You may notice that I don’t really write that much about The Sensory Seeker on here anymore and that’s for two reasons. One is the obvious reason that things have changed in the world of blogging in terms of children’s privacy. Some would argue it’s always been the case but honestly it wasn’t as bigger deal back 11 years ago. Of course he is also older now.
The Sensory Seeker Volunteering at The London Marathon
Of course there are complications in his life that are mostly related to his age, but as I say a lot is too personal and private to share. But mostly things are going really well.
Fraud
However, I also feel a bit of a fraud. Things are going so well for him now compared to when he was younger it almost feels like we got it wrong. That he doesn’t need so much help. Thing is his needs are by and large being met. Comparison maybe the thief of joy, but when I listen to others I know how lucky we are. So I mostly stay silent, fearing my knowledge is limited.
Yes there’s the odd thing that The Sensory Seeker struggles with, of course, but currently he is perfectly supported. Least I hope. Any difficulties seem so minor that they seem pointless to post about.
Reading Back Through Old Posts
But then I was tidying up the blog, and rereading through old posts. It became clear that previously I was not happy with one of his schools that the way they treated me, and him. That this had really impacted on his journey.
If anyone in education is reading this for ideas on how to support then know it can make such a difference. That actually things can be good and it was important to share that too.
The current school acknowledge that he has Sensory Issues that he masks at school and are happy to support them. Mostly he doesn’t want to appear different so hasn’t got a wobble cushion or ear defenders (when they most likely would benefit him). He isn’t managing his sensory difficulties fully but turns out he does have strategies he is using himself at school – which is brilliant. No-one will do it for him when he leaves school, so he needs to learn to manage it himself.
The Current School
Yesterday I went to The Sensory Seeker’s Year 9 Annual Review for EHCP meeting. Beforehand I was really quite anxious about how his EHCP probably didn’t have things in it to ensure everything was okay after he left school. This was due to the EHCP phase transfer review for year 10 talk I went to making me realise how important it was.
His current school is marvelous. In fact the Year 9 annual review felt like we just had a chit chat, but that actually everything was sorted. Covered not just for now (which it is) but future proofed too. There was talk of transport training and exams; help with DofE and what he wants to do for the long term. He’s even going to learn to make tea and cake – which is fantastic given that currently he says he wants to stay at home forever.
Okay some of it makes me feel a bit sad because there is still so much he’s struggling with, but there’s supports. Plus he’s working really hard. Sometimes I wish he could stay here forever because it’s obviously a nurturing environment. But alas there’s nothing after GCSEs and he will have to move on.
That’s it
Sorry this is such a badly written, and thrown together post. But I figured that it was important if anyone was reading about his journey and fearing for their child’s future. Because things are going well and they should see how possible that is – but know that the right support is essential.
The Sensory Seeker has returned to school after two and a half years of home education. We are still in the middle of a pandemic with many people now choosing to home educate their children with special needs. However, The Sensory Seeker really wanted to go back – this is how the first part week has gone from the perspective of his mother.
The Sensory Seeker and Home Education
To be honest The Sensory Seeker never wanted to leave school and if it wasn’t for his brother he never would have. We had previously made the mistake of moving one child from an educational setting and leaving the other one there. Let’s say that the “adults” didn’t act very grown-up about it! We also discovered that the school weren’t seen to be looking after children with EHCPs very well.
The school had told us he was doing well and was pretty much in-line with his peer group. They said that he didn’t want any help as he wanted to work independently. Then of course there was their attitude that “we are all on the sensory spectrum”. Therefore it came as rather a shock to find that he was not in-line with his peer group in math and English (the subjects they claimed he was) and that he seemed unable to work independently. In fact we were told by tutors that he was broken! His confidence was super low and that they hated to think how badly damaged he would have been if we had not opted to home educate. He was not at all receptive to learning at all.
The Sensory Seeker Returning to School
The return to school happened as he is now old enough for secondary education – which is a big change for everyone. In fact the pandemic probably made The Sensory Seeker’s adjustment easier because other children hadn’t been to school in a while. Plus a lot of the lessons are in the one classroom.
He has been back a few days now and it feels very right. The Sensory Seeker is full of confidence and enthusiasm. He has made new friends and isn’t afraid to be himself. If he doesn’t know the answer to something, or wants help, he has been able to easily ask the teaching assistants. Luckily homework is put on an app so we can easily see what needs doing. He has already willingly just got on with homework set when he has got home. He wants to try new things and hasn’t feared the change (like accessing a hot meal from the canteen at lunchtime).
Sensory Issues at Secondary School
Of course he still has sensory issues at school but seems to be just dealing with them by himself. The ones he has mentioned mostly have related to clothing so far. Having to do his top button up, the tie tickling him when he has to tuck it in inside his shirt (he finds tucking it in lower down helps), his rugby shirt is itchy (he is going to try wearing his skins next time to see if that helps). Also his lunch has been all over his clothes so I have to keep cleaning his blazer and tie – but he hasn’t told me that anyone has been mean about it at all.
The School itself
Overall I am really happy with his first week (well he started Tuesday) at school. I have heard a lot of parents praise the SENCO, and she has got a very good reputation. But also the history teacher stopped us one morning to check all was okay. Then a teaching assistant did too – all just whilst we were walking down to queue to get into the school. Fingers crossed this all continues. As a bonus he is learning Spanish which he has already started as part of home education.
If you are looking for a perfectly well formed blog post about a My Plan review then you’ve come to the wrong place as I am fuming, and writing this from a VERY emotional place. You see the thing is this is not the first child I have had to fight for and well I got subdued into a false sense of security as his last school was really good – this one is rubbish and so is the SENCO.
Photo by Ben White on Unsplash
So why I am I so annoyed about the My Plan meeting that myself and my child got invited to – well there really was no point us being there – apart from to talk at us and tell us we are wrong. The Sensory Seeker’s My Plan for this term targets three areas of what he should be achieving for his year group (whether he still needs to be able to accomplish things from previous years is neither here nor there and there was even a comment about worrying about SATs in Year 6!!!). Anyway back to these 3 targets: They all overlap into basically the same thing – reading and understanding, being able to communicate in a way that’s understood and being able to write in a way that’s understood. Each one with a target date that has passed!!!
I was told that the reason for the new deadline (which it wasn’t clear when that was) is because that is what the class are working on currently – so it made sense to move it. I asked what help The Sensory Seeker was getting to reach these goals: Of course the answer is NOTHING. Of course I wasn’t fed that information but instead was told how the whole class are being taught – how it is being explained, modelled, blah, blah, blah; but not a single thing as to how my son, who clearly isn’t getting it, is being helped further. On looking at the sheet it says an adult at home (and at school) will read and ask questions about the reading; that an adult will correct him when he doesn’t speak grammatically correct and that he will say a sentence before writing it out. The latter of which already becomes apparent is a problem as he misses words out when talking (hence the target before about communication).
Then it happens. The incident where The Sensory Seeker missed lunch time play to finish work (because the rest of the class had) is brought up. The TA is proudly showing how much better he did than in the class. So I take breath and DARE to mention again my concerns that his SENSORY PROCESSING DISORDER is being IGNORED!!!!! I do it in a polite way and suggest that there’s a possibility that the classroom was different when everyone is out playing than when full of children. I suggest it may be noisy, more visually distracting – I don’t know I am not there and I am not the SENCO. Of course the first thing that is mentioned is that it ISN’T noisy – even when The Sensory Seeker tells them that it is! And THEN they tell me that ALL kids are distracted! All they did do was joke to my son about wearing headphones (which would have been a good call if they weren’t laughing when they said it, besides WE have tried them and they do not adjust the sound right for him). How I did not just get up and walk out I do not know. If my son hadn’t have been there I may have done. In fact now I wish I had grabbed my son and said this is a waste of time and I am taking him out!!!
So there we have it all my son’s problems will be solved if he just reads more! These Sensory Issues I am just making an issue of because we ALL HAVE THEM! Our other son is on a school trip until the end of half term, I may see if I have calmed down any more by then as to what I wish to do next.
When it came to our oldest son’s twenty-first birthday I decided that a life-time experience would be best – and that meant travel. After a lot of thought I decided on a surprise trip to Iceland. Having Asperger’s Syndrome and never have flown before, myself and my husband decided that it would be best if I took him on his own. This also meant there was no distraction from the needs of The Sensory Seeker and that the focus was on the birthday boy.
Asperger’s and a Surprise Trip to Iceland
I think we are fortunate enough that our son has come on such a long way, therefore we did not have to prepare him about the trip far in advance. This isn’t going to be the case for a lot of individuals on the autistic spectrum who do not like surprises or generally changes in their routine. If you are taking someone who needs to be prepared then do find out as much information as you can, and prepare visual aids to help them comprehend it all.
It was actually a sort of surprise up until 3 days before we left (when his brother accidentally blurted it out!). Only a sort of surprise because he knew some details, so that he had some manageable bits – and he guessed the rest. I simply asked him to make sure he had his swimming trunks and winter coat. In fact I am really proud that he worked it out from just those two clues – that and the fact that’s where his friends had been. Slowly other details of my plans were leaked out before the big day – so that he was as prepared as could be and was able to ask any questions he had (in his own way). I could also tell him things – such as about not getting his hair wet in The Blue Lagoon (and he was okay about wearing a swim hat). Again he really surprised me because he had read up and spoke to his friends about this type of thing when he had guessed he was going.
Packing was challenging even though we would only be gone for one whole day. I guess a lot of it is the unexpected – knowing it would be colder, but not really how much. The uncertainty of whether what was being packed would be alright. After a whole of day of trying on combinations of clothes and making piles the decision on what to take (and for which day) was made and the cases were packed. I explained what would happen as regards the airport with particular focus on getting through security. This included making sure he knew what would go in the trays and we had what we could put in one bag to make it easier to take out. Also that he could be called over for further checks – but that these were just random and nothing to worry about. We flew Business Class on the way out and I would say if you can afford it then do it, it made things so much easier: From fast lane check-in and the airport lounge – to how we were treated on-board (although it did make for some awkward social moments such as when we were given white flannels before food). There was a lot of time spent in toilets and I am sure this was anxiety more than anything – and generally just needing to give him more time to be ready before we went anywhere.
I do recommend having things planned at least loosely – and we had a Northern Lights Mystery Tour and a trip to The Blue Lagoon booked. We did not see the Northern Lights (which is why I took him there in the first place) but it was nice to spend some time together and experience such a wonderful place. In hindsight I wish I had booked the meals (we only had breakfast included) but we seem to have managed okay (note Iceland has lots of KFC, Subway and Pizza). We both agreed that right now Iceland isn’t the place for The Sensory Seeker so it is a good job we went alone. Iceland was very dark and cold – with a strong sulphuric smell most of the time.
If you have any questions about a first flight for an adult with Asperger’s Syndrome then do pop them in the comment box below – we may be able to help. Or if you have any tips I am sure other readers will appreciate reading them. There was a special assistance at the airport but we did not take advantage of this service.
The Sensory Seeker never fails to amaze me. Even when he has a bad day I can see just how far he has come. The other week we had some snow and this really is a perfect example of this. Although after a little while the sensory overload (and freezing cold conditions) became too much for him (hating everyone and feeling that everyone was against him) he first had some fun!
The Sensory Seeker copes with Snow aged 8
First of all he can follow instructions – it doesn’t seem that long ago that we had to physically put his socks and shoes on, as no matter how many times we gave him the instruction he just couldn’t do it. This was even when he started school – so in the grand scheme of things that wasn’t that long ago. Not only did he get himself dressed (picking out his own clothes) and out his socks and shoes on – but he was also able to listen to the fact that he also needed to put his coat, hat scarf and gloves on!
Next the sensory seeker was able to play in the snow. He made snowballs, helped build a snowman and of course got down in the snow and made snow angels. This was more to do with just actually playing (and with his family not isolated) rather than just touching the snow and covering himself in it. He even kept his gloves on (when told) whereas before he would have had to have touched the snow with his bare hands. This I believe also helped him stay out in the snow for a longer period of time.
Plus the fact that he was well enough to play outside – he used to always be in and out of hospital with his bad chest. Every time it got slightly cold he would be back on antibiotics.
Unfortunately it did suddenly make him really upset and spoiled all his enjoyment. It is a shame really that it doesn’t snow more often because I think a part of it is that it is out of routine. For The Sensory Seeker that day he decided that he hated the snow and was glad it didn’t happen often. Not even a special hot chocolate with marshmallows could make him feel better. But before the sensory meltdown I saw him having fun. I am so proud of the progress he has made and I hope that one day he can enjoy the snow as much as the rest of us (in my family) do.
I guess that I should not be surprised but the mandatory reconsideration arrived and they had still scored my son zero points. First off I hate the way they write it as if HE has been able to communicate all this stuff to them, when actually I have written it for him by me! The next is the continued lack of respect for his struggles as an adult on the autistic spectrum and the fact that they seem to suggest that only physical disabilities count. So then the next step is to decide whether we will take it to tribunal.
The DWP Tribunal for Personal Independence Payment (PIP)
You have to give it to them that the way they have worded the letter it really makes it feel like there is absolutely no point in going to tribunal. Not only does the mandatory reconsideration keep going over the same things again (like saying what a wonderful rapport my son had with the interviewer – communicating with no problems whatsoever – when actually I spoke for him a lot, he had a panic attack and ended up with his head between his legs trying to breath!) but at no point does it explain what a tribunal is? Why it is any different to what has happened already – just telling you that you only have a month and a website link to visit (www.gov.uk/appeal-benefit.) There are 2 copies of the mandatory consideration notice as one is needed to be sent off for the tribunal.
Photo by Alisa Mulder on Unsplash
Reasons my son scored zero points in his Mandatory Reconsideration
Even at the face consultation the guy asking the questions said that he had a nephew with severe autism. Straight away my son felt compared – and it does feel that is the case. It is very much a case of just get on with it there are people much worse off than you. To be quite honest I would accept that if they did not score him as zero and say that he does not have the problems he has. If they acknowledged them but said unfortunately this benefit isn’t for them I would give up. They have made me feel like giving up with their reply and let’s be honest Christmas time isn’t the ideal period to be dealing with it all.
No problems physically speaking.
Because my son knows how to speak any problems associated with struggling to communicate have been ignored. Cognitively he should just talk. Feels a bit like they are saying that he should be grateful he is able to communicate and should just get on with it. HOW we are meant to argue against this?! As this is their line of criteria – as far as they are concerned they have evidence that communication is “adequate!” Plus they said he made eye contact – if only communication were that easy!
No physical problems eating.
Again physically and cognitively my son is able to prepare food (from the tests where he was asked what day of the week it was etc). The fact that he needs prompting, reminding and ideally supervising (to make sure he doesn’t get burnt/eat out of date/raw food etc) does not count when using their criteria.
No input from a psychologist or mental health team and is not on medication.
No quite he was getting by with just a specialist mentor (who also doesn’t count). Services are hard to get with so many cuts – but I am sure after this ordeal he will need to seek out this support! And unless you are seeing someone/taking tablets then Autistic Spectrum Condition obviously doesn’t affect your daily life (at all as he was scored zero on everything). The likelihood of him getting to see any psychologist or someone from the mental health team within the time period I should imagine is very slim (I guess unless he tries to commit suicide!!!!) and I am not really sure where I go to access such support for him in the first place! To be honest maybe they have done us a favour because we have just been getting by – maybe it is time we asked for help again.
Thank you everyone for your support in our journey so far.
Websites to help with a Personal Independence Payment Tribunal:
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).
Photo by Scott Umstattd on Unsplash
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!
Photo by Alisa Mulder on Unsplash
Mandatory Reconsideration for Personal Independence Payment
Photo by Jordan Whitt on Unsplash
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?!
Moving from Disability Living Allowance (DLA) on to Personal 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.
Asperger’s can lead to bullying
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.
As I feared a lot of what his problems are were put down to “student life” Photo Credit: Annie Spratt
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.
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.
