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I Jenny Loughran give my consent to ACTION 4 SEND to share my story publicly online for the benefit of shared understanding. I agree to the terms of conditions set by Action 4 send for the benefit of my personal data and that Action 4 SEND are GPDR compliant. I believe that my shared content is the truth and I will not name individuals or schools.
My husband has just gone to bed, my children are asleep. Nothing unusual about that.However,I haven’t gone to bed as I cannot sleep!!! The events of today are still racing in my mind including the lengthy ritual my youngest son (12 years) requires just to fall asleep. This has meant yet again my hubby has spent the evening downstairs on his own and I have spent it trying to use all the usual strategies to ease my sons anxiety. You name it’ll try it. We meditate, I preform reiki, I scratch his head and pull his arm hair at the same time which he insists apon I might add while singing him a song as he sensory seeks to self regulate. His bedroom is impressive as weve attempted to turn it into a sensory room and throw in a sleeping tents and da dah,we think weve cracked it and might just get a good nights kip. But it doesn’t work like that does it? The nuroediverse brain.(I do hope I’ve used the correct terminology )so we just muddle on, as lets face it there no support coming our way in terms of advice from professional is there.!!!
Which brings me on to the nitty gritty of this whole state of affairs….
The beginning!!! Oh god its soooo long and painful,infact there are so many incidents that if id have treat my child emotionally and socially the way some of the professionals have treat my child I’m sure social services would be coming round for a cuppa and arranging a child in need meeting!!
I have two boys.my eldest who is 15 and my youngest who is 12. I promised my eldest child that I wouldn’t name him.Hes a teenager so quite understandable, it is his journey as much as it is mine. So we have Tourette’s and OCD ,Autism and moderate learning disability all diagnosed and, not for the want of trying both boys were diagnosed at the same age just whilst leaving primary school,11 and 12 years. Imagine that!! All that suffering . I should claim back for lost provision and cause my La another nervous break down.Ive a habit of being one of those annoying mums that goes away and learns the SEN code of conduct just so her son gets the provision he deserves BY LAW!!!!!
In order to do this I had to leave my job, yes you heard me right.ive had to leave my job that I trained and paid for ,that I loved.Theres goes my pension. Not only that, my job was my respite, it was something for me.nothing to do with home.ok it was still working with children, still SEN, but it gave me a distraction, I liked being called jenny and not mummy every 2 seconds or Mrs Loughran as the children would know me. I enjoyed advising the parents and giving them the heads up around early intervention and signposting them on to the correct pathway and dropping them top tips re not getting messed about(from a parental perspective of course. I enjoyed the social side as socially we are isolated as everyone’s else accesses mainstream social lives and mainstream activities
I digress, why did I have to leave my job? Simple….. I was left with no choice…..there was no available option for me.no where left to turn, no one else was going to give me the answers…. time. There wasn’t enough time in the day to be able to send emails to the LA, ring the LA, ring sendiass, ring ipsea, research, research and research some more, write letters ,meeting with the school, research his secondary provision and most importantly support my son when coming home from school every single day in crisis and emotional trauma which ill share with you further down the page,
Until then,My eldest son ,god im so proud of him. Rewind five years ago he wanted to end his life…. this is hard to write….. he wanted to end his life because HE HAD NO CONTROL AND NO UNDRSTANDING FROM THE PEOPLE HE WAS SPENDING 6 AND HALF HOURS A DAY WITH. He would tic in the school toilet as he was too afraid to do it in the
class room in fear of being told off. Can you imagine that. Imaging sitting in a chair and someone tying a piece of invisible string around your wrist and then someone else yanking it.you cant stop it because its not you yanking It, its the invisible string with a cruel mind of its own. Then to be even more cruel you have a vocal tic. This however unfortunately doesn’t evoke sympathy in the professional, or even curiosity for a knew opportunity to research and learn, even though I downloaded masses of information, it evokes frustration and irritation because alas its SATS year. The teacher hasn’t got time for this, my god, its her first year at the school and she has something to prove. She must get the results. Is this the fault of staff , or the system?
My son had so many things going against him and the biggest one of all was that he was academically able and in line with the national guidance set by the government. Never mind his ESMH.That doesn’t matter!!! He wasn’t a problem for the school as he was delivering results for them tick box ticked. So when it came to little old me going to the doctors for the hundredth time pleading for a referral ,all I received was the not very helpful and very lets pass the buck
question “WHAT DOES THE SCHOOL SAY?”…… its the question every SEND parent dreads
well you know what I’m going to tell you don’t you and you’d be right and as the fabulous and massive font of knowledge Facebook group have very cleverly used the saying “THIER FINE IN SCHOOL” accept they’ve realistically flipped it on its head and are called NOT FINE IN SCHOOL. Great group id certainly recommend them!!
Define fine… fine for them, fine for the government as they completely ignore his suffering and emotional torment. Just imagine his potential if he didn’t have the distraction of his tics and ocd. So in actual fact yes he got a 4c in his SATS but if hed have been properly supported who knows??? Not that I agree with this stream lining. Its a god awful way of measuring achievement and I’m sure most teaching staff would agree.
So I didn’t get the referral, so it continued, I went to the doctors by the way intermittently over a period of 4 YEARS. Teachers came and went as did the head teachers and got to the stage were he just wanted to end it all and eventually got referred to camhs where he received his referral to a neurologist at Sheffield who spent 5 minuets with him and diagnosed him straight away. 5 minuits .
By this time I’m a walking basket case on anxiety medication and having severe panic attacks every day and night.
I’m going to pause for a moment and jump away from the subtle comedic tone I have used throughout this piece, you acquire a sense of humour to get you through the trauma of day to day living to become quite serious for a moment.
My child became mentally ill due to not being supported and cared for. I cannot express how this period, over a four year period engulfed our lives,” our,” meaning, myself, my sons, my husband ,our social life, our extended family, our financial life, our relationship with each and with our selves, our friends and has a lasting impact and irreversible impact on my mental health. To which i don’t mind admitting because I feel its important to share the true impact of what has happened and is happening to most families around the county. I am on medication for anxiety. The collapsing system has done that to me… not my beautiful children the systym.
On a positive which every now again I like to highlight. He is thriving. What changed. In his case it was very simple…… ATTITUDE, and also moving to secondary school. I worked every day to build him up
,not to allow his condition to define him, take ownership of it.get it out there, tell his new peers on the first day, this is me,I have TS and I’m also great at blah blah blah.lukily for him it worked and the staff just very simply allowed him to crack on and if he needed to tic then he did.in return his tics reduced.in his case,every case is individual. He is in a very good place right now and is talking his gcses and mostly being a very cocky teenager which is a win win for all of us.
One child down one to go…
My heart is heavy as I write this and I feel very sad all of a sudden. I feel kind of guilty that my youngest son story isn’t so positive but in saying that there are positive points to mention. This is mainly because my journey with jo is both,beautifeul and,heartbreaking at the same time and it has felt like this for what feels like along time,12 yeas to be precise………. And also I’m knackered .
so jo was originally born with choanal atresia which I wont waste your time telling you about but this masked all of his other Autistic traits and his learning disability until I started to get savvy
He was in and out of hospital for the first year which effected his holistic development so he was late with everything. He was communicating via Makaton at the age of three as he wasn’t speaking at this stage. Any way fast forward 2 years I started to have some serious concerns but yet again the staff at school said oh he’s a boy hell catch up, I should also add that my eldest child was developing his tics and his ocd was in fine form at this point. To cut a very long story short I did not hang about this time around. Oh no, I equipped my self with knowledge for this battle and this one they was not going to win.
1.sendiass meeting… all chat no action
2 meeting apon meetings with whatever head was there at the time, all chat no action.
3complaint to governers,all chat no action
New teacher arrives, picks things up straight away,
4 requests Sen register approval, denied by senco
5request to the school for ehcp .denied.
6parental request. Denied
7the big guns come out, and I used the law to remind the LA of their statutory duty.
8 ehcp assessment begin……
10…..get ready for this…. they said its was a main stream plan and that he is a mainstream child and that he will go to mainstream,
11.i go nuclear but in a very professional and calm and collected manor where I strategically manoeuvred my way around what was very obviously a financial game of cat and mouse. My son being the mouse.
Because of the trauma of being in mainstream primary education for all of his primary school life he was referred to, yep you guessed it.camhs.where they carried out a full asd assessment and duel diagnosed him with autism and a learning disability. Only just been picked up and he’s 12 people!!!!!
12 literally had to re write his EHCP due to it being not specific, not timely, not realistic, not achievable, the banding didn’t match the provision, the wording was meaningless and would not stand up in a tribunal, it was a piece of paper that meant nothing not a legal document that should mean everything. You think your at the end of the race when you get one, but its a trick. Only can it meet need if its water tight.Ive got that many ammemmded ammened,no its not a typo, that its easy to loose track.
13.fight for specialist provision, to be named in the plan which the la did not like, nor did they like the LEARNING DISABILITY GOUNG IN EITHER OR THE AUTISMN DIAGNOSOS.but unlucky for them I was not budging. The final round being this is the only real legal weapon you have to safe guard your child but it is as only as good and aknowlwadable as the author. The la will not want it to be water tight as it will cost them more in the long run,.
14,we are granted specialist provision!!!!!!!
But with a warning, not in writing that it would be only for a year then straight back to main stream, well you can imagine that there will be 15,16,17, and how ever many more steps I need to take to keep him where he is because you patient readers HE IS THRIVING.CHANGE THE ENVIRONMENT NOT THE CHILD……….
I could have added loads more and it wasn’t as easy going from one step to the next there was a hell of a lot of work and fighting in between. Would i leave my job and do it all again?. Hell yes,,,,, but I should not have had to???
Mainstream children go to school and their parents pack them off safe on the knowledge that they can go to work or whatever their personal circumstances are and that their child will be educated to a good standard and that they will leave school and full fill their potential and be a valued member of their community. This is not the case for all children and its about time it stopped.
Life is hard enough without having to do all this fighting .I’m exhausted and I fear for my child when I am not here because un like his older brother he is isolsted,he is ruled by his anxiety and hates to leave the house due to negative reactions from other peers. he constantly rings his family on gp chat messenger because he has no friendships and yet this is 2020.He shouldn’t have to hang around with me 24/7.im his mum. Hes isolated,im isolated.
You get the drift,thankyou for reading. I wanted to post before I officially upload it to the ACTION 4 SEND website and appreciate your thoughts xxs
On a lighter note my fabulous child can speak in 25 languages because his brain is awesome xx
- : 12
- : male
- : yes
- : 40
- : none
- : secondary
- : yes
- : no
- : yes
- : yes
- : yes
- : yes
- : yes
- : yes
- : yes
- : no
- : no
- : no
- : yes
- : no