Life In The Spectrum Bubble

Maybe you’ve noticed, maybe you haven’t, that this blogger hasn’t been the most active these past few weeks? I’m not being lazy, experiencing writers block or falling behind! No, I’ve simply been taking time out, working on other things!

As a parent, especially to one on the autism spectrum you sometimes feel as if your whole life is taken up with social skills training, advocating, battles and special interests. You find it difficult to shut off your mind, think about anything else, take real time for you, yourself as a person.

This isn’t a good thing, we all need to just be ourselves, doing some of the things we love from time to time. Its not that I don’t love parenting my son as I do his siblings, and it isn’t because I dislike blogging because, actually… I love it! I just needed a little me time.

Things at home haven’t been too eventful… If anything drama levels have remained reasonably low so I don’t have much in the way of news to report. Little man has been experiencing some sleepless nights (as usual). What’s worse is his been experiencing some awful toothache and this has affected him badly. He is very sensitive to this type of pain and is having difficulty coping with it. His senses are in overdrive, and with refusal to see the dentist I think we are both at our wits end.

I also got a letter from his school today threatening court action. Little man’s attendance is well below but when his refusing to sleep and then attacking me as I try to pull him from his bed of a morning it isn’t the easiest task to undertake. Its not that little man dislikes school because he actually quite likes it. However, changes such as new children in his cab, new teaching staff and friends leaving, makes little man want to shut the world out.

Between looking after little man and the toddler during the day, I’ve also been busy working on my own stuff. Myself and a friend have been doing some selling at bootfairs, vintage fairs and craft markets, selling mainly that of vintage items, jewellery and other lovely bits. I actually love doing this, especially during the warmer months. Not only does it raise some much needed funds but it gets me out doing something, meeting new people.

We have to remember that just because we are parents of children on the autism spectrum, it doesn’t mean we can’t have interests, time spent on other stuff! We should be able to do this without feeling guilty too.

I’m not denying that when your child is on the autism spectrum life becomes a bit more hectic, it does! However, you adjust and adapt, making routines and adjustments as best you can.

Its easy to find yourself stuck in the autism bubble, you’ve just got to pop it, remembering that before your child’s diagnosis you concentrated on other stuff! After all,its not healthy to do nothing but study the best therapies and educational resources all day long.

We are far better parents when we are more relaxed, free from stress and happy overall.

All my children need a sane mummy… And I’m just working hard to avoid myself becoming anything other than that! After all I’ve been there and it isn’t a pretty place!

A step in the right direction for autism thanks to Anna Kennedy

I recently contacted Anna Kennedy as I read about a new dance DVD she had developed for children with autism and aspergers syndrome. 

 Anna’s DVD, ‘Step in the right direction’ has been produced in association with the world-famous, ‘Pineapple performing Arts school’ in London and a selection of children from the Hillingdon Manor school who each have a diagnosis of autism spectrum disorder.

 Anna was kind enough to send me a copy of the DVD to review with my Little man.

 Little man used to love to dance but as his grown older he does it less and less. I thought it would be great to try to encourage him to give it another go.

Little man is a child who requires a certain amount of Occupational therapy (OT) due to his difficulties with both his fine and gross motor skills, including varying areas off his co-ordination. 

 Once I had received the DVD I decided to watch it while little man was at school, just so I could get a taste for what it was all about before finally introducing it to the Little guy himself. 

 This DVD has been broken up into manageable pieces allowing you to skip between sections.

 Part 1

Introduction by Anna Kennedy

Anna Kennedy

 Anna Kennedy, founder of Hillingdon Manor school, kicks the off  the DVD with an introduction that sees here shop for pineapple dance wear for the children before heading off to the Pineapple performing arts school in London’s Covent  Garden.

 Part 2

Interviews

 Once here she introduces the viewers to some of the dance instructors at Pineapple including, ‘Maggie Paterson’ (Senior teacher) ‘Jade Flannagan’ (Senior teacher specialising in Street & Break-dance) as well as the schools founder, ‘Debbie Moore’ Anna interviews Maggie & Jade about working with the children and what their expectations were before meeting them.

 Anna, then goes on to interview Debbie who tells us about her incredible journey in fulfilling her dreams when opening what is now the world-famous school of performing arts, while taking us on a trip down memory lane.

Debbie Moore

Lastly all the children introduce themselves alongside Anna who then goes on to get them all warmed up in the third chapter of this dance DVD

 Part 3

Tutorials

This is where we get down to the business and following a great warm up section with Anna and the children, Jade steps in to show us some poppin’ lockin’ & tuttin’ (some really “cool” dance moves). Jade starts by teaching us at home the routine, he does this in easy to follow bite size pieces repeating each section a number of times before finally putting it all together and joining the children where they go on to perform the routine, incorporating some really cool freestyle dance moves, which for me was the highlight to this DVD. 

 It was great to see the children dancing, the enjoyment was clearly shown on each of their faces in the form of a massive smile! 

They are all clearly delighted to be taking part in the making of the DVD and should be extremely proud of themselves and one another for the fabulous routines they participated in and awesome freestyling they displayed. 

 The tutorials are finished off with a cool down with Maggie and the children.

 Section 4

Special features: Britain’s got talent finalist-James Hobley

Anna with James and his mum Sheila

Here Anna meets James and his mother, Sheila Hobley who tells Anna about what life is like for James (how he overcomes many off the difficulties children with autism experience, while fulfilling his ambition and dreams to dance). We learn about the barriers James has overcome and  difficulties he faced while participating in the ‘Britain’s got talent tour’ as-well as his hopes and dreams for the further.

 James goes on to show Anna some of his moves, to which she has a little difficulty keeping up with 🙂

We then get to see a delightful recording of James Hobley’s own routine.

 Lastly Andrew Stone (Star of sky 1 Pineapples dance studios with over 30 years of experience in dance, music and television) works with the children of Hillingdon Manor school on a small and final routine bringing the section to a close. 

 Section 5 &6

Useful Information & Additional Materials 

 In the last two sections 5 & 6 you can discover a little more about two of the sponsors behind the DVD, ‘MedicAlert’ (who Anna helped create the AK autism band) and ‘Childline’ (the UK charity backing Anna’s anti bullying campaign). 

We are then provided with the website address for “Anna Kennedy online” where we can read and download a number of fact sheets about the benefits of autism and dance.

These can be found at Anna Kennedy online.

Click HERE

Our Verdict

 Little man did have a go at the DVD and seemed to enjoy doing so. (He did however get a little upset when I tried to film him so we gave that a miss.) 

 His sister, ‘Alice’ who isn’t on the spectrum also enjoyed taking part, although she did spend half the time catching a glance of her self in the mirror. 

 In my opinion the routines are great! They have been put together in an easy to follow way and are not overly long, resulting in the children actively maintaining concentration throughout

 The music was fantastic, some really great tunes that made me want to shake my bootie too. 

 Anna engages the children in a great warmup routine that both myself and the Little man followed together.

 Jade Flannagan is the perfect choice for the main routine as his young and hip and the children really seem to relate to this guy.

Jade works with the kids really well and keeps them motivated with lots of positive praise and encouragement. One thing I did pick up on was there was no use of the word left and right within the choreography! Instead Jade used visual clues alongside instructions, like, placing a hand on his right arm along with the instruction on what to do, indicating that the children and viewers were to use the right arm. For me, I think this was a good idea, as the children did not become confused at the use of to many instructions at one time.

 The freestyle was the best part for me. I just loved seeing the children demonstrate their moves as their confidence was beaming throughout!

 I would highly recommend this DVD as an introduction into dance for children on the autism spectrum and even those without! I think it’s especially beneficial to those who seek lots of sensory stimulation. Children on the autism spectrum who discover an interest in dance, would benefit both physically and emotionally from such an activity. Such benefits could include, improved co-ordination skills and overall fitness and stamina, improved social interaction skills and the ability to follow more complex instructions, and importantly, development of their self-confidence which may be pretty low for those who have experienced incidents of bullying or isolation. Another excellent benefit that I found was, your child is more likely to sleep better if they follow the routines on the DVD in the evening. I know that Little man slept better on the evening we reviewed the DVD so this must be a great way to get rid off some of that excess energy our children on the spectrum always seem to have.

 The interviews were fantastic but are mainly aimed at the parent, though many children wanting to get into dance could really find themselves inspired by watching Anna’s interview with the fabulous talented James Hobley.

 Thank you Anna Kennedy for providing us with this great DVD.

We loved it!  

You can get a copy of this excellent DVD from Amazon priced at a reasonable £7.99.

Just Click HERE

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• The day my boy got his smile back. (aspergersinfo.wordpress.com)

YOU CAN’T PUNISH ME FOR BEING ME.

Stress, stress and more stress. My  three major words of the week. To say things have been a little crazy is an understatement, Its been a rollercoaster!

Been meaning to write this post since mid-week, but things don’t always go as you would like them to. All parents can tell you that autism or no autism! Well lets see, Where I begin this rant is beyond me. How about I start by filling you in on whats been happening with school ? Ok here it goes. I warn you all it’s not pleasant been a sodding nightmare to be honest.

Monday I receive a call from the school receptionist. Talk about speak to me like something you find on the bottom of your shoe . Well I’m used to her rudeness but  I wasn’t ready for what she had to say. WHAT!! You want me to collect little man but it’s only 2 pm. His doing WHAT ? Great bloody great! I’m told by miss rude that his swearing, being rude to adults, running out of school, playing football in the corridors, not following instructions and well I better stop there. I’m guessing you are getting the picture. I’m told this has been going on since lunch break ( He always has problems at break times ) His now sitting in the head teachers office and still not cooperating . I rush down there leaving my 9 week old son with a friend to find him running a muck. Oh my how has it come to this? I know something has to have set him off, something has caused his behavior to erupt in sure an extreme way, even I was a little shocked at his tone and lack of concern for my presence. We have tried everything says the head. I ask if his teacher is in or has another teacher been filling in ? Turns out his teacher is off sick. I knew their was a underlining reason for this don’t they see there always is! His frustrated, over stimulated and lashing out in the only way he knows. We talk a little outside the office Little man wont stay put and keeps opening the door and shouting silly nonsense to be honest I just wanna get him out of there now. It’s decided that tomorrow he would return as I make myself heard when I state yes his behavior seems to be bad and getting worse every break time! Yes he kicks of when his teacher is not in! and I know his rudeness is totally unacceptable. But very big but I must add, You have said a statement is not really an option so In my opinion neither is exclusion. With this we leave and myself and  Little man have a long firm chat on the way back home.

Tuesday little man returns to school his told he will need to face a punishment for his behaviour yesterday. Thing is he really don’t care! I have told them that keeping him in through the whole of break is not acceptable. Reason is it’s all the time I discovered he rarely ventures out to the playground. Not through choice but because as a punishment for something or another his to stay inside. Angry yes I am. Can’t you see open them eyes people , My son suffers from a social communication disorder he has ASPERGER’S for the hundredth time. Is attending school with asd a punishable offence? You can’t punish my son for being who he is its unacceptable and damn right disgusting to be doing this every day. If your playground and dinner hall assistants are not experienced in autism that’s not our faut it’s yours. I had a meeting with his class teacher and the latest in a long line of Senco’s. I’m sure I have spoken about this meeting in a pervious post, and this post is long enough as it is. Basically Senco tells me they have no written document of little mans formal diagnosis in their eyes there never was one ( a diagnosis that is) Shocking!!  his been diagnosed well over a year what a sham. So his been having no extra help at all. Then shock number two. A statement aint going to happen. Well assess him and we will see. No his to clever. He may not write his work on paper but will answer sums beyond his years by shouting out in class. But if his not putting pen to paper how is this relevent. I already know my son is a clever clogs but clever clogs sometimes need help to. A statement would mean an assistant could keep a watch full eye over him at break times. Or some one can work on a one to one basis with him and help encourage him to write his answers  down instead of just being verbal. It’s easy to see things could only improve. With this his behavior is band to improve ! No his to clever and even through they express to me his behavior is so unacceptable that excluding him could be an action they may consider taking in the near future his behaviour would need to be worse in order to statement! I KNOW JAW DROPPING REACTION FROM MANY.  Well it’s Tuesday 11. 30 am and I am just running out the door to attend an appointment for the baby. The phone rings. Have you Guessed ? Wasn’t hard was it! It’s the school . This time it’s not that receptionist but the head himself. His acting in the same way as he did yesterday and I don’t think it would be wise if I let him loose a lunch. Ok you want to keep him in no way! I have no time to discuss this now im busy with that I put the phone down  and in total disbelief I carry on with my day. 12.40 pm Lunch time he rings back. You will have to collect him take him home for lunch and then escort him back for 1.10 pm How the hell was I going to put baby in pram scoot down to school get him home feed him and return him all in 30 minuets. The school is just a few roads down but this is totally inconvenient so I say sorry but I’m to far away you will have to deal with him. I’m being taken to court for five months of poor attendance from june 2009. Now u keep trying to get rid of him. He excerpts im to far from home ( something I call a white lie ) but goes on to say excluding little man for lunch time everyday may be the way forward. Shocked I hang up and as I try to collect my thoughts my mind races, blood boils and I reach for my Mac to get some advice no way they can do that. I can’t  be expected to do that everyday. How could I plan my day around that. NO NO THIS WAS MY TIME,  THIS WAS MUMMY TIME, NO ONE WAS GONNA TAKE THAT AWAY.  NOT GOING TO ASSESS HIS EDUCATIONAL NEEDS,  HE DONT NEED A STATEMENT THEN DEAL WITH IT.

Wednesday 10th February 2010

Court date.. Stood in front of three magistrates and pleaded not guilty in respect of poor  school attendance of Little man and Alice.

Will need to get a case together and  a solicitor to represent me. I am told this offence can carry the prison sentence.

I read though witness statements from the Attendance & welfare officer and was horrified in discovering they have gone as far as  to twist the truth and even state I said and did things that had never happen. Like I told the support worker they assigned me from sage educational trust that little man has hallucinations after giving him his medication and would write math all over his walls! And In the 3 years she has worked with us she had never seen this behavior. OMG Number 1 yes I said he writes math all over his bedroom walls ( she has never seen his bedroom ) I however did not ever state that he has ever experienced hallucinations a rare side effect of melatonin ( I have also just discovered that it’s a side effect of his medication from the statement ).  Secondly she has visited me at the most 4 times. Where in Gods name has she got three bloody years from?

Trail date set for 30th March 2010 at 1.30 pm

Wish me luck

Petition for more services and support, SEN assessments and statements for children with autism and Aspergers in UK primary school’s.

Being feed up with all the above and a massive list of issues not listed I have created this petition for the prime minster Mr Gordon Brown. The petition has had a lot of interest from other parents and careers of children on the autistic spectrum. It is being featured on many social networks, Groups and autism forums. If your one of the many wonderful supporters that has signed your name or passed this link on to family and friends I thank you from the bottom of my heart. If we are not the voice of justice for our beautiful children who else will be. Lets do something now before it’s to late, they have grown up and as a result of poor education are suffering in the adult world.

SADLY ONLY BRITISH CITIZENS OR EXPATIATES ARE ABLE RO SIGN. HOWEVER PLEASE SHARE WITH OTHERS WHO MAY BE ABLE TO HELP.

Deadline to sign is 11th April 2010

Aspergersboy petition 2010

IT’S ALL ABOUT AUTISM & ASPERGER’S

How many people in this world can tell us what the word Asperger’s means ? It’s shocking that despite the high percentage  of people now diagnosed as having ASD, It’s still not known or it’s just greatly misunderstood!

ASD stands for Autism Spectrum Disorder. Asperger’s is a high functioning form of Autism that is on that very spectrum. Being a mother of three beautiful fantastic children one in which has been diagnosed as having Aspergers is an amazing experience for me. I love being a mum and feel it to be my life’s purpose! This blog has been created as place I can express myself, Get heard, raise awareness, stress rant and rave ( some of the time 🙂 ) But most importantly a place for me to share this amazing boy who has this gift, The boy I’m so proud to call my son! Having a child with Asperger’s or ASD doesn’t mean the end of the world! Far from it! God it can be hard and at times you feel like screaming but it’s also incredibly rewarding. ASD is not an illness but a condition. If you look for a cure I’m sorry but I don’t believe you will find one. My advise to you would be embrace and love your child. Aspergers can be seen as a gift! There will be many battles to fight and problems to resolve but there will also be many times that your Aspie child makes you catch your breath as your heart melts with pride. That I promise you.

By writing this I’m reaching out to other parents and careers of Autistic children. Lets share and advise one another. Let’s keep talking! By doing so we create awareness. If we are not the voices of our children who else will be ?

IF YOU HAVE JUST TAKEN THE BIG STEP INTO MY WORD AND JUST DISCOVERED YOUR CHILD IS ON THE AUTISTIC SPECTRUM. THEN IT’S MY HOPE YOU GAIN SOME UNDERSTANDING AND COMFORT BY READING MY STORY.

This post was updated on the 8th April 2010. This update included a name change and new image.
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