Tag Archives: SALT

Tips For Parents Of A Child Entering The Assessment Process.”

18 Aug

1) No child should receive an Aspergers diagnosis on a first appointment or assessment. That’s not to say it doesn’t happen. Yes, you maybe dead certain it’s Aspergers though professionals have a duty to explore every avenue and give your child a detailed assessment clearly observing them and then providing you the parent with a detailed document of his or her findings.

2) Be prepared, its likely (what with these awful cuts) that your child will not see the same psychologist more than once. You will feel that the continuous string of professionals are not making the assessment process any easier when you find yourselves being bombarded with the same questions over and over. ‘Yes we often ask ourselves… Do these people communicate with each other’

3) When assessing a school age child for Aspergers the team involved will usually request feedback from your child’s teaching team and school SENCO. Is your child’s school acknowledging your child’s condition? If not this can really slow the entire assessment process down. In the end the communication team at CAMHS had to go into my sons school to assess how he coped and acted in the school environment.

4) Remain on the ball. Often we are Frobed off by professionals with statements like they are awaiting a certain professional to get back to them or an appointment slot for your child to meet with the SALT therapist for an assessment. It’s at this times you often find yourselves dangling in thin air and before you even realise it its been months… Your slowly slipping through the net. Bombard the team working with your child with daily phone calls. Who cares if we are getting on their nerves? If we are silent we are forgotten and no one wants to be forgotten.

5) Keep all reports and assessment papers and letters filed within their own folder. This will help you to stay ontop of things. You will have dates at hand and be able to produce any needed documents at ease.

6) Keep your own written records. I’ve found that I’ve been told a lot of stuff of the record that could Potentially help my child but won’t in its undocumented state. I therefore make everything formal but taking notes at every meeting, during phone calls and any other time my child’s case is up for discussion.

7) Try not to miss important appointments as you will often find that its months before contact is even made and new appointments given.

8) Ask questions no matter how silly you think they may sound.

9) Trust Your Instincts. If you don’t agree with the professionals conclusions its your right to ask for a second opinion.

10) Its a long road, be prepared, don’t just go with it, be part of it! After all its your child and diagnosis could be a way to the services you require.

Teaching Communication Skills To 3-5 Year Olds

29 Oct

I receive emails on a daily basis from worried parents of toddlers or young children.

Many of these emails stress the same concern… My child still isn’t speaking or is speaking little for their age compared to that of their peers.

For others its their child’s lack of understanding of language or how to use it that’s the concern.

Little man was a very early and advanced speaker, only he failed to use certain words in the correct contents, had poor social interaction and would normally dominate conversation. His listening and communication skills are improving all the time now that he has weekly speech and language therapy (SALT) at school. This just proves its never to late to start a programme though the earlier we are taught the skills we need the better, especially in those with autism or any other communication disorder.

Its natural for us parents to worry if our toddler isn’t using communication at the rate we expect especially if we have their siblings to compare them too. But despite the worry its important to note that its not always due to a medical or developmental problem… Some children just develop that bit slower than others, where some just require a bit of help along the way.

Whatever the reason I believe it is important for all parents to encourage communication from an early age… If you feel that development is slow progressing or even too advanced, early intervention is the key.

Those with experience will know just how long waiting lists are for Paediatricians or Speech Therapist… But there are things we can do as parents at home.

I was extremely impressed to hear about a new developmental tool called “chatting with children” I haven’t really seen anything of this kind before and feel its something that could make a whole lot of difference to parents everywhere.

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Chatting With Children is an activities pack designed to build the language development in children aged 3-5. Even better its been developed by Kate Freeman a qualified Speech and Language Therapist.

The pack from I Can (the children’s communication charity) is the third in its series following Babbling Babies and Toddler Talk (also created by Kate Freeman).

Chatting with Children is a stunning pack of 30 fun and interactive activity cards aimed at helping parents and practitioners develop young children’s communication skills. The pack also comes with a well written top tips activity guide that has been designed to help its user get the most from it.

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Inside this kit that resembles a hard back book, you will find 30 beautifully illustrated cards that make up a number of activities designed to encourage the language and communication of children aged 3-5 years. Each task is simple yet provides effective ways of enhancing speaking, listening and understanding skills. The kit has been Designed in association with Studio Conran and illustrator Owen Davey, who has designed each beautiful activity card to feature an activity designed to develop a different aspect of communication.

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What I like most about this pack is that this is a tool recommended to professionals such as therapist & practitioners yet its simple enough for a parent to use at home meaning we have the tools of the professionals at hand to work with at home whenever we want to.

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The fact that the pack has been created by Kate Freeman A Speech and Language Therapist who holds over 15 years experience, gives me even more confidence when using the pack and applying each individual activity.

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Each activity is so simplistic and easy to follow that there is not really any excuses for not being able to try it on a daily/weekly basis. Its not time consuming whatsoever as there is always little if no set up involved.

Toddler Talk and Chatting with Children are each available in paperback for £7.99 or hardback for £12.99 and its available over at the I Can website

In my opinion this is beyond reasonable, I expected it to cost a considerable amount more considering the market its targeted at. I normally find most tools designed with the aim of encouraging a child’s develop within any area, to be over priced and beyond most families reach. So I’m seriously impressed with what I Can are providing here for little money!

What’s more every last penny of the proceeds are put back into the registered Charity “I Can” so they can continue to provide help and resources to parents like you and I.

Any parent with a question or concern about their child’s communication can contact the I CAN Help Enquiry Service for a call or email from a speech and language therapist – visit www.ican.org.uk/help

Disclaimer: This is not a paid post. I was sent a sample of Chatting with Children in order to share my honest opinion… I have decided that this will now be donated to a local Speech And Language Therapist in our area.

Why don’t you believe me

5 Jun

Why don’t you believe me?

As a parent to a child with Aspergers syndrome, I’ve heard myself ask this question a thousand times in an array of situations.

I really couldn’t care anymore if the lady up the road thinks I’m a bad parent and my son is the child of the devil!

But there have been some situations in the past when I have felt like bashing my head continuously against a brick wall, times when I needed support and understanding. People I felt should be naturally supportive were not, instead they made me feel as if I was an overreacting pain in the arse, one who had a problem with parenting… One who was full of Nonsense!

Those people were my child’s teachers, these people almost cost my child his diagnosis!

My child is challenging at home yet he doesn’t show such behaviour when at school is a common issue for parents who are going through the procedure of trying to obtain a diagnosis of Autism for their child (this is so common it should be added to the criteria for diagnosis)! It’s not that we are crying out for our child to have an attached label but without it we have little chance of obtaining the support we crave for both our child and ourselves.

It’s important to remember that us parents are not alone in such situations, but at the time it sure does feel like it!

It comes to a point when one really does question their own skills as a parent, we often find ourselves questioning our own abilities to do the job correctly. I actually started to envy other parents, their relationships with their children! “Why doesn’t their child violently hit, bite and kick them?” You start to wonder if your child loves you and if he doesn’t then why the hell not? You start to walk on dangerous ground when you start to wonder if this really is a case of “poor parenting”

It’s not easy knowing that your child is sat like some little angel in the class room, yet a few hours later his walking through the door and trashing his bedroom! Then someone suggests the autism spectrum, at first you instantly refuse to believe it, but the more you learn about it the more you realise the pieces of the puzzle begin to fit, in some sense you find comfort in the fact it isn’t down to you, your child doesn’t hate you, he just has difficulties regulating his own emotions, why? Because his frustrated with over loaded senses and an altogether different take on the world.

You climb mountains to get on that waiting list for an assessment, when you finally get that appointment the paediatrician nods his head and tells you his confident that your child has traits consisting of a diagnosis of autism ( in my case Aspergers)! More assessments follow and every medical professional your child meets draws them very same suspicions. Then they requests feed back from your child’s school and although you understand there to be no challenging behaviour you are confident that the school will share other concerns, odd behaviours and so forth!

So, why is it that they don’t… Instead they write a report that indicates your child is a typical boy, a child who communicates on the same level of that of his peers? Why do they fail to highlight any bullying, obsessions or quirky behaviours?

I speak for thousands of parents who have all had their child’s diagnosis held up or dismissed completely as a result of such report writing!

I remember feeling completely alone, So angry, So let down.

Every concern I had was disregarded as a lie, my child’s head teachers blamed me for the way my child refused to dress for school of a morning or when he failed to sleep the entire night. I began to hold back my concerns for fear of being judged!

I had now entered a new world, one that no longer got left behind at the school gate! A world of TAC meetings, CAF forms and assessments, a world of battles ones I’d eventually become accustomed to!

Sat in my doctors office, head in hands I cried, I cried so much I could hardly get the words I needed to say out of my mouth and into the listening ear of another! I was tired of fighting the system, I was tired of fighting my child to get out of bed and dressed each morning, I was tired of having my concerns pulled to pieces, most of all I was tired of being me.

It doesn’t help when your own mental health begins to slip away, when you find yourself only able to get through a day once you’ve tanked yourself up on Prozac! I remember reading my child’s education record some 2 years later, I remember the statements made in relation to my own mental wellbeing! What still makes me angry is the fact that my own health only suffered because of them… I didn’t do this to myself, they did it! Being strong enough to now say that with confidence is a wonderful thing!

Despite the depression I continued to battle on when eventually one year after that report my child received an official diagnosis of Aspergers Syndrome!

Why now? He had now seen a number of professionals and the very last assessment was the one that finally closed his case. A video interview with a speech and language assessment who specialised in the autism spectrum, plus a play assessment which helped highlight his intense special interest and rigid thinking.

School still failed to acknowledge his diagnosis as they should have, he was no longer 5 but 8 his traits were more noticeable yet the school failed to make prober adjustments. It normally came back to the issue of little man having no statement of special educational needs (something I later went on to successfully acquire, though not without a fight). Eventually though things changed direction and finally little man settled at home. This was down to working out his triggers that lead to meltdowns, different reinforcements for desired behaviours etc. Not everyday was problem free (far from it) but the hitting slowed a bit and I felt as though I had gain some control back. This was due to now having a better understanding of his needs. However, with the school’s complete lack of adjustments or understanding, little mans challenging ways started to surface once more… Only this time, it was within the school setting!

It’s a long story, but put it this way… That same child (the ‘typical’ little boy) was now excluded on a weekly basis, never taken on school trips and even taught In isolation. All this lead to a disability discrimination case which I finally agreed to settle before the hearing once all my commands had been met! (letters of apology, rewriting of policies and teacher training)! What a turn around!!!

My child now attends an independent special school for children with autism and Aspergers. Life isn’t perfect, who’s is! But we have the diagnosis, the statement and finally the right school… One where I no longer need to ask “why don’t you believe me”

I’m in the final for the mad blog awards in the inspiring category voting closes today (6th June 2012) at 5pm! Please if you love the blog pop over and give us your vote. Mum and Dad Blog Awards 2012

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.

What doesn’t kill us makes us stronger!

31 Aug
Toilet paper

Image via Wikipedia

Warning, the picture of the loo roll indicates the amount of crap mentioned within this one post! Seriously continue reading and you will see!

So, the return to school is upon us, we hit the high Street for uniform, stock the fridge with packed lunch, try to re-establish the already crap bedtime routine and pray the kids will get up in the mornings.

I’ve never had the privilege of looking forward to the kids returning to the land of learning so that I, ‘Mummy’ can over indulge on cbebbies with little H. I always kinda preferred the holidays over the term times, and never acquired that feeling that many do, “I can’t wait for these kids to return to school in September!” When the Little man was in his old school he was normally excluded within a few hours of returning. My daughter has no problems in school, but then again she isn’t expected just to fit in! That’s right, my daughter doesn’t have Aspergers syndrome which means she is welcomed on school trips and is given a part in the Christmas play. I don’t need to wipe her tears and try to find the answers as to why she isn’t allowed to join in with her peers or why she is being taught in isolation as opposed to in the class-room alongside her peers. Its simple… My daughter has not been discriminated against for being “different” she’s one of the lucky one’s!

Little man wasn’t, he sadly went through all the above and more, that was in-till he moved to a school especially for those with autism and aspergers. He only started the independent special school a month prior to the school holidays, yet in that short space of time, things were amazingly different, so much so, I cannot find the appropriate words to describe this situation any better. Normally by this time of the month dread has started to set in. I find myself becoming depressed with what’s to come, a pool of sick lay deep in  my stomach waiting to be stirred! Yes, I’ve done all that rubbish of trying to remain positive, “LOOK AT ME I’M SO POSITIVE, I MAYBE SMILING LIKE A CHESHIRE CAT ON THE OUTSIDE BUT GOD I’M HOWLING ON THE INSIDE”. When you have been crapped on as many times as we have its pretty hard not to lose all hope.

That’s why it’s strange, I haven’t got that feeling of dread, that deep Pit of sickness in the bottom of my stomach. Don’t get me wrong I’m thankful it’s gone yet I don’t know what to replace it with? “God at times I make so little sense, I struggle to understand myself” Surely I replace it with nothing, isn’t this the overall beauty of it, the beauty of no worries? It’s been so long that I’m totally lost when it comes to being free from such dread, seriously, to many I’m I may even sound as though I’m missing the drama! Well, I’m not, I promise you that! 

It’s not just the removal of the dread surrounding the return to school, it’s all of it, the whole stinking lot of it! You see, you spend so long fighting, it becomes a normality! You don’t see light at the end of the tunnel, it takes over your life… the daily calls to collect your child, the letters you write, appeals and representations you make on their behalf. You give it all you have, wishing for an end, a break from the grilling daily fight, then your hard work pays off! Your child gets into that special school, yet when they do… the massive hit of relieve you waited for doesn’t bowl you over quite like you expected it too. Instead you find that you have gone into some kind of shock, you’re unable to settle and adjust because I guess you’re waiting for someone to take it all away.

I know we are not completely home, safe and dry, (can you every be when your child has special educational need, living amongst a system obsessed with saving money regardless of how its achieved). Yes, anything can happen! Yet this is the same with everything in life, meaning taking each day as it comes, enjoying everyday that don’t bring with it a pile of stinking poop.

Friday, last week I got that bit of paper I’ve worked so dam bloody hard to get. Yes, It has been placed in my hands previous, only to be given straight back with the words, “Stick it where the sun don’t shine” attached to both Little man’s proposed and final statements of Special educational needs.

Gosh, I was fast becoming an expert on the use of fluffy wording that gave the LEA a, “Get out of jail free card” 

Excepting such an insult would make the whole deliberating experience to that point, completely and utterly worthless. 

Believe me, having a statement that states nothing other then good old fashioned common sense, was not the kind of statement that would see my child’s special educational needs met. I had constantly heard that it was my duty as a parent to ensure my child’s attendance at school during the height of Little man’s school refusal! So, wasn’t it my duty as his parent to ensure that when he did get there he was happy, cared for, involved, treated respectful, made to fill his contribution to the school along with his individual opinions were valued?

Such question pushed me to where we are today, where I was last Friday!

It had been pretty quite for some time (I hadn’t heard a peep out of the LEA) Little man may have already gain the place we so furiously fought for, yet his statement still remained a sheet of paper not even worthy as bog roll! For this reason the tribunal was still scheduled for the 26th of September.

It remained in the hands of the Gods (well, at times I’m sure they think they are)! Three independent reports, detailing a wealth of information! These were reports so detailed and lengthily that I myself discovered thinks about my child causing me to both cry and smile. The whole tiresome experience of trying to get your child a statement of SEN sends your head spinning in a total mass of emotions.

I opened the email from my solicitor and read how she had received the copy of a proposed amended statement, that was sent to me (Well, I’m still waiting) However not to freight, with the request for a forward the solicitor sent me a copy via email that I so eagerly downloaded and with bated breathe, I opened the attachment! 

There in black and white was every amendment requested, no corners cut, no compromising! Was the LEA all out of compromises? Were they beginning to have enough of the battle, just as I had done all so long ago? Surely they weren’t providing my little man with the ultimate gift available to them… A package of provision to unsure my sons needs where met, like he so greatly deserved, like you or I?

YES, YES, BLOODY YES…….

I looked over in his direction and let out a yelp, followed by a, “WE DID IT BABY!”

He smiles, high five’s me then sits down to continue his game. He was happy for his mum was happy, however he could not fully understand the extent of relieve that the battle being fought was finally over! He had no clue to what might have been!

And do you know what? That was just the way I liked it!

I never want to fight a fight like this again, yet I know that there will be times I will need to fight my sons corner, whether it relates to his educational or social needs, well, as for the remainder of his childhood anyway! (I’m pretty sure he will be somewhat of a great advocate for himself when his older!)

For now I’ll try my hardest to adjust back into a life of normality (what ever that maybe)! I’ll take each day as it comes, enjoying every school performance that both my children take part in. I’ll roll about in the comfort that he now feels that he belongs .

I’ll channel my desire to help others in that same position, into my work as a voluntary tribunal support adviser, I’ll spend more them on my blog indulging my passion to write and throw myself back into my passion for art!

I’ll discover, learn and watch my new interest in photography evolve 

I wont miss a single moment of my toddlers amazing milestones!

I’ll just try my best to be me again

Only a much improved vision

I can officially confirm

“What doesn’t kill us can only make us stronger!”


Cost-free effective ways to help your child on the spectrum

29 Jul

There are so many parents with children on the spectrum that spend thousands of pounds on the new latest therapy said to improve a child’s communication difficulties or their sensory processing needs. Not everyone has the funds for this or any other therapy besides, whether that be speech and language (SALT) or occupational therapy (OT)

So, here are some tips of things you can try that are cost-free and effective. Yet you should note that, 1) Here, you wont find any freebies,  just my little old  tips. 2) I’m not sharing a cure (there isn’t one)!  3) Nothing is a quick fix and finally… 4) Everybody is different, the difficulties mentioned in this post may or may not even affect your child like it does mine. Remember, somethings work better for some then they do for others. 

 Note: You may want to discuss some of the methods below with your child’s doctor to ensure their suitability.   

Roll play to enhance imagination and improve social skills: Play games that require imagination. Shops, is the type of game children love to play and my daughter has shown her brother how to play shops in a non repetitive way. (well, his getting there)! Little man has the mathematical brain so he does all the pricing up and change giving etc…This also teaches important ‘Life skills’ essential to children with social skills problems and difficulty with social interaction. There are other games you can play, like,  Schools or emergency services. Little man always pretends to drive a bus through the game is often repetitive it has still required a certain amount on imagination, which is what we are trying to achieve.    

Body brushing for tactile sensitivity: Body brushing helps children on the spectrum who are sensitive to certain forms of tactile stimulation that can come from a range of different textures. Little man is tactile defensive and has issues when wearing certain items of clothing due to the materials they have been made with. Body brushing is a technique that would normally be carried out by an OT and Little man currently has it  done during his OT sessions at school. However this can be done in the home in addition to an OT programme. (You may wish to get your OTs advice first.) If you’re not in a position to get your child on an OT programme due to funding or because of an inadequate statement of special educational needs, (SEN) but you are fully aware that your child’s over sensitivity to touch, this is something you could do at home on a regular basis. We just lightly brush Little mans arms and legs with different objects of different textures that each give off a different sensation. Good items to try are, body brushes, used for showering and different types of sponges. Body brushing a few times a week for ten minutes a time could make a huge difference to how you child copes and responds when dealing with different tactile experiences.

The guessing game: Another way of helping a child who has tactile sensitivity is again though play! Placing a range of different objects into a large paper bag and getting your children to place their hand in the bag and without looking ravage around and fill for an object. Before pulling the selected object out of the bag, ask your child to describe what it is they can fill out loud so you can hear, e.g… it’s smooth, quite big, round etc…,  etc…. Then continue on by asking your child to guess what it is that they think it is that they are holding. This again gets your child used to different textures while helping them think outside the box. 

Special interest: Encourage your child’s, “Special interest” embrace and celebrate their interest no matter how unusual or strange they may seem. Most people on the spectrum have interest that are somewhat,”Obsessive and a little over powering! If it really is becoming too much and completely dominating their time to the point it affects sleep, school or any other important events then try to limit the time spent on the activity, coming to a compromise! For example, “You can play buses or memorise bus destinations for half hour, then we will bake cakes!” The secret here is to make sure the compromise involves something else they enjoy (Even though it isn’t going to be something as important as that of the, “Special interest” it can still be extremely effective, so…  It’s Worth a try at least! )

Praise: Use lots of praise, if anything, “Over Prise” Catch them doing something good and praise them for it! If your child closes a door as opposed to slamming it as he normally would, praise him at that exact moment, not later but straight away! Trust me it helps!

Social stories: Write social stories to prepare your child for the unexpected or  just  those situations/events that worry them. There are plenty of free resources on the web and there are sites tailored to help you create your own social stories. Taking pictures is always an idea. If writing a social story about visiting the dentist for instance, you can take pictures of the dentist room and even the dentist if he agree. Use them in your social story, helping your child to familiarise themselves with the surroundings in-which you wish them to visit. 

Visual aids: Use visual aids to help your child follow a routine, whether that routine is for the whole day or just part of it! (Bed or bath time.) It can be expensive to purchase  pre-made visual aids so why not make these yourself? Again there are sites that are designed for this, ones that provide free images that are designed for this very purpose. You can also look for your own images by googling, “Free Clipart” be sure to check the terms of download and do not use any images protected by copyright laws. If you are a creative person you could draw your own symbols (this doesn’t have to be anything complicated, draw a bed for bedtime etc…. put the word, “bedtime under the image and cut out in the shape of a square) As with the social stories, you can always take your own photographs, e.g, a TV for telly time, their bed for bedtime the bath for bath time. We didn’t use real life images but a mix of downloaded, printed images and symbols that I drew and photocopied as spares. We used visuals to help maintain a bathroom and bedtime routine! After a while we changed from pictures to words and this works just as well.  

Energy burning exercising for your child: Bouncing, “Yes” Bouncing! Its great fun and takes a lot out of a child. If you have a garden that happens to have a trampoline, then of course this is perfect. I like to get little man jumping on our trampoline, sadly as the novelty wears off over time, he is less keen as he once was! Yet it’s not all about trampolines but about burning your child’s access energy so they are more restful at the times you want them to be, like, “Bed Time” I’m not suggesting you go out and buy a trampoline (that cost money and this post “Isn’t” about money, it’s about doing things to help your child that don’t cost a penny)! With that in mind, why not let your child run out their energy at the local park; go on a bike ride together; if your child does enjoy sport, (some kids on the spectrum do) then play a bit of your chosen sport after dinner. These activities can give the same effects as jumping on the trampoline and there all free!

Art for improvement of motor skills: Try to get your child involved in art, whether that be a drawing, painting or a creation of a “Double Decker Bus” (Yes I’m referring to my own child and his special interest. You could actually use your child’s interest to encourage art!) Art helps with a persons fine motor skills and that of hand-eye co-ordination and is great for all child not just the child on the spectrum. 

Memory games: Some children on the spectrum have poor short time memory (Like remembering an instruction, but more the order that the instruction should be carried out)! Little man has an amazing memory for remembering bus numbers and their destinations. He also has the ability to remember song lyrics very quickly. When it comes to fetching something, like his shoes or something else I’ve asked him to get for me that’s upstairs, you can bet your life on it that his forgotten by the time his reached the third step. Good memory games include, “Go fish” which is a card game and, “Pairs,” another card game. One of the best games we have played is one where we take it in turns to hide two or three items around the house and garden ( you can build up to more items with practice). Then the other person must find them by way of following instructions and clues. The person who has hidden the objects must remember where they have chosen to hide them while giving out instructions on how to locate them to the other person. This not only helps with memory but social interaction and multi-tasking. When your child is taking the turn of the person looking for the objects, they will improve the skills needed to follow a sequence of instructions. This is a game that helps children of all abilities, develop and improve some of our most needed skills ready for adulthood. 

Tracing: We have a light box that both Little man and his sister use to trace pictures on. Yes, Little man just wants to trace buses, but who cares, like I said before, “Embrace” their interest! To trace a picture does wonders for a child’s fine motor skills and can be done without a light box,  just a few sheets of good tracing paper alone. 

Money box: Help your child get rid  of the unwanted language/behaviour for good! Do this by, deducting pennies from their pocket-money. The trick here is to make your own simple money-box by using a clear container, slitting a hole in the top to drop the pennies into. They are then able to see the pennies mounting and it’s likely to make a bigger impact. If I tell my son his lost a £1 of his pocket-money on Friday, it just doesn’t sink in! Why? Because it’s just words! Like many kids on the spectrum, Little man needs things, (even sanctions) to be visual and this is! This is only our first day trying this out, but I’ve heard it works for some and I’m taking this approach with Little man and his sister as I know it will also have some benefit on her too (I must add she doesn’t swear but lately hasn’t been too worried about giving mum a little attitude)! There is also the option in allowing your child the chance to be rewarded with pennies being redeemed from the box for behaviour that is consistent with your expectations (The trick here is not to make it an easy solution as this may seem like you’re giving in to their demands)! I will report on our process over the coming months.

Sensory seekers: Make your own play dough as many children with autism seem to love this stuff, not only is it fun creating stuff with it but many kids like the texture, the way it feels when playing with it. Note Be careful they don’t eat it, Little man once did! (Though home made dough is non toxic so don’t panic if they do)!

Record and Monitor: Create your own diary as to record the foods your child is eating. Analyse the graph and try to establish if there are any patterns that give clue to any triggers for challenging behaviour, anxiety or sleep difficulties. There are many food ingredients in our everyday diet that can send a child on the spectrum spinning out of control. This form of documenting can be applied in other ways like, the recording and monitoring of meltdowns to establish a trigger(s). Over a period of time this could potentially reduce the number of  blow ups your child engages in!

Adjust your language: Its simple and effective! Avoid the use of ambiguous language! Speak clearly saying exactly what you mean! This avoids misunderstanding. Metaphors are a big No, No in our house, (when they slip out, I pay dearly).

Reward: Positive behaviour should be rewarded continually! This can be given in tokens allowing your child to collect and work towards something special (like a game they have wanted for some time, etc.). This is something we have done with Little man and his new school continue to do this. So far so good! (Just look at last weeks post, A little inspiration’) 

Offer alternatives: If like little man your child has a tendency to use fail language to the point it’s extremely worrying and not to mention embarrassing then try this! We have told Little man to use alternative words like, “Duck Off” or “You Witch” (‘Duck’ in replacement of the “F” word and ‘Witch’ in replacement of the “B” word) Yer, yer, I know it sounds silly! That’s what Little man said! But you see, Little man can be very grown up or very immature, every time he said Duck off, he would burst out laughing making him want to use the Duck word more! We still have a very long road ahead. Swearing has been a massive issue with little man for a long, long time now! 

 Independence: Remember your child will grow to be an adult just like all children do. Allow your child independence as they grow. Small steps that gradually increase to bigger ones, “Yes it’s harder when your child has social communication problems” but that don’t mean to say you should stand over them all of the time! (Of course this statement depends on the degree of autism your child may have.)  

Holy Macaroni Its A Panda

29 May

It’s around 1 P. M Friday 27th, May and I’m applying the last coat of mascara In my desperate attempt to become something of a yummy mummy, though human will properly do just fine (no sleep the night before makes this a challenge). The plan is to make myself somewhat presentable in-order to escape this house and the housework that comes with it and instead hit the shops before my little “cherubs” return home from school! As I grab my handbag and a pair of lifesaving oversized sunnies (recommended for any tired mummy for hiding a multitude of sins ), I set off for the door where I’m greeted by our “ever so friendly postman”.

Bills, bills and more bloody bills… Hang on what’s this??

Err, I hate surprises, in my experience surprises put through my letter box are not usually the welcome type!!

I tore open the envelope and began to read… blah… blah… blah… “Holly Cow!!” I couldn’t quite believe it! I read it again, then again, then yes, you’ve guessed it… AGAIN!

My eyes start to blur, a tear drops onto the paper, closely followed by another, they rapidly increase in-till the words written within the letter are no longer recognisable.

For once these tears were not caused by sadness, but joy, relief and gratitude! Throwing my head back, I looked up above and said aloud, “Thank you god, thank you!”

My Little man had just been given a chance, a way through, a future!

This letter was from a school, not just any school but one that I have been keen for little man to attend for some time. (Keen being a slight understatement!) The school is fully independent and even better it’s an autism specific school.

Holy-Macaroni… Its so long since anything went right with little mans education that I was a little unsure how to react. Is it appropriate to give it some… “Woo-hoo get in there my son!!” (Quite literally) How about engaging in a little victory dance? One things for sure, as ecstatic as I was, something seems to be holding me back from doing either!

It’s Just a school placement right!

It’s so much more then that for us, for Little man! It’s his chance! Shamefully it’s been a hell of a long time since anyone had been willing to offer my son such a thing!

Do you know how it feels to suffer rejection over and over again? Maybe you do! But how many people can honestly say they knew that feeling at the young age of ten? I’ve watched every last inch of Little man’s self-esteem fade away, I’ve seen & wiped the tears from his eyes, I’ve spent days and nights giving him reassurance, trying to repair the damage and help him gain back his confidence… only for someone to come along and undo it all again, all them hours, days and weeks to make progress… vanished in seconds.

The worse thing of all is the questions projected at me! I’ve had to answer questions no mother would ever expect nor want to answer when their ten year old child asks, “Mum, why can’t I just be normal” or “If there is a god, why wont he help me fit in?” These are a selected few… There are sadly many more, some I find I am unable to write, by doing so I become a broken mess with questions of my own! This accompanied with his tendency to self harm by throwing himself into brick walls or his scratching his arms till they bleed is the extent of damage been done at the hands of those that should have provided an education suitable to his needs while ensuring his emotional and metal well-being was protected from harm, but instead taught him that, “it isn’t OK to be who you are!”

My son went through something I wish for no other child or adult! He was discriminated against for being the person he is, because it wasn’t what was considered “Normal”, what society expects from a child! As his mother I felt somehow responsible for this after all it was me that placed him in this mainstream primary school! I finally did remove him from at the beginning of December 2010, which felt amazing for all. Being a parent who has a legal duty to ensure their child is in school has been a nightmare for me! I have a child with social communication difficulties who developed school phobia (Yet no one told me such a thing existed) why ever not? After all this landed me in court.

The above was a situation I was placed in twice and of course this was before his behaviour became unsettled & challenging in the school environment.

It was towards the end of year three that things change! Along came a string of both unofficial exclusions (aka Illegal exclusions) and fixed period exclusions with added threats of the permanent type on a regular basis. There was even an unsuccessful push towards a pupil referral unit (PRU). I decided to get myself educated on education law… More particularly that of ‘Special educational needs

When your child is excluded or removed form every school trip/activity, isolated and hidden on the day of inspections, then you know there is something very wrong happening! Just before our tribunal hearing for the case of disability discrimination, I finally agreed to settle. A formal letter of apology was given to myself and Little man, review and adaption of policies was agreed, and most importantly staff training in special educational needs and discrimination would be carried out by July this year! Having removed him from the mainstream setting he has now been out of school since early December last year. Yet before this time he was only in half days taught in isolation (himself and a TA) this or exclusion meant he was educated at home more then in school. Since January he has received home tuition, on a part time basis of five hours per day. During this time and also on this very day I have been battling for amendments to be made to Little man’s final statement of SEN. This had been so badly written and lacked so much provision it wouldn’t be worth having (In other words it was no worse then not having a statement at all) Of course the LEA wouldn’t agree to the high fees of the independent school and firmly stuck to their guns, Well… they did up in-till time started running out. Having searched high and low for a state run special school over an area of around four or five boroughs, with all schools claiming they could not meet Little man’s needs. The LEAs response to the tribunal on the 5th of this month therefore stated that they are no longer in a position to oppose pt 4 of the statement, “My request for the independent school” as they were unable to secure a placement anywhere else!

Wow.. This meant that the LEA had approached all the school’s they felt suitable for little man, yet all refused… Although I wanted my Little guy at the independent school, it was still disheartening knowing no one else were willing to give him that chance

The school had assessed Little man in the library setting on the 16th and just this week he took a tour of his soon to be new school. Although he states his never going to a school again and his now really attached to his tutor, something magical happened as he liked it so much he asked, “So, when do I start?”

A slow transition at little man’s own pace is planed. This will involve his tutor attending alongside him in the beginning gradually reducing the support as his confidence grows.

I won’t lie and say I’m not scared, I’m petrified! Yet something tells me to put my fears aside because this is where it all begins, this is where it gets better! I have the pleasure of seeing my child happy as over-time he rebuilds all that’s been lost and damaged along the way, while achieving his dreams & showing everyone that never offered such chances or failed to see him as more then a child with difficulties… what they missed out on! An Amazing boy With Aspergers

Oh, in cause you’re all wondering… Did I make it to the shops? Yes, I did, though I wished I had looked in the mirror before setting off! All that crying had me mistaken as a Panda bear that or battered woman

Remember if you like the blog and think me and the little guy deserve a nice shinny award then please vote us the most inspirational blog at the ‘Mad blog awards 2011″

A love hate relationship

1 May

So, today I’ve been inspired to write this post by my beautiful daughter.

You see, my little princess is feeling a little left out! I guess I haven’t really treated her like the little princess that she is just lately.

I hold my hands up, life has been far to busy and she hasn’t received quite as much attention as I would have liked to have given her. I’m not stating I’ve neglected here, “As if my little diva would let me,” I’m merely stating that we need some one-on-one time without big brother! There has been less chick flicks & girlie pampering but far to many tears.

I look at my daughter with such pride, she is this truly amazing little girl who never fails to melt my heart. Like most siblings of Children on the autism spectrum, she seems quite mature for her eight years.

Over these past few months, which I must add have been pretty emotional for all, I’ve noticed my little girl has mimicked one or two of little man’s behaviours. It doesn’t take a genius to know why she has done this, after all little man gets quite a bit of attention when displaying such behaviours. Alice-Sara (My daughter) has claimed that she can no longer use certain cutlery when eating her dinner as it makes her feel fuzzy (tactile sensitivity). She has stated that it’s to noisy in school and has gone as far as throwing a tantrum over a miner mishap that wouldn’t normally bother her. This isn’t all! More recently see seems somewhat resentful towards her brother. It’s understandable given a good degree of the time he isn’t very nice to her and is extremely hard to live with, but it’s also to do with how much time I need to spend attending to Little mans needs, both social and educational. Last week I almost died of shock when my daughter, who enjoys school refused to attend. She throw me with her claims that she hated it and certain teachers didn’t understand her, yes, something her brother has stated through sobs of tears! She insisted that in-order for her to attend I would need to write some letters and sort things out in terms of her education! She also informed me that maybe it would be better to home educate her for a a bit while things settled down, Her worlds not mine! “Guys this little girl has a stack of friends and is popular with both the pupils and the teachers. Her reports always come back glowing with nothing but prise written all over them”. I knew what this was really about! With Little man’s pending Sen tribunal due to be heard in June, I have been writing statements, emails and filling out a ton of paperwork, mainly parental information needed to form part of his independent SALT and EP assessments. I have also been doing quite a bit of casework for my role as a TSS volunteer. Alice-Sara confirmed this to be the issue when I insisted we talk about it on the way to school when she so angrily stated why storming towards the front door, “Oh, You would have done it for him.” Yes, ‘him’ meaning Little man!

Alice-Sara loves her brother, however things are not always easy for her. All brothers & sisters normally quarrel, I’m not denying that, but come to our house, I promise you its beyond ‘Normal’!

Now, it’s not always the little dude who is the one to kick things off, my daughter has become accustomed to setting him off and she’s learnt how and what buttons to press in-order to get her desired reaction. However his rigid thinking and tendency to be inflexible and controlling has either brought her to breaking point or reduced her to tears. Lately she can’t seem to breathe without it bothering him. Just a few days back little man treated the family to a night on pain-killers. My daughter needed Calpol (children’s medicine) for her headache and although I had just taken a couple of good old paracetamol for my own chronic headache, I could have done with something a tad stronger like a few handfuls of tranquillisers to knock me out for the rest of the week!

Alice-Sara decided that having tried a ‘Fish Finger’ for the first time they were actually quite yummy. When dished up and the kids sat down for dinner, little man’s eyes wondered across the table in the direction of her plate. “OH NO…”

Little man: “Mum, you’ve given Alice the wrong dinner!”

Before I could answer…

“No, she hasn’t. I like fish fingers now.” Announced Alice-Sara.

Well, what happened next wasn’t anything unexpected as it happens on a regular basis! A full-on blow up was had that consisted of him claiming that his sister shouldn’t be allowed to like fish fingers as he likes them! “She’s copying me,” and “You’re horrible mum! They were my fish-fingers!” Those statements and a load more, accompanied together with kicking doors and throwing whatever was in his reach went on for a good proportion of the night. A real head banging event!

Last spring when things were really difficult at school for Little man which resulted in some challenges at home, I began to worry for both my Little man and my daughter. His aggressive behaviour was at a point that was deeply concerning. We went on a day out accompanied by my friend who ended up having quite an eventful time and one I’m sure she wont forget for some time! It was during this day out that I decided we as a family needed to seek professional help & support! Alice-Sara was happily flying a kite on the heath following the ‘Bike & Kite’ festival we had just attended. Out of nowhere came little man who had decided it was time she stopped! He run over giving her a massive shove that saw her fall to the ground. No tears followed, she didn’t even complain, just got up bushed herself off and returned to the joy of flying her kite. In that exact moment I realised that I had just witnessed something that scared the ‘crap out of me!’ Was this the ‘Norm’ for her? Did she consider it an acceptable thing for her big brother to have done? Would this little girl ‘my little girl’ grow up thinking it was Ok to be pushed around? I don’t want my daughter to ever allow herself to be treated like this, not by anybody including that off her big brother! It was lucky that at this time I was in contact with a lady who works for the autism outreach service for our area and how lucky was I when she agreed to visit me at home and have a chat with my little princess. I also gained some good ideas on strategies that I could implement that would hopefully stop little man becoming so physically aggressive towards his sister. It took some effort but results were seen, his hitting faded out and Alice-Sara would no longer turn a blind eye to his behaviour.

Sadly these past few weeks something has changed in the little man and myself and daughter have received some unwelcome attacks as a result. He even attacked his sister on a packed train when returning from the West End because she, ‘Disrespected Transport for London’ when placing her tired little feet on the seat she was sat on.

How can I make it stop? Consistency is our only hope. Strategies that we used last year have been tried but sadly failed, however this mum is on a mission and won’t give up on finding another strategy that works!

I’m guessing a number of parents of children on the autism spectrum will agree… consistency is a ‘must’ for all children but isn’t the easiest thing to apply when dealing with the child with Aspergers and they’re challenging behaviour.

To bring this post to a close I’ve finished with something positive. After all this talk of violence I think I need to! So, besides sharing some contact details for sibling support groups that some off you may find helpful, I’ve also included this beautiful picture that I captured yesterday on the train when on our way out for the evening to see a show in the West End to celebrate the Royal Wedding. Little man has his arm around his sister who happily excepted a hug as opposed to a slap or a punch! No-one requested he gave her a hug, it’s something that you just don’t see him do! I don’t know who was more surprised me or my daughter!

The Charity Barnardo’s run a number support groups for siblings of disabled children around the country. Some groups are mixed for both the Sibling and their brother/sister with a disability, whereas others are dedicated to the sibling alone. (028) 90672366 is the contact details for the London regional office. If anyone requires the number for their area drop me a comment or contact the above number as I’m sure they will help.

Contact a Family is another organisation who cater for siblings of children with disabilities. Further info can be obtained by calling… 0808 808 3555

Mencap are happy to put people in-touch with their local sibling support group. The number for England is: 0207 4540454

Kids are an organisation which runs play, education and social initiatives for disabled children and it is suggested that siblings may also benefit from their clubs, outings and residential weekends, and can be contacted on: 020 7359 7635 email: enquiries@kids.org.uk

The fight to get it right

27 Jan

It’s not easy being a parent, the choices we are faced with can be overly overwhelming. For our choices impact greatly on our children. We are forever making decisions for them, sometimes it’s done with ease… What to dress them in as little ones, what to get them for Christmas & birthdays, what time is bedtime and how much pocket money to allocate. Other times these decisions are far bigger… choosing a doctor, dentist, vaccinate or not vaccinate, school placement, diet, when to start increasing independence… Although many parents find these decision hard, having to make them for a child with AS or ASD is daunting. Choosing the right dentist for example… If you get this wrong and the dentist is somewhat ignorant when it comes to AS/ASD the impact on the child can be huge… a display of public meltdowns everytime they have a checkup isn’t desired. having experience on parenting a child both on and off the spectrum has highlighted the difference my decisions can have on the children.

I now hold this paper in my hand that is full of decisions that would make up my child’s educational further. Yet these were decisions that were not made by me but someone who had never even met my child but was based on the observations made by others and the conclusions they drew. Some of this came from doctors who may not know us personally but on a professional basis for sometime, others were educational professionals who to be honest don’t really know him at all despite his existence at his previous mainstream school for the past five years, the EP who had only meet him the once and an AWO who had always considered it her lifes mission to prosecute me for non school attendance instead of looking at the “whole” picture (how helpful when your little aspie is ripping your hair out from the roots as u try and get him out the street door to go to school!) Then you have the outreach workers who have met him once or twice and despite giving such good advice u still feel a tad concerned as your the parent and it is out your control. The only chance I had to voice my concerns was through the parental advice I would give that I was sure to make both detailed and impactful, not missing a point… Fifteen, A4 pages is a detailed report that I hoped would make some impact.

For all those who have not yet gathered what the hell I’m yabbering on about.The paper I am referring to was the paper so many families fight so hard to hold but are never given that chance. It was little mans proposed statement of special educational needs… and to be 100% honest it was mostly a load of rubbish!!

I’m not no blonde dizzy bimbo who has a head full of air, I’m also no Einstein … but this statement was ignominious in it’s current form. Yes it could be used to access a “special school” but in terms of providing him with support it was useless, the provisions were largely made up from common sense! and though many teachers need to be told this in way of a statement, there was so much more they should have provided! Did I expect anything less? “No!” yet it would have been great to be surprised, but hay we can dream!

So what was the problem? Did it not describe all little mans needs in part 2, was the description not detailed so as not to leave any doubt to what his needs/difficulties were, did the objectives in part 3 not cover all his current needs, did the provision in part 3 not meet the needs of the objectives and provide provision for every difficulty listed in part 2 or was the provision not specific and quantified leaving no room for doubt at who would provide it, monitor it, how long it would be given (hours per week) and how often he would receive it? Maybe it was the use of wolly fluffy words like: “reguler, access to, opportunities, encourged to” that were my problem?

Funny enough it was all the above!!

Yes, every possible issue was an issue! The appendices was filled with advice from those I mentioned above & funny enough a huge proportion of this advice was actually good. His own senco had however wrote hers in a way that was considered by myself as pure ignorance (she just seemed to make him out like he was a brat) however his behaviour outreach teacher gave a fantastic report and great advice. Reading it back today it’s clear to see that regardless of her only having known little man four or five months, she “got it” she wasn’t a specialist autism teacher but at times I wondered. She was in fact an outreach from the PRU the school tried to place little man in (you know the one that had that who “lock down” style going on) The special schools outreach teacher wrote a reasonably good report which given that they had only observed him the once was pretty good (thing was the school she was based later said they could not meet little mans needs when we tried obtaining an emergency placement) the communications and outreach (ASD “specific” outreach team) are always super and it showed in there report. AWO “yep that’s attendance welfare officer to you and me” wrote half a page that just consisted of his attendance issues and not much else ( no surpises there then) As for the SALT well, I think obtaining a report from 2008 isn’t much use to anyone…. The fact that the school attached his ADOS report (autistic dignostic obsevation schedule) that was carried out by a ASD specialist SALT in 2009 as part of their evidence attached to their advice, the LEA still igonored it and chose to go with the 2008 report. This just shows how sly these foxes are. It’s my understanding the LEA are meant to be following the Cop (code of practice) they should therefore obtain reports and advice given on his most current difficulties, if they want to use a report that was taken from a SALT who visited the school when little man had little issues… was somewhat aloof at the time and just happily faded into the background. Just because it stated he had no SAL problems then I’m inclined to insist they also use reports from 2007 detailing traits that warrant no provision today but did then. These traits are no longer an issue as they have been replaced by others. my point is… Do u think the LEA would have used the report if it indicated high cost provision should be made? The ADOS was clearly backed up by all additional advice including the EP so it was only reasonable it was used instead. If not another SAL assessment should have been ordered. As for the EP report I was surprised… I had heard the horror stories regarding them writing reports that were not very beneficial due to the fact they were employed by those wanting to draw out a budget statement. She gave a pretty good report and picked up on problems such as his sensory sensitivities and literal understanding of language.

Despite the fact most of the reports reflected one another the LEA choose to leave difficulties unlisted, or just including them in part 2 only to not provide for them in part 3. I love how the parental view only gets a small dedicated sections comprising of two or three short sentences… Yet we are the best professionals to ask when it comes to our children, no one knows our child better then it’s parents, no matter how much they think they do!

Well, I’ve spent a little short of two long weeks making sure these “decisions” that were made with little control from me are amended by writing my objections and suggested amendments. I also made my prefernce for a school placement in part 4. Its fair to say that this was the hardest report I’ve ever written… I cried, got frustrated, laughed like a loony, feel asleep, swore out loud and researched a stack of reading of reading material while I typed… It was one emotional process because it is an important one, and having taken this long to get here it had to be right

If statement were for sale, this statement could be brought at our local Tesco store (British supermarket for those more far a shore) you would find the statement on the economy shelf displaying the words Tesco Value range or if sold in sainsbury your looking at the basics section.

Money, it all boils down to money… To them the statement has to be in line with the use of the LEAs efficient resources!
To us that means your screwed because the LEA are tight fisted numb nuts preferring funds to go to the most needy causes like student artist who receive a fat hand out so the LEA can display “pointless ugly art” around the borough.

So here’s my advice to any parent just starting their journey…
… Get ready for the ride of your life. Walking into the world of SEN is like riding the worlds tallest fastest bumpiest never ending rollercoaster… Once your on it’s pretty hard to get off!

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