The Minefield Of Sen and Getting The Golden Ticket

Its been a while since I last wrote, and thought I would write about our  Journey and experiences with School, Home education what I have learnt during this very complex maize of a minefield, in trying to gain the ever elusive gold piece of paper, the Educational Health Care Plan (EHCP).

There seems to be sadly a lot of parents facing a very similar situation whom also like me didn’t know which way to turn, where to go for advice, what was true, and relied heavily upon support groups for a place to gain some experiences, also a much needed shoulder to cry on. The whole process of trying to get a diagnosis, support in school and out , home educating and trying to obtain an EHCP was and is probably one of the most stressful aspects of this whole Special needs journey for me and probably many others. It seems Inclusion in school really in my mind means exclusion, and I will explain more why I support that statement  as I go along.

There seems to be an abundance of children with additional needs in school whom for some reason don’t get the support they need. Mainly children with Autism Spectrum conditions seem to be the ones suffering the most. This could be for numerous reasons. For the most part it might be because there is no diagnosis yet. Its been well documented now how many children with Autism can often mask their anxiety and go as passive as possible to get through the day. I’ve spoken about this before in previous Blogs. The other reasons are that in a class of 30 often our childrens issues go unnoticed, yet to the parent its very obvious something is making them blow when they get home.  If you have tried to get the school to listen and it seems to fall on deaf ears, I know the feeling to well.  I would at this point before anything else breaks down contact a legal SEN advocacy team whom can try to be a point of contact between you and the school. Sadly I learnt this too late. I have also heard numerous stories of children without a diagnosis or even with that are being illegally excluded from school because the school cannot cope, yet in the same breath they don’t feel that gaining an EHCP plan is likely too. Make sure you read up on your rights about exclusion, mainly where there is a disability they cannot exclude. Anyway back to our journey that took us into  De-registering our child and embarking on home educating. Before we left the school we sought a private diagnosis by some very well respected consultants in their field. I presented these reports to the school whom point blank refused to take them on board.  At this point we had reached a stale mate, the school were not prepared to take on board our sons diagnosis of Autism, therefore would receive no support in which he so desperately needed.  I have since learned that the school should not of disregarded the  Private reports so readily, that in a case of Tribunals and used by the Local Authority that they hold much weight, however a lot of schools do this, even some Local Authorities and NHS consultants wont accept them, which is very wrong and worryingly classed as discrimination. When I talk loosely about the word “alot” of schools I mean the ones that really in my mind shouldn’t need the papers to act. There are some schools that work hard with the parents without a diagnosis and these schools should be celebrated, they go above and beyond a needed piece of paper. However there are many schools who wont, there closed minds and ability to avoid helping means that so many children are being failed. It seems money is the key point of all of this sadly.

We did however push our NHS consultants (forced practically!) to carry out the appropriate assessments after being in the system for 3 years at this point, it was one of the reasons for going private to help speed up the process and get school on board, boy, how wrong was I?!, However the assessments via the NHS revealed the same diagnosis, Go figure!  To be referred for assessments for Autism Spectrum Conditions you can visit your Gp, that would be the first point of contact. You do not need the school to do this, you do not need the schools acceptance neither the Local Authorities to go to your GP . I have heard that in some parts of the country that the GP will not refer for assessments, only the school can refer. Not only is this terribly wrong, but what about the children not of school age or are home educated?

Autism is a medical/ Neurological disorder that warrants a referral like any other medical issue, to be denied the appropriate assessment via the GP is wrong. Once you have visited the GP and managed to get a referral its a very long wait. You might of seen the headlines about waiting times for Autism diagnoses around the country. It is shockingly bad.

Our next part of the journey, almost 2 years later and home educating, took us to a point where my son waned to try to go back to school. This made me really scared, mainstream had failed him terribly, there was no way I would send him back to mainstream and there are many reasons for this.

When Mainstream wants to be Inclusive, it really does not make it Inclusive. A child with Autism who struggles so much in daily life , whom are quite often targets, made to feel different, given little or no support and try hard to blend, feel totally hopeless! This isn’t inclusion, this is all about money. I am being blunt but truthful. It costs far more to get into a specialist Autism school with specially trained teachers, TA,S, Lunchtime supervisors, and quite rightly so, they are worth the investment. Some people feel mainstream is best for their child and that’s totally a personal decision, but I fear most children would thrive in an environment with people who get it. Who wouldn’t? I dont want my child having to conform to what mainstream thinks he should have to do, even before he tries to learn! I want a place that celebrates him and helps nurture, and bring out the best in him.  To get into a specialist school though you need that Golden Ticket! The EHCP. Infact  to get your child help in education at all with Autism it seems you have to fight, blood sweat and tears and then some more. Getting the Golden ticket to put it so delicately is a, frigging nightmare! Then getting it right is a frigging nightmare! You do not need a school to get an EHCP, you can apply directly to your Local Authority SEN team.  They have their own team that will embark on assessments if you are lucky enough to get that far.  I would Highly recommend a SEN Advocacy team to help you, it will possibly be the best investment you make. Funnily enough the LA are using some of our private reports, so they do hold. Even if I manage to get all of this, there is no guaranteeing all be fine and dandy, but I have to try.

Anyway I’ve rambled a hell ova lot in this, and we are still in the process of getting the EHCP just right, and finding the right placement. We go to panel soon and until then I hold my breath, drink wine and look to my wonderful boy for inspiration daily. He is the reason I fight like this and is the reason why I will continue to. ticket

I’m A Special Needs Parent And Can Sometimes Be A Crap Friend.

Ok so Im a special needs parent and often feel I dont make a great friend sometimes. Im not always there, present, and poised ready to be the shoulder or ear for you. I dont answer every text or call.  I feel a bit crap about this but I need to explain a bit about why Im not that great. The quick texts and, “You okay’s” are about as much as I can muster, but I do care..I really do.
You see being the parent of a child with additional needs can mean emotionally we are spent. We are often fighting our way through a maize of medical appointments, fighting to get referrals, fighting with schools, teachers, professionals and sometimes family.
Our minds are in a constant state of worry mostly, our chilren are needing all our love, patience, our physical and emotional pressence 24/7. We are spent.
Some of our children are seriously depressed and feel like they dont want to be here. Our beautiful babies are struggling with the world and it breaks every fibre of your being.
We are spent.
Some of our children are really poorly physically and we are carers.
Mostly our children dont sleep, we are walking, talking coffee mumbling zombies.
We are spent.
My child has bolted and ran and I’m running to keep him safe, I catch him hiding under some clothes rack after alerting security and my heart is still in my mouth.
We are spent.
But you see I still enjoy those rare catchups but Im not fully present, my minds chasing the next fight. Im sorry you are struggling with somethings too and I want to help. Please except my midnight texts of; “I hope your ok?”
I know I cant offer much more at the moment because Im a bit crap, but I need you to know why. When your body, soul and mind are giving 100% every minuite of everyday to fighting for your childs needs it can mean emotionally we cant give much more. I do feel a bit crap but I cant do anymore at this moment in time.
Sometimes Im even slightly jelous of your worries compared to mine but I know this isnt a great mindset to have either.
Your cancelled holiday kind of makes me get a bit angry when im literally watching my child scratch his face off with anxiety.
So, there you have it.
Im sorry. Before my child came along I could of carried all your calls, worries and late night chats but I simply am spent.
I am a Special Needs parent and a crap friend for a very good reason.
I hope we can weather the storms of life together.
Love
Your spent friend x

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Who’s Failing Our Special Needs Children?

Im not sure whether many are aware that there are literally hundreds of children not accessing education in schools in this country. There is an abundance of children who dont quite seem to fit anywhere and nowhere. Children with  Autistic Spectrum Disorder or ASD for short, whom are quite possibly school phobic, anxiety ridden and unable to get through the school gates are met with “Oh he is fine at school” to “We dont see any of those worries you mention” to ” He’s playing you up”.
Heard all this before? Yet its the same horrific story for you. You pick said child up whom like my child and many others (not all) manage to withhold, hold it all in, go passive to avoid confrontations or demands, to one hellish meltdown in the car, kicking, screaming and punching the back of your seat because they just about managed and survived their day. The analogy of a fizzy coke can being shook gently but surely all day and on picking them up the lid is opened and all hell breaks loose, the fizz exploding everywhere.
For us parents getting the teachers to understand and listen to us while our said child is flopping behind seemingly making us out to be the biggest liars is nigh on impossible.
Alot of children with ASD (not all) can manage most days to mask their levels of anxiety, or at least in a class of over 30 and a school of 200 it can often go relatively unoticed. But the child at home or out and about is crippled with worry, anxiety, over stimulated by their surroundings , bright lights and noises. The busy chaotic day is compacted into their fizzy cans all ready to release when they are with mum or dad, and in their safe space.
How many times have you spoken to the school?! And met with “Harry is fine here”
You want to scream, ” But at home he isnt!!, he cries so much, has nightmares, I have to drag him to school, he says he would rather die than have to cope with another day having to tow the line”
An un-productive school is as damaging as bullying can be. The school can make such simple alterations and adaptions that could make a huge differance to that child. But it seems that at every step your met with the same blank expression. Chidren with ASD that are given no additional supportive provisions can be hugely damaging to a child emotionally, and that damage lasts a life time.
We had private reports at the time, which gave the school all the information needed to support our beautiful boy who was struggling so very badly. Yet still they refused to even aknowledge them. Only NHS reports were accepted. Ive since realised this is unlawful. They very much should accept them. As a result of our son becoming so depressed and anxiety ridden we decided long and hard that we would home educate him and pulled him out of school, de-registering him. We are still trying hard to repair the inner turmoil that he went through.
Our home educating journey has been an eye opener and the wonderful open minded community which embraced us I will always be grateful for.
But my child didnt get the chance to thrive, he was busy trying to survive and blend in.
Upon this two year home educating journey ive heard hundreds of similar stories of children out of education to. All having hugely unsupportive schools who failed to listen when parents needed help, Who only thought all High Functioning Children were not capable of masking and being sociable when needed to be.
Its left a bitter taste, how many children have been failed by mainstream education? How many children to anxiety ridden to access mainstream but dont qualify for Special Needs Schools either are sitting at home. I call them the, “The Forgotten Limbo children”. Pretty much still struggling with how school made them feel, teachers failing to see and hear parents genuine cries for help for what ever reasons. Hundreds of children all having to make do because theres no where else to go.
How is that fair?
To all those parents, I hear you!! I know your right, we have to change this un

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Fair, unjust system. To all those teachers, please listen to us, we need your support, you need to listen to us, make these minor adjustments. How many more children will be dropping like flies, quietly dipping out the system that seems intent on fitting all children into square pegs.

Anxiety, it Fucking Sucks.

Its been a little while since I last wrote, and through the busy  SEN maze of trying to get the right support for my son ,whose age 9 and has High Functioning Autism, its been fair to say, its been rather hellish.

It seems that in order to get any help with anxiety which is largely a hidden inner demon, you’ve got to present at the exactly right time, with the exact specific set of classic traits just for an appointment,on time and let the anxiety perform like now! I guess unless he’s quivering in the corner rocking and his anxiety is not presenting at precisely 1pm for his appointment then forget it! You see anxiety is a real fucker, it really is, it stops you doing the most everyday tasks that others take for granted. Pop yourself in a 9-year-old body with HFA and it gets all the more complicated and ritualistic.

My son during his appointment ran out of the office, hid behind the chairs, tugged on my clothes and cried throughout the entire appointment. But the therapist didn’t think he was anxious, oh no, he just didn’t want to be there said Mr Therapist. You see my son passes out with anxiety and the first time this happened it made my heart stop, but when this pattern continues on monthly basis you think that perhaps the therapists might think somethings worrying him, but no, he apparently doesn’t have anxiety, he’s angry.

It got me thinking about how everyone is different and how their anxiety manifests itself. My son wants to run and bolt, his fight or flight kicks in and he wants to get away from whatever is making him stressed and worried as fast a possible, sometimes he gets so angry, so so angry with the world that does not make sense to him. I’m sure anxiety is a very personal head fucker and each person has different feelings and set of symptoms to match. My son gets bad headaches, tummy aches, has a fear of going to the toilet , fears he will be kidnapped, fears the dark and sleeps in my bed, but Oh no, this isn’t anxiety?! Well what the hell is it?!!How on earth does a person with anxiety ever get the help he OR sheregret-worry needs when some professionals wont accept that anxiety is different to everyone. I tell you what happens, those children become adults whose fears and become like a black cloud and suffocates them, those children that became adults who have either successfully managed to bury it until it happens to pop back up and whack them a blow akin to Mike Tyson’s uppercut. Or they might be children who grow into adults that become seriously reclusive, become depressed and withdrawn from life, whose mental health has taken a deathly like grasp, and live alone unable to participate in the world because therapists have failed, because the whole system has failed them and because we do not invest enough in mental health services.

If you break your arm you get a plaster cast, if you have hearing difficulties you get hearing aids. What do you get for mental health? Well it seems your stuffed, royally shafted, let down and left to go your merry way.

I’m annoyed and I’m sad chasing  appointment’s that fill me with a tiny shred of hope to be drop kicked to get nowhere, but I wont give up. I will do whatever it takes to be heard and for him to get the some help somewhere. Wherever that may be, or even if it exists.

Anxiety is debilitating, exhausting and manifests itself in many ways, it takes professionals stepping up to the plate and helping children before they grow into adults with huge battles with deep wounds that plasters wont keep at bay for long.

Tourettes Syndrome and my amazing son.

Ok so most people have heard about Tourettes Syndrome but what do you really know about it, would you recognize it if you saw it, or like most have only heard the sensationalist views that its a swearing disease ? In actual fact only 10-15% of people that have Tourettes Syndrome or TS for short have the swearing aspect and this is called Coprolalia. I have had one huge steep learning curve in this Unique Neurological Disorder, as a mum to a 14 year old son with TS its been one condition I didnt expect to happen to us and fast forward a year I would like to tell you a little about our journey and what I have learned and still learning today.

Lets rewind to last year, my son went to school like any other day, but when he came home from school our lives would take an unexpected twist . When he walked through the back door at 3.55pm on the 12th March 2014 he was making some really bizarre noises, which included blowing raspberries, clicking noises, whistling and clapping. He looked pretty wired, eyes wide open and adrenalin fueled.  On asking him what he was doing he answered , “I dont know?!, I just started making these noises in the last lesson at school and its not stopped, I literally cant stop them mum!” That night we all sat in Accident and Emergency whilst my sons bizarre noises and random body movements getting all the more severe, and coming on thick and fast. I cant tell you what was going through my head, Ts wasnt even on my agenda, I like many others had barely heard about the condition to even consider it.  I thought he was having some weird stroke, or worse a brain tumour, you can imagine as a parent you envisage all sorts. My husband and I kept looking at each other and as calm as we tried to be for the sake of our son it was hard to keep the thoughts of panic from our minds. We were seen for obvious reasons pretty quickly and fast forward what seems a haze of memories, two weeks later we had a diagnosis of Tourettes Syndrome.  I cant tell you how quickly our lives changed and the tears that were shed, not because I was ashamed , but because life for my son would be very different, the fear I had about how others would react to him, his peers, schooling, the general public, and even family. Boy what a roller coaster of a year we have had! To gain a diagnosis you have to have a combination of verbal and motor tics continuously for more than a year and our son did have habits or so we thought they were for about two years. I swore they were just habits, sniffing and a little head jerk and a throat clearing habit, which turns out were indeed tics.  I have to say that alot of people were so accepting of our son but equally we have had some moments where sadly alot of ignorance till exists about this Neurological disorder. On some occasions we have been followed by groups of men, been told off by shop workers, laughed and sniggered at and this is hard. As a family we have all leant on each other, and over the year we have become a force to be reckoned with. I can turn from friendly mum to fierce lioness  within seconds when I feel my sons being unfairly judged. In that year I took it upon myself to learn as much as I could about TS and called a charity called Tourettes Action Uk and fell on my feet. I spoke to a lovely lady who gave me some hope and an extended arm and family. If it was not for her and this Charity I would not of met some of the most amazing people with TS and their families whom have given me hope and light at the end of a tunnel, they have shown me that life goes on and my son will grow to have a abundant life of hopes and dreams, that he is able to achieve  ambitions,with his family behind him supporting him all the way. We have found that through dark times we have strength from places we didnt know we had, that our amazing son would teach US about strength and determination, that life was still for the taking.  He is a gifted musician and inspires me daily.

My son has a combination of motor tics and verbal tics and each has a name for them,  they are as follows;

  • Copropraxia – the making of obscene or otherwise unacceptable movements or gestures.
  • Coprolalia – using obscene or unacceptable language.
  • Coprophenomena – the involuntary expression of socially unacceptable words or gestures.
  • Echophenomena – repeating other people’s words (echolalia) and other people’s gestures (echopraxia).
  • NOSI – Non-Obscene Socially Inappropriate behaviour, involves saying things that are socially unacceptable.
  • Paliphenomena – Similar to echophenomena. Involves the person with TS repeating their own words and actions such as “Hello, I came here by bus bus bus bus”.

Some motor tics can be very painful, severe jerking, twisting and contorting the body comes at a painful price. There are also tics that can include hitting oneself, hitting walls and punching, these can be dangerous and hurt big time!  You see when people mention TS they dont see the dark side to it, they see and think its funny, and you know what,  its so not funny. The general public still dont see that someone walking funny and shouting the odd word or clicking their tongues is a disability, again most people with TS are not in wheelchairs, their disability not so glaringly obvious, so instead you get get the, “tuts” , stares and whispers. I see it, my son can see it and its not funny, its really not. Then theres people with TS that do have to use wheel chairs their tics mean that they fall over, cant move there legs without dropping to the floor tics.

Up to 80% of people with TS have Co-morbs such as ADHD, Autistic Spectrum Disorder , Oppositional Defiance Disorder , Pathological Demand Disorder, OCD and Anxiety disorders. Its very complex and what you see on the surface is only on the surface, it goes way much deeper. But what I find hardest to deal with is the lack of education on it, I was one of you, I was blissfully unaware too. But I ask you if theres one thing you do, please speak to your children and families about this condition. Google,  Youtube, read blogs, educate your family and talk,,,  just talk and maybe we will start to create a generation of educated, empathetic children who grow into wise, accepting adults.

 

 

“Oh but he doesn’t look Autistic?!”

If your a parent of a child with High functioning Autism your likely to want to retch and flick the offenders nose for saying those well meaning but rather uneducated words, “But he doesn’t look Autistic?” and for the most part I want to scream,” Oh it must be his hair or his sassy top hes wearing then?”  You see Rainman has a lot to answer for! Rainman was the portrayal of a man with Savant Autism, he was hugely gifted and although there’s a few Savants around, they are pretty rare , but the one thing all children do share with High Functioning Autism or HFA for sure is that, YES, they all do look “Normal,” what ever normal should be. Its highly infuriating and actually doesn’t go in our favour or should I say our childrens  favour. You see had they a physical looking disability, had a walking stick, wheelchair, leg braces you could quite clearly see that there’s a disability, but with HFA its not so glaringly obvious, unless you might see a meltdown in the shops or hear the mum running like a bolt of lighting to catch up with her little Usain Bolt! The most common thought process of Autism are that they are all non-verbal or rocking, that they don’t make eye contact and are seemingly locked into their own world. That is not the case for HFA, but that does not mean that their struggles are any less. There’s a huge misconception that children with HFA are not empathetic, or that they cant hold eye contact, this is not the case for all.  In fact my son has a huge sense of injustice and adores his furry animal friends. You may of heard the saying or may not, that if you’ve met one person with Autism, you’ve only met one,? each of us all very different in likes and social compatibility.  Children with HFA can and do want to socialize mostly when they feel comfortable in their own surroundings to do so, they can verbalize very well in some cases , and this is where they fall short, even gaining a diagnosis can be very tricky since the child with HFA can engage very well, on the surface and given the right gifted professional can sometimes get them to open up. But what you cant see is the high levels of anxiety, the social phobia of setting off into unfamiliar territory, the repetitiveness of rituals and low and behold it changes. Their brains are constantly swirling thoughts, trying to process peoples attempts at engaging them, often they try too hard to fit in, because that’s another misconception, often they so desperately want to fit in with the others and struggle to make sense of this busy bright, and noisy world.  They struggle with almost every part of daily life, and so if you see a child who has HFA and is playing at the park, please please send the parent a huge pat on the back for so much hard work, love, sleepless nights and patience has gone into helping that child  to get that far.

Stop saying those words, they are not helpful and neither fair on the child with HFA who wants to fit in with a world that’s very beholden to opening their mouths before brain engaging.

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