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.
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).
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?!
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.
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.
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.
I really do hate the school run because it means interacting with people. When I come home I am actually drained to the point where I have to sleep. I have even started taking antidepressants and fighting off the need to recuperate until the afternoon. But it is no good I can only reset myself with sleep. Then I have to do the school run again. I was put on these tablets fourteen months previously when I went to ask the doctors about a referral for seeing whether I have Asperger’s Syndrome. He told me it didn’t matter and that I could tell people I have if I liked – and wrote out the prescription. Ever since I have just been taking the tablets and paying for repeats. But still nothing is easier.
This morning on the school run a random man who works for the council called me a bully. I asked him what he meant and he laughed and said I had stolen my son’s scooter. I told him it was mine. My son was on his own scooter and mine (adult size too) has flowers on. I don’t get it – was he trying to tell a joke? People always have to comment on my scooter – there’s always something. But it isn’t just my scooter – it’s my clothes and other things too. I get hot really easily and hate to overheat. I was wearing shorts the other day when the sky was grey but it was still really warm. Again always said in this “jokey” way was whether my weather app was wrong! I am sure it was a joke but I can’t help it I just feel the need to explain that I get hot and can’t cope.
The doctor said that it was unlikely I was on the spectrum because I was aware that people treat me this way. That I want to fit in. He said I just haven’t had the right role models – teaching me how I am meant to behave in certain situations. But I thought that social skills were meant to come naturally? He said I could make a list. But I have no energy all the time. Surely someone should just be able to assess me and see. Why does it always have to be proven? I have begun to accept myself whether I have or haven’t got Asperger’s. Explaining to people that I don’t always say the right thing, or do the wrong thing or even get what is expected of me. It is up to them how they behave back towards me then. I do not know what more I can do.
As a parent there’s no real breaks. You are not allowed to lose your shit. You decided to have a child and that’s the end of it. Having a child with additional needs is no excuse – there are no allowances. I was reminded of this fact after finding it too much to cope with the Summer holidays alone (as my husband was working) with 4 children – three of which (it turns out) have additional needs and my house just falling apart – never mind the mess. Feeling so tired, exhausted (physically and mentally) and every burden weighing on my shoulders. I had no idea that this would lead to attending a Child Protection Conference in order to keep our children!
I discovered that the boys don’t like change – even if it is rewarding them for something. So can you begin to imagine how hard the holidays are for THEM? It was the summer of additional challenges, as our oldest was moving out to University – but not really doing much about it. He wanted to go without any real mention of his Asperger’s – just trying to get on with life – but unfortunately his condition had other ideas. In retrospect having my hair cut from reasonably long to spiky wasn’t the best idea. I was finding it all a bit much to cope with and I didn’t feel it unreasonable to ask for help (from my family) – simple things like the children flushing the toilet after themselves and not urinating all over the floor! After all the youngest of them was 6! Respite has never been an option for us as I am aware that there are children with needs far greater than mine, whose parents are not even getting this kind of support. Extended family never really have the children, not even for a day – well actually apart for the one child. putting added pressure on him (this has since been addressed). Just wanting, no needing, a little bit more help but it was not coming.
It is all a bit of a blur now, and I don’t remember why it got on top of me so much more than any other year but it did. I can’t think about my kids as being a burden because they are not – but their needs were just too much for me to handle on my own. My basic needs just were not being met (I am talking being able to go to the toilet without something happening that meant I need to rush to ensure their safety!). I guess it wasn’t what I expected to be doing with children of their age. Of course they were just children. I should have been able to tell myself that it did not matter. Who cares if there is stuff everywhere; mud piling up on the floor from where the bikes have gone in and out of the house; why should my children load their own dishes into the dishwasher right?
You see no matter how many days I coped with goodness only knows what, that one day when I just couldn’t take it I threw a toy across the room and screamed how I was fed up. I threw it so hard it made a tiny mark in my laminate flooring. The kids were upstairs and so they would have heard it. I felt awful. But never really thought more of it beyond that day. I apologised to the kids and got an earlier night. In fact it was completely forgotten about until some 3 months later when my life changed so much.
I don’t really know where it began – but one day I asked our 12 year old son to load the dishwasher which resulted in him punching me rather badly. He then put a picture on Instagram basically saying I got what I deserved. I did hit him back in order to defend myself before pinning him down. My husband arrived and defused the situation. I said something stupid which was meant the way it sounds and this resulted in further foolish behaviour from my son that ultimately led to the school ringing Social Care on us. Initially a nice guy came out, and this was the first time anyone had mentioned that they thought my son has special needs. The guy from social care (from the RATs team) tried to pass us on to the appropriate team to get help for our son and assured me we were doing all the right things. We were unaware that they had decided to close the case and were desperately waiting for help. The only reason someone else came was because I phoned the police when our son attacked me again – and the case was re-opened and passed on to someone else.
I feared that someone had done something to our son (due to things he was doing online but I will never know because no-one could get him to talk and they just gave up trying to find out). I was honest about everything as I wanted help – even just to be told coping strategies, so I told Social Care what I did the day I snapped. I was worried that it could be my fault (which is a nicer thought than him being groomed online) that I brought my pre-teen son’s behaviour on myself (there was a lot more things he was doing but I will not go into that here for his sake): They agreed it was.
Before I knew it there was a team from the Diversion from Care and Placement Team – talking about doing things to prevent my children going into Care! I have said before how I feel I may have Autism but never before have I truly felt this – thinking of only I could be less honest and say/do the right thing. I was looking up every bit of information I could and my husband was getting stressed that I sounded too textbook. Social Care had nothing to offer in the way of help – they came to see if they could get us to do family things together – but actually ended up suggesting we do less. You see my family are my life and I plan so much to enrich their lives and ensure they feel loved! The new Social Worker saw things differently and decided that my children were at severe risk of harm of emotional abuse from me! Even the fact that I have provided them with a desk each (which are covered in toys) as I am apparently too pushy! Do you know how that hurts – even now is that she was saying that it was because I was abused as a child: That I did not even realise that I was doing it. Fearing she was right and that I was oblivious to what I was doing I waited for help – only stopping myself from suicide because I knew that that would help nobody. I can fully understand the lady who has run away with her children because the thought entered my head too!
I found myself in a Child Protection Conference defending my right to keep my children. Absolutely everything brought up and used against me. From putting my children in danger by putting their pictures online, to the fact that my son’s notes had not been updated over a medical matter – so I was blamed for not caring and it ultimately being my fault. Feeling a sinking feeling as they recalled that my son broke his arm badly when he was only four years old – and I had no witnesses around. Things I said twisted, people saying incorrect things in front of us. I had to stay quiet so as not to come across as over-emotional (again something they said as I was SO upset about the experience). The whole experience completely disrupted my family (they had to keep going out and pulling the kids from school and questioning them) – did I mention that they do not cope with routine changes. Plus they wouldn’t consider that The Sensory Seeker has a disability (despite the fact that he had a statement of educational needs) because he was NOT DIAGNOSED AS AUTISTIC. So when he apparently said that he heard me say that I wanted to kill his dad it was used as actual evidence of how evil I am (I hadn’t even said this at all!)
Parents are meant to get all the reports 48 hours before the Child Protection Conference – but this wasn’t the case. The Chair hadn’t even got all the information at the start of the CP Conference – and some of which we were blamed for (although we were unaware we had to give it!). Our son was asked if he wanted to go because of his age but instead sent an advocate. I didn’t think it a good idea he went especially some of the things said about him and us. In fact it was even suggested that The Sensory Seeker’s difficulties are due to ME emotionally abusing him as he did not get an Autism diagnosis! Thankfully his head teacher knows how hard I have fought to get everything possible to help our son and how much progress he has made with this support and backed me up. Still absolutely heartbreaking to hear, and what if I wasn’t so forthcoming (or pushy as teachers are calling parents that fight for support!).
The Child Protection Conference ends up with a vote – everyone around the table says what their verdict is and the majority is the deciding factor. As I sat with my pen and paper tallying up the results it came down to the last person. People who didn’t know us, didn’t know the facts and certainly had things wrong! Luckily for us it went the right way – but frightening to think one more vote and things would have been really different. We did not receive any help, support or advice. The social worker passed us on to a family worker and she had fleeting visits at our house before passing us to a charity who just had one meeting at the school. The awful thing for me is that they closed the case down after our son got accidentally burnt with an iron and he beat me up one more time.
We never considered our son to have special needs but after the first social worker suggested it, so did the police, the school and CYPS – but no the latter won’t assess him and also closed the case down. He hates seeing people and has calmed down so much that we just don’t want to annoy him. There was a lot of things that went on that year, and one of them was that he got kicked off the school bus (apparently for persistent bullying but it was the first time we had heard about it). Social care were really keen that he caught that bus again but we decided against it. I later heard that the bus driver was taken off the route as he was found to behaving inappropriately let’s say with the children!
I am so proud of our son and how he has come out the other side of this and is like a different boy again. Although we are still struggling with getting him to do basic things at least he isn’t being violent any more. As for me I have been taking anti-depressants and do not think I will ever get over what social care did to me, and my family and the thought of what could have happened. I think about all those poor kids who are having all manner of awful things happen to them (and even what happened to me) and it makes me feel sick to the stomach that I was consider even close to the same. That they wasted so much time interrogating us when actually if anything I am guilty of spoiling my kids and doing too much for them.
I want to thank everyone who supported me, especially my husband who held me up and defended me. I thought the most awful thing was going to happen and that I would have to leave all the people I love in order to keep the rest of them together as a family. I have felt so scared for so long of sharing my story for fear of losing or upsetting them – as well as people who don’t know me judging me. But I wanted to share in hope that I can help someone else.