Sometimes….

Sometimes….

it all gets a bit much.

Now is one of those times. I want to be filling my blog with wonderful Christmas Gift Guides for you. I want to be more proactive in finding a suitable special needs school for my son. I want to be filling out my SEN Appeal form. I want to recover quicker from my operation. I want to be ringing the relevant people and writing the relevant letters for my formal complaint. I want to be raring to go and ready for my weekend away with the girls this weekend.

I am finding it really difficult to do any of those things right now.

I think I have been “falling” for a while and finally hit that place called rock bottom. So much going on in my life right now and I want to keep up, I am trying so hard to keep up but I hold my hands up and admit I am struggling!

If rock bottom is where I am at then I can take a positive from that. There is only one way to go and that is UP!

I really want my blog to be better than it is. I am proud of myself for what I have achieved with it so far…. but I want it to be better! I have lots of posts to catch up on… just no motivation.

I visited a special needs school last week and am  visiting another next week so its not as if nothing is being done to find Xavier a suitable setting, things just aren’t moving quick enough for my likings! I want him happy and settled… but i want that YESTERDAY!

I am so sick and tired of filling out forms and making phone calls regarding school/complaints/incidents/statement etc. I never want to see another one again in my whole entire life but sadly that is not going to happen! It is never ending and makes me so bloody incredibly  cross that I have to fight so damn hard to the point of exhaustion. Why? Just because my son is clever doesn’t mean he can cope with a mainstream school. He very clearly can’t. Why is there such a lack of schools in this area that can cater for my sons needs or just why is there such a lack of special needs schools when there is huge a huge demand for them?

I had a laparoscopy done just over 2 weeks ago and it has knocked me for six. I thought I would be back to running around and doing all the things I normally do …. but Im not. I feel exhausted and old. I can’t do those things and the fact I can’t is making me feel incredibly useless! I know I need to take it easy but its hard when there is so much to do!

I am going away with 2 of my sisters and 3 other girls for a girly weekend to centre parcs this weekend. I haven’t decided what I am taking yet, done no washing for it, just not prepared at all and again no motivation! I need a slap I think as many mums would give a limb to be away for a weekend child free!! Its not that I don’t want to go… I do! We went 2 years ago and I had the funniest weekend ever!! I just cannot seem to shake this miserable fog that is hanging over my head!! I know I will be fine once we get going!! I refuse to be a moody old bag all weekend. I need this break.

So please bear with me. I will be back on track and running on full steam again soon.

me

Concerned your child may have Autism?

Concerned your child may have Autism?

It is a very daunting prospect. It was brought to my attention when Xavier started school in Reception. No signs were picked up at PreSchool. Even when things were mentioned to me I shrugged them off thinking my son just had a couple of odd ways but to be fair I had heard of Autism but knew absolutely nothing about it and I suppose was in denial of the possibility.

How things happened for us was that we met with the schools SENco (Special Educational Needs Co-ordinator) after the teacher raised concerns about Xaviers behaviour. Then we were referred to the school nurse and had to write a report. This turned out to be pages and pages long. I will add below a few entries from my report to give you an idea:

1. will not eat any form of meat unless it is sausages mince or burgers, otherwise he actually gags, even on the tiniest piece. Used to eat anything and everything up until about 2 years ago.

2. is reading fluently, normal print books 2 years ahead.

3. Very clever yet cannot follow REALLY simple instructions, i.e Go and get some clean underwear from your draw upstairs, he will go upstairs and come back down 4 or 5 times empty handed looking very confused.

4. Is VERY easily distracted

5. Talks very loudly even in a quiet environment and even if I am right beside him.

6. Needs to be given plenty of warning for most things or he just cannot seem to cope with change of activity.

7. He has no concept of waiting his turn to speak in a conversation (he has plenty to say just always talks over people or butts in before the other person has finished speaking)

8. If he iswatching a loved TV programme or reading a book about a favourite subject its very hard to break him out of his little world to speak to him or ask him something. Literally having to call his name 10-12 times.

9. He constantly asks “Mummy why does everybody look at me?” It seems to bother him alot. (even if no-one is actually looking at him)

10. If there is loud noises or raised voices be it indoors, in the supermarket, in the park, etc he will freeze on the spot almost shaking and has his hands over his ears. (he doesnt get upset but his eyes widen and he clearly doesnt like it)

11. His vocabulary is incredible for an alomst 5 year old.

12. he stares up at the sky and spins around and around and around until i have to actually shout at him to stop b4 he falls over and hurts himself. Dont know why he does this.

13. Is obsessed/fascinated with playing with water, everytime he uses the toilet at home, when washing his hands will play for 20 mins if not supervised everytime.

I ended up writing about 4 pages, most of the content I added I wasn’t sure if it was relevant or not but thought best to add it all. The School Nurse called me shortly after receiving my report and told me we had a very strong case to be referred to our local Child Development Centre and that she would refer us asap.

So all in all we were very lucky and within a year of it being brought to our attention that there may be a problem and 2 visits to the Child Development Centre we had a diagnosis.

It doesn’t always work this way and there are different avenues that you could take. For example if you have a good family Doctor, feel free to  visit them with your concerns. They are not able to diagnose but are able to refer to your local Child Development Centre. Xavier was 4 when concerns are raised and 5 when diagnosed. I think age may play a part too. Some organisations want to wait until the child is in a school setting before considering assessing.

I find the National Autistic Society Website a great resource for information.

You can visit here: http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism.aspx

If you do have concerns try and speak to a professional as I believe the earlier assessments start, (hopefully) the right help can be put into place for the child. I am no expert but feel free to ask any questions you may have and if I can answer them I will.

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We have been nominated for a UK Blog Award and its now down to the public vote! If you feel we are deserving of such an award please feel free to vote!! All you need is to put in your name and email address here:

http://www.blogawardsuk.co.uk/candidates/our-world-and-autism/

Thankyou!

Anti-Bullying Week 17th-21st November 2014

Anti-Bullying Week 17th-21st November 2014

Brandon Trust Logo 2011

As reports of bullying against disabled people continue to rise, leading learning disability charity Brandon Trust issues advice to stay safe to mark Anti-Bullying Week

In the run up to national anti-bullying week (17 – 21 November 2014), leading learning disability charity Brandon Trust is issuing advice to people with learning disabilities, their friends, families and support workers about how to identify and deal with bullying.

Government figures show that in 2012/13 the police recorded 1,841 disability hate crimes, a 5% increase on the previous year, when 1,757 incidents were recorded.

But Brandon Trust, which runs free training sessions on bullying for people with learning disabilities and the professionals who support them, warns that the vast majority of bullying or hate crime against disabled people goes unreported. Therefore the actual number of instances of bullying against people with disabilities is likely to be much higher.

Estimates published in the same government report put the real figure at over 62,000 disability motivated hate crimes per year. One of the reasons so much bullying or hate crime against disabled people is not reported is because it’s often not identified. For many people with learning disabilities unfortunately ‘it’s just part of life.’

However bullying is a form of hate crime, defined as a crime motivated by hostility or prejudice against a person because of a personal characteristic – in this case disability. As such, anyone convicted of a hate crime can receive a tougher sentence.

Examples of bullying include name calling or bad gestures, physical attacks, threats, harassment, humiliation or intimidation. Nasty letters, leaflets or posters, offensive emails, text messages, phone calls or social media posts also all constitute hate crime, as does damage to property, including graffiti. Finally ‘mate crime’, where a person is befriended and then exploited, either physically, socially, financially or sexually, is also a serious issue for people with learning disabilities.

Lucy_Hurst-Brown RS.jpg

Lucy Hurst-Brown, chief executive of Brandon Trust, says:

“As if bullying against disabled people isn’t bad enough … one of the most alarming things we see is just how many of the people we support accept bullying as part of life. Even with shocking cases that hit the media, like the tragic story of Fiona Pilkington who took her own life and that of her disabled daughter following years of abuse from local youths, the majority of cases go unreported.

“That’s why we’re issuing practical advice to help people identify and deal with bullying and to encourage them to report it. Together we will work to stamp out this appalling abuse and make our communities safer for everyone.”

Brandon Trust’s guidelines on staying safe include:

1) Tell someone you trust if you are being bullied, this could be a support worker, a good friend, a family member, a youth worker, someone else that you work or live with or an organisation (such as Bristol Hate Crime Service)

2) If you are being bullied, keep a diary of events, log the date, time, who was involved and as much information as you can remember. Brandon Trust can provide Easy English logging diaries

3) Put useful numbers in your mobile –a local taxi firm, police non-emergency (101) and any local Hate Crime Service or helplines

4) In an emergency always call 999

5) Avoid giving out personal information such as your address and never disclose passwords or pin numbers to anyone

6) Beware of friends who always ask to borrow money or possessions, and ask yourself if these are real friends

7) Find out where your local ‘Safe Places’ are for when you’re out and about. These are places such as libraries, shops, cafes and council buildings that have signed up to the national Safe Places scheme

Brandon Trust offers bespoke training, events and workshops on bullying and hate crime for organisations and individuals. For further information contact sarah.howard@brandontrust.org

Parragon Book Buddies – Journey Around and Inside Your Amazing Body

Parragon Book Buddies – Journey Around and Inside Your Amazing Body

We are so excited as a family to be chosen to be Parragon Book Buddies!!

The book we were sent to review for October was Journey Around and Inside Your Amazing Body.

Book1

This book is fantastic and does actually tie in with a few things that Xaviers year is learning about in school. It is full of fun and interesting facts and activities to do which Xavier even managed to complete. For those of you who have been reading the blog will know that this is an amazing achievement. For him to stay engaged and pick up a pen are both incredible things!

book2

On this particular page, the activity was asking you to draw a picture of what you think you would look like without any bones…. This was Xaviers interpretation! “A plate of Jelly!” There are so many activities of different kinds on here and in the back pages are the answers to any questions asked along the way which I think is fab!

The illustrations are bright, colourful, fun and eye catching. This is quite an amazing book for me to able to take the following picture!! Normally it is only an iPad or Dr Who book that can keep Xavier entertained! Incredible book, very educational and definitely one I would recommend.

book3

We are thoroughly looking forward to seeing what book we get sent to review next!

We have been chosen as Parragon Book Buddies and have been sent this book for review purposes.

That Boy in the Playground.

That Boy in the Playground.

I was getting ready this morning and this poem just came to me!

That Boy in the Playground

That boy in the playground
He’s a little bit strange
He’s a little bit different
Says big words for his age.

He runs a bit awkwardly
Definitely isn’t the same
Lets have some fun here
Lets call him some names

That boy in the playground
He gets cross and upset
I pushed him around
He grabbed my neck

He was crying and screaming
It was funny to see
Why does he go so crazy
Im glad he’s not friends with me

That boy in the playground
He is my son
Just like the rest of you
He wants to have fun

He isn’t a monster
He’s a kind loving boy
He is wired up differently
When you tease, it’ll annoy!

That boy in the playground
He cries in my arms
He wants people to like him
He doesn’t mean any harm

Being nasty to him isn’t a joke
Please give him a chance
He wants to be friendly
Just seems different at a glance

My son, he has Autism
He is one of a kind
Next time you want to be mean
Please bear this in mind!

Xav

Uppies for Autism!

Uppies for Autism!

‘Uppies for Autism’ -­a sporting challenge initiated by England footballer Jack Wilshere in collaboration with The Autism Trust.

Jack Wilshere (the Arsenal and England football player) has responded to the challenge laid down by Billy Tommey, a young man aged 17 with autism, to take on the challenge of showing off his footballing skills in the new ‘Uppies for Autism’ campaign for 2014.

Responding to the opportunity Jack then challenged Mo Farah and Arsenal colleagues Calum Chambers, Alex Oxlade-­‐Chamberlain plus the legend, David Beckham … Chambers went on to show what he could do and extended the challenge to Arsenal’s Danny Welbeck, Wojciech Szczesny, and Southampton’s Nathaniel Clyne and Harrison Reed.

 

The game is now on! Anyone can try ! All you need is a ball …or something else to do your uppies, your imagination is your only limitation.

Here is my lil footballer doing her most keepy uppies to date so far!!!

 

‘Uppies’ is a game played by people the world over to develop their footballing skills. The goal is simple (but very hard!): How many times can you ‘keep up’ the ball using feet, knees, head and shoulders (no handball!) without the ball touching the ground…

Uppies for Autism is a campaign to raise awareness of the challenges faced by individuals
with autism, as well as how The Autism Trust will address those challenges and improve
the lives of all individuals impacted by autism, including their families.

uppies

The campaign (online‘uppiesforautism’) will raise much needed funds and support to achieve The Autism Trust’s mission of ongoing operations inthe Sunninghill, UK location, as well as build a revolutionary facility in the UK & United States that will provide vocational, educational, wellness and semi(independent resources for individuals with autism.
These unique and much needed facilities, combined with other resources, will provide futures with purpose for all individuals with autism.

The Autism Trust’s objective is to create a future with purpose for children everywhere with autism. The concept is based on providing employment and training opportunities for young adults with autism within a new residential and outreach centre where adults with autism and other related disabilities are provided with expert services through a developed medical, business and vocational centre that will support their health, maximise their skills and talents and offer work to live fundamentally happy and safe lives.

The Autism Trust (Registered charity Nr 1117657) www.theautismtrust.org.uk

The Autism Trust’s focus is on building inspiring, sustainable and real futures for the many young
people with autism in the world today.The Autism Trust is a charity established to provide futures for people with autism so they may live a fulfilling life with purpose, dignity and respect.Our primary belief is that if given the chance all people with autism can put something back into society, some independently and some with support.

Autism is a global issue and The Autism Trust believe that by working collaboratively with experts, parents and professionals in the field of autism we can provide the futures that are crucially needed for all individuals with autism. Our UK centre in Sunninghill in Berkshire, ‘Polly’s Place’ has successfully shown that with the right support, our students can use their skills to add real value to the world.

We want to expand and help more teenagers and adults with autism experience the training in all
areas which The Autism Trust team can offer.The Autism Trust UK and USA work together in succeeding to prove that autism can and does have a place in society.

• Polly’s Place online and retail shop showcase the craft and art talent of artists
with autism and students at the centre, as well as provide them the opportunity to work in the shop packaging and sending the purchased products.
• Our students also participate in retail analysis, computer science, photography, horticulture,
holiday craft clubs and outreach work experience to local businesses within the community.
• The Autism Trust USA most recently launched our Social Club, which gives families
the opportunity for fun, friendship and social skill development.

Uppies for Autism will provide the much needed funds and support to give more people with autism and their families a chance, and for us to expand and develop our centres.

Will you get involved?

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