Excuse my language but that was my reaction to the decision to end my son’s Disability Living Allowance just before Christmas, on the grounds that he has not been awarded Personal Independence Payment. After being put through that hideous PIP Interview they have made the decision that he has scored zero points.
Understanding why they said No to Personal Independence Payment for Asperger’s Syndrome
I understand why they said no to Personal Independence Payment for Asperger’s Syndrome as I am aware that our son is doing incredibly well living away from home. That there was the chance he would not be awarded PIP, as even in the interview it was said that he would be on the border of whether he would get it or not. This had shocked me as I felt sure he met the criteria for at least 12 points, which would entitle him to enhanced, but I had got my head around the fact that there’s others much worse off than him and maybe it is just because he is doing so well. After all, he has managed to move out, and with support is coping incredibly well (trying not to dwell on how much he isn’t looking after himself and could be in danger).
I can understand how the Department for Work and Pensions don’t get that he isn’t really washing himself properly (or regularly) and choosing the right clothes – and that I am letting him live like that to help him get more independent. Taking a chance on the letting go – and fearing that he’s not being taken care of, and is putting himself in danger (and honestly I don’t NEED to hear that MOST teenagers are like this either!). I do, I get that. I mean it is hard enough for me to get my head around without them having to struggle: Knowing that there’s just support at the University and a Specialist Mentor that he sees once a week (at a cost of £60 an hour via his Disability Support Assist from the Student Finance England). Yes he isn’t receiving any more support and it is hard for them to see that just because he isn’t getting something doesn’t mean he doesn’t need it. Obviously otherwise I would have fought harder to get him the care he needs – right?
Not Understanding why they said No to Personal Independence Payment with Asperger’s Syndrome
But the fact that he scored zero points on every aspect of the form – not even we recognise that his Asperger’s Syndrome affects his life but maybe not enough for payment – I really cannot understand though. It is like they have the ability to completely cure him of his Asperger’s Syndrome. Making me feel like a fraud for ever claiming for him in the first place. Saying that he has absolutely no problems with social and communication! Are you kidding me! Even though at his face to face consultation they saw it! Even though it took until he was 10 years old to be diagnosed (he was first assessed at aged 2) – after at least a year of professional bodies observing and assessing him before a diagnosis was made! But this interviewer, the one with the family member on the Autistic Spectrum, he is in the know. And my son is just fine – now if only I could believe the DWP as much as they believe themselves! I mean I don’t know what all those Speech and Language Therapist thought they knew – but they are completely wrong. And those struggles he has – well he’s obviously just playing me and being lazy!
Mandatory Reconsideration for Personal Independence Payment
My son was so upset when I told him the result, and I have promised I will appeal (starting with a request for a Mandatory Reconsideration for Personal Independence Payment). But I don’t think it will do any good – they have made their minds up – he’s okay. It doesn’t matter that he doesn’t eat and needs reminding because when pushed he said he can reheat a pizza and waffles in the oven; honestly what more nutritious meal could anyone want. So many factors ignored. My emotions all over the place; as strong as I try to be I go back to worrying that I am just doing it all wrong. They brought up the lack of support at school, and they just said it was rubbish parenting. Maybe I shouldn’t be so angry at the decision, and just be grateful that they are right?!
As someone who has experience of the Autistic Spectrum there are some things I wish you to know. I think it would be useful as a society as a whole if we were all more educated and understanding. I myself wish I knew when I first started to consider whether my son was on the Autistic Spectrum; as I remember there were some stereotypical hurdles that I had to overcome. For instance I thought that those on the spectrum could not lie, that they were honest to a fault. I am not even sure if my son knew he was lying or if in his mind it was the truth but he definitely did not tell as it was. I still remember my husband filming him swigging a toy dog around, and even when showing him the video he denied doing it! Another thing was he was taught how to give some sort of eye-contact (so again I wrongly assumed he could not be on the Autistic Spectrum). So here are ten things as a parent with a child on the autistic spectrum, and suspected Asperger’ syndrome myself that I would like you to know:
10 Things I wish you knew about the Autistic Spectrum
Autism is for life – causing difficulty in the areas of social interaction, communication and the senses. This can be accompanied by repetitive and restricted interests, activities/behaviours, and problems with executive function.
Those on the Autistic Spectrum may interpret the world differently to others – including not “just knowing” things that are socially acceptable or being able to read body language.
People on the Autistic Spectrum are just that people. They may behave in a way that makes some people feel uncomfortable but they do not mean to; and do have feelings too. They may not be great with social relationships but that does not mean that they do not crave them (some may not) and still require love and understanding.
Autism is on a spectrum – and each and every individual is different in how autism touches their lives. But then again no two person are the same anyway – those with Autism are no different to that. Just because person X does not act the same as person Y who you know on the autistic spectrum doesn’t mean that person X is lying about being on the autistic spectrum.
Talking of which there is no right way of talking about Autism in relation to people – some prefer if you say person with autism and others prefer autistic person; I think as long as you are not being unkind/using it as a put down it really does not matter in the grand scheme of things (particular as communication/social relationships is an area that they struggle in any way!)
People on the Autism Specrtrum are not all gifted at something. Some people are, but again so are some non-autistic people. Again everyone is a gift whatever their capabilities, with or without autism. Although how their condition makes their daily life more difficult, and getting through it, is surely a gift in itself.
Try to be accepting. You may not understand why that individual in the supermarket is flapping/making noises/chewing, etc but either way try not to judge. Think maybe about why they are doing these things – how hard it is for them to cope at that minute.
Autism can happen in both males and females – it just might present itself differently.
Autism is an invisible disability. Some people struggle into their adult lives before they even discover that they are on the autistic spectrum. Just because you can’t see how difficult things can be doesn’t mean that they are easy.
There is no cure for Autism – and neither should there be. Understanding and acceptance is what is needed – autism does not make a person bad, judging them and treating people badly does though.
Do you agree with these 10 things? Is there anything you would have added?
Moving from Disability Living Allowance (DLA) on toPersonal Independence Payment (PIP) was always going to be a difficult time – for one we (my son and I) struggle with change. But with the horror stories added in to the mix with the uncertainty it wasn’t something we were looking forward to. In fact if it were just about the money I wouldn’t have bothered, but I believe it helps him have access to DSA (Disability Support Assist) at University.
Letter asking to move from DLA to PIP
First of all the letter came about the switch earlier than I was expecting. I thought it would be when my son’s DLA ran out that he had to apply – so it was a bit of a shock that it came 3-4 months earlier. I then had to make a phone call (and let’s be honest who likes making those, but especially not people on the autistic spectrum) with very little information about what would be expected during that call. Luckily I am on a few autism forums and was reassured that it would be basic information which could be added to once the form arrived.
The First PIP Phone Call
First of all you need to ring up by a certain date that is on the letter. I wanted to do this as soon as possible so I didn’t forget. In hindsight if you leave it longer then you are going to be paid at the rate you are on now for longer – this is because as long as you do everything by the dates they say then they will continue to pay you up until a decision has been made. They ask for you to verify information that they have on record such as name, address; details of healthcare professionals etc. Anything I didn’t know the answer to they said it was ok I could just add it on the form. I was asked for permission to move over any “evidence” on file from the DLA claim to be moved over to PIP. It was also explained that the PIP form would arrive in the post.
The PIP Claim Form
Personally I felt that this form was easier to fill in, if not omitting a lot of areas that those with Asperger’s may struggle with (although there is the page at the end where you can add it). The biggest issue for me is that this time it could not be typed up and there wasn’t really a lot of room. It was straight forward in each section with yes/no tick boxes and comment sections to elaborate. There wasn’t lots and lots of repetition about the same thing. Again we had a date by when the form was due by and DLA would continue to be paid as long as the form was back by that date.
Looking at the criteria I felt positive that my son with Aspergers Syndrome would be easily entitled to enhanced care and not at all on mobility. Basically because I felt that they had moved his mobility needs over to the care section (as he is physically able to move it is the help he needs mentally with this). I thought there was evidence enough for him to tick the boxes to get those 12 points and that he would be okay. In fact, somehow I had even convinced myself that he wouldn’t need an interview. Filling in the form made me physically sick though. I hate having to write them out, think of how he is struggling, and especially his bad days. On doing the form and talking to his support mentor I realised that he wasn’t actually doing as well as I thought he was. The biggest problem for us is that the lady who is helping him wouldn’t be able to help any more without the right funding. I am really anxious that if he does not receive PIP this will fall away completely and the University will not be able to help him. I felt reassured though that PIP is meant to be for help that is required – whether you receive it or not. For example, you are meant to be able to make meals from fresh (including reminding and supervising) – the fact that my son eats, but not properly should not be an issue.
The PIP Interview
I should have known from the fact the envelope was white (and not brown) that a decision had not been made but I was still shocked at the invitation to attend an interview. It was rather short notice and at 9am in the morning. This meant I had to get my son back from University and sort childcare for my other children. All this was sorted though and then the real realisation set in that the things on the form would have to be discussed in front of my son with Aspergers.
My son lives in a bubble and, although he realises that he struggles with communication with others, there are just some things that he does not understand that he does because of his Aspergers. I went through the form and the different areas with him – and in his own words it made him feel shit. I had to reassure of him of how well he is doing, and how proud of his progress we are. I had to, in the gentlest of terms, explain how Aspergers could make him egocentric, and what that meant: I told him that it didn’t make him a bad person, but that this could sometimes annoy others. I am sure you can think of many other scenarios where my son is unaware of his condition but they are far too personal to blog about. Let’s say the whole thing has made me feel like a rubbish parent because I should be supporting him and not letting him struggle. The thing is, and I believe it is true, that we HAVE to let him be independent and little by little he is managing and it is amazing. I do appreciate others are worse off and can never be in this position, it just feels like people are penalised (with support taken away) when they try to help themselves (instead of it going when they are more able to deal without it – again this is not about the money but the doors it opens to support for him).
The PIP interview itself started badly as I had completely forgotten that we both needed to bring two forms of ID. Luckily a bank card and driving licence was fine – and we both had these (although the fact my son had both of these probably went against him – as it showed that he could drive, even though he doesn’t because of the unfamiliar area he now lives in, and apparently having a bit of his money and a bank account demonstrates he is fine with finances – that and simple maths questions he was asked!). In the waiting room my son went really light-headed and his anxiety was through the roof. They had a water dispenser and I was able to get him 2 cups before we went in (nothing like being punctual!) – this also meant that he had a cup to fidget with.
The guy that took the interview straight away let us be aware that he knew about autism and had a family member with severe autism. This was a double-sided coin as he was able to really engage with my son, keeping language simple and was able to extract answers from him (and how to help him when he got really anxious); but on the other hand this meant he could not say that my son had any communication issues! Everything was explained well in simple terms and we were told that the interview would give us his opinion at the end – so it was all transparent. Personally I felt that a lot of the questions were leading or that the interviewer would suggest to my son how he should answer (like, “I am sure a bright lad like yourself doesn’t, but do you ever need anyone to simplify language for you?” – even though I had had to explain the do you take medication question to him!). Again no idioms etc, or other no simple language was used, and the fact that my son struggled with communication seemed to go down as just “anxiety.” None of the paperwork used in his DLA claim had been sent over for PIP but I was told there wasn’t any point in sending it now. This meant that they did not even so much as have a diagnosis for his Asperger’s syndrome but he took my word for it and asked who diagnosed him. I feel that the interview is totally not suitable for a condition of this nature – for one those who have a communication disorder feels unfair that they don’t seemingly say the right thing (I could go on and on about this but for example, when asked how often he showered the interviewer demanded an answer so he just made one up because he felt he had to say something!)and how my son was made to feel (not the interviewer’s fault but the nature of the interview) was surely a human rights issue. I am really not happy.
The PIP Interview Verdict
We do not know the actually results of the interview as it has to be sent off and scored but the guy doing the interview told us what he thought and would be putting his case forward. Basically what he said was that my son was, in his opinion, on the border. That there was no way we could suggest he has communication issues because he went to a main stream school and is now at University with no statement of special educational needs or one-to-one support. That he is able to catch a train (from University to home, one familiar route and would need help if anyone spoke to him, anything went wrong or changed but we shall ignore all that), dress and shower (who cares if the clothing is right or whether the shower is just him getting wet and not clean, and needs prompting to even do that!) living independently (even if he has a mentor and contact with parents for support with this). He did however feel that he has issues when it comes to food and socialising. I guess we just have to see now. It was awful for our son to go through all that and it made him feel really ill. If he does receive standard care I wont fight it (even though I think it should be enhanced) because there is no way I want to put him through any more than he has. Apparently a decision can take around 6-8 weeks – let’s hope it is more the 8 so that he can continue with his DLA until then. Fingers crossed that all this was not for nothing for him.
Do you have any experiences with moving from PIP to DLA?
PIP is a benefit that helps with the extra costs of a long-term health condition or disability for people aged 16 to 64 which is phasing out DLA.
I am not sure at what point, if there is a point, our son The Sensory Seeker started to have Sensory Processing Disorder. I am not sure if anything caused or triggered it or if it is something that has just always been there. But I thought I would try to share some of his early experiences to see if anyone can identify with it – and just so you can get to know him better.
The Birth of The Sensory Seeker
The Sensory Seeker was born at 35 weeks Gestation with just gas and air using Wrigley’s forceps and a whooping 7lb 1 oz. He was also rather long and I believe that the hospital just thought that the dates were wrong. I had had contractions from around 31 weeks but told to get bed rest. I have a needle phobia so at no point did I have the steroid injections. I was also breast feeding my toddler and once this happened I had to try to really limit his feeds. In fact it was the middle of the night when he came in for a feed that my waters started to break. First a trickle but then there was no doubt as they poured out. We went to the hospital and The Sensory Seeker was born a few short hours later. Born at five thirty in the evening we were both discharged from the hospital the next morning.
The Sensory Seeker’s Weight Loss
At home The Sensory Seeker was feeding fine, but was very sleepy. I had been given no information on him coming before the 37 week full-time dates and felt that something was not right. By day 3 when the midwife came to check that he hadn’t lost more than 10% of his birth 3 he’d actually lost 13% (down to 6lb 3ozs) and we had to go straight back to the hospital. Despite constant badgering to formula feed my son I expressed my milk and fed him by first syringe and then cup – which meant I had very little sleep. We did get sent home at one point but it wasn’t long before the weight gain wasn’t satisfactory enough we were sent back in. He was put on the Billy bed (UV light) and was treated for jaundice. His blood sugar levels weren’t right either but they were the opposite way they were checking for so apparently it was ok, I later learnt that his blood sugar levels were an indication of an infection but everyone was too hung up on the fact that I was tandem feeding.
His weight continued to stay low and his jaundice worsened so they added a top to the billy bed which meant that he had to have his eyes covered. It was really hard not to just be able to cuddle my sick baby too, with the only time I was able to touch him was when he was feeding – this was every 3 hours by cup. He made a tiny bit of progress and was able to move to first a normal cot, and then a side-cot attached to my bed. The whole time I was still expressing, cup feeding and feeding my other son when he came to visit. His bilirubin levels then reached an acceptable level and we were able to go back home.
The Sensory Seeker’s Infection
And then it happened. One day when he was 3 weeks old and I went to change his nappy there was just this awful puss oozing out of his belly!! Luckily there was a clinic running across the road and the midwife saw us straight away who said to take him straight to the hospital. No-one really said anything to me but a cannula was put into my tiny baby’s arm immediately – and he was pumped up with 3 different types of antibiotics. We were sent to another hospital and there he continued the IV antibiotics and returned back to his birth weight at last. His weight has been fine ever since.
I am not sure if these early experiences have been the cause of his sensory issues or whether he would have had them anyway. But I do think it shows that from the off he has always been a fighter. A strong little man.
Dr.Seuss’s The Lorax is a fantastic story and what a wonderful way to experience it than with live performance. Parents of children with special needs will understand that this isn’t always that easy so it is wonderful that more and more theatres are putting on relaxed performances to make it more of a possibility.
The Mousetrap Theatre Projects Relaxed Performance of
Dr.Seuss’s The Lorax on Sunday 5th November 2017
The Old Vic, London, SE1 8NB
About Mousetrap Theatre Project’s Relaxed Performances
Mousetrap Theatre Project’s Relaxed Performances are exceptional which I think is reflected in the fact that Dr.Seuss’s The Lorax has already sold out! The Relaxed Performances ensure that families with children with special needs receive the best support possible to make their experience as inclusive as possible. They are designed with a more relaxed environment in mind especially for those with autism, learning difficulties or other sensory and communication needs. There are less rules (like having to sit and be quiet), adjusted sound and lighting, trained volunteers and supportive staff, plus resources to help prepare for the visit. A maximum of 6 tickets per application.
About Dr.Seuss’s The Lorax
‘I am the Lorax. I speak for the trees!’
The irrepressible, big-hearted, moustachioed critter is back. Following rave reviews and an Olivier nomination for Best Entertainment and Family show. This dazzlingly funny, moving and inspiring show sees the go-getting Once-ler come face to face with the magical Lorax in a battle over the beloved truffula trees and the whole of Paradise Valley. Adapted for the stage by David Greig with music and lyrics by Charlie Fink, Dr. Seuss’s The Lorax is a brilliant riot of eye-popping colour, gorgeous puppetry and infectious music to enchant adults and children alike.
Ticket prices range from £2.50 for a child up to £20 for an adult.
This showing has a limited amount of wheelchair spaces.
Suitable for ages six and over.
Running Time (including interval) 135 minutes.
This is a sell-out show but you can still be added to the waiting list.
The magical dance show The Little Match Girl returns to the Lilian Baylis Studio this December, retelling Hans Christian Andersen’s timeless fable about the kindness of helping others.
This relaxed performance is a less formal theatre experience for those who may be on the autistic spectrum, or have additional sensory and communications needs, or just prefer a less formal theatre setting, offering them a supportive environment to enjoy the show in. To create this environment, performances are adapted in a number of ways including and therefore Relaxed Performance will have:
An altered performance
Lower lighting but house lights remaining on throughout the performance
wheelchair spaces (please note these have all sold out for this performance)
A designated chill out area available to use throughout the performance
Visual Story and Story Board available before the performance by e-mail when booking
For information on what to expect when you visit, click here to watch their film.
A visual story will be emailed to bookers closer to the time.
Show duration: 1 hour 5 minutes (no interval)
Please note, there is limited wheelchair spaces for this performance.
To book, call the ticket office on 020 7863 8000 or click here to book online.
Join the Access Scheme to keep up to date with what’s on at Sadler’s Wells in a format that suits you. If you are in receipt of disability-related state benefits, you may also be entitled to a reduction on the cost of your ticket. Reduced price tickets are limited to one per booking per production.
If you require further information and/or disability related assistance please contact:
Sadler’s Wells, the Lilian Baylis Studio and the Peacock Theatre are all inside the congestion charge zone. If you want to drive in the congestion charge zone between 7am – 6.00pm Monday to Friday, excluding Public Holidays, you will have to pay the £11.50 charge. There are some exemptions and discounts. For more information and to find out how to pay, visit Transport for London. Sadler’s Wells is just inside the zone, depending where you are coming from it is possible to park outside the zone with a short walk to the theatre – this is not so easy at the Peacock Theatre. The nearest car park to Sadler’s Wells outside the congestion charge zone is in Parkfield Street, off Liverpool Road.
On-street free parking in Hardwick Street and other streets off Rosebery Avenue after 6.30pm Mon-Fri and from 1.30pm on Saturdays (heavy fines apply to parking in residents? bays). There is a large 24 hour car park in nearby Bowling Green Lane.
There are 15 spaces in the Sadler’s Wells car park at the rear of the theatre off Arlington Way (postcode: EC1R 1XA) for anyone in your party who is over 65, a member of our Access scheme or a Blue Badge holder. These cost £5.00 for the over 65s and are free of charge to Access members and Blue Badge holders. To reserve a place, please contact the Ticket Office on 020 7863 8000.
When it comes to being a parent of children with additional needs I guess you notice things more. I am no way in saying that you become an expert in the condition but I personally think it becomes more likely you will spot others who you believe are the same. Sometimes this insight is welcome but other times it is best to keep these opinions to yourself – dependent on which of the parent types that the child has.
Different Parent Types of Children with Additional Needs
I believe there are basically four types of parent when it comes to children with additional needs and they are:
Parent Types 1 – The Fighters
These are parents who recognise that something is not quite right and fight tooth and nail to discover what it is and access all the help they can for their children.
Parent Types 2 – The Accepter
These parents realise that their children might not be quite the same as others but just accept things how they are. They probably do not even want a diagnosis for their child as they just see it as an unnecessary label which isn’t particularly helpful.
Parent Types 3 – The Lunatics
These parents are nuts – they think that their children need to be cured and do stupid things such as force them to drink bleach. They genuinely believe that their children will be better off if they can get rid of their additional needs.
Parent Types 4 – The Deniers
These parents are walking around with blinkers on and will just not accept that their children would benefit from additional help. These parents ignore their children’s behaviour or make excuses for it. Some may think that there is something wrong with having a child with additional needs (which quite clearly could never happen with a child of theirs) – whilst others just do not think that this is the case (even when there are so many obvious signs to others).
Changes for Schools that make it Easier to Help Children Regardless of Parent Types
Previously the parent types of a child mattered when it came to a child having additional needs and fighting for the right support in school. I have previously written about whose responsibility is it to ensure that it is identified and put in place. But that is now changing from what I can gather.Well from what I can gather now schools have more control in helping all children – especially those with type 4 parents who are not going to help the school access the funding that they need. From what I can gather any additional money which is given to the school due to The Sensory Seeker’s EHCP does not have to be spent solely on my child. That as long as whatever it is the money is spent on helps him then there’s no reason why other children cannot benefit from it also. I haven’t thought too much into it – but maybe if they built a sensory room – or got in sensory toys or ear defenders – this sort of thing can be shared. Maybe I have got this wrong and I don’t think it is unreasonable – just annoying that type 4 parents aren’t able to help with helping the schools to access this funding in the first place.
Do you agree with these parent types? Can you think of any others? Do you identify with any?
Honestly whose responsibility is it for making sure that every child receives a fair education? As it seems to me that the quality of education falls down to the parents. Of course this could be a whole topic of private vs public and grammar schools but I am in this instance talking about the rights of the child with additional needs.From the off there seems to be a divide for children between parents who recognise and fight for their children’s educational rights (and get them an EHCP) and those who do not know what they are doing, or are less willing or capable to fight. Shouldn’t training be provided to ensure that early identification is made for all children who need to access the additional help? Too many hoops have to be jumped through to prove it isn’t just bad parenting before actually getting anywhere when you are prepared to fight – so no wonder people give in – is it fair on those other children? Children who may eventually be caught by the system – but how late and at what cost to their education? But even after identification the battle does not end there. With meetings and appointments which usually relies on the parent educating those being paid to help on their child’s condition. Having to read up every piece of information they can and fight to have the right support in place.
Maybe this doesn’t happen as often as I think – perhaps we are the unlucky ones. Personally I feel The Sensory Seeker is very lucky in that I am able to best support him – but what about children who don’t have that? My renewed annoyance comes from the annual EHCP review.
From the off I felt patronised as the SENCO kindly explained how it was the first EHCP annual review (because let’s be honest it was SO different from a statement review right?). Then I had to go through and correct any errors – you know like making sure they had identified the right child which includes the right date of birth! Okay I am being harsh now that was such a little slip right. But then we came to the part about the family’s views – the work I had put in before the meeting – and the SENCO had no idea what I meant when describing the sensory needs. In fact she was quite sure that he didn’t have any!!!! Deciding that I would just deal with his meltdowns at home as he apparently was coping in school I almost just let her remove them from the EHCP – I mean what would I know about Sensory Processing Disorder compared to the trained SENCO? But as luck would have it his class teacher popped in and agreed that yes he did have sensory needs and straight away was able to give an example (you can read more about that meeting in the post about them not wanting him to be different).
I was advised that the SENCO would send me a draft copy to approve before she sent it off. But that never materialised. What did come was a letter saying that it had been received and that my draft copy would arrive shortly. Of course that arrived giving me 15 days from when the letter was written and not received to make any changes. IN THE SUMMER HOLIDAYS! I kid you not – I have no-one to go to for advice, I am pretty sure the SENCO is not in school and I have 4 children (3 of whom have additional needs) at home with changes they don’t adjust to and now I need time for this! But surely you think I just need to read it through and agree with it – because I already sat through the meeting and discussed and agreed things – right? Wrong big fat wrong. There are so many unbelievable errors in this draft it is untrue. Including matters such as who his key worker is and even what school he goes to! Never mind moving on through the report. Somehow I am going to have to find some time to go through it all. And then what – do they just accept my corrections? Doesn’t the SENCO actually have to do that? Or does she get a draft copy of my amendments and have to approve them – meaning that it isn’t actually all sorted for September? I am sure in The Sensory Seeker’s case it doesn’t matter as he already has one but what about those children sorting out one for the first time?
I know I may come across as angry at the SENCO but I am not. She is a lovely lady and am sure she is trying her best. It is the system that is letting these children down and parents who are already under a lot of pressure are just further feeling the strain.
The eleven plus and special educational needs can be a bit of a minefield. With our oldest he should have got into a certain school but on the day did not do as well on the eleven plus tests as we expected for his capabilities. He had no provisions made for his Asperger’s Syndrome (I have since heard of others having a separate room and longer time), not even to become more familiar with the building. But he was always a very able child and “grammar school material” and we knew that the eleven plus would put no added pressure on him. But the time is getting closer that The Sensory Seeker needs to think about high school and he assumes that he will take the eleven plus following in the footsteps of (what will be) all three of his older brothers. The trouble is he has a Global Developmental Delay and his Sensory Processing Disorder also makes it harder to learn new things. So the question is what to do?Annie Spratt
Do we let our son with Special Needs take the Eleven Plus?
Do we let The Sensory Seeker sit the eleven plus tests, in an environment that is most likely going to be difficult for him, so that we have given him the chance and opportunity just like all our other sons? Or do we make the decision that the test/school would not be suitable for him. Which will knock his confidence more – trying and not succeeding, or not been given a chance in the first place? I mean he is a bright lad and he may even surprise us! He has a few years to go yet and may even close the gap and catch up with his peers. He works so hard. Or when the time gets closer he may just be happy to move up to the local comprehensive school – which he is familiar with because of after school activities and will know lots of people there/going up. Oh how it would be wonderful if they never had to grow up!
Of course I have been suggested another option of paying for him to be tutored (which I haven’t done with any of my other sons), but then I really would be worried that the work would be too hard once he passed the eleven plus entrance exam. That then he’d end up switching schools anyway and then find it even harder to settle as the new boy. Other people have suggested this would be just filling the gaps in his knowledge where the education system has failed him.
Has anyone else been through anything similar? Any thoughts please?
Inclusion what do schools think that means? I recently went to The Sensory Seeker’s annual review of his EHCP to find out that his school means that they don’t want him to be different. I guess it is a feeling of once again coming back to rubbish parenting really, as it sounded like that the only thing causing any problems is him being treated in a way not like the others! They said that even with a one-to-one teacher he hasn’t made “extra” progress (just in-line with his peers) and that actually he needs to be encouraged to be more “independent.”
They did not seem to even understand Sensory Processing Disorder (which unfortunately is not a diagnosed condition in the UK) so it is no wonder that they don’t “get” that his one-to-one helps The Sensory Seeker deal with sensory input that may distract him and need his focus brought back. In fact the SENCO and his teaching assistant didn’t seem to think he had ANY sensory needs at school – which I found really surprising. They were thinking about just taking that section out of his EHCP all together. I thought that there was no point in arguing with them after I tried to explain some of his difficulties, because they just said it did not happen. Or well, that time he was hugging someone else all the time was okay because that person wanted him to do it. Of course the good old social stories came up – as obviously if he understood that he couldn’t just go around touching people then that tactile need will just disappear!
His EHCP actually has good guidance in it about his Sensory Issues from the Occupational Therapist, but because they discharged us they no longer come to the meetings. I can’t even really get her involved whilst the school are saying there aren’t any issues either! Luckily his class teacher was able to quickly pop in to the meeting at the time we were just about to move on to the next bit of the EHCP. She was then asked about The Sensory Seeker’s sensory issues (in a tone that he did not have any). But, thankfully, straight away she said that yes he clearly did and came up with an example straight away. In fact, ironically, it was to do with their sensory time where a few children go off to practice writing. She said that music was played to help them feel calm – but actually it stopped The Sensory Seeker from concentrating. That he was able to let her know it was a problem. The SENCO again was immediately in the frame of mind of not wanting him to be “different” so asked what the teacher did to resolve it. The teacher explained that they just turned the music off! That they didn’t *need* it. It is a shame that next year not only isn’t she his class teacher but she is leaving to go on to another school.
We will have to see how things go in year 4 because I am concerned that they are just knocking his confidence by ignoring his sensory needs and treating him no differently – such as setting him the same homework as the others for example. And then when it is not complete (because he has struggled with it so much, or not in the right sensory frame when he has come home) he is then punished (like the other children) by missing break times. I fear that this will then further impact his social skills and relations with his peers -especially as he becomes more aware of things such as being the only child not invited to parties. They have also mixed up the children in his year group and this change has already upset him. Unfortunately he was sick and missed move up day too – so we shall have to see how it goes. It isn’t all bad however, and I am not blaming the school it is because the knowledge just isn’t there. Things I mentioned (such as his inability to use a dictionary as he does not know the alphabet) they tried to help straight away. He seems to have a good relationship with his TA and in our opinion has helped him come on leaps and bounds.