Tag Archives: support

A Bright Star No Longer Hidden

22 Jun

The annual review, a time for meeting with your child’s teachers and discussing progress, struggles and ideas. A meeting centred around your child’s special educational needs and the statement they hold.

Last week it was that time, the time for the Little man’s second annual review since attending his special independent school specifically for children on the autism spectrum. Lately, Little man’s attendance has been a little off the wall! Despite his love for his new school he continues to struggle to sleep of a night, often getting just a few hours sleep or none whatsoever. As one can imagine, mornings are becoming one huge battle us! For this reason alone I expected to hear how my son was falling dangerously behind that of his peers, what with his last school (mainstream primary school) insisting he had a reading age of 7, reception age writing skills, poor understanding of science and history, plus 2 levels below in maths and more besides. He was 10 at the time and I protested that my son wasn’t this far behind, especially in maths. His bedroom wall looked like some kind of number puzzle where he would cover it in mathematical problem solving and coding to a complex level (one even I struggled to understand)!

You see it was my conclusion that he was much brighter than he let on, but wasn’t showing this due to his unhappiness while attending a school who seriously struggled to meet any of his needs, both educational and developmental. It was during this particular annual review meeting that I realised just how right I was back then.

Here it comes… A seriously proud mummy moment…

Little man is two levels above his expect national curriculum level in maths. He is in year 7 and currently has a level of a child in year 9 on his way to year 10.

His also above in PE, Reading and more besides. He science levels were that of his expected age. English as a whole is also what is expected which just goes to show that my boy and any other child on the spectrum has the ability to shine given they are in the right environment to do so.

He has a great new system in which he can remove himself from the classroom to shake of any problems and excess energy with a run around the playground. He only has the ability to use his “Get Out Of Glass Card” twice for each lesson and teachers have reported that sometimes he finishes class having not used one. This may seem like such a minor thing but to a mum like me its pure music to my ears.

He also has a great reward system and school are working hard to try and discourage his swearing. Despite episodes still happening on a daily basis the improvements are slowly taking place and little man’s learning a little self control.

Proud… Oh yes, seriously proud! When your so used to being told the negative when it comes to your child’s education, you forget what its like to hear anything positive. This was a great example of this, it was the proudest I’d felt for a long time. I just wanted to shout about it from the roof tops.

Was I tempted to take a little walk through them office doors of his once mainstream school, the one in which his younger sister attends? Did I feel to wave his report in the air while shouting “Yer… Get a load of that! Thats my boy they are writing about!” Um maybe I did, just a little…I can’t lie. However, I don’t care what was once said! All that matters is that I have always believed in him even if those others who should have, instead made it their mission to write him off as a lost cause!

Well… Eat My Shorts!

My boys a star, a star that shines bright because his no longer hidden.

So, if you have a bright star that is currently struggling to be seen through the clouds then don’t give up on them! Believing is the key to your child’s educational success and as long as you believe others will follow. Never give up, fight for them to be seen as the star you know them to be.

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Get The Answers You Require From The Talk about Autism Family Support Live Q&A Session

18 Jan

As a parent who has a child on the Autism spectrum I know how frustrating it can be looking for answers. Thats why I’m really excited to share some excellent news with you… Ambitious about Autism the national charity dedicated to improving opportunities for people with autism, who run an online community called ‘Talk about autism‘ have come up with the Family Support Season of live online Q&A.

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The charity has come up with 4 discussion topics that parents with children on the autism spectrum voted upon late last year. The whole programme has been designed to offer both parents and carers professional advice from leading experts within the autism sector.

Each of the four sessions will take place live on the web over at the Talk about autism website. Finally parents will have the opportunity to get some of the answers they have been searching for whether its about challenging behaviour or socialising with peers the parent support season’s Q&A sessions will do its best to answer those questions.

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The first session has already taken place back on the 16th January. The session covered the topic… ‘Getting the right support at school’ Nonetheless you can still read the entire transcript on the evenings topic over on their website. The session covered areas such as access to education, statements of sen, exclusion and more. The transcript is packed full of great advice what with the specialist advisers being Jill Davies, Manager of the Special Educational Needs (SEN) Helpline at Contact and Family, and Steve Broach of Doughty Street Chambers, who is an expert on the rights of ‘children in need’ and disabled adults. This was the first of four live sessions and a great success. Its my guess the remaining three will be just as valuable in the advise they offer.

The second live Q&A session is set to take place on the 30th January 2013 and the discussion topic is that of ‘Understanding & Managing Challenging Behaviour‘. The evenings professionals will be Dr Emma Douglas, a Senior Applied Behaviour Analysis (ABA) Consultant from TreeHouse School, and Richard Hastings, Professor of Psychology at Bangor University in Wales. So, if you are currently experiencing problems with challenging behaviour and are looking for advice this seems like a pretty good place to start.

As a parent to a young man with Aspergers Syndrome we’ve experienced our fair share of meltdowns and aggressive behaviours. Little man is 12 now and I often worry he doesn’t know his own strength when hitting out at other. We have had some particularly bad mornings before school when little man has thrown punches in my direction. His violence scared me! With a frightening temper I had to sought help but it didn’t come easy. I just wish there was something like the live Q&A session available back when I needed it. This topic will sure to be a life line for parents all over the world.

The remaining two sessions after that will commence on the 13 February 2013 & the 27 February 2013.

These sessions will be as follows…

Puberty, sex and relationships (13th February 2013)
Experts for the session: Lesley Kerr-Edwards, Director of Image in Action, and Professor Jahoda, Professor of Learning Disabilities at the University of Glasgow.

Supporting your child to socialise and make friends (27 February 2013).
Experts for this session: Jennifer Cook O’Toole, education specialist and author of The Asperkids Book of Social Rules – the Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger’s Syndrome, and Andrew Swartfigure, Senior Applied Behaviour Analysis (ABA) Consultant at TreeHouse School.

Well, I’m definitely marking the 13th February 2013 in my diary. This is a topic that I myself have a number of questions in need of answering (googling can only provide so much)! My 12 year old is fast approaching puberty and don’t I know it! Puberty and the issue of sex is a hard enough topic for any parent to face but for those of children on the autism spectrum, it is an area of constant worry and struggle.

All sessions are live and will last one hour. Each live Q&A will commence at 8pm and finish at 9pm on the dates given.

To receive a reminder about any of the live support sessions visit the website and sign up for a reminder by email.

So, there you have it! Four great topics all live and interactive. How about popping along, maybe get a specific question answered or just follow the thread to see what others have to say. Don’t forget, all sessions will appear as transcripts following the live event allowing those of you who can’t make it on night, the opportunity to have a read. Who knows maybe you’ll still find the answer to that question you need answering.

Would love it if readers could share this on there chosen social networks. By reaching out we give parents the opportunity to gain the support they desperately need.

To find out how Live Q&A sessions work click Here

Disclaimer… This is a sponsored post for the autism charity Ambitious about autism. All words are my own.

Peek A Boo

23 Nov

A beautiful blonde two year old toddled around the house, she giggle excitedly as I removed my hands from my face to shout the words “peek a boo” Her laughter electrifying, my love for her magnified and displayed on my face in the shape of a smile, so big it left little room on my face for anything else.

But then she feel ill and my smile melted, replaced with a thousand tears of heartache… Tears too heavy for a 10 year olds cheek to carry.

Cancer robbed her of many years of childhood, in its place was chemo, Radiotherapy and missed birthdays at home. Her bed not slept in, her duvet untouched. Her home a side room on a children’s ward, that despite the balloons and teddies galore, it wasn’t home… It was just a room for a child to poorly to be home with me, her big sister, playing peek a boo.

Yes… The diagnosis of cancer was nothing but bad, bad luck! It couldn’t be avoided! There was no one to blame!

My mother, devastated, told the doctors they must do all that they can! If that meant medicines that saw her thick beautiful golden locks fade away, then so be it!

If radiotherapy meant she may just have a mild learning disability in the future… Then so be it!

If it meant she may never have children of her own… Then again, so be it!

At least she would still be with us, breathing the air that I breathe! She would still be there to play peek a boo, to hold hands as we grow up! To stand beside me on my wedding day… to drink tea & grow old with me . She is my little sister and there was no questions need answering! She just needed to stay here with me…. And she did!

She did just that, she fraught the cancer that was attacking her little body and even though she was left with a mild learning Disaibilty… Every other possible scenario evaporated, and I mean every one of them!

You see, almost 3 years ago, she gave birth to the daughter we had always suspected she would never have because of the treatment she underwent. Suddenly it felt like god could not be more giving when he gave her the beautiful gift of a daughter, one that she adores.

Finally bad luck had been banished or at least I thought it had… We all did.

That sister of mine who had already been through so much now found herself in the hands of evil, as she became the victim of domestic violence. Love was blind, she struggled to break free because of love, control and power stood in her way.

She was under his spell but eventually broke free for her child’s sake.

Needing help as a new mother and a single one at that, with the council not offering her a home and the prospect of homelessness and possible conflict from her partner she reached out for help in a direction that would only later turn out to be the direction she should have avoided at all cost.

The Social Services!

Only now has her true nightmare bargain… this evil is worse than any cancer! It is one we are powerless to stop it!

From a cry for help to a cry of pain as the Social Services (SS) announce after a year or so of involvement, that they want to take her daughter away… Assess the family as alternative carers if she doesn’t agree, or those carers fail the assessment, an interim order will be shougt and that little girl would be so wrongly snatched away from a loving family home!

Now… I can imagine what you are reading this thinking! SS don’t take kids for nothing. I used to think the same! I honestly never needed to think about it much! I’d read in the paper about targets and bonus, that of forced adoption and secret family courts… But it wasn’t part of my life and I guess my ignorance didn’t want me to think such evil was possible.

I assure you they do take children away from loving parents who have committed no crimes, and this is how…

RISK OF EMOTIONAL ABUSE!

Only now will you understand why I talked about my little sisters cancer! Not because I was crying out for your sympathy vote but because its a huge contributing factor!

Because my sister has a mild learning disability the SS used this to their advantage. She isn’t slow… Hell no, but sometimes she is too compliant for her own good, especially when those doing the pushing are those she thinks she should trust… An authority figure!

Then something happened… something that had my sister flee to them for help and protection but instead she got blackmail. Alone, confused and emotional having just been the victim of abuse! Getting her to agree to conditions on a child protection agreement with that of a signature was like scavenges swarming its prey it was Profoundly immoral and malevolent.

To then set her up in a flat, just so they could monitor her every move while pretending to be there to support her is unthinkable but true. All the time notes were made, notes containing events and points that didn’t even ever happen! With unannounced visits who was there to witness this, who was their to be my sisters witness. With my sister unaware their was even an issue till recently, she failed to tell me…. I only wished I knew these things sooner.

Now they state that my sister, (who I can say with my hand on the bible, is a great mum) May not be able to meet her daughters needs in the future… Because her daughter is advanced at almost 3 years old! They therefore state she may became too cleaver for my sister to parent!

As if it could get any worse… Another reason given for their actions was that of my sisters past abusive relationship which she was sadly the ‘Victim’ off. It seems that falling in love with a scum bag and falling victim to domestic violence now makes you a concern worthy by the SS! Apparently if you have been in this type of relationship the SS can state with confidence that there “Maybe” a risk of emotional abuse in the future! And in the UK “Maybe” and “Future” is good enough!

My sisters cancer and abusive relationship means they won’t be giving her the chance to be her daughters mother, despite this enormous love she has for her that is so powerful only a parent can ever understand it.

She was set up to fail! Parenting class and support were a parenting assessment conducted by those from SS! As a result 60 pages of lies can be found filed under her name.

If she goes to court and she loses, she will be silenced! Her freedom of speech removed by the secret family courts. If she tries to speak she will be jailed! The gag will be forced in her mouth.

How is this still happening in Britain in the year of 2012? How can somebody take a child based on a report of maybes?

How will my little sister who has already been dealt so many heartaches and battles take on one of this scale… She is constantly in tears and cannot eat or sleep… Just how can she fight this.

Her little girl should be beside her, breathing the air she breathes, holding her hand…

My sister should be the one she plays peek a boo with!

This video will open your eyes to a system built on money and targets… One that removes human rights, data protection, freedom of speech and worse children.

Lastly if their is anyone who can help please do contact me please.

Money Saving And Financial Support Resources For Those Parenting A Child With A Disability

22 Oct

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

Playing Bingo To Raise Money For The NAS

2 Oct

Playing bingo is not something I do often especially online. I used to go to our local bingo hall with my mum and as a result won some impressive amounts of money.

I was contacted by the guys at 888 Ladies (an online ladies only bingo site) They asked me if I wanted to play some bingo and win some money for my chosen charity.

How could I pass up the opportunity to raise some funds for the National Autistic Society (NAS). The guys at 888 Ladies loaded my account with £50 funds, (the account was easily set up and this didn’t take long at all). Then I had a month to win my charity some cash.

How it would work: I could play with the £50 funds and had the period of a month to do so. Anything I won could be reused to play more bingo. However every time I won the amount was logged and when the month was over all my prizes would be adding up and the full amount donated to the NAS.

Given I’m not really able to play during the day when I’m guessing its much busier I had no choice but to play quite late at night. I was either able to play the party bingo or the more traditional form of bingo.

I tried both forms of play but defiantly enjoyed the party bingo more. You can purchase anything from 1-90 cards and with each game you had to make a certain pattern to win. Obviously the more players the greater the prize. This also goes for the cost of each card.The greater the cost the greater the prize (dependent on the number of cards in play of course). I played everything from 5p to £1 per game play.

You may wonder how a person can possibly keep up when purchasing more than one card (90 especially). This is because the game is automatic so once you have purchased your cards the system knows when you are left with one number and if its called the game stops and your declared the game winner. The prize money is then automatically added to your account.

Of course there is the chance more than one person needs the same number and therefore you have a case of more than one winner. In such cases prize money is equally spilt between all winners.

For me online bingo isn’t really the same as the real life game. The excitement of it all is somewhat different. I love marking of my numbers with a dabber and even the danger of possibly missing your prize adds to the overall excitement. I quite missed this element of the game but still had fun all the same.

As I could only play at night I found there to be much less activity so I was therefore playing for smaller sums of money. However I did have quite a few wins and just knowing that each one was adding to my overall total for the NAS was really exciting.

The total I won was around £54 in total plus the initial £50 is donated so that’s £104. Yay… I’m glad the NAS will be able to make use of my donation.

Why I chose the NAS: A charity very close to my heart. My son has Aspergers and through some of our hardest battles from diagnosis to education they have been supportive. I’ve also volunteered for their TSS (tribunal support service) to help other parents get their children the special education they deserve. When it comes to advocating and advice the NAS do it best. They also run special schools and other services. Click here to visit their informative website

It’s the little steps that count the most

12 Jul

So, we always knew it was never gonna be easy, lets be honest! Yes, the little man won’t have the stress of transitioning to a different school, his secondary school is in the same building as that of his primary thanks to the fact his in an independent special school for children on the autism spectrum, but nonetheless it’s still hard!

The school very wisely started the transition before the break up from school. This helps little man adjust and prepare for his routine in September, it’s not as if he will be returning to the unexpected this way.

It’s been a week now, his had good and bad days (I’m assured the good far outweigh that of the bad which is reassuring). It’s a lot for little man to take in, he was the oldest in primary and now his one of the youngest. Plus it’s just himself and only one fellow pupil who have entered the secondary class in which he will spend the next year. There’s new time tables, new expectations, new rules and of course new sanctions and rewards.

I’ve tried to encourage little man to see this as a positive move, I’m continuously encouraging him to really go for it and do his best. You have to say things how they are with my son so I have to be straight by telling him that if he messes up these important years of education he will look back later in life feeling sadness when he is forced to do it all again as an adult.

Tuesday was a particularly hard day for little man, he had his first sanction applied. Confiscation of property! His old TA had brought him a gift as a reward for his hard work in primary. Little man refused to put it away till home time and was said to continuously distracting others with his playing with this toy through lessons.

I didn’t find all this out till later via email, little man had come home frustrated and angry and sadly I was now in the firing line. Instead of being able to express his feeling to me, he just exploded, punching and hitting me. For me it’s very frustrating and upsetting especially when I am unaware of what has gone wrong. There was many tears that evening from both of us! He was convinced he would never get his toy back, we had a long chat about the ways in which he would earn the toy back from the teacher and of course the ways he wouldn’t. I hoped that when he slept that night he had gone to bed with a better understanding of where he was going wrong!

The following day little man left with the promise he would try his best… Trying is good enough for me, I don’t expect nothing other than my children to try (it’s the key to success).

He returned home beaming from ear to ear with his toy in his hand. I then received an email from the class teacher who reported how much better my child’s attitude had been towards both his learning and that of the behaviours expected from him. It left me with a warm fuzzy feeling of pride deep in the pit of my stomach.

Little man received lots of praise from me as result and it’s this praise I feel helps him to want to do well. Today’s evening email which stated he has continued to try his best to adjust to the daily routines of secondary school just confirms this.

I know he will continue to have ups and downs, this is one huge transition for a child who depends on the daily routine he is used to… Transitioning to secondary school is likely to be one of the hardest transitions my son is likely to endure but I have confidence in him adjusting and making it a success.

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But it’s not all about transition for Little man, he has daily battles he must over come and his over come many. Of course as his mother I can be seen bursting with pride and as mentioned I’m forever praising his efforts. Little man helping me organise and take part in a riot cleanup for our local area. He featured in a BBC news report as a result and the whole family and beyond praised him for the fantastic work he had done for his community. Another huge example was his ITV news interview about children with autism being bullied in mainstream schools. He had recently had a real hard time, so for him to take part to help raise awareness for an important subject resulted in plenty of tears from me. We downloaded and burned the report onto a DVD. Little man thought this in itself was the best reward ever (even if his 5 minutes of fame did go to his head a bit).

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I’m proud of all three of my children and I’m sure each one will continue to make me feel this way in the many years to come.

It really is the little steps we celebrate because it really is true, it’s these that amount to the bigger steps. I never take the “simple things” in life for granted anymore because what might seem simple to us is a mountain to my son.

The achievements we celebrate might seem odd to others but in our home it’s anything but odd at all!

I’ve decided to link this post to the Britmums Linky #PGRaisingOlympians which celebrates our children success. The linky and campaign is sponsored by P&G.

My daughter will be assessed for Dyslexia

5 Jul

Today I had a meeting at my daughters school, I went in thinking I was going to be thrown a load of excuses as to why I wasn’t informed my daughter was on the special educational needs register, but actually things went a little more differently.

You see, all those who have lied to me are no longer employed at the school. The head master whom I had a terrible relationship with due to the discrimination my son received and the SENCO who has lied about both my children’s needs, have left. The new head teacher has been brought in to repair all the damage that has been done and therefore get the school back on track.

I was almost left open mouthed when I realised I wasn’t being feed anymore bull shit. This new head teacher apologised for the fact I wasn’t told stating it was unacceptable. She has looked through my daughters sen file and through some of her work and feels that she should have been assessed for dyslexia!

She has told me she wants to sort this ASAP as to give my daughter the best chance in year 5. Extra help will be provided to enable her to catch up with her reading and writing. We also discussed the possibility of maybe booking her in with an optician to see If coloured lenses could help her read better (it currently takes her a long time to read a book).

I have appointments booked with her class teacher on Monday and the head teacher is writing a letter explaining my daughters SEN, the reasons she is on the register and the help they have been providing her with.

I have put a lot of trust in this school before and been let down badly. However with the new senior staff in place, a temporary SENCO and no sign of anyone who damaged us in the past, I feel that just maybe communication will be better.

I won’t let my guard down, I can’t afford to. I will continue to over document everything, monitor attendance (maybe asking for a weekly breakdown of her attendance for my records) as well as making sure the AWO stays on top of things.

I really want to believe the new head teacher is one that I can fully trust. I have got to a stage where I feel I can not trust anyone and hope that my confidence in the system can slowly be repaired. Surly not all head teachers are bad… Right?

To have someone agree with me that records have not been kept as they should have and as a result I could have actually gone to prison, is a start!

To have an apology is also a step forward.

I don’t know why both the SENCO and Head teacher left suddenly but I am pleased to see the back of them!

I just want my children to go off to school in the mornings and come home smiling. I want a good healthy school home relationship… Just like the one I have with my sons independent special school… Surly it’s not to much to ask, is it?

#Mad blog awards 2012 finalist plea

2 Jun

So, there are just 5 days left till the voting closes for the Mad blog awards. I’m chuffed to have made it to the finals of the Mads 2012 (most inspiring category). This year there’s some fantastic blogs amongst the finalists and it’s worth just popping over to discover some fabulous new reading material.
Mum and Dad Blog Awards 2012

However if you do love what I do then please vote A boy with Aspergers for most inspiring 2012. Voting closes on the 6th June 2012 at 5pm. Just click the button above.

Here’s a video that myself and the little man created to drum up some support and thank those who have supported us so far

Huge thank you to all our readers and supporters and to that of Sally for making the Mad blog awards what it is today…something I’m dead proud to be involved in!

SEN Reform Aspirations – You Decide!

19 May

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.

#HAWMC Day 27 – Difficulties and Victories

2 May

Now admittedly I am writing post 27/30 in the “Health Activist Writers Month Challenge” (#HAWMC) some 5 days overdue and yes I still have 4 more post to write (this one included). As its now May, a brand new month, technically the challenge has come to an end but come on, cut me some slack here! Mother of three demanding little monsters and them monsters come first. However, having come so far and not being a person who gives up on things easily I am determined to see the challenge through to the very end!

So… The 27th challenge was to give my top 5’s. These consist of the top five things I find most difficult as a parent of a child with Aspergers Syndrome as well as my top five victories (the things that kept me going when things got tough or the battles we over come)!

Now having bashed my tired brain for a while, I finally compiled a list for each, broke it down to the required number, explaining my reasons for each.

Things I find most difficult

1)Sleep: Yep, it has to be the total lack of sleep! Yes, this is more difficult than the meltdowns, swearing and black and white thinking style (such a thinking style can create problems). I often state that I’m used to the crazy sleep pattern that has been part of my life for donkeys years and as a result I’ve adapted my body clock, but in all honesty, despite this being true it really doesn’t make it any easier! Some days I’m fine where others I’m seriously having a hard time dragging my own arse around the entire day. I snap more easily, cry at day time TV and not really dig the huge black bags that dangle under my eyes most days.

2) Anxiety: Little man can become extremely anxious about the “smallest” of things. He can get so worked up that he loses himself in a thick fog of panic. Little man needs lots of reassuring when his like this! He may ask the same thing continuously, take many trips to the toilet and pace about loudly speaking to himself. His even been know to quite literally worry himself sick!

3) Discrimination: This is not a trait but something that comes with this diagnosis and many others besides. Discovering that those that are meant to do the best by your child, are actually treating him in a way that sees him extremely disadvantaged to that of his peers, is a terrible thing to witness as his mother! The fact that my child starts to become aware of this treatment, makes the situation one million times worse.

4) Days Out: These are meant to be enjoyable but yes, I do often find day trips and holidays quite stressful as does little man. This sometimes restricts our options, if deciding to embark on any spontaneous trips I need to do so at my own risk. Nonetheless, good planing and preparation is the key and combined have resulted in some good days out with little problems.

5) Meltdowns: As if these acts of built up exploding stress wouldn’t make my list… Of course they would! What can I say except who really wants to deal with screaming, swearing, crying and violence! But above all else the most difficult part of parenting a child with Aspergers is actually having to see your child become that overloaded and at times not being able to make things better for them! No mother wants to witness they’re child in this state.

Victories

1) Diagnosis: This itself is a victory, as to finally have that label actually opens more doors to services and support. I’m not starting you no longer need to fight for things, but without that label you have even less chance of getting anywhere.

2) Results: Having fought some almighty battles to obtain everything from acknowledgement, respect, suitable education, fair treatment and more, I can tell you it really isn’t easy! You discover that those you put your trust in are those you may need fear most! It’s tiring and at times you feel like just throwing in and trowel. You don’t, you just keep going and when the good finally happens its the most amazing feeling ever!

3) Progress: Watching the progress my son has made since attending an independent special school is wonderful! When your son goes up 7 reading levels over a few terms you know you made the right choice.

4) Rewards: Every time my little man receives an award at school whether it’s for improvements in behaviour or that of his learning progress, I’m overly proud. Of course I feel the same for my daughter, but these are things little man never received in mainstream and it’s lovely to see how such achievements rebuild his fallen confidence.

5) Inspiration: The inspiration my child’s diagnosis has given me to bring awareness and support to other parents of newly diagnosis children.

So, there you have it, my little list of 5’s.

This post is 27/30 in the #HAWMC

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