Burnley College Family Day

Yesterday we attended the Family Day at Burnley College, the event was certainly filled with lots of exciting activities and demonstrations that we just didn’t have time to get around them all.Main_entrance_to_Burnley_College_on_Princess_Way_-_geograph.org.uk_-_1366358

Firstly we were greeted with a couple of people one dress as a carrot and the other as a pea pod, MacKenzie was very uncertain of this but we managed to pass giving a large distance between them and us. Entering the building Mya and Mackenzie were encouraged to have a go on a very large buzz bar (they didn’t take much persuading), it looked very exciting but quite tricky. Next to the engineering room where they both had a go at the eco water powered micro remote control cars. These tiny remote control cars use a real fuel cell station that stores energy using waters basic elements, what a fun way to learn.

In the atrium of the building the main attraction was the Tae Bo demonstration which looked really good. The instructor Maureen Kelly and her participates made it look so easy but i don’t think i would have lasted 5 minutes! Also in this area was a giant scalextric which Mya and MacKenzie both loved, it was also a big hit with most of the parents you could tell most dads really wanted to have a go. Also in this area was face painting, a sweet shop, treasure trail, course advise desk and arts & crafts.

Next stop the large sand pits with the beach theme setting with cook 4 life, fruity pick & mix, you are what you eat and a herbie garden all in the same area of the college. By this time 2 hours had already passed so so quickly…time for a sit down and a drink at the countryside cafe.photo-474

The countryside cafe was also run and organised by Maureen Kelly and her team which was a lovely set up with a water display and tiny tables set up with china cups and saucers. The ladies came to take our order and we were served with tea and a selection of tasty cakes. Not to MacKenzie`s liking has he wanted toast but was later happy to sit and eat a small tub of jam! The countryside cafe did a great job and the tea and cakes were all put on in aid of raising money for autism and the awareness of it…..customers made donations for their food and service. Also they advertised our posters for our collection of old mobile phones and converting them into iPads which we donate to autistic children or children with social communication problems.photo-476photo-475

Mackenzie soon spotted the the drama theatre where a small group of students were acting out small sections of plays. Mya really enjoyed this because its the topic she is mostly interested in and has a great passion for. MacKenzie also enjoyed it and got right into it…… literally.

The last stop of the day for us was to be the sports centre where there was a large army inflatable and a climbing wall. The army inflatable obstacle course was fantastic a really army feel squeezing and climbing through all the different parts. After about 8 rounds on this it was time to go…with 2 tired children.photo-477photo-478

This was a great event and there was so much we didn’t see like the camping display, paper aeroplanes, robots, wii & X Box games, slime making and also all the outdoor sporting activities like basketball and netball.

2BR radio station were also supporting the event presenting live from the college entrance. This was a great event and gave the families in Burnley and the surrounding areas a good opportunity to see what the college has to offer………see you next year!

The Autism Show 2013

I awoke this morning with my mind still buzzing from attending the Autism Show 2013 at EventCity in Manchester yesterday. The atmosphere was great, i was surrounded by understanding people of autism which doesn`t happen a lot these days. First job on the agenda was to check out the show guide and make a plan of which talks myself and my partner would like to see. There were three talks happening constantly throughout the day in the main theatre, the hub: theatre 1 and the hub: theatre 2. The plan went completely out of the window straight away because we wanted to see most of them but had to make a choice which ones had more relevance to us and MacKenzie. A big star was put on the programme for the last talk of the day which was Carrie and David Grant and their experiences of bring up two autistic daughters……what a wait!IMG_6085

 

At the start of the morning  our first port of call was the SenseToys Ltd stand to buy a couple of the `Bendy Men` a fantastic fidget toy which sold out very very quickly at the nasen live show in Bolton last month. In fact they were the busyest stall all day but the product are suitable for most and are fantastic. I think all the parents and teachers were actually a big fan of all these tactile, brightly coloured little toys if they had to be honest. I know we were and we got quite a few for MacKenzie and Mya but i know i will play with a couple of them when they aren’t looking….shhhh!

There was a  fabulous set up of a sensory room created by Mike Ayres Design and OM Interactive. The omiVista Interactive floor projection system is a fun and exciting sensory learning experience. Lots of different images can be projected into the floor which are highly responsive to small gestures or movement, enabling children/adults to easily interact and engage in stimulating audio visual experiences.omi-main

Some of the other stands were:

* Auty Not Naughty, a mother of an autistic boy who was selling designed t-shirts and hoodies for children on the spectrum, she was inspired by wanting to display her pride of her son in public, and to also send a message to onlookers in public.

* IPSEA, is a national charity that provides free, legally based independent support and advise to families with children with SEN and/or disability as they negotiate the education system…..fantastic support! We will be contacting them in the near future as parents like us need to know everything to get the best for our children. We learnt a lot within just 10 minutes of talking to these people yesterday.

* Suppautism, is an online system which schools can take onboard to monitor the progression of pupils with autism and asperger`s syndrome in secondary education. The guy behind Suppautism is Matt Winning, Matt has aspergers syndrome and had serve difficulties coping with school life…..but he has come along way and has recently graduated from University and has now confidently launched `Suppautism` ….great!

* Aldebaran Robotics, The NAO is a programmable 57cm tall humanoid robot which is capable of speaking, reacting to what you say, recognising faces and objects and adjusting to the surround environment. A great tool for schools with autistic children, the robots were really popular yesterday with all age groups….i think i want one (might need to start buy a few scratch cards or start playing bingo, these robots cost £10,000 each).High_Res_NAO_NextGen_05_HD

* Hearts & Minds Challenge, Ian McGrath who was not present at the show yesterday but was present Friday and my other half got to meet him…i could have kicked myself for missing him! Our ongoing collection of old/unwanted mobile phones in exchange for Apple iPads which we donate to local groups Phones 4 Autism, Ian is the main man we deal with. Hearts and Minds mission `is to raise the quality of life of individuals and their families affected by autism by ensuring the highest standards in education, care and support leading to employment and equality of living opportunities`. They are currently raising funds so they can open a Centre of Education for Autism in Manchester.IMG_6098

* Autism Bubble Day, this  was launched in partnership by Hearts & Minds, Autism in Mind and Monique Blakemore. A fantastic way of raising the awareness of autism and helping others gain a better understanding.

Other companies and services exhibiting were: Acorn Care and Education, Ambassador Theatre Group Ltd, ActiVise Software, ASC Healthcare Ltd, Aspire in the Community Ltd, Autism Eye, B Squared, Autistic UK, Beacon Reach, The Cambian Group, The Disabilities Trust, The Challenging Behaviour Foundation, Eden Supported Living, Craegmoor Ltd, Enable Supplies Ltd, ESPA, Hesley Group, Explore Your Senses, Home From Home Care Ltd, Hereward College, iMap Centre, Ludlow Orbis Group, Kingkraft Ltd, Maclntyre, Lighthouse Healthcare, Manchester Progressive School & Walton Progressive School, Maxwell Gillott Solicitors, The National Autistic Society, Meadow Lodge at Lea Green, OptiMusic, Options Group, Play to Z, Orchard Care North East Ltd, Queen Alexandra College, Pengwern College, Redcliffe House Ltd, Reach Autism, SEN Magazine Ltd, Ruskin Mill Trust, Safespaces Ltd, SensoryPlus, Skybound Autism Therapies, St George Healthcare Group, RM SpaceKraft, St Christopher`s School (Bristol), Time Specialist Support and AuKids Magazine,Together Trust, Widgit Software, Tough Furniture, Wirral Autistic Society, Wargrave House School & LEAP Specialist College and finally The Witherslack Group.

Also running were 1-2-1 Clinics where you could attend a free personal consultation with specialist clinicians and advisors. We went to the sleeping difficulties clinic (not for myself even though i have never slept right since MacKenzie was born, he doesn’t need a lot of sleep for some reason). Vicki from The Children`s Sleep Charity was lovely and gave us some great information and advise in the 5-10 minutes we were in their. Really glad Scott persuaded me to go in because i didn’t think it would be that useful….how wrong was i, any parents having trouble with their child sleeping contact these people….www.thechildrenssleepcharity.org.uk

Cannot believe we missed the fabulous Anna Kennedy with a selection of acts from Autism`s Got Talent. This lady does so so much, in 1999 she set up her own school for autistic children and it currently has 150 pupils. She also has two sons with autism.

The three main events of the day were the three talks we went to, the first one by Dr James Cusack ..Understanding Autism, why research matters; a researcher with autism`s perspective and the second one by Laurence Mitchell….How to un-autistic your autism; the confessions of an autistic adult. Both these talks were emotional and heartfelt, both adults on the spectrum speaking confidently about their feeling and experiences of living with autism. I am sure it gave hope to most parents listening to these talks….i know it gave us hope.IMG_6102

The third and last talk of the day we saw, Carrie and David Grant (TV presenters and celebrity vocal coaches) gave their experiences of bringing up two autistic daughters. It was so interesting relating to them, we all go through the same problems of schooling, statements and diagnose even. They were truly inspirational parents and provided empowerment to us as parents. IMG_6115IMG_6118

It was a great day yesterday and has put me back on a more confident positive route, myself and Scott will do the very best we can for our child and make sure they get the very best out of life and be most of all Happy.

 

 

nasen Live 2013

This week I attend the nasen Live 2013 – Dedicated to SEN at the Reebok Stadium Bolton. There were many companies exhibiting such has Jolly Learning, Crossbow Education, Taskmaster and SenseToys, Trugs (Read Successfully) and Collins Education. Also the Department of Education were present giving information and seeking views on the new Code of Practice which the final copy will be finalised in spring 2014, the draft Code is now completed and released.

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There were a number of seminars which you could book beforehand which looked very interesting: The role of the SENCO in an era of school-to-school support for SEN, ADHD skills and strategies for teaching and learning, iPads for the busy classroom – getting the most from your portable technology and many more.
Most of the visitors were teachers and teaching assistants which was great because it shows such an interest and passion in the SEN area of their work. There were so many tools and ideas for learning all types of special needs children.

Of course my target was to source items and advise for MacKenzie, to encourage and promote his learning at home and give him the best start I possibly can. A couple of years ago we thought he wouldn’t be able to read or write and we are so pleased that he can now do both, maybe it doesn’t come as easy as other children find it but he is doing well.

In the first 5 minutes I had made my first purchase which was trugs at home (box 1), a really fun way of teaching reading using games. Every time a child plays with trugs they are practising, reinforcing and consolidating a reading stage without realising it. The card games called Guess it, Match it and Take it are fun and competitive. `Guess it` is a two player game which is good for children who are struggling in group situations and encourages good eye contact also.
Before buying the lady gave a full demonstration of all 3 games and let me join in playing with her while showing others, I really enjoy myself. It also gave me a head start for when I got home so that I could show MacKenzie and Mya straight away what to do instead of taking time to read and understand the instructions.

I also came away with some soft conversation cubes, great for social skills from Crossbow Education. Three sets of cards (Let’s Predict, What Are They Asking? and All About You, All About Me) from Taskmaster and the BEST SELLER of the day was Bendy Man a fantastic fidget toy (which the adults all loved) from SenseToys.

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I could have easily spent the whole day there but the school run was calling very loudly. On getting home after tea I showed MacKenzie how to play the trugs `Guess it` game on a one to one, which he enjoyed and then he and Mya had a game. I find it very important to involve his sister Mya as much as possible and she is such a big help. Also with the resources i bought with the main aim being MacKenzie`s educational learning, its also for the whole family and for everyone to have a part in the fun way of learning. Mind you after playing the next trugs game `Match it` using the word fun may not be appropriate. This game is for a small group and MacKenzie can easily come unstuck when in group games because they involve more turn taking, sharing and coping with the concept of winning/losing. Feathers were flying by the first  2 minutes of the game but myself and Dad remained very calm and tried to carry the game through to the end. We got to the end with lots of gritted teeth shown by MacKenzie but the more we practice theses group activities the more its helping promote better understanding and social skills.

Later that evening both MacKenzie and Mya asked to play again the day after, so i think we will be whizzing through this box quite quickly by the time we get to box 3 it maybe learning me something (box 3 is age 9-15 years plus) !!!!!!

If you didn’t get chance or you didn’t know about it make sure you make space in your diaries for next years nasen Live, it was worth the trip.

 

Nobody Likes Me

All this week MacKenzie has come home from school quite a happy little boy but when I have asked him about who has played with him at playtimes he has replied “nobody”, “nobody likes me”. It’s very sad to here that has a parent and especially when you know that social skills are one of your child’s weaknesses. The only problem is that he doesn’t express theses problems and you wouldn’t know by looking at him that anything is bothering him…..or is it?. If I hadn’t asked him then he wouldn’t have shared the concern with me. Or the other question is, is he bothered that nobody is playing with him? (I think it does really deep down).  When I  ask him he answers me in quite a factual manner unlike a neurotypical child who would show upset and want help to solve the problem.

child-alone-in-playground-006When does a child realise they are different or is it that others start to realise that the child is not quite like them.
Help and Awareness is so important because a lot of these children do want to mix and socialise, its just that others make it difficult for them and a lot of it is due to a lack of understanding of them. With the increasing number of ASD diagnoses ………. Something needs to change.

Hope MacKenzie has had a better day today and that he has been able to play with someone. I know some people may say that all children go through this at some point and that its only been a week upto now that nobody has played with him but this is where it can start. A tiny crack can turn into a large social gap very quick in a child’s life. Through play children learn social skills such as sharing, cooperation and turn taking. Social language is also learnt, self-esteem is built and friendships are formed, all of which are just as important as the educational part of school life.
Early intervention is everything!

First Day Back After Half Term

Every school morning can be quite an emotional struggle for my little boy and with it being a half term its always a harder one to go back. MacKenzie has had all his visual preps and had fully understood when he was going back to school, but Monday morning as soon as he awoke the upset began. Begging not to go, crying and saying he was poorly. Even though his speech is really good now people don’t understand that he doesn’t take in some of the information you verbally give him. When it comes to talking about feelings and emotions he just doesn’t relate, therefore it makes it so much harder to go through things with him like other parents will do naturally.

I felt like my insides had broken into a million pieces on Monday morning but i knew i had to send him to school no matter how upset he was. A few days ago when MacKenzie knew that going back to school was not too far away, i started trying to encourage him by asking him if he wanted me to print a map of where we had been on holiday (he likes maps and fact based things) to show his teacher or class mates…..but no. I cant even get him to relate to that he will see his friends or even if he has missed them, sometimes children want to go back to school to see their friends if they haven’t seen them over the holidays.

I am very aware that all children at some point go through the stage where they don’t want to go to school and they all `try it on` with their parents feelings but this has been ongoing since day one. The only problem we come up against is that that school report he is a happy child there (which don’t get me wrong is great to here) so then it looks like he is playing us. I do believe he is very good at hiding his problems and anxieties especially in structure environments and this can end up being a much larger problem. Also from a selfish point of view it leaves us with no help on this matter as nobody else sees it.

I would love to hear from people who can relate to this, because feeling alone and dealing with your child is really very hard. I found hope and strength thorough reading and realising that i am not on my own, there are too others out there with the same problems.

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Benefits of having a diagnosis

Many parents are still out there dealing with their undiagnosed autistic children alone, worried and confused. I understand that paediatricians don’t like ‘labelling’ children early because its quite a strong thing for the child to then carry for the rest of their life’s, so they do need to make sure that its something they have got 100% correct and that its not something that the child’s not just going to grow out of. But on the other hand the time from when a parent or other health professional realises there is a problem with the child which could be around 2 years (was in our case) to the time the paediatrician can confidently diagnose which could easily be anything from 5-12 years old a lot of time is in the middle. Within that time a lot of damage can be done by parents left struggling wondering what is really wrong with their child or even worst of all giving up the fight ( and it is a fight) and just put themselves down as a bad parent and the child as being naughty.
A diagnose does give the parent and the child a stronger focus and strength, yes of course it must be a devastating shock at first but then gives the family a clear route of what help they can access. Also when their child is struggling (and they do from time to time) outside publicly instead of being quickly judged by outsiders parents can confidently tell others their child suffers from Autism or ASD and it’s not their fault. Being in that situation where you are trying to sort your child out is upsetting enough and then on top of it knowing what others are thinking…….I have been there many times.
I clearly understand that getting a diagnoses doesn’t make autism go away like many other things, normally we go to the doctors for them to tell us what is wrong with us then we have treatment or further tests and then the problem is sorted. With an autism diagnoses there is no medicine or operation it just gives the family and others around the chance of learning about their child and changing/learning how to bring their child up because treating and understand these children differently from has early as possible really does improve their life……I am talking from experience.
If you are awaiting a diagnoses for your child don’t be scared, look at it has being the best tool you will be given to help your child mentally, emotionally, socially and educationally.
We are a family without a diagnose of autism for our child but strongly beleive in what we know, don’t get me wrong we do go through times of questioning ourselves and giving up but it’s what you believe in the majority of the time that really matters but unfortunatly I think there is only a small percentage of us out there and I would like to empower others be advocates for their children. Just keep Remembering you know your child better than anybody and you wouldn’t want to put in place such a strong label on them for nothing.

Autism or Not?

A journey of nearly 4 years now and still really we don’t know ‘Autism or Not?’.

The professionals involved say not, they put it down to his Speech and Language Disorder which impacts on his social communication skills.

Bring MacKenzie up is a roller coaster and has been a steep learning curve even for myself with all the background training and experience I have, so being a parent without that advantage must be a lot tougher.

In the early days I felt like a bad parent, that I had done something wrong but I think I am stronger now and more confident…..it does come in time.MacKenzie has lived on visuals since about the age of 2 and a half years old. ‘Now and Then’ pictures, a daily visual chart which consisted of four photos of what’s his routine would be for that day. It was really tough planning your day in photos and then obviously not breaking it after showing him, I’ve done that a couple of times…..the amount of pain you cause.

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Now at 5 years old nearly 6 we are onto a 3 month visual calendar and have been for the last 6 months. Quite a complexed set up for someone that young but he likes it and can understand the coloured key code which it is set by.

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When out and about I can now tell MacKenzie what is happening now and then, he prefers to say “first and then”. As long as I keep it to no more then 3 things ie. shops etc he is ok.

The only other problem is when out and about MacKenzie gets over stimulated in a lot of bright, loud environments and then you can mentally lose him……so everything can go right out of the window. His voice will go up several levels and you will loss eye contact completely. At this stage I will hear the comments or have them directly said to me “what’s that child had for breakfast” “has he been on the smarties” “he’s full of beans” “he will sleep tonight”. I know these comments are kind of harmless but when you hear it nearly every time you go out it really hurts. All eyes on you and your child just on a simple trip to Tesco, this just makes life ten times harder than what it already is. Not being able to physically see a disability people are so quick to judge. A disability in which a person see things different or may react in a different way to how we might should be take as serious as seeing someone in a wheelchair.

Since MacKenzie has been able to communicate more he once said while in a supermarket “loud beeps” when I asked him about this he told me he could hear the tills beeping (the scanners) and we were not anywhere near them, even listening very hard I still couldn’t  hear. We don’t realise what it must be like but just think about next time you go into a shop or supermarket turning all the background noise up so loud you can’t think straight. Being in this different world has made me look at so much, for instant when we go into a shop the background noises are there we just don’t think about them or take much notice of them. We have the ability to cut them out and get on with the task ahead…..but what if you couldn’t.

MacKenzie also has a diagnoses of Hyperacusis (this is a condition characterised by an over sensitivity to certain frequency ranges of sound, a collapsed tolerance to usual environmental sounds). At the same time was also diagnosed with Tinnitus.
There is no cure for these problems it’s just something we and MacKenzie have to learn to manage. He doesn’t mention the tinnitus alot just sometime specially if its quiet like at bedtime and he can become very frightened that the bees are there. It’s really sad but there is nothing I can do. The hearing specialist recommended to talk positively about the bees or that he may like to name them but he prefers not to. The good thing about it is that if he had have developed it much later then he would know a difference, but he thinks we can all hear them. I don’t agree with lying and I feel really bad when he looks scared and asks me if I can hear them, I tell him no because he must have super powers and only special people can hear.

There are also other problems MacKenzie has or has had and learnt how to mange which another child would naturally just get on with. He was placed under a Occupational Therapist just before starting school in June 2011, for his sensory problems. The results were that he had problems with auditory processing, tactile processing (tactile defensive) and a sensory seeker.
Just after learning to walk he would come upto me screaming holding his hand out for me to brush his palm over with my hand but wouldn’t stop screaming if I didn’t do it twice, everything had to be in a certain way and in a routine. I can remember when he first started nursery telling them that he would hold his hand out like it was dirty but if they brushed over twice then he would stay calm…..I thought I was nuts for telling them but at that time I didn’t care about what I sounded like just that it was so important to him. Things have got better since then he can now touch water, sand, grass, snow all the things we take for granted. He does manage himself well and will slowly on his own introduce himself first before jumping into these tactile things. Washing hair is still an issue but slowly slowly…..from shampooing hair once every 6 weeks to maybe once every 3 weeks (good job he is a boy). Staying with the bathroom theme about 18 months ago MacKenzie couldn’t even sit on the toilet seat after someone else because he said it felt soft and he would be so distressed and angry he just couldn’t, we had to wipe it several times just to get the hardness and coldness back before he could sit on it. But it goes to show that the problem still remains its just how he comes to understand and manage it in his own mind. He will now sometimes say”l like your soft now, it ok”.Clothes and bedding aren’t has easy like with coats he will like the lining of the inside of the main of the coat but as soon as his arm goes through the lining of the inside of the sleeve (which is often different) he will take it straight out and say he can’t wear it. We are alright with t/shirts but cotton shirts etc is a no no. Recently they had a dress up day at school and he didnt like the feel of the fabric of the pants and therefore on his own rubbed his legs up and down quite hard and then pressed them firmly with his hands before putting the pants back on But at least these days we don’t get the screaming he will say its doesn’t feel right. He is really clever at now managing these problems and we do get less outbursts, sometimes in certain situations/environments he will now communicate and say he needs softing, he response really well to deep pressure touch when needs calming.

All these issues have been mainly put down to him having a speech and language disorder and not autism but yet we live that high function autism life. Everything has to be taught to him which is normally just picked up, you can’t just presume he knows it even with basic things.

His language is doing really well now he does mix up he and she a lot still and it can be quite funny at times when you are out and he is talking none stop loud and says “he is very tall” when quite blatantly obvious it’s a lady. Literal language is the hardest has he has  just started to  understand that saying “you are a silly sausage” is a joke, so in every day life I do have to constantly watch what I say or do a lot of explain which might then go right over his head……see what I mean!

Please feel free to comment if you can relate to any of these issues I have brought forward or feel like you are in similar situation.

Autism Awareness Day 2nd April

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1 in 100 people in the UK have Autism and how many people know anything about it. We need to make people aware and promote it in a positive way, making those with the disability and their families a feeling of being accepted.

Lets bring our children up with the attitude that others may have social difficulties and that it is not weird. Learn them what Autism is and how it effects children and adults, therefore knowledge promotes a better understanding and kindness.

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