sen, and  to offer better support for family members, or is it really their ambition to do away with essential services and provisions with little uproar, while at the same time attempting to reduce the number of  children that are placed on the SEN register?

It’s those children considered to have less complex needs that I’m  seriously worried for!  What defines less complex needs? I’ve spoken to many parents hundreds in-fact that have battled in the past  and present with both schools & local authorities to prove just how complex their child’s needs actually are! I know from past experience that schools won’t except this in-till your child is pushed to the point of self-destruction or has become a complete failure at everything due to the stress they have been placed under. Parents of children with Aspergers or high functioning autism find this to be the case a huge proportion of the time. School’s and LEAs say the same thing over and over again, “Your child isn’t an underachiever, therefore warrants no provision to be made for him/her!” Yet there they are whacking their heads against Walls with the frustration of the work load or noise levels in the classroom, they are always running into social difficulties, becoming isolated from their peers and even excluded on a daily/weekly  basis. It’s ludicrous!

By doing away with school action and school action plus I fear these children will suffer a great deal more than they are currently made too already! What with schools being able to commission the services and put the provision in place that these children are said to need, in this current financial climate is like playing with fire. Much more detail and reassurance is needed and although I know that we are once more welcome to give our views on the paper, I just feel given the length of delay in publishing the paper, including some finer details within in it as to make things a little clearer would have been most welcome!

Ministers have to give the public more information in regard to the finer details that make up the aspirations of the green paper. Including the legal aspects, cost (including how much this new system will put back in to the governments pocket in way of savings) and very importantly the statutory duties of those involve

To some parents this paper means nothing! To others it’s the prospect of a better further for their child in both the early years and that of early adult life. Making provision for children aged 0-25 in all areas of education, health and social care is long awaited. Will this be the start of something promising or just another unfulfilled promise by another Government?…. Only time will tell!

 
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