Has your life been affected by autism or do you know someone whose has? Do you know someone who is always putting others before themselves and deserves an extra-special treat? Nominate them now and they could be part of Wear It For Autism.
Wear It For Autism is looking for mums, dads, children and carers – who either have autism themselves or care for those living with the condition – to have a full makeover and take centre-stage in a stylish fashion event at London’s Vinyl Factory on Tuesday 10 September.
Nominations are open now until Sunday 23 June 2013. Celebrity judges, including Gail Porter and Adele Silva, alongside Maggie Paterson, Principal of Pineapple Performing Arts Covent Garden, will select winners from across five categories – mums, dads, young carers, children with autism, and adults with austim. All the winners will be treated to a top-to-toe makeover by styling experts and take part in the Wear It for Autism catwalk show.
Anna Kennedy said: “The idea behind Wear It For Autism was to spoil those who usually never get a chance to treat – or even think of – themselves. Living with autism can be challenging and extremely demanding, so we wanted to create a special event that will be fun for all involved, as well as raise vital funds to campaign for the rights of those with this disability.”
If you know a parent, carer or child affected by autism, or if you want to take part in Wear It For Autism, nominate now at www.annakennedyonline.com
Tickets for the show are available now, priced £25 each. All profits go to the registered charity Anna Kennedy Online, which supports UK families affected by autism, including providing small grants for educational and domestic resources
Sponsor’s for the event are, Littlewood’s,Toni & Guy, Pineapple Arts, London Beauty Queen and Mahogony
This is one of two reviews I’m writing. This review will focus on the Wave Hotel and Premium dinning plan. The second, which will shortly follow, will feature the rest of the resort and its facilities.
So, last year I was selected to be one of 40 Butlins Ambassadors and at the end of the year I decided I’d book our family break for this April Easter half term.
I booked the break for a family of 6. The party consisted of myself and 3 children (Alice 10, Harley 3 and Little man who is 12 and has a diagnosis of Aspergers Syndrome). Also coming along was my mother and a good family friend.
The Accommodation…
We decided we wanted to try the newest of the resorts 3 hotels the ‘Wave’ and due to the number of guest in our party, we were offered interconnecting rooms.
We have been to Butlins a few times before with our last trip being a weekend break staying at the Ocean Hotel (which we were very impressed by). This time we would be staying midweek for a total of 4 nights (Mon-Fri).
As my eldest child has Aspergers Syndrome his very routine reliant, likes to know what is happening when and where and can become upset or somewhat challenging when faced with change. For this reason I made it my mission to fully look into all the accommodation and dinning plans available to us before booking. I also sourced images from the Internet and brochures as well as Videos on youtube to share with the little man so that the facilities were not considered too “New” for him.
My reasons for opting for the Wave Hotel was its focus on families with older children (Ok, Harley is 3 but both little man and Alice are older). The games room (Little man is PS3 nuts) and the positive reviews I had read.
We arrived at the Hotel reasonably late (9.30pm) which meant we were the last to check in. Despite this there was still a few parking spaces left in the hotels private car park. The hotel has its own entrance separate from the main resort entrance. We did enter the wrong way despite the wave being clearly signposted (I blame the kids backseat arguments) but the guys on the gate were most helpful and understanding. The hotel car park also has allocated disabled parking available.
From the outside the hotel is most attractive, very modern and quite obviously newly built.
The reception area is smart and sleek with great lighting. It has beautiful water features to tie in with the whole wave theme as well as a large seating area, bar and coffee shop, cash machine and large checkin and reception desk. Its here you will also find the entrance to the state of the art games port that gives families access to PS3s, Wiis, 3DS consoles and even Mac desktop computers. There are a number of leaflets detailing local attractions on display as well as a good selection of family DVDs that are free to borrow (with a refundable £10 deposit).
We were situated on the hotels 5th floor and there were 4 lifts in operation. Lifts are not overly huge but we were easily able to load the luggage trolley and all six of us in the one lift. Given we arrived later than most the lifts were empty at this hour. The ocean themed imaging and jaws theme tune music, does really add to the whole “Lift” experience. 🙂
Our doors were opened electronically with cards for which we were given two cards for each room.
As mentioned we had 2 rooms with an interconnecting door. In one room we had a huge bed, kids room, bathroom and nice size balcony with great sea views. In the next room we had the exact same again, only with twin beds. Each had huge wardrobe fitments with electronic safes. There was a nice size fridge and full sized ironing board with iron. There was a hairdryer that was connected to a nice vanity unit with large mirrors. Lights were operated by an electronic card and lighting options were good. This is particularly important as Little man has many sensory sensitivities and the right lighting is essential to his mood. There was both low lighting and bright lighting in the main room.
The main room has a large TV with lots of channels and it is fitted to the centre of the wall in line with the bed. In the kids room you have bunk beds with a TV at the end of both beds. This is great only we didn’t find any headphones meaning watching both at the same time wouldn’t be an option. However, the reception may have provided these if asked, only we were to busy having fun that we forgot to even ask in the end.
As we had the interconnecting rooms, little man was able to have his own space which is important to a child on the spectrum. Only without sounding too negative, little man didn’t feel that relaxed in the room. The children’s rooms are very small and have been designed to resemble cabins. This didn’t sit well with little man. The low lighting was a little to blue and he commented that he felt like he couldn’t breath because of its size and lack of windows. Then again my daughter of 10 absolutely loved her room. She couldn’t wait to get in bed and relax at the end of each night so it all depends on ones own needs and taste.
The children’s rooms have these really funky images of Octopuses and seahorse’s that are meant to come “Alive” with the use of a free iPhone app. Sadly my app wouldn’t work so the kids missed out. I have seen this work when used on a Butlins writing pad and when it works its fantastic. The app may have required me to have more space on my device. The iPhone is admittedly very full at present.
The bathroom is of a great size and has a good size bath with shower fitment. The water was always hot and the bath filled up quickly. The power shower was fast and powerful. Little man hates baths but loves showers (this again is a sensory thing)! He spent lots of time in the shower and noted how much he loved the lighting feature on the shower head (it changes colour).
We were provided with lots of soft clean white towels and a small selection of toiletries (note, we were provided with these whenever we ran out when staying at the Ocean, though this doesn’t seem to be the case for the wave) luckily we had brought our own.
We found our rooms to be of a good warm temperature on arrival and the heating was easily operated by a digital box on the wall. The decor was nice and modern with a yellow and blue theme throughout.
Tea and coffee facilities were provided, though it was felt that there just wasn’t enough milk for 3 adults. Nonetheless these were topped up daily which was appreciated.
We were pleased with the presentation of both rooms with all areas being very clean and tidy. Daily house keeping was of an excellent standard over the first few days and a good standard for the remaining day.
There was also some nice little touches, such as the addition of a card left on the table which wished us all a Happy Easter.
Free Wifi was provided in and around the hotel. This was easy to log into with no sign up required. Download and streaming speeds were great in the hotel and Ok around the resort. This was a bonus as I was keeping up with my emails via my iPhone and the kids had brought there tablets with them.
I did notice that when any of us including the children walked across the floor, this was rather loud, despite the addition of carpets. I’ve been informed that this seems to be common in newly built buildings. As I have a child with Autism who at times requires medication to sleep I did worry about the night times.
My worries were warranted as on our final night at 12.50am I heard a knock on the door. Little man had been having a minor meltdown some 20 minutes before and the Butlins rep informed us that someone had complained about banging on the floor. When your child has just finished a meltdown it can feel a little upsetting that others have phoned down to the reception to complain. However the rep was most understanding and very polite. Nonetheless it is felt that this is worth mentioning as if your child is very active especially of an evening you may want to ask for a ground floor apartment or go at a quieter time of year when the hotel is less full (term time if you have little one’s would be best). Its not very nice having someone knock to tell you that they’ve received complaints while your 12 year old is just calming down but doing so with listening ears.
Rooms also have a telephone so you can easily call downstairs to reception with any questions. I was told I could use the hotel phone to call an 0845 national number for free but having followed the instructions more than once I couldn’t connect. Thankfully the reception staff were very accommodating letting me use the reception phone.
Pros…
Great sea views
Nice clean rooms
Good house keeping
Free Wifi facilities
Great shower and bath
Good wardrobe and storage space
Very comfortable beds
Self controlled heating
Room under all beds for suitcases
Option of easily interconnecting rooms
Free cash machine withdrawals
4 lifts (especially of importance for wheelchair users and those with small children/pushchairs)
Games room
Kindle library (with options to borrow both kindles and iPods)
Those little things that may make it that little bit more perfect than it is already…
Room Service option
Drinks vending machine (nearest vending machine is at end of car park when bar/coffee bar closed)
More detailed room guide specifically for the hotel room (just to advise on how to work TVs, heating and phones).
More mood lighting for children’s rooms (like those provide in the main rooms at the ocean. Also some under bed trays like those in the Ocean would be good.
Some door stops or heavier doors that naturally close much slower so that these don’t accidentally keep slamming shut.
Dinning…
As mentioned we opted for premium dinning plan and would be receiving both breakfast and dinner (half board).
On arrival we were allocated a dinning pass for the deck restaurant.
Firstly if your child on the autism spectrum has a very over sensitive sense of smell and is upset by this then I’d highly recommend self catering because as you probably know, the different smells of various foods can be upsetting to a child on the autism spectrum.
This is sometimes the case with little man but this has been steadily improving and we decided that if the noise and smells became to much for little man then one of us adults would leave with him.
Thankfully we experienced little problems on this front with only minor unavoidable upsets experienced.
There was a very good selection of foods on offer both during breakfast and dinner. This is great for those fussy eaters like little man. This is also a self service option so little man didn’t need to worry about different foods coming into contact with one another and was able to put different foods onto different plates with no questions asked.
At breakfast there was everything from fresh juices, cereals, toast with various spreads, fresh fruits and yogurts, freshly made omelettes and pancakes to full English fry ups.
Dinner time was just as good when it came to variety. A good selection of meat and fish with various sides of potatoes, veg and more. There was vegetarian options and menus designed specifically for the children. You were tempted by the salad bar, different soups and fresh breads, cheese and biscuits as well as a vast selection of both hot and cold puddings. I think the self service Ice cream machine was an instant hit with all three of my children with little man wanting to serve it up for all of us as he had developed a love for operating the machine.
As a premium diner you also have a Carvery and Someone cooking hot pastas which I must say were absolutely delicious.
We didn’t eat on the Friday but on the following three evenings we ate dinner I was very impressed with what I’d chosen and left feeling happy and content.
I’ve never been great with breakfast as don’t seem to eat as well at an earlier time. However, it was nice and the kids received a good start to their day.
We dined at various times of the morning and evening and never waited to long for a table. Though on the first morning we were allocated 2 tables next to one another which did mean I found it hard to keep the toddler seated (he kept wanting to go from table to table). Once we had explained that we’d like to remain dinning together on the one table, no further issues were experienced.
There were plenty of high chairs for little ones as well as smaller cutlery and even Billy Bear plates.
Pros…
Huge selection of food on offer
Self Service
Quality of food
Helpfulness of staff
Non rushed environment
Baby foods and bottle heating
Those little things to make it even better would be…
Clearer menus of whats on offer (many people need to grab there glasses or lean over others trays to read small cards.
A little more info when you arrive at the Deck restaurant for the first time (how it all works… I wasn’t sure if it was the one queue formed or a queue for each counter etc…)
On the whole the Wave offers a very present stay with friendly staff, nice rooms and good facilities.
The dinning plan also makes a great addition to your accommodation and is located right outside the hotel for convenience.
Did we love our Butlins Experience? You bet we did!
Here’s a video below giving you a sneak peak of our up coming review of the Bultins Bognor Regis Resort and its facilities.
Checkout the Butlins official site for all current prices and special offers
Disclaimer: As a Butlins ambassador I was provided the accommodation and dinning plan free of charge in exchange for an honest review. All opinions are solely my own and have not been influenced by my position.
Worried about the child and family bill 2013? Well, if your child has SEN or a disability then you should be!
This is a post I’ve needed to write since I first read the published Children and Families Bill 2013 but ended up having so many questions flying around in my own head that I couldn’t find a way to relax enough to put them in to words (well, words that made sense anyway).
I have now been given the opportunity to head up to Westminster on Monday, to meet with the Minster Ed Timpson where I will be able to put those questions and opinions forward! So…I thought it would be a good idea to share them here with you guys first and also see if you had any opinions to add.
If you remember the post I wrote last year relating to the Green Paper you will know that back then I had already developed grave concerns relating to the proposed reforms relating the that of Special educational Needs (SEN). Now reading the Children and Families Bill it is only fair to say that those initial concerns have now been greatly heightened and with good cause too.
1: One of my major concerns surrounded that of the removal of school action/action plus. The green paper offered little indication on what was therefore being implemented to make things easier for those children without Statements/Education Health Care Plans [EHCP] to obtain appropriate support and services. Looking at the bill it seems that as I feared, “Nothing” is actually being put in place that will truly benefit the child who doesn’t fit the criteria for SEN. The Department Of Education (DFE) has stated that these children will have some degree of support through that of the “Local Offer” Though it should be noted that the bill as written states that the Local Authority (LA) are required to make information available relating to the education, health and social care services it “expects” to be available within its local area! This seems to hold no legal duty and therefore leaves these children in a somewhat similar situation than the one they are already in.
2: The Bill states that it has expanded the list of schools parents can request as a preference when naming the school in their child’s EHCP. This maybe so, but the fact the LA can still claim that for the child to attend the parents preferred school would be an inefficient use of resources, therefore meaning they wont name that school, actually means parents are in no way a better position than the one they are currently facing now! Well, I fail to see the difference.
3: At the start of the process the green paper promised a much quicker assessment process, with timescales being greatly reduced and parents not having to battle their way through the SEN System. However, the Bill fails to reflect this and actually fails to make known any sort of timescales for assessments, reassessments or appeals whatsoever.
4: The suggested requirement for parents to meet with LA officials before an application is made to tribunal is just pointless. It was first suggested that Mediation would become compulsory, meaning parents needed to take this route before applications for appeals to the tribunal were omitted. However, it was later agreed that this type of requirement was somewhat unfair, one making little if no sense! But then the the bill has stated the possibility of a meeting to discuss possible mediation etc is to be held before submitting an appeal to the tribunal! Come on… This will again make an already long process longer. If parents thought they could just pop down the LA and sort the whole mess out over a cuppa then don’t you think they would? No mother likes to endure the whole stressful notion of having to battle the LA at the tribunal, don’t you think we’d avoid it if we could. Again the whole lacking of timescales contributes here greatly. Why shouldn’t appeals be submitted at the first instance of it being denied. Its already known that it is only then that most LAs will actually start putting things into action and communicating with parents.
5: Another huge concern for me is the lack of information given on how the integration of the new EHCP will affect those children who currently have statements of SEN? Given a great deal of the law and SEN code will need to be rewritten to fit in with the new sen reforms how is this going to work with the statement! After all, if statements are going to be replaced this cant possibly be done by the time the new laws come into practice! With many of the laws that relate to those statements being written off, where is the legal protection to ensure the provision is still provided to the child who obtains that statements? Will statements be gradually phased out, scrapped and reproduced as EHCP as a result of annual reviews? What about those who have had annual reviews shortly before the legislation is made official? Will they hold a statement that offers no protection for a year? What happens when they are older will they receive the same protection if they remain in education? How will these new changes incorporate the social care side of things? Will those who have SALT on part 3 of their statement find that it then becomes a requirement of the health care system, no longer the duty of the LA to provide? A health care system that has no legal duty to provide it?
Which brings me to my next concern…
6: The lack of duty with the health sector. As it stands most of the areas which the LEA consider to be non educational are tossed over to part 5 of a child’s statement! I don’t think anybody from the health sector currently ever sees that part of little man’s statement or that of any other childs! Why? because they have no duty to provide any advised provisions, thats why! So, I guess I should be excited about the LAs joint commissioning with the health sector. Sadly I’ve already lost faith in this proposal.
The fact is that the LA have a duty to provide educational provision and regardless of joint commissioning it will stay that way! So, them “non” educational support needs will fall in the hands of the health sector right? With the guys at the LA actively communicating with those in the health sector things will now be hunky dory, right? Don’t be fooled! Their will be no legal requirements made of the health sector so basically… Nothing’s changed! Its just like having the non educational aspects of a statement tossed in part 5. The only difference is the health sector will know they are there, but in no way does this mean they will have to provide such services! What with waiting lists for a basic blood test on the rise and government funding cuts that have already had detrimental impacts on the NHS and related services, it looks like even more children will be left without the support they need to succeed. Yes, they made it sound so promising when talking about it all in the green paper, but in reality, it isn’t really that pretty no matter how much you dress it up!
As mentioned Little man receives SALT and OT which the LA tried its best to toss into part 5 of his statement. It took two independent assessments and reports, a pending tribunal case (that luckily didn’t make it to the hearing) for the LEA to throw the towel in. Which brings me to the issue of legal aid, if this ends up restricted then I guess children all over England and Wales are gonna be in huge trouble.
7: My next point to make is that of the funding issue. Again the bill has been very careful not to give many clues on the budgeting side of things. Delegations of school’s budgets for those children just outside the SEN scoop have not been discussed, and very little information on the individual funding of a child’s EHCP has been offered. Ok, so we know about the idea of personal budgets, yet the finer details are still up in the air. However, at this early stage my concerns currently surround the area of passing money to families and letting them go about it themselves. Ok, this way we know what our children are getting and we can hopefully obtain the services needed to cater for our child’s needs, but isn’t this just another way of removing the responsibility and the workload from the LA. I want to know how they are going to monitor the situation to ensure that the provision on the EHCP is being implemented? Will the parents be required to document spending of the budget having to knock up an annual spending report for the LAs records? I don’t know about you guys but I’m to busy being a mother and an advocate for all that!
8: Is this just another way to lower spends? Honestly this is a serious question, one that deeply worries me! How can we as a country struggling against a Recession with cuts already hitting children’s services the hardest, have faith that our children’s needs will be met this way. The bill is missing huge chunks of legalities that although haven’t been great have all the same protected us somewhat, giving us a case to fright for our children. With the bill being very unclear when it comes to appeals, timescales and a duty to provide services who can blame me for thinking that this isn’t a way to slowly help refill the governments penny jar. After all legal expenses are just that expensive so by removing many of the legal rights associated with the statement, less appeals can be lodged and the expenses decrease… Sad but logical!
9: Has anyone else noticed that the idea of a key worker, a single person to point us parents in the right direction, has suddenly been dropped from the bill. I’ve read many of the governments responses to the concerns raised, though I failed to uncover concerns relating to a family key worker! I therefore wonder why it suddenly disappeared without trace, especially considering it was one specific aspect of the green paper most of us parents applauded? Too expensive an idea maybe?
10: The EHCP is for those with SEN between the ages of 0-25 years. However, what most people fail to realise is that this is not exactly true! Its pretty clear from reading the bill that once your child/young person leaves education then the plan will crease. This actually makes sense, after all the only aspect anyone really plans to fulfil is those provisions given in the EHCP is that of the educational part of the plan. As mentioned the area of health and social care will have no legalities attached meaning it won’t be worth the paper its written on. It will be this part that your child will probably need most when leaving education, yet it seems that more assessments from social services to obtain the help needed to help young people with the transition into adult life may well require that of you having to fight for it… Again!
Thanks for reading my thoughts and opinions on the Bill. I actually have some strong views on the sections covering adoption and children in care and have decided to express them in a separate post which I’ll try and publish sometime over the next couple of days.
Now I would love to pick my readers brains a little and ask… “What would be the most important aspects of the bill you would want to raise with the Minster?” Please it would be great to hear your thoughts.
To access the Children and Families Bill and associated documents, click HERE
Yesterday was all about reaching out, creating awareness and getting heard.
It was those important factors above, and a few more besides that encouraged me on the given tasks I had been set. Tasks I thought would never happen but was now about to suddenly surface.
The task was that of sharing our story with the world.
Two years ago I felt as if no one would listen. I was able to successfully bring every aspect of our story to light and people would take notice… Every aspect but this one! Now I’d been given an opportunity to change this.
It all began when the charity “Contact A Family” sent me an email with an attached survey surrounding the topic of “Illegal exclusions from school” Of course I had a lot to say on the given subject. I hoped that others affected would have too. The results could finally prove the extent of the problem and finally a campaign set in motion.
Thankfully this is what happened! The results have lead to the charity “Contact A Family” launching a national campaign highlighting the results of the survey entitled “Falling Through The Net”…
The charity’s Falling Through The Net survey, collected the opinions off over 400 families of children with disabilities or additional needs.
The results indicated that more than half (53%) of families have been asked to collect their child during the school day because there are not enough staff available to support them.
• More than half (56%) of families have• been told by the school that their child can’t take part in a class activity or trips because it is unsuitable for them.
• Almost a quarter (22%) are illegally excluded every week and 15% every day.
• More than half (53%) of affected disabled children are falling behind with school work and 43% feel depressed because of illegal exclusions.
• Half of parents (50%) are unable to work due to being called to school frequently.
The charity is making the following recommendations to improve the situation:
• Where exclusion is necessary, schools must follow statutory procedure to ensure decisions are lawful, reasonable and fair.
• The most frequently illegally excluded pupils with a disability or additional needs are those who have conditions which affect behaviour. Schools should take early action to tackle the underlying cause, and to put in support before a crisis occurs.
• Schools and teachers should work closely with parents to understand a child’s condition or disability and their extra support needs and ensure the child gets the help they need.
• Ofsted has an important role in identifying unlawful practice in the course of an inspection. School should be offered additional support to help them improve their practice. A grading of “inadequate” should be considered if schools continue to illegally exclude children with a disability, SEN or additional need.
Looking back through some of my blog post that I had written back when Little man was being regularly excluded from school (both officially and unofficially) I am reminded of the sheer frustration and anger this situation was causing for both myself and my child.
I’m reminded of them painful days full of tears and disbelief as we struggled to get of a never ending rollercoster of emotional terror.
My post remind me that I am in fact a much stronger person than I myself give credit too. Despite the forming of depression and a certain degree of hopelessness, I never once give up… even though I often found myself close to the edge I remained there by a thread… A very thin one.
It wasn’t just our family feeling the pressure, although at that specific moment in time I felt like the only one and that felling was a somewhat lonely one! There was many more like me and it was during those months that followed that I discovered many others like myself living in fear of the daily phone calls from their child’s school demanding they collect their child for whatever reason.
The Boy With Aspergers Facebook page which is an addition to this very blog has some 5,800 + members, many looking for the same answers, huge numbers struggling to work together with their child’s school in a productive manner. Instead these parents found themselves on our page asking the same question… “Are they allowed to continually request I collect my child from school and bring him home?”
Yes, they are…. But only if the statutory procedures are carried out by the school. Its when they fail to put these procedures into action to ensure such decisions are lawful, that they then become unlawful.
What happens to the schools who chose the latter? In most cases if not all… Nothing!
You see the Education Act states that it is a parents responsibility to ensure their child is educated once they have reached compulsory school age. If parents fail to ensure regular attendances AWOs (Attendance and Welfare Officers) likely step in and local authorities proceed to take parents to court if they fail to fulfil this parental requirement (for whatever reason). This can leave parents with a hefty fine to pay or even in some cases a prison sentence to serve. The thing is parents can be found guilty of an offence under section 441 or 441(a) regardless of the reasons behind the absences. Its simple if you are (a) the parent of the child and (b) they never attended school everyday regardless of the reasons, then that parent is automatically found guilty of 441 (the lesser charge of failing to secure school attendance) and will end up with a fine or find themselves on some type of parenting order. Its the law, plain and simple!
My point?
Your child’s school phones you up, sometimes on a daily basis and requests you collect your child as they are unable to contend with their challenging behaviour. You take your child home as the school requests you do, only the official routes are not put into motion… There is no exclusion letter setting out the reasons for your child’s exclusion. This therefore means that the local authority have not been notified and your child’s school have broken the law. Maybe you don’t know this at the time but when you eventually discover this to be the case you take action. Written complaints to governing bodies, LEA officials and ofsted! Yet nothing at all happens… Instead the school seem completely disregard it all and continue to operate in such a manner! How is this allowed to continue? If parents are taken to court and hit with hefty fines then why ain’t schools? After all laws are laws.
When I was called at the ridiculous hour of 8.30pm and asked that I keep my child away from school on the same day as a planned Ofsted visit I had finally been pushed enough. I took myself and child to the school and as he throw himself around the reception area in sheer anger and frustration I just stood demanding I speak with the visiting ofsted officer.
Next thing I knew she was stood behind me, placing her arm around my shoulder as she lead me to an empty class room for a chat. I remember it all becoming to much and I sat telling her through sobs and tears, the extent of the schools treatment towards myself and my child, paying particular attention to the ongoing illegal exclusions (including the one he was currently meant to be serving). I passed her evidence I’d collected, diary notes and some written thoughts from the little man himself. She agreed that the schools activity was illegal and promised to investigated. I tried making contact with the officer as the weeks turned to months but never had any luck. I was horrors with the schools final report and grade of a “Good” school. There was absolutely no mention on the subject. It even stated the schools understanding of children with SEN and certain disabilities. To say I was horrified is an understatement! I then lost every bit of faith I had left in a failing system.
Yesterday morning I gave a live radio interview to Paul Ross on the BBC LONDON 94.9 Breakfast show.
That same afternoon I found myself agreeing to a LIVE TV interview with SKY NEWS. Now I’ve done TV interviews before and have appeared on the news as well as sharing stories in national and local newspapers, but a LIVE interview was something new to me and admittedly as I stood waiting to enter the news room my stomach did an array of huge summersaults making me feel a tad sick!
I had to constantly remind myself of the pain we suffered… How awful life was for little man during those dark days attending mainstream school. I then collaborated a huge mass of messages in my mind, all surrounding the questions parents of excluded children would leave on our Facebook page messages I’d read on the Facebook page all searching for answers and support.
I just had to remember that by doing this I could help contribute somehow to making a difference for children like my little man and their family’s too! This combined with the great encouragement given to me from some great supportive people across social networks such as twitter and Facebook, was the virtual kick in the butt I needed to get in that news room and go for it.
Thankfully I was joined by Srabani Sen, Chief Executive of Contact a Family and the whole thing went pretty well.
So… Here’s hoping together we can bring much needed changes to the way schools deal with the challenging behaviour of children with additional needs.
Would be interested in hearing from others who like myself and many others have had fight this battle. If your interested in featuring in a post I’m planing on this subject please email me via the address on my contact page.
Links to media articles on this subject…
An article on the guardian blog from a teacher who says illegal exclusion needs to stop! Click Here
An Article in the guardian newspaper (I myself contributed too under a different name) plus it features the wonderful Mama Owl (aka Juile Sheppard) and her beautiful boy Logan. Click Here
Enable – The official Contact A Family Report featuring mine and little mans experiences Click Here
Contact A Family Article on their findings Click Here
I’m afraid I haven’t been given the permission to broadcast the Sky News Clip as yet. It was showed at 1:50pm on the 19th Feb 2013 live on Sky news (Sky and freeview). If you are a Sky account holder You maybe able to view this on Sky Go today if you would like to see it. I will share on the blog as soon as I have permission to realise the clip.
We all know that parenting children with disabilities or SEN is more costly for whatever reason!
That’s why I wanted to share some great resources designed to help such families save money and lessen the burden.
Help with the everyday cost of living
If your child is entitled to any benefits such as Disability Living Allowance (DLA) be sure to claim them as your child’s appropriate adult.
Filling out DLA forms can seem a daunting process but there is help out there. Many online sites have developed detailed guides to help you fill in the form to the best of your ability.
Once your child’s DLA application has been approved, fill out a Carers Allowance form (better still do it at the same time as the DLA form) This isn’t a great deal of money but does help to lessen the burden especially if you are caring full time and are not in the position to work.
Save Money On Days Out
Most major theme parks and attractions do offer special rates for those with a disability and their carer. I would suggest visiting your planed attraction online. All will need to have easy access to their policies relating to disability, access and pricing. Most of the large parks also provide special access passes so those who find it difficult to queue can use the rides exist. Note… Each park has its own policies but most will require you to bring a certain amount of identification as well as proof of disability.
Financial Support Towards Days Out & Holiday’s
The Happy Days Charity funds and organises holidays, residential trips, days out and theatre trips for children and young people aged 3 to 17 years with learning difficulties, physical or mental disabilities.
Individuals can apply for help with the cost of days out and theatre trips, while families can apply for funding towards a one week UK family holiday (though a supporting letter from a professional is needed).
Another charity that can provide assistance to families in need of a break are the “Family Holiday Association” who helps disadvantaged children and their families with family UK breaks. Applications must be made by a welfare agent exp… Social worker etc.
Below is a charity who have helped us fund days out to their attractions, such as Lego Land and Chessington. They have done this by providing us with complementary family tickets. Note… there was some talk last year of pending changes to the way the charity processed applications form families of autistic children so you should refer to their website for full details….
Merlin’s Magic Wand is a worldwide charity for children, aiming to provide magical experiences for those who are seriously ill, disabled or disadvantaged.
The charity has been created by the Merlin Entertainments Group, Merlin’s Magic Wand is a UK charitable trust, run by a Board of Trustees. The board manages the funds and makes awards to good causes in the countries in which Merlin operates. Find out who is eligible and how to apply by visiting their website.
Its also worth noting that Scope have a special inclusion service designed to help children and young people with disabilities access leisure activities and facilities within their own communities.
Save Money On Travel Costs.
Earlier in the week I spoke about the disabled persons railcard which enables the card holder and carer upto 30% each of their travel. There is a yearly fee of around £20 but its worth it as you can save a fortune. I also highlighted how those claiming DLA who receive the high care rate and live in london can normally apply for a disabled persons pass (which enables the card holder free travel in london) You should check with the local authority or DWP about accessing this service. Those who receive the mobility part at the higher rate are also entitled to a blue badge which could make parking at hospitals etc a whole lot cheaper and easier. If the person in receipt of the benefit is a minor the child’s carer is able to use the badge on the family car.
Those in receipt of mobility may also be given the option of a car provided for their use by a car dealer on behalf of the DLA. This means a brand new car is provided to the family but the cost is taken from the mobility part of their DLA and they will receive no or very little cash payment (but will have the car for as long as they are in receipt of the benefit with the option of upgrades).
Financial assistance for home improvements and mobility aids.
That Act Foundation gives grants to individuals and charities based in the UK. These grants are designed to enhance the quality of life specifically for those with physical and/or learning disabilities.
Grants can be provided for building (modifications to the home)
Equipment (mobility aids etc…)
Financial assistance towards respite registered breaks.
The local authority/council can provide help and assistance in way of a disabled facilities grant. This is designed to provide financial assistance to enable families to make adaptions to the home as to allow the child with a disability to continue living there. Note: for those under the age of 19 years this is not means tested.
The Variety Club is a really great charity who provide grants and assistance to provide families with vital daily items that often go unconsidered yet cost thousands of pounds every year. These include things like bath mats, toilet seats, car seats and more.
Family Fund Is another fabulous charity that provide families of disabled children grants and vouchers for essential items such as appliances and more. They can even supply families with vouchers towards holidays within the UK and aboard, as well as some of the cost towards driving lessons to make live that little bit more easier.
There are some fantastic charities out there, set up to provide families parenting a child with a disability advice and in some cases financial support. Its just finding them that seems to be the problem for some. Those listed above are just a handful, there are many others available to help and you may be able to find the right service for you by visiting the one of these online directories… Funder Finder Living Made Easy For Children
I’ve loved watching the Olympic games, cheering as GB take a number of golds! Yes, it was hard not to get the gold rush and therefore get swept up in the moment! Yet it seems I’m not the only one, there’s one or two who have simply let it go to their heads and therefore got a little dose of Olympic fever.
It seems that one person in particular has got so carried away with the excitement of it all and therefore felt the need to state to the nation how the UK government would be throwing more money in that big education pot so that children are given the chance to flourish when it comes to competitive sports.
Of course that person was David Cameron, so of course I rolled my eyes while mumbling the words “Arse Wipe” beneath my breath.
You see, Cameron has made a hell of a lot of promises since he got his dirty foot in the door. As time has run on his broken each, leaving family’s struggling and at breaking point as his made cuts to services that society rely upon.
My blood boils when I hear him making such statements. Yes, I believe our children should be encouraged to aspire into next generation athletes but I also believe that they also deserve the access to education as a whole! There are many children in this country being home schooled, sadly many are not through choice. This means sports are the last think on their parents overworked and worried minds.
Cameron needs to look at the bigger picture, the whole of the education sector in and throughout britain needs a good clean up and fast, because although it was bad before, since this man took to the house with the black door, it’s been simply diabolical!
Now… as predicted Cameron has actually just gone and shoot himself in the foot as it was revealed that since coming into Government the 2-hours of compulsory physical education that was put in place by our last Government has now actually been scraped and done so on the hush, therefore allowing the PM to collect his pounds, sticking them all back into the Governments big pot of savings, a pot mainly made up from the cut backs to services that are meant to be protecting our most vulnerable!
Now although I believe our children should be actively contributing in competitive sports I also believe that funding needs to be driven into other areas such as Special Educational Needs (SEN) Supportive outreach, training and courses for teachers as well as improvements towards providing education for those children educated other than at school. By this I’m vastly referring to off site education or Home tutoring funded by the LEA on medical grounds. The nations PRU (pupil referral units) are key examples. I’m sick of hearing local authorities claiming that those children in desperate need of support, can’t actually have it as there are little or no funds to delegate! Thankfully my child now enjoys a number of sports despite having Aspergers and past anxiety towards even the thought of one day actively participating in sports, especially that of contact sports. Admittedly this surge of improvement has to be the result of finally having left his former state mainstream primary school and then moving to an independent special school. The move has done well to demonstrated the impressiveness that comes with the reinstalled coincidence. However, you must not mistake my honestness for support of a crappy British PM. Despite my past difficulties with a string of teachers, I still find Mr Cameron’s latest statements to be harsh and unwarranted. He gives it all he has in way of a push and a shove in the direction of the states school teachers as he tries to convince the nation that his decisions to retract compulsory PE have been based around his concerns regarding today’s teachers lack of competitive ethos towards competitive sports as opposed to that of Government cuts. Now, I know what I believe!!
Little man met one or two exceptional teachers when he attended state maintained primary school. But as you know he also encouraged discrimination and bullying (mainly inflicted by teachers as opposed to children). Some may have been blinded by ignorance as a result of little if no SEN & Autism training whatsoever. I believe it’s these never ending difficulties between teachers and children that hold a much stronger case for funding. Most teachers are not in a position to freely campaign… But seriously, by you reducing funding over a period of time surely its obvious that there is little teachers can do to carry on being supportive towards physical education.
Sometimes I wonder what this man has going through his head, it’s as if he has this thing against working class families simply branding teachers in “state schools” as lazy… We’re not talking Mathematics but physical education (PE) most children will develop at their own pace when it comes to sport and those with passion will go far regardless. But it seems the PM thinks otherwise, with his suggestion of teaching kids to be more competitive, by creating a cultural change that replaces the “Everyone’s a winner motto” The PM needs to understand that for some children this just won’t stick! And for those others, well… A combination of the child’s determination, a teachers motivation and a good dose of funding can make it happen.
So… Maybe the PM should consider very carefully what it is his proposing before getting ahead of himself and sharing such plans and unconsidered decisions with the world! Especially when his not shared the changes his already implemented, including the removing of compulsory PE from education.
I mean come on,How stiupid must this man be? He must have considered the possibility that his secret operation would reveal its ugly head.
Cameron really doesn’t seem to understand his mistakes, never confessing that his decisions are just that, “His decisions” Franky, Instead of dealing with the bum error as it stood! the PM just made it a whole lot worse by continuously blaming teachers in regard to their lack of interest in teaching PE as well as encouraging children to get active and live healthy.
The only time I’ll ever give this man a thumbs up is when and only when we see him leaving number 10 closing the door behind him and heading in the direction of the job centre.
So it’s week two of the school holidays, things haven’t been too bad considering the whole lack of routine and the fact I feel like I’ve been ran over by a stream roller… We’re hanging on in there.
The weather has thankfully been excellent, there has been garden picnics and days spent in the paddling pool. Money hasn’t been great but we did manage a visit to Drusillas Park on Saturday.
I won the tickets to Drusillas park back in July 2011 from a competition I entered in our local paper, with the tickets valid for only a year there were just three days before they ran out. With this we loaded the kids into the car and headed of to the park that boast a zoo and large adventure playground.
I did some research to find out how autism friendly the zoo was. Harley wanted to see and of course take a ride on Thomas the tank engine but the prospect of queuing was something I worried about, the last thing I needed was meltdowns from the little man. From what I could see there was no special wristband programme designed for those with disabilities. However, this didn’t prove to be a problem in the end as the park wasn’t at its busiest when we visited!
Arriving at the park we discovered that their was a ‘Sensory Trail’ around the Park which incorporates a number of multi-sensory exhibits. You could obtain a sensory booklet and map containing information on the trail when first entering the park. Disappointingly we asked at the entrance gate and was told that this was only for children with a disability! I quickly explained that one of the children had just that and it was Little man we required the book for. The young man looked shocked and said something along the lines of “Oh Really” while eyeing the little man up and down as to spot his disability. The guy was obviously looking for some physical sign and was baffled when he couldn’t find it! He gave us the booklet nonetheless.
I don’t think he was trying to be rude, his ignorance was just caused by the fact he was uneducated on those disabilities that don’t have obvious physical aspects!
On a brighter note the attraction itself was fabulous. The sensory trail was fantastic, and Little man enjoyed the tactile aspects of the trail.
Another great feature to the zoo is the education that surrounds it. Everywhere you go there is something interesting to learn. There are many interactive learning activities to be found which means your given the opportunity to learn about the animals your seeing which makes it all the more interesting.
Myself and the children loved exploring the zoo, there was lots to see including a farm yard where children can pet the animals and learn where milk comes from by milking a mechanical cow.
But it’s not just the zoo that makes Drusillas park great, as well as some great play areas, inflatable slides and a children’s outdoor pool, it’s also the place to find Thomas the tank engine. Harley was extremely excited when he discovered his favourite blue engine, and even more so when Thomas took us for a short ride around the park.
There are some great areas to explore at Drusillas Zoo and they are right in stating that this is no ordinary zoo.
Little man and sister Alice-Sara Couldn’t wait to slide down the giant inflatable penguin slide. This however did come at an extra price of £3 for 6 slides. Ok, for us this was fine, after all we had won our family pass which would normally cost £68.00 for a family of 4. However if I had paid for the tickets I may not have been a little unimpressed at having to pay extras especially when there is more than one child involved! This wasn’t the only payable extra, others included crazy golf and panning for gold. On the whole, the majority of activities were included in the price.
The park hosts some pretty awesome adventure playgrounds such as
Go Bananas! A jungle themed attraction designed for children aged 6 years and under. This is located directly opposite “Go Wild” an adventure playground for older children from 7-12 years. This is perfect as it meant I could easily keep the toddler entertained at “Go Bananas” while the older two ran wild in “Go wild” both were visually inviting and fully equipped with some pretty spectacular play equipment such as banana boat swings and funky slides and climbing frames. All three children loved the area and the fact none were overly busy meant little man was able to play with little anxiety.
There is also a pretty cool indoor soft play area called Amazon Adventure
It includes jumbo slides, a large aerial runway, the cannon canyon, netted walkways, spinning poles, the anaconda run and a variety of jumping, climbing and sliding fun.
As the sun was shining we also took a deep in the pool to Harley’s delight before grabbing some treats for the children from the gift shops. I loved how they catered for all budgets and had soft animal toys starting at just a pound.
All in all we had a great day! We went on a Saturday and didn’t arrive till after midnight. The park wasn’t all that busy which was perfect for little man. Had the zoo been busier I’m unsure how autism friendly this would have been, especially if long queues came into it!
The park is however truly fab for the toddler and throughout August there will be a number of Special appearances taking place. These include Peppa Pig, Fireman Sam and the fabulous Mike the Knight. Note… This does mean it’s bound to be busier so some may want to go visit the park on quieter months (Harley not included)!
Well, many stood up and stated it would happen. Changes to the benefits system have continued to be introduced and slowly the cracks have began to appear!
Photo credit google images
Was the DWP ready for the consequences when some affected claimants didn’t know how to deal with them changes? Seemingly not!
I was sadden to read the story of how a man had set himself on fire outside a Birmingham benefits office (Job Centre Plus).The man who was reported to have mental health problems was reportedly deemed fit for work despite being seen as vulnerable, therefore sparking a change to his benefits. It’s said that he was unable to deal with such changes (which is also rumoured to have caused a late payment) therefore making him extremely upset leading to him dousing himself in flammable liquid and setting himself ablaze.
The man was taken to hospital with burns to his legs.
This shows the sheer frustration the benefits system can cause to those who have mental health problems, disabilities and medical conditions. The cuts are affecting some of britain’s most vulnerable people and although I believe there are those that claim sickness benefits such as DLA when they shouldn’t I believe the Government are going the completely wrong way about fixing the issue.
This man was just one of many claimants forced to cope with huge overhauls within the system because he suffers from an “invisible” condition therefore giving them the green light to hit him with the back to work stick. It’s quite apparent from his actions that this isn’t a person mentally able to deal with the pressures the workplace may provide. Yes… People make mistakes, but medical assessments should be the best and when someone is very unstable for whatever reason it’s hoped that such professionals are able to pick these things up! After all this is not the first incident and won’t by any means be the last! Earlier this year there was reports of an attempted suicide in a Liverpool benefits office! Yes, these changes are really hitting the wrong people and this could lead to the government actually having blood on their hands.
In the past the Government has claimed that 600 million has been overpaid through the DLA’s current system. They claim that they are not trying to reduce the benefit or the number of people claiming it, but instead trying to reduce the growth rate in the number of claimants. Though since such reports were made we continuously hear about claimants losing out, societies most vulnerable people being encouraged back into the workplace before they are ready.
I recently received Little man’s DLA form. It seems that his current claim will run out come September requiring us to reapply. The letter makes it all seem so bloody easy (you know the type, don’t worry reapply and the benefit will continue as it always has done). Except I know that the system is under pressure to make them cuts and they are looking to save money any how they can. Little man needs his DLA as as much (if not more) than he did back in 2008 when he was first awarded it. The thought of having to fill out the huge form and endure the whole sodding process again, fills me with dread.
If you have been affected or fear you will be affected by cuts to sickness benefits (especially that of DLA) I’d love to hear your thoughts?
So, yesterday, I appeared alongside little man, in one of our local newspapers! This was for two reasons, #1 in celebration of my success at becoming a Mad Blog Awards finalist for the Second year running, and #2 the governments (Department of Education) update on its pending plans for Special educational needs (SEN) known as the “Green Paper – Support and Aspirations”
It’s this I wish to expand on, here on the blog today!
OK, the government published it’s progress report on the above paper, earlier this week. Reading the report I still find myself worried on a number of different levels.
Now, although I’m up for the whole idea of children with a disability or SEN receiving support up until their early adult years (25 years of age) the overall majority of this progress report still strikes me as worrying.
Excuse me but I can’t seem to shrug this niggling feeling I have at the back of my mind, that this is either some kind of money-saving tactic, a way of shrugging a degree of responsibility on to somebody else, or just an ill thought out process! What’s more it’s in my opinion that some of the most important issues remain unresolved or somewhat unclear let alone progressed!
Actually it would seem that some of these proposed changes, are anything other than changes at all!
For example: section 2 giving parents control!
“parents will have a clear Choice of school with equal rights to express a preference for any state funded school”
Ok, so we can make our preference known and the local authority has a duty to meet those preferences… Right?
Hang on a minute… That is unless
#A It’s unsuitable to the child age, aptitude, ability or sen
#B Incompatible with the education of other children of whom the child would be educated
and lastly… the all important factor, the get out of jail free card…
#C An insufficient use of resources
Mmm… Isn’t that how the system is meant to be working already?
Does this system actually get families anywhere currently? No
That’s why I thought we were meant to be changing it!
Scanning through the entire proposal, it seems a lot of the stuff we need changing isn’t actually changing at all, wheres the things we don’t want changing (just slightly amending) are being scrapped altogether!
These seem to be the things us parents cling to when trying to obtain efficient education for our children (remember the law states efficient is all our children require)!
A great example of this would be the graduated approach (School action & action plus) which is all set to be removed leaving parents of unstatemented children quaking in their boots, and rightly so!
So, why has the government made such a decision? This is due to their worries concerning labelling or should I say “Over labelling” Although to some degree, I agree that this is a problem to some extent, I’m also worried that this will stigmatise those that have a genuine need for additional support, support that only that of a statement can offer.
Yes we’re hearing about extra funding to train sencos and teachers but is this really enough assurance for the parent of the unstatemented child, the one that has no legal rights if support is offered or not?
We just can’t categorise these children, it’s not one size fits all! Regardless of a child’s disability, special educational needs or even attainment, every child is different! Not every child with autism requires SALT, not every child with dyslexia requires extra TA support. I remember my son always being compared to a fellow child with Aspergers in his “then” mainstream school! My child badly needed extra support with speech and language mainly due to his literal understanding of language, but because the other boy didn’t require such help, I was told little man didn’t either! I fear many will be over looked just as they are today with the scrapping of school action and school action plus. Both needed to be amended, as to allow the parents more confidence in the system, but this… I cannot see the benefits to the parents, just the governments budgets as the numbers of children with statements (soon to be EHCP) falls the piggy bank belonging to the government will fill up nicely!
I remember what it was like fighting for that statement, it was tough, I really don’t see much in the way of making that fight any easier when reading this proposal.
Looking at how the government has so far messed up in nearly every other area, it looks like its gonna be a bumpy ride ahead, so hold on tight parents, you can’t afford to let go.
I thought given my recent post regarding the Merlin’s magical wand charity and the possible discrimination against children on the autism spectrum, I should share with you all the latest developments
Today Merlin’s Magic Wand Have made a statement on there facebook page. I visited the page only to discover that all comments have been removed and this has been left in there place.
In the light of recent conversations on this site and elsewhere we wanted to clarify the objective of Merlin’s Magic Wand – which is very simple. We know that there are many children facing difficulties of all kinds – illness, disability or social issues – who would benefit greatly from a day at one of our attractions, when they can just have fun with friends and family, and get away from everyday concerns. The aim of Merlin’s Magic Wand, through the provision of tickets and grants, is to offer this opportunity to families who might not otherwise be able to visit us.Unfortunately our resources are not unlimited. As more people have become aware of the work of Merlin’s Magic Wand, and the number of individual applications has grown, we need to explore new ways of managing these. We believe that in the future the best way to reach the maximum number of different children will be for us to increasingly work in tandem with specialist organisations – charities, support groups and educational and social services departments – who have direct access to those who would benefit most, and the communications channels to spread the word. More than this, given our aim must always be to give as many children as possible a magical day out, rather than the same children an annual outing – we also believe that working with partner organisations will better ensure this. Finally such partnerships will leave our small dedicated team more time to develop our activities into new areas – taking the magic out to those children who will never be well enough to come to us. We make no apologies for this. That said nothing will change until we have alternative arrangements in place and ALL eligible children should continue to apply through our websitewww.merlinsmagicwand.org, where full details are available.
We would therefore like to take this opportunity to apologise unreservedly to anyone who was confused by some recent communications, or who interpreted them as in any way discriminating against children with autistic spectrum disorders. That was certainly not our intention. The National Autistic Society is undoubtedly one organisation with whom we are in discussions, but with the express aim of making these tickets more widely available and certainly NOT to limit access for those with autism or any other issue. We would also like to reassure anybody that might be concerned that if children are fortunate enough to be allocated tickets as part of the Merlin’s Magic Wand scheme there is, and never will be, any charge for these.
We have taken very seriously all of the comments posted over the last couple of days relating to this subject, and we hope that this statement will reassure you all. If anyone still has concerns however please feel free to contact us direct offline on mmw.enquiries@merlinentertainments.biz.
Furthermore the National Autistic Society have also left this update on it’s facebook wall.
National Autistic Society
Hi all,
We’re aware some people have had questions about our involvement with the charity Merlin’s Magic Wand. We hope this will address those concerns.
—
Children with all disabilities, including those with an Autistic Spectrum Disorder, can apply directly to Merlin’s Magic Wand for free tickets to Merlins’ 25 top UK family attractions.
The NAS is currently only exploring ways in which we can help Merlin’s Magic Wand reach more families who have children with autism.
The announcement by Merlin’s Magic Wand of our involvement was premature and once we have finalised precisely how the NAS will be involved we will let you know.
Both the NAS and Merlin’s Magic Wand want to reassure anybody who might be concerned that there never has been, nor will there be any charge for tickets allocated through the scheme.
Hope this helps clarify things and thanks for everyone’s patience.
Image via Wikipedia
So there you have it, Merlin’s should have thought twice before sending out such an email, they do not apologise and claim they did not mean to come across as acting in a discriminating way! Sadly they did and in my view, unless Merlin’s change the application process for all applications then they will be continuing to act to do so!
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