Tag Archives: facebook page

What Children With Aspergers Really Want For Christmas

5 Dec

Now, I’m not about to go all soppy by stating “That all our children with aspergers really want for Christmas is an appropriate school place and less judgement”because that wouldn’t be true.

Like any child, children with autism and Aspergers have their own interest, hobbies and Christmas wish list.

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Every single year in the lead up to Christmas I find that many new readers find my blog as a result of googling terms such as “What to buy the child with Aspergers for Christmas” or “Gift ideas for children with autism and sen”

Every year we do the ‘Santa’s Little Helpers’ feature where the children showcase and review some toys. This year I’ve been a bit busier than other years so the feature has been on a much lower scale than previous. However, any review that little man does tends to get pretty high page views for the above reasons.

Over the years little mans Christmas list has been anything other than average… Its featured many a bizarre item, from padlocks to safes, batteries to working shop tills. One year we even got a request for a whole crate of fizzy drinks.

This year as he approaches his teen years the list seems somewhat more “normal” in terms of its contents. Well, that’s except for the request to hang out with Drew McIntyre his WWE idol and that of a life sized 4D simulator (needless to say both requests are somewhat out of my reach)! As you can see, Little man isn’t the type of child who scores the Argos catalog for ideas.

With this, I thought it would be interesting to pop over to my Facebook page “A boy with Aspergers” and ask some of the members there what their child with Aspergers has requested for Christmas whether this year or in past years.

Its important to remember that despite any diagnosis, all children with Aspergers have different likes and dislikes, yet unsurprising the results show lost of similarities.

Firstly – LEGO seems to be that of the biggest contender, especially when it comes to boys on the spectrum. Many will know that my little man started to discover the joys of LEGO a few years back and as a result it featured heavily on last years Christmas list and has subsequently made a return this year.

Many of the members over on the ‘A boy with Aspergers’ Facebook page state that their child has either asked for Lego StarWars, Lego Hero’s or just LEGO full stop.

One member told me “Anytime people ask my son what present he wants for any occasions they will get the answer in number form. Because my son’s world revolves around LEGO and its not a ‘Lego truck’ its the model number 4435 or whatever the number maybe”

Other answers highlight that younger children on the spectrum have developed obsessional interests in super heroes with Batman being one child’s special interest for the past 6 years. This child’s Christmas list consists off Batman Merchandise and again LEGO.

It’s also apparent from reading members replies that as their children have aged many of the their requests have changed and now focus on technology. Xbox and PS3 appears a number of times with one member mentioning the new Book of Spells which little man is currently reviewing and thinks is wonderful.

Some members stated how their child wanted to connect with others online to play games over that of the PS3 or Xbox networks. I can relate to this as since little man got his PS3 in October for his birthday, he has discovered the joy of connecting with friends (mainly our extended family) to play against them on FIFA or WWE.

Another big contender was of course the IPad. Is it any surprise? Even I’m wishing for the latest iPad.

Most of the members on the page that took part in the discussion, are parents to boys on the spectrum but a few parents to girls were also happy to share their daughters wish list. One of the page admins shared that her daughter has actually asked for a fridge for her bedroom where another member stated that her daughter wanted money so she could bank it. Yes, this little girl wants her own farm in the middle of nowhere and is already saving for it (and no, I’m not talking about a plastic toy farm but that of an actual farm). Another little girl has asked for a unicorn pillow, slippers and a Star Wars DVD box set (which seems to be popular with both the girls and the boys).

Another item that reappeared more than once was that of spy items such as spy pens and night vision goggles. Again, I can relate as Little man is in love with a spy watch that has a dictaphone and secretly video records (yes, it does actually tell the time too)!

In terms of the more bizarre items here’s some that made me giggle…

Magnets (boy)
A Custard Doughnut (boy 5)
Feather Duster (little girl)
Farm In the Middle of Nowhere ( girl 11)
Cell Phone & Pocket Knife (boy 5)
Electric Leaf Blower (boy 6)
Pyjamas With Feet (boy 9)
To Be Just Like Santa Himself (boy)
Lottery Ticket/Scratch card (boy 7)
Fridge in bedroom (girl 10)
A white keyboard without computer (boy)

Biggest Contenders

LEGO
MOBILE PHONES
IPADS
SPY TOYS
STAR WARS
WWE
TRAIN SETS
PS3
XBOX
LAPTOPS
LASERS
HOTWHEELS
HARRY POTTER
SUPER HEROS (Batman etc)
SONIC
JAMES BOND DVDS
SKYLANDERS

Ooo… I almost forgot one… Mindcraft seems to be on everyone’s most wanted list too!

Special Thank You – This post was put together with the help from members of the Facebook page ‘A Boy With Aspergers’ Thank you so much to those who took part in the discussion.
Claire- Louise. Xx

#HAWMC DAY 13 – The 10 things I can’t live without!

13 Apr

The health activist writers month challenge (#HAWMC) is in full swing and I’m really quite enjoying the daily prompts. However, I wasn’t overly keen on today’s but given this is meant to be a challenge, I didn’t bail out.

 So, when asked what 10 things I couldn’t live without, I got my thinking cap on…

 

1) My Children: Obviously the first thing I’ll list is this! My children, they’re my everything, my who entire life, the reason I breath. A life without my kids truly isn’t worth living!

 

2) Friends and family: My mother and father who reared me and made me the person I am today. Friends who have been amazing through some of the most difficult times of my life… I’m truly thankful to you all, if only you all knew how much!

 

3) Health: I want to be around for many years. I want to watch my children grow and evolve into adults, finish education, get there first job, get married and invite me for Sunday lunch.

 

4) My blog: How superficial you may think? But this is my outlet, a place to let of steam, share any happiness and achievements along the way. It’s got me through tough times, provided a connection to something I never knew existed. Who would ever think a blog could save someone? It saved me from insanity, that I’m thankful for!

 

5) Passion: It’s what drives me to do the thinks I do. To live without passion would be like living without food and water for me!

 

6) Dreams: Whether they amount to anything is totally irrelevant, they keep me smiling and give me something to aim for… surely we all have a dream?

 

7) A Voice: No I can’t sing (I actually recall my mother telling me I sound somewhat like a cat crying out in agony) but it does give me a way to speak up when it comes to the things I believe in! It’s helped me to raise awareness for autism and aspergers as-well as a number of other charities and campaigns. I’ve realised how powerful a tool one persons voice can be, you’ve just got to know how to use it!

 

8) Technology: I can just imagine my grandmother shaking her head if she was alive to read this! Yes, she would likely tell me and in no uncertain terms, that In her day people spoke to each other face to face, not all this texting and emailing rubbish! But we are now living in a modern world, one where my Mac and my iphone have become something of a second skin. These tools along with the rise in social networking sites have provide me with more than just a way to communicate with those out of reach but has also provided me with a platform to raise awareness for something I believe in and feel passion towards! The facebook support page now has over 5,000 members and continues to grow, I love that it’s become a place for parents like myself to gain support and friendship with those who relate most. I’ve also found a place to release inner creativity, experience things I otherwise couldn’t or wouldn’t have! And along the way I’ve meet some amazing people, some Im pleased to have become firm friends with.

 

9) A Little Me Time: Sounds a strange one but without it I’d go absolutely bonkers… I’m sure of it! I may not get a whole heap of it but what I do get I fully appreciate it.

 

10) Memory’s: It’s memorise both good and bad that help me mould my future. I am able to learn from past mistakes, avoiding any recurring undesirable situations. Those help memories keep me smiling when times are difficult… Memories really do help create a more positive future. 

And an extra one for good measure…

A sense of humour, the ability to laugh at yourself. Life is a serious affair but a bit of laughter is good for the mind!

 

Post 13/30 #HAWMC set by wego health

Update from Merlin’s Magic Wand & the NAS

24 Nov
An attempt at a discrimination graphic.

Image via Wikipedia

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.

Applications for tickets can be made through their websitehttp://www.merlinsmagicwand.org

Hope this helps clarify things and thanks for everyone’s patience.

National Autistic Society

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!

Watch this space!

Win with Santa’s little helpers

20 Oct

As part of our Santa’s Little helpers feature we have been running some awesome competitions.

This time it’s the turn of the fabulous Wooden toy shop who have allowed me to pick a lovely prize from their online store for you lucky lot to try to get your mitts on.

 This was such a hard task, there are so many beautiful toys on display and a great load more has been added for Christmas coursing me excitement and confusion all at once.

 After a long time browsing, I finally decided on a toy with a purpose, one that will suit every child but will be extremely beneficial to a child with autism and their family as a whole!

 So… Here’s what you can win:

 Melissa & Doug wooden magnetic responsibility chart

 Catch children in the act of behaving well, reward them, and watch those appropriate behaviours multiply. Open the fabric hinged boards to reveal a behaviour chart on one board, while the other board keeps all the magnets close at hand. A sturdy cord is attached for hanging. Dry-erase white board and 90 magnets including responsibilities, positive behaviours and rewards.

 I love Melissa and Doug and this kind of product is the reason why. All kids do great with visual stimulate and prompts and that’s why I think this is a toy that appeals to everyone.

 HOW TO WIN.

 To be in with a chance of winning this awesome prize you must…

COMPULSORY ACTIONS

 Like the wooden toy shop on Facebook leaving the following comment.

“I want to win with A boy with Aspergers and the wooden toy shop”

Then to validate your entry, leave me a comment to tell me you have done it leaving a twitter id, email or other means of contact

 ADDITIONAL EXTRA ENTRIES 

You are welcome to engage in as many additional entries as you wish but you must still carry out the compulsory above the action above.

You must leave an additional comment for every action taken or entries will be void!

 Follow the blog via Network blogs

 Follow me on twitter

 Rate this post by using the stars above

  Tweet, “I want to win with @clairelouise82 & @woodentoyshopuk adding the url to this post

 Comment on another review post or competition

Subscribe to my blog via email by using the subscribe button at the top right of this post.

 Use the facebook share button on this post to share this competition

 Click the Like button in this post to like the competition

 Follow the wooden toy shop on twitter.

 Do not forget to leave an additional comment for each action you have taken in order to validate your entries. You must also leave a contact whether it’s an email address, twitter id or other. 

The competition will run in-till the 11th November closing at midnight. The winner will be contacted by myself to obtain a postal address, which will then be passed over to the lovely people at the wooden toy shop in-order to dispatch your prize. 

This competition is only open to UK residents and the winner will have 5 days to contact me following the official notification post that will go live shortly after the competition winner is drawn at random.

My contribution to the world of SEN

11 Sep

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

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

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

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

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

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

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

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

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

Section two: ‘Tribunal, the right to appeal’

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

Section Three: ‘Preparation and the hearing and decisions ’

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

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

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

Section five: Disability discrimination

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

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

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

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

A little bit of inspiration

23 Jul

As I sit here happily, typing while listening to some Mary J. Blige, I think back to a time when things weren’t so pretty!

This time last year I saw myself battling and fighting for my sons rights. I was at the start of a discrimination claim against my Sons old mainstream primary school and was still, like thousands of others desperately trying to obtain a statement of special educational needs so my son would get the support needed in a school better suited to his complex needs. These two battles pushed me to the core, not only was I becoming stressed both physically and mentally, so was my son. I knew I couldn’t give up, not when my son was being treated like an outsider and even faced the prospect of permanent exclusion. He was never allowed on trips or was hidden away during inspections or when the parents of prospective pupils toured the school. He was highly misunderstood and it was slowly killing me! I was never quit prepared for what it would take to get myself through them hard and deliberating days. I had heard some talk about the battles fought to obtain these statements, get children into schools that catered to their needs, yet you never quite realise the true extent of what it takes out of you till your neck high in it! Honestly, I cannot begin to put this into words, those parents of children with SEN (special educational needs) will know what I mean when I say, “It could have quite possibly caused me to experience a full on mental break down! There were tears, shit… far to many tears, appointments, meetings, exclusions and phone calls, over and over again. Some days I was close so very, very close to giving up! Yes, I would often vacillate between giving up or pushing on! I remember all those voices, the ones that told me, “Don’t give up Claire, Its worth it in the end.” Yet it made no difference to me then! That light at the end of the tunnel was nowhere in sight.

It’s one year later and my children have just broken up from school! Unlike last year, I don’t dread the day my son returns, not now he will be returning to a better place. Yes, as many know already, Little man is in an Independent special school for children who have autism/aspergers as their primary need.

Little man spent so long isolated in mainstream, then home schooled before finally getting a great tutor. However he was still without a peer group! I really did think that it would take so much longer to settle in this new school than he actually has. He is already up one sub-level in his reading and earned himself a fantastic school report. His school have told me his a, “Great lad and a lovely boy!” For me this is amazing and almost brought me to tears. Silly… I think not! If you have ever watched your child’s education and self confidence fade away, then you will understand this feeling of joy I’m now feeling inside.

I know there are still hundreds of thousands of parents still fighting that same battle and by god do I empathise! The experience affected me in such a way that in November last year I started a voluntary role advising parents on their children’s educational rights and helping them through the tribunal process. I also started a Facebook page a few years back that now has over four thousand members, parents like me and young people on the spectrum comment daily about the lack of support received from the system. I hear our own story repeated over and over, so similar in so many ways it’s scary. I try and encourage them parents not to give up and remain strong for themselves and their child, yet I know that like me they must think, “It’s no use!” But those who have read my story over the past three years would have read some of my most testing moments, from pre diagnosis to full diagnosis, court cases brought against myself for non school attendance and the battle to bring Little mans discrimination at school to a final end. You will remember the posts that I wrote through tears at the inability to get my child what he needed,  “A Statement” and the tears I cried for once I had succeed it was hardly worth having. Then there’s the fight for an amended statement and a long search for a place in a special needs school. Gosh the sheer pain I felt discovering that every school the LEA approached just refused him, stating his needs could not be met, No one would give him a chance! The LEA would not agree to my parental choice of an independent special school, so… I fought and fought and with all my strength giving all I had, we made it… we finally made it here!

 Achievement slips and certificates replace the dreaded exclusion letters. Phone calls are made and emails are sent containing words of prise! Although his had some difficulty days, those around him understand why, they remain consistent,  they just get it! This was something I found difficult to vision a year ago. I never dreamed I would be displaying a picture of a smiling Little man at his new school, Yes that special school I fought for! I never imagined that I would proudly post a picture of all his rewards. This wasn’t because a lack of faith in my child, but a lack of faith in a system that had continually let us down.


I’m not stating we will never face a difficult moment again, and will always now remain overcautious. I’m sure we will have our ups and downs, but for once, for the first time in a long time, I feel we have achieved something amazing. My son is writing, literally putting pen to paper, something he had refused to do for a whole year! Things like these are the little things a parent of a child that has no difficulties could easily take for granted. For us these are reasons to celebrate.

Do you know how long it is since my son did a parenting and actually enjoyed it… To long! When he brought this painting home today I was incredible proud, so much so I could have burst.

I have a few reasons why I decided to bring you this post today. I of course had a desire as a mother to shout from the roof tops, “Check it out my sons star of the week at school” (the worlds of the proud mother). My second reason was to post in the hope that all my readers, the ones who are in that dark place I was in a year back, take some inspiration from it, they remember my story and think, “If she can do it, so can we!” and lastly because today is Special Saturday

I wish every single one of you the best of luck, stay strong, I’m always here to listen.

SPREADING THE WORD

5 Feb

Just a short post everyone.

Wanted you all to know that I have now started a facebook group and Fan page.  Both are doing well and I’m enjoying  raising awareness for ASD. Both are linked to the blog and I have found it a great way to get more parents reading and sharing their story’s on autism.

Everybody is welcome to become a fan or join the group. All that is required is you’re a facebook member. You are all welcome to add the link to your blogs, notes, videos and more. The best part about being a member is that you help me spread the word and raise awareness for Autism & Asperger’s. We owe it to our children to be their voice and speak out for them because who else will ?

If your interested both group and page are called A boy with Asperger’s

If you have trouble with the link then just type A boy with Asperger’s into the search page on facebook.

Updated on the 20th-04-10

Just wanted to update the blog readers on the success of the facebook group & page. It’s going extremely well, They both are a great place to meet and chat with like-minded people all with an interest of autism & Asperger’s. We have fans and members that are autistic, families, friends, and professionals. We have many active and interesting discussions taking place on our group Which has near on 800 members and the fan page has nearly 1300 members. Both the group and page are very active with new wallpost and links coming in daily. If you want to be a part of it then come join us for a very warm and friendly welcome.

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