Riley’s #HELDBACK story – An honest, truthful & raw update!

Welcome back to my blog!

It’s been a while, I’ve missed you! I think once you’ve read this post you’ll have a better idea where I/ we’ve been and what’s been going on in our world.

I’m currently editing a vlog to go alongside this post, be sure to follow me on my social media so you don’t miss this honest, raw, from the heart footage. All my social links can be found on my homepage.

I’m sharing with you an email (a VERY long email) which I’ve sent to my local MP this evening.

The past 4 months plus has been a journey and it feels amazing to finally get everything out of my system. Here goes…

Dear My Local MP, Sir Roger Gale

I am writing to you today after reading about the Autism #HELDBACK campaign parliamentary launch. It fills me with great sadness that my Son has been held back for the last 4 months which has been out of my control. Whilst I appreciate there are many thousands who’ve been held back much longer I believe that it’s the early stages which are the most crucial and vital for that immediate help and support to be available so that all children can be within an educational environment.

As mentioned my Son has now been out of school for just over 4 months and I’m struggling to get anywhere with the SEN (special education needs) department at Brook House (Council) Getting him a place within a primary school which best suits his needs feels almost impossible.

Riley aged 4 currently (D.O.B – 28/03/2013) was diagnosed after much pushing from myself in June 2015 with  a diagnosis of severe ASD (Autistic Spectrum Disorder) and global development delay.

Riley and I were overwhelmed with support and appointments at the start but this quickly wore off. As a parent with a child with special needs and a smaller sibling (2 children under 5) I became very isolated.

Riley has block sessions from SALT (Speech and language therapy) and OT (Occupational Therapy) I’ve desperately held onto these services to gain as much support for Riley as possible. Without these appointments he simply wouldn’t gain any professional help relating to his needs/ development. Staff members are moved around so frequently Riley has never really had the chance to bond with anyone.

Riley was meant to attend a specialist nursery within a hospital (you can only get a place on referral) but due to there always being a child with more severe needs Riley was always pushed to the bottom of the queue.

I came to realise very quickly that even with a diagnosis for my Son everything was a fight and a chasing game. I felt the phone was continuously glued to my ear whilst I chased up appointments, callbacks, notes from previous meetings etc etc. Even with a diagnosis I felt I still had to fight for referrals to be made, for extra support for Riley, for information about services available. Perhaps I’ll write a handbook knowing now what I wish I knew then…

Eventually (after phoning probably every week) Riley got a space in the specialist preschool and after around 6 months I pulled him out. There were many issues from Riley’s behaviour noticeably changing, to him being very thirsty when I picked him up to having bruises on his body that couldn’t be explained, including his head.

I made the instant choice to pull Riley out when one day I collected him he had a dry, bloody cut and bruise to his chin. When I questioned this the woman said ‘he had a slight touch with the pavement’ Needless to say I never looked back, nor did I ever sign an accident book which I’m sure you can agree is very worrying.

Riley also attended a mainstream preschool where he had support from a 1:1. He loved going there and would often dash off inside the moment the doors opened. He felt safe, comfortable, happy and above all I truly believe he felt accepted.

The summer holidays of 2016 I requested to Riley’s Paediatrician we make a start on his EHCP (Educational Health Care Plan) As you can appreciate I did a lot of online research. I knew the next few steps ahead so as to stay on top of the correct processes managing time expectations. Riley and I had been allocated a key worker from the start (we still have the same person) but in all honesty I cannot say I’ve found her useful or much of a support.

I found the details of an excellent lady who was an independent support worker, sadly I hear they have now disposed of her job role. She was an amazing support to us, she helped me write-up Riley’s EHCP from scratch using the correct terms, jargon and precise details. Long story short Riley was granted an EHCP.

April 2017 I received another diagnosis for Riley of ‘Cowden Syndrome’. A rare condition that affects 1 in 250,000. It then came to light that Riley’s Autism was in-fact a side effect to this condition. This was another battle I was fighting to get to the bottom of alongside everything else. ‘Why is my Son Autistic?’ Autism doesn’t run in my family? Guy’s hospital ran various tests including an MRI and it was them who provided me with the diagnosis of this incurable genetic condition.

Now that Riley had an EHCP, a primary school choice needed to be made for September 2017. This had been a constant worry from the 1st day I received Riley’s diagnosis. There’s a 13 month gap between Riley and his Sister Summer. The plan for me (in a kind, loving way) was to have my babies together, so they grew up both experiencing similar experiences and being able to relate to them at the same time…. help each other with them etc. Therefore both my children going to the same school was a no brainer and always the plan!

I viewed many mainstream schools and in a nutshell was told directly to my face that they wouldn’t take Riley and that he’d be best suited in a specialist school because they couldn’t meet his needs. None of these schools except one had met Riley nor had they seen his EHCP. It was very easy to write him off without a second thought.

Later I have learned that it all boils down to the schools achieving certain grades. I guess ‘average/ high’ grades can’t be made by a child with ASD, or can they?? Any how my Son was instantly tarnished with the ‘naughty child’ stick and refused a place.

I made 3 visits in particular to one mainstream school and was told by the SENCO and head teacher that they’d absolutely be able to accommodate Riley’s needs and do everything to support us. On the 3rd visit, baring in mind they hadn’t met Riley nor had they seen his EHCP I met again with the same 2 members of staff and a woman from the governing body (she had a physically noticeable disability) and I kind of felt she’d maybe understand the many obstacles for a child with a disability.

She asked me to describe Riley and straight away said the school couldn’t accommodate him. Even after I challenged her suggesting I’d raise money to help make things more adaptable. It felt that every positive recommendation I tried to make she would immediately shut me down. I felt the school would have been great for both children and Riley would have adapted over time with a routine.  She also said that when Riley got to about 7/8 years of age I wouldn’t be able to manage him as ‘they all get like it’ and that’s when the school usually look to move children to a specialist provision. I left feeling both very angry and tearful. I cannot believe schools are allowed to treat people who way. I wrote to the school to complain but unsurprisingly nothing came of it.

After a lot of negative visits, comments and conversations over the phone I decided to go down the next road, a mainstream school with an Autism unit. I had a vague conversation with our closest school to be told unless Riley is high functioning and fully vocal ie ‘mildly’ Autistic he wouldn’t be accepted. I was promised a phone call back which of course never happened.

I visited another specialist provision. A communication and interaction special school for children with Autism, speech, language and Communication needs, sounds perfect…right? Well my Son is apparently too Autistic to get into this school. This school takes children who are on the spectrum but again in my opinion ‘mildly’ on the spectrum. Children who are vocal who perhaps cannot cope with being in a mainstream environment but can still pull in high grades.

Realistically what options were left for my child? Just the one, a special school for pupils with severe, profound and complex learning needs. Lets be honest, a segregation for ‘the rest’

I visited this school and I cried the whole way round, deep down I didn’t believe that was the best place for Riley. I wanted Riley to be within a mainstream environment socializing with ‘normal’ (whatever normal is) children, watching them play, interact, talk, laugh etc. The most difficult part was realising that the specialist school had the best facilities to suit Riley’s needs and would better prepare him for life and help promote his independence. But even a school with all singing, all dancing equipment and the best facilities cannot run to its best ability without the correct staff.

The headteacher appeared to be quite vacant when showing us around and only after highlighting all the fantastic equipment and facilities did he find his motivation. Perhaps he’s a little too comfortable in his job role and the passion needs restoring…just my opinion.

The head of the Preschool at the hospital (where Riley went for 6 months) turned out to also be the deputy head of the specialist school, so I was a little wary. Later I found out the deputy head and the head of the school are actually dating so in theory I guess she runs the school (hands over eyes)

I searched for as much help and support as I could before making this life changing choice for my little boy. I explained the situation to as many friends, family, professionals as possible asking for their advice. I even reached out to Social Services (SEN side) I was sick of the sound of my own voice!

I’m a very proactive, multi-tasker and it goes without saying I only ever want the best for both my children. I wanted to ensure I made the correct choice but in all honesty something never sat quite right with me from the day I found out Riley would start the following September.

Low and behold Riley started the specialist school for severe, profound and complex learning difficulties in September 2017.

At the start I spoke to the school what felt like daily to ensure Riley was settling ok. I was always filled with such reassurance from all staff members. I spoke with Riley’s teacher so many times trying to help her to understand Riley and perhaps give him a chance to have a nap if he needed this as he’s up every night for a few hours.

It was her idea for me to put Riley on the mini bus straightaway and she suggested it’d be better for his independence but now I wish I’d dropped him in myself as 3 weeks was far to long and I feel I’d have picked up these issues much sooner had I have dropped him in and collected him myself.

The issues were endless that after just 3 weeks I pulled Riley out of this school!

In the 3 weeks Riley was at the school I struggled to get him downstairs in the morning and in the last 2 weeks being at school I struggled to get him out of the house. This was behaviour I’d never seen before. Now I understand this was his way of trying to communicate with me

Riley became very introvert, he would no longer make eye contact with me after school let alone engage in any cuddles or signs of affection. It was as-though he’d taken a few steps back into his bubble as each day that passed.

Riley came home on more that 1 occasion with either a full packed lunch box or only  1 or 2 items eaten. Riley is a very big eater and will never decline a bag of crisps or an orange but everything was coming back unopened which made me question if he was having sufficient help to be able to eat. Riley’s food diary also occasionally came back unwritten in so I didn’t know what he’d eaten between 8am-4pm.

I wrote endless essays in both the food and home diary but because the staff rotate around the children daily no-one ever really takes on board any of the comments in the book/s. Children cannot grow a bond with anyone person to help with the transitioning process. As you can appreciate it’s a huge change for any child let alone a non-verbal child with global development delay, sensory processing issues and Cowden Syndrome. You’d expect to be eased into the process and made to feel safe, comfortable and like you can approach someone at-least??

Riley came home with a noticeable bruise on his head the first day. When I questioned this in his home book I was told they weren’t aware of anything and would look into the matter. This happened a few times with other marks but not once did I received an accident/ incident report form.

Riley came home one day with his nappy full, half hanging off also with dried poo up his back and on the bottom back of his t-shirt.

Riley also came back one afternoon with a bite mark on his arm. It transpires that a child who was known for this type of behaviour had managed to bite Riley, and when the school was questioned about the circumstances there were differing versions of events. Teacher said Riley was inside being taught v’s accident book which states Riley was outside unsupervised.

Amongst many other issues that I will not go into.

I explained to Riley’s teacher about his change in behaviour at home and she said that I should persist and that it was because Riley was being made to do something he didn’t want to do. Whilst I agree with being persistent,  something just wasn’t sitting right with me. I know Riley better than anyone and I needed to see for myself what was happening.

On the 27th September I drove to the school, needless to say they were surprised of my unannounced visit but agreed to me spending some time shadowing Riley. Where do begin?!

I went into Riley’s classroom to find that he’d been further segregated because he didn’t listen and engage with the teacher and therefore until he did want to listen and engage with her he was to work on a timetable of his own, away from the other children in his class?! As you can imagine this was a real shock to the system to learn. I found it very hard to get my head around. Especially when the school promotes on their website it’s ‘the most inclusive environment’ giving each child self-confidence and self-esteem.

Riley was in a small white room with padding on the walls having ‘intensive interaction’ He was so happy to see me and instantly came up to cuddle me. Within the first 5 seconds of seeing Riley I noticed he wasn’t wearing his glasses. Riley has a lazy left eye and it’s imperative he wears his glasses at all times as recommended by his Ophthalmologist.

I had written in his book many times about his glasses and how he has been coming home without these on. I made it clear on so many occasions that they must be worn at all times. When I asked why Riley wasn’t wearing his glasses the teachers assistant said ‘I didn’t realise it was as serious’ Maybe she thought Riley was wearing them as a fashion accessory?! How was Riley meant to intensively interact if he couldn’t see?

At break times Riley was left to his own agenda in a very busy crowded area, with not a lot to see or do. There was no supervision or interaction with him from the teachers or the teaching assistants, I would say carers but that would suggest they cared. Riley was outside left on his own (I was there) for well over 20 minutes. When I questioned about engagement and helping Riley to develop social skills with the other children I was told that because Riley doesn’t have a physical disability nor a behaviour issue he didn’t require a 1:1. So again Riley is penalised because he doesn’t fit the criteria. How is Riley meant to learn if he isn’t nurtured and motivated to learn?

I hung back along the wall at break time as it was very busy with a high number of mixed children will all kinds of disabilities running around and climbing on the slide. One child threw a skittle up in the air hitting a smaller child on he head (the little boy was in the same class as Riley) he was sat on the floor by himself crying after being hit. None of the staff noticed this as they were all gathered in pairs or more having a chat. I had to call out for some help for the small boy from a member of staff.

Another boy was eating leaves which again I had to intervene and highlight to a staff member. Another child threw a large hoop up in the air several times until I said it was probably best not to do that with so many children around.

Riley took himself to the quietest corner with his back against the wall with his head down. I saw he started to put small stones into his mouth. Obviously I asked him to take these out straight away which he did. What would have happened if I wasn’t there?

After a good 20 mins of me sitting on the floor with Riley just watching not knowing what to do or what I was thinking, I got Riley up. He started climbing on the apparatus window ledge, not a part which was climbing for. Again I wonder if anyone would have been there to catch him if I wasn’t.

I felt it was one extreme to another, lack of discipline to extreme discipline. Then, out of nowhere, a member of staff (I have all the names) shouted across the playground at the top of her voice making me jump. She went over grabbed a little boy, in a manner that I’d certainly not agree with if that was my child, and put him inside closing the door. She walked out shaking her head saying to her colleagues loudly that he was sat poking another child.

Surely you lead by example and rather than using such abrupt mannerisms you explain to the child how it’s unkind to behave this way? Personally I felt it was very embarrassing and highly demoralising to that child. What’s more worrying is if I hadn’t seen what happened and that happened to Riley for example how would he feel not being able to communicate with me what went on or how he’s feeling. How damaging would that be for his confidence and self-esteem?

There were 3 sections of this small area. 3 different classes, 3 different ages, mixed disabilities all mingled together at lunch and break time. At the end of break a whistle is blown and kids go back to their class rooms. Riley was the opposite end to his class and even with me saying ‘it’s time to go’ and trying to encourage him to go back to the class he wanted to play now it was less busy and noisy.

I asked his teacher what happens now? She said it would take 2 people to physically get Riley back into the classroom where he would then go off and do something on his own because he didn’t want to engage and this would be a  with a different member of staff to who he’d had in intensive interaction with.

I didn’t know what I find more confusing. The fact that my Son is being physically manhandled rather than being transitioned gradually, encouraging and motivating Riley  with something he enjoys back to the class, the fact he was again going to be segregated from his class or the fact it would be a different member of staff.

How was Riley going to feel comfortable if he keeps getting passed around different staff members and how much longer is it going to take for staff to get to know and understand Riley and his needs.

Especially in the first few months I would have thought it’d be more leanent and child initiated learning through play. Not thrown into a timetable you must obey or you will be either physically forced or removed from the class. It seemed like Riley just had to comply to the structure that was not flexible in any way.

After I carried Riley back to his class, it was snack time and children with physically disabilities were either sat at the table or in a wheelchair with 1:1 support, the children with behavioural issues also were sat with a 1:1 so as not to harm other children.   Riley was walking around the room trying to find something to do, away from the busy, noisy area of the table. Of course Riley isn’t going to sit down at the table and ask for a snack, if that was the case he wouldn’t be in this school.

When the teacher came to my house (2 days before the first day of school started – talk about preparation) she asked me to send in specific fruit that Riley would eat. I looked over at the fruit on the table and noticed there weren’t any oranges. I asked where the fruit was I sent in for Riley and she said it’s shared out between all the children.

I’m still so frustrated that everything I sent in specific to my Son was being shared out. So anything Riley was familiar with was different in this new, unknown environment. Everything from his regular juice (I only use Hi-Juice) and Riley was being given other juice full of sweeteners, the nappies I sent in weren’t being used on Riley as he’d come home in smaller nappies of a different brand, the fruit I knew he’d eat wasn’t being given to him. It makes me wonder what else went on I don’t know about?

His teacher went to the cupboard and found 1 orange left out of the bag I sent in along with ‘Bear fruit’ (which isn’t cheap) I was told Riley has never eaten at snack time. I took the orange, peeled this, put it on a plate, showed Riley and once I got his attention I said ‘sit down’ he sat down and ate his orange as good as gold then went off to play.

I didn’t understand why Riley wasn’t eating a snack. Surely he shouldn’t be expected to sit at the table and ask for this? Riley would need someone to encourage him to join in. This is all as clear as day on his EHCP and is something that wouldn’t happen on its own without the support he needs.

After snack Riley was to go to the sensory room. I checked Riley’s nappy and had to say it needed changing before going anywhere else. I felt as though I was having to tell staff how to do their job which made me feel uncomfortable but Riley’s needs come first.

The sensory room is one of Riley’s favourite places, it’s a chilled out zone usually with light projectors and fish floating up and down in bubble tubes. I wasn’t allowed in because there were other children in there however what I did see were 3 female teachers/assistants sat on the floor, legs out next to one another with their backs against the wall having a conversation. I couldn’t see the other children and can only assume they were amusing themselves. Not very nurturing or engaging in my opinion.

Riley’s teacher said Riley refuses to sit and eat at lunch time and lies on the floor for about 10 minutes. The day I visited, Riley walked into the empty hall (we were the first ones) sat at the table and actively went for his lunch box. His juice was put in the middle of the large table out of reach and his lunch box on the window sill also out of reach. I’m guessing he was meant to wait until everyone else arrived for lunch. It’s frustrating even for me, I can see everything I want but cannot get it or communicate that I want this.

The rest of the school started to arrive and the noise levels were rising. I could see and tell Riley was getting frustrated and anxious so I asked for his lunch box and passed him his juice. Riley happily sat (I stood behind him only supervising not to step on anyones toes) one member of staff had her back turned to Riley as she helped another child and the staff member sitting next to Riley had both Riley and another child to manage. The area was crowded, it felt awkward and in my opinion the girl couldn’t manage both children.

Once Riley finished his food obviously he wanted to get up. There was nothing motivating him to keep on sitting at the table, he’d eaten all his food and drunk his juice. I asked what happens next to the staff member watching over Riley. She said it’s another 15 minutes until lunch finishes. There was no way Riley was going to sit still on a chair with nothing to do for another 15 seconds let along 15 minutes. She pushed his chair in and put her foot behind his chair so he couldn’t get out. I checked his belly against the table and pulled him out as it was pushed firmly into his belly, the staff member blissfully unaware said ‘oh was it to far’ Again how frustrating is this for a child with complex needs who cannot speak?

I requested we go back to the classroom and in future something is given to Riley (a toy/ book) to help motivate him to stay at the table if it was compulsory to sit there and wait for everyone else. It was break time again, which meant another 50 odd minutes of being outside with not much to do on his own.

The process to go outside is that the children have to sit on a chair in a line in-front of the door and sing a song before they can go out. Not something Riley has ever been taught in the past nor is it something Riley would ever need for the future but nonetheless compulsory in this class.

Once outside there was Riley and I, the staff member watching over another little boy and another child on his own outside eating sand! I said to the staff member he was eating sand, she went over and told him to stop. The boy came over to us and wanted to socialise I watched him pick up an old dirty washing up bowl filled with red dye and tip this into his mouth and all down his top. Again I said to the staff member I don’t think it’s a good idea that’s outside, she took away the bowl. The boy then picked up the bowl next to it and poured that in his mouth as well which I can only describe as green slime. The woman said ‘oh it’s ok’ I couldn’t find that words, in what world is it ok?

It was at that point I was asked by the deputy head and class teacher if I’d seen enough and would be leaving soon. I was asked into the deputy heads office for a chat and then I left after this.

There were questions I asked different staff members about Riley where I knew the answers and I felt I was lied to. I felt very uncomfortable and as though the staff members were talking about me under their breath. If these kinds of things were happening whilst I ‘a parent’ was stood watching. It makes me question what else could be going on behind closed doors.

The moment I got in my car I regretted that I didn’t remove Riley there and then. Instead I went home and waited anxiously clock watching until Riley arrived back home on the mini bus. The moment I squeezed him in my arms I whispered ‘you’re not going back there’

The best part of the 3 weeks I think was Riley getting the mini bus. He loved the independence and choosing which child to sit next to. The bus driver Cathy was absolutely amazing and needs a reward for her passion and commitment. There were 4 different escorts in those 3 weeks which shows a real lack of commitment especially to children who are so desperately in need of routine and familiarity.

I could go on and on if I’m honest but the fact of the matter is Riley is out and I will never be sending him there again.

On the 27th September I phoned Brook House to explain that I pulled Riley out of school and asked what the procedure was. Whilst explaining the reasons for taking Riley out of the school the lady (I have her name) stopped me mid way through and said she needed to pass this onto her manager to be looked into as there was safeguarding issues.

She asked me what I would be doing. I didn’t have a clue what I was going to be doing, should I or should anyone put in this position? She asked me if I was going to be home educating. After my experience trying to find a school for Riley I didn’t think there were any other options. I was firing lots of different questions and scenarios at her all in which she couldn’t answer. She said she would look into it and call me back.

In the first week (after leaving) the school contacted me asking about Riley and if he was going to be returning back to school. I made my thoughts clear and said I’d be home educating, not thinking or being advised of any other options. The deputy head said she didn’t want us to feel isolated and to trial out one session within the school where I could accompany Riley and take it from there and that times of arriving and leaving needed o be agreed.

I was made to feel like I was taking a walk of shame, we walked into the classroom and Riley was expected to sit down at the overcrowded table with the other children and listen. Riley wanted to walk around the room and explore. The teacher didn’t want him to do this and would keep saying to come and sit down. I sat Riley on my lap in order to try to help him overcome why he was being “difficult” and “non-compliant”.

Riley became very stressed getting into a crying fit, hitting me around the face, kicking and hitting out. I said to the teacher I’ve never in my life seen Riley act in this way, she said this was what Riley was like every single day. In less than 10 minutes we left as I didn’t want Riley to become anymore stressed out.

I’m not an expert but if something is happening like that everyday surly a different approach needed to be taken, not continue this until the child is showing signs of anxiety, stress and being withdrawn that the parent needs to make an appearance at the school? What really confuses me is why a child with special needs is expected to sit at a table, listen and learn like an average child without additional needs. Riley hasn’t been back since.

I really don’t want to come across as a serial moaner and purely negative, and I’ve tried really hard to be as fair as possible by trying to recall things or scenarios that were positive about the school but I honestly and wholeheartedly cannot recall anything beneficial, effective or worthy to write about.

3-4 weeks had passed, I’d run myself into the ground panicking about how I am to home educate my Son when I’m not a high achiever myself. I looked endlessly online what type of guide I could follow. I made lots of phone calls trying to seek help and was told ‘it’s a grey area’ and to find a home school group on Facebook which may help.

For my daughter being a ‘normal’ child I could follow the national curriculum but there was nothing online or that anyone could advise to help me. It was a really stressful first few weeks with Riley being off school. I panicked that I was holding him back, that he wasn’t learning anything, that I couldn’t teach him. I worried about his future and what life meant for Riley now, what life meant for the both of us. Everything was on overload.

I started to get shooting pains up both my arms and down my back (I still have these) I suffered with tummy and back pains to the point I couldn’t walk with a straight back and was crouched over. I went to the hospital and after blood tests and examinations I was told I was suffering with severe stress.

Still I had to battle on constantly looked online for help. It only clicked when I went through all Riley’s paperwork that I came across a ‘Portage’ booklet. Basically a checklist document Portage workers use when working closely with children they’re supporting.

I photocopied this and started right from the beginning, birth. I went through box by box marking off what he could do and left the boxes he couldn’t no matter the age section this was in. Gradually I started to print out and laminate lots of visuals to put around the house so even if Riley wasn’t engaging with them, he would still have to look at these in passing.

Gradually over time I have put together a curriculum guideline to follow for Riley to help him developmentally and work towards breaking the communication barrier…to start with. I feel in a much more confident place than I did 4 months ago. I just wish I knew then what I know now. I can imagine there are so many people going through that very difficult time and I remember how lonely, helpless and isolated I felt then and still do even now.

After a lot of chasing Brook House and requesting to speak with a manager to get some answers it was explained I needed to have an ‘early annual review’ with the school. This would mean that I could opt to either home educate or request a change of placement.

Riley’s father and I attended the meeting together. We’d hoped to get some answers about the things I’d seen, Riley’s behaviour and above all why Riley’s needs were not met according to his EHCP. A legally binding document which follows Riley all throughout his educational life and is meant to give him the support he needs.

Our questions didn’t get answered, the school didn’t attempt to try to understand why I pulled Riley out or work on a plan to better suit Riley attending. Instead the deputy kept making it clear that I was pulling Riley out because I felt he would learn more from being at home with me in an environment he felt comfortable with.

Both Riley’s Dad and I disagreed and agreed. Yes Riley would do better at home after seeing how a regular day would be for him at school. But I wasn’t pulling Riley out because I wanted to home educate him I was pulling him out because not even his basic needs were being met, ie safeguarding, being fed, offered a drink, personal hygiene, the word that came to mind was “Neglect”.  There was no nurturing, engagement or motivation to grow his educational and learning needs. I made this clear but I feel I was banging my head against a wall and there was no way back from this. I have high expectations particularly for my son’s care and well being, as every parent does also. Why should I lower these expectations to such a level that causes harm and distress to my son? Why should anyone?

A week or 2 had passed and I hadn’t heard anything so I called Brook House and the school to make sure all paperwork had been sent off to prevent a delay. There was a lot of back and forth and me making phone calls for updates and to chase people. It’s very frustrating to think if I hadn’t made the amount of calls that I did to chase people, how long would it have been before someone got in-touch with us.

What if Riley was just sat at home everyday playing and not having a parent like myself that is working with him to achieve goals each week. How detrimental and damaging would this be to Riley’s confidence and development?

After some weeks had passed I decided to ring around a few schools I hadn’t visited, there was no harm in going to look and keep our options open. There is mainstream school about 30 minutes from with an autism provision. This would be a perfect solution come September 2018 when Summer starts school. I set my heart on this school after visiting and spoke with Brook house about changing the paperwork from ‘home educating’ to a ‘change of placement’ This process took a few weeks and again I was back and forth daily with emails and phone calls chasing.

I suggested to the manager at Brook House that I update Riley EHCP, Section A and the Appendix 1 which go along with supporting the EHCP as this was almost a year out of date and wasn’t a true reflection of Riley or his current needs. I did this over the course of a week and forwarded it to the manager directly. Perhaps a suggestion he should have made in his line of work?

Eventually all the paperwork was sent to the school before Christmas requesting a place. I chased Brook house 3 times up until the new year in case of any update. I was told by the manager that I needed to give them a longer grace period due to Christmas. I took into account the standard 15 days the school had to reply, I allowed 21 days in total. To my surprise the school replied with a letter dated the 14th December! I found out the decision of the school 3-4 weeks after the date on the letter even though I had chased 3 times prior.

Riley has been declined a space at the mainstream school with an Autism provision because of 2 main issues. Firstly the school is full and secondly because he doesn’t gain meet the criteria.

The criteria being that the school follow the standard national curriculum and Riley developmentally isn’t at that level. What I’m confused about is why if these children are academically able to follow the national curriculum for their age why they need to be within an Autism provision and why a child like mine who would benefit being around other children who are Autistic with similar needs to him don’t meet the criteria, where do they all go?

I visited another school that also had an Autism provision. I was told by the SENCO that the Autistic children that they take are integrated within the mainstream school 98-99% of the time. He also said that the Autism area is normally just used for registration and sometimes for children from the mainstream school if they need a break. So in theory this unit isn’t being used to its full potential even though there is space because again Riley and children like Riley don’t meet the criteria. This again highlights the fact that children who are mildly on the Autistic spectrum are again favoured for achieving the grades.

I visited another school which was both mainstream with a specialist provision, a 40 plus minute drive from home to be told that they are bursting at the seams with pupils and cannot give me a rough timescale when a space may become available.

I was going to visit another specialist school an hours drive away but after hearing horrific stories about the goings on there I chose to avoid this. I have another 2 schools to visit but realistically I am looking at Riley getting a space in September, possibly after or quite possibly never.

This would mean Riley would be held back an entire year because of the failure of the educational system. As a parent I am doing everything I can and more for Riley. Would it be acceptable for this to happen to my child who doesn’t have special needs? I believe I’d be receiving phone calls, letters and even fines about why my ‘normal’ child wasn’t attending school, so why is this any different for a child with special needs?

How many parents of special needs  are “making do” with the standards of education their children are receiving because there is no alternative? How many of these children are now at home because that’s all thats left? How many are being lost in the system and forgotten about? Who actually cares if they are?

I feel really let down and would greatly appreciate some clarification on the educational system and why it’s deemed acceptable for my child to be in this situation. I’m sure Riley’s circumstances and experiences  are not just unique to him and on behalf of all of the other children and parents who need to be heard, something desperately needs to change.

Everything in this letter is based on fact and/or first hand accounts, not opinions or presumptions….everything actually happened. It simply is not good enough…..not for my Riley or any other child!

Many thanks for your time, I look forward to reading your reply. If you are attending the #HELDBACK campaign I would be more than happy for you to share Riley’s story.



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  1. Nikki Newson
    14/10/2018 / 1:51 PM

    I cannot begin to imagine how you must of felt with Riley attending that awful school . It’s a disgrace . I hope that something is done to prevent any other children being treated so poorly . You are an amazing mum Clare and a massive well done to you for all to do for Riley xx

    • Clare
      14/10/2018 / 6:22 PM

      Thank you for reading and thank you for your comment. I feel guilty I let it go on for 3 weeks before I questioned my gut feeling ☹️ I know my Riley is happy and safe now. X

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