BlogonX is almost here and although it is one of the friendliest of Conferences you can go to I am nervous as hell! And that I believe is down to the fact that I believe I am on the Autistic Spectrum.
Struggling with Social Interaction
I struggle with many areas when it comes to changes of routine and social interaction. I have a problem with facial recognition – which can include people I know and I have met several times (luckily I generally recognise people I know who they are and have met lots of times). I really seem to be struggling a lot at the moment – even people I have met on Monday I can’t remember by Wednesday! And people I have met a few times I confuse with someone else I have known for a long time! Of course this also has the problem that I cannot remember things about them. I struggle with conversation (always saying the wrong thing) and people really do not like to feel like they are not memorable. I try my best to mask it and this makes me feel really tired (or I go really dizzy and feel like I am going to pass out). That’s happened at several blog events even when I knew who the people were and felt really comfortable with them.
Struggling with Changes
I have been to Blogon loads of times but not in its new location. This will be the first time I will have driven to Manchester and then I need to figure my way around a new venue. I am confident that there will be lots of friendly helpful people there to guide me, but again I just feel like a right wally when I just don’t get where everything is (even at the end of the day!) and again this drains me. I see that some of the people helping to run the event are new to me too, as well as the above problem of worrying that I will not recognising those I have met before!
It may be a case that I am actually not on the Autistic Spectrum (and there’s many more reasons than this that I believe I am) – but these are my struggles either way. If you see me and I seem vague about who you are then please accept my apologies, and forgive me if I say anything not quite right – I never do mean to offend. I am sure after a few drinks at the launch party and I will relax.
I don’t think I have a favourite pizza topping – as long as it isn’t pineapple or anchovies (or sprouts) I pretty much like them all.
The three dinner guests I would chose would be my mother, my Nan and my husband. Both my mother and my Nan died when I was only 20/21 and only ever saw me with guys who were a right waste of space. I would love for them to be able to meet my husband and see just how wonderful he is.
My biggest life achievement would just be living. There have been many times when I have been close to ending it all and to keep going when life has given me some pretty serious knocks I do believe is an achievement in itself.
I would love to be Winnie the Pooh – not only is he awesome but he is surrounded by some pretty amazing friends who really care for him.
When I wake up in the morning I reach for my phone and go straight to Twitter – the light helps me to wake up.
I have never thought about what I would buy if I won the lottery as I never buy tickets. I guess I would get my husband a new car because that is what he’s done for me for my birthday.
As above I have an awful memory so don’t really have a favourite quote. Honestly I watched the new Marvel film yesterday and today couldn’t remember if the bad guy was blue or purple when asked!
If I were a superhero and could have a super power I would love it to be just to have excellent social interaction skills – imagine all the wars you could solve with the ability to talk well.
The best piece of advice I have ever been given is from Laura Seaton after her daughter Elizabeth was ill. She said – if you can change it then do, if you can’t then just don’t worry about it. I am sure she worded it better than though!
I use the laughing with tears emoji the most.
I wouldn’t tell myself anything if I could go back in time because it would have changed the course of my life and I wouldn’t have ended up where I am now. Despite my difficulties life is pretty good.
The wallpaper on my phone is of the Colosseum from when we went to Italy last Easter.
You know I am rather happy being a blogger as my job. It has given me amazing opportunities as well as the ability to be there for my children – especially important now I have decided to home educate them.
My favourite place in the world is home. There really is no place like it – as long as my family are there obviously.
Find out who else is going to BlogOnX on the Linky
Yesterday was the day that we started our first proper day of home educating The Sensory Seeker. I have been considering home education for a good half a year for his older sibling but the more I thought about school the more I was not happy how it was affecting The Sensory Seeker. They continued to not only ignore but tell me that his sensory needs did not exist.
Yesterday after the boys having an early start to learning (honestly they didn’t even want to put the television on they just wanted to start with education!) we went to the school and handed in the deregistration letter. This was also an opportunity to let friends who did not already know know and say goodbye (they will be keeping in touch with those they want of course).
What I learnt on my first day of Home Education with our son who has Sensory Processing Disorder
I was shocked as I guess somehow the school had convinced me that The Sensory Seeker had progressed so well that his senses were not getting in the way of his education. I am not sure if it is because I had more time to pick up on them or that it really is due to the different environment but I immediately saw how beneficial home education is going to be for him in terms of managing his sensory diet.
The most notable thing is definitely that The Sensory Seeker has different times when he is receptive to learning. On certain occasions throughout the day I knew that there was just no point because he was not in the right frame of mind. What would they do in this instance at school? Punish him? I just let him play/cuddle etc on contrast at other times he was really raring to focus and wanted to learn – and this also did not fit in the 9-3 school day.
Leading on from this there were definite times when he needed a hug or back/hair rubs. It helps calm him when being anxious or upset, or sometimes overwhelmed. It is all a new routine which he will find more difficult at first as change is hard for him. Home education I think will be better in this sense because there won’t be changes of going back to school and then holidays all the time.
The Sensory Seeker sometimes required something to fiddle with. I have to admit whilst reading him a story it was distracting for me as he flicked a toy dressing up tiara and did feel as if he was not listening. But I know he was and it was actually helping him to concentrate. In fact he even started to read the story himself without being promoted (also showing that he was listening as he knew where we were). At school when I have talked about things to fiddle with or chew it has been all about him fitting in socially so not looking different to others (when they have even agreed with me that he may need this).
The Sensory Seeker can move when he needs. This means he can get the proprioception and vestibular input he requires. We are lucky enough to have a large trampoline in the back garden as well as living locally to a park. We also wish him to learn how to ride a bicycle and he has taken to this really well over the holidays so this is a great way to break up any more formal learning when he requires it. This also includes going to the toilet without missing any play time (I hated that and am sure that is what led to him not drinking all day whilst at school!!)
I think this goes for any home educated child but following The Sensory Seeker’s interests really help with his more limited focus, concentration and attention.
He can wear what he feels comfortable in (or not wear as the case may be). Although he has been conditioned to the fact that you tuck your t-shirt in (which looks silly at times) because that was the “rule” at school.
No need to just be quiet. If the Sensory Seeker needs to make noise or express himself he can – he is not stifled about it being the right time/place/content (if he wants to talk about his special interest then he can!). In contrast there is quiet time for learning without all the noise from everyone else.
This was my experience after just one day – most of which was seen as play time. The Sensory Seeker already seemed so much happier and definitely closer to me (in one day!). He also made a friend! I would love to know of your experiences of home educating a child or children with Sensory Processing Disorder.
The National Theatre are once again catering for individuals who may benefit from a relaxed performance with their spectacular new production of Pinocchio.
About Pinocchio at National Theatre
Pinocchio by Dennis Kelly; with songs and score from the Walt Disney film by Leigh Harline, Ned Washington and Paul J Smith and adapted by Martin Lowe, directed by John Tiffany.
On a quest to be truly alive, Pinocchio leaves Geppetto’s workshop with Jiminy Cricket in tow. Their electrifying adventure takes them from alpine forests to Pleasure Island to the bottom of the ocean.
Certain themes, characters, puppets and moments in the story may be a bit scary for some children and therefore is recommended for brave 8 year olds and above.
Pinocchio is in the Lyttelton Theatre which is a proscenium arch theatre over two levels (Stalls and Circle). The Box Office is on the ground floor and there is flat access from the foyer to the back of the Stalls (row V). The Lyttelton Café and Long Bar are both on this level and the entrance to the Espresso Bar is 3 steps up from the foyer: An accessible toilet and telephones are also located on this level.
About the Relaxed Performance of National Theatre Pinocchio
Relaxed Performances audiences include people with autistic-spectrum condition, sensory or communication disorder or a learning disability. This may include changes in lighting and sound, more freedom of movement with a break out space and friendly ushers; no expectation to stay quiet as well as additional familiarisation of the theatre prior to the performance (such as a visual story of the production posted or emailed out beforehand; with lots of pictures of the building as well as the story).
The National Theatre’s Relaxed Performance of Pinocchio is presented by special arrangement with Disney Theatrical Productions; and with thanks to the Maurice Hatter Foundation, the Stanley Kalms Foundation and the Joseph Levy Foundation for their support towards relaxed performances.
The National Theatre’s relaxed performance of Pinocchio is on 17th March at 1.30pm.
All tickets priced at £16.
Call the NT Box Office on 020 7452 3000 (quote promo code RELAXED when booking)
Sensory Processing Disorder appears to be on the rise here in the UK and so is the ever growing of information about it. Therefore it made sense to share with you some great blog post from other UK Bloggers who write about Special Needs . It is not just individuals with Sensory processing disorder who struggle with sensory issues but those with autism, downs syndrome and other cognitive and learning difficulties. The reasons why their difficulties may occur may be slightly different – but the advice and the support does cross over.
What is Sensory Processing Disorder from Special Needs UK Bloggers
My understanding of sensory processing disorder is that it is an issue where the brain’s filter on the senses cannot quite cope – either letting in too much or not enough of each of the sensory inputs. That this can change the individual from sensory seeking to sensory avoiding each time they encounter the senses. That Sensory Processing disorder is hugely unpredictable – this is described well in Brody, Me & GG’s post The Unpredictability of Sensory Processing Disorder
Advice from Special Needs UK Bloggers for Sensory Issues
I would love to know if you have read any Sensory Processing Disorder posts from UK Bloggers – or if you are one and would like to be added to the resource post then please do get in touch. Are there any topics you feel that as Sensory Processing Disorder UK Bloggers we have not covered?
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.
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 comes to Sensory Issues I guess their clothes is one of the first things that comes to most people’s minds that could be a problem. The thing is when it comes to Sensory Processing Disorder and clothing is there’s a lot more to it than annoying labels and seams in socks.
Sensory Processing Disorder is the inability of the brain to filter out the senses which it does and doesn’t need. This includes touch, taste, smell, hearing, sight, movement and balance plus sense of body position. Each one could be filtered out too much or too little and those with Sensory Processing Issues have to get the right Sensory Diet to help counteract this. When it comes to clothing the individual may be a Sensory Seeker, a Sensory Avoider or fluctuate between the two. It is important with all things related to Sensory Processing Issues that the individual has their needs met. Keep a diary to work out when and how this will be best for them and this will help work out how to deal with day-to-day things like brushing their teeth and hair – and of course getting dressed.
Identifying the Individual who has Sensory Processing Issues with Clothes
Now the individual with Sensory Processing Issues may never want to wear clothes and would be quite happily naked all the time, stripping off at every opportunity or they may like clothes tight against their skin, layering up and not want to take them off. The important thing is listen to them (this may be with actions rather than words) and let them guide you to what are their sensory needs.
Signs to look out for include:
Taking their clothes off when they can or hate being naked
Wants to be barefoot or never wants to take their shoes off
Always tucking their clothes in
Not wearing warm clothes in the cold
Wearing too many clothes in the heat
Keep wearing the same clothes over and over again
Picking or sucking their clothes
Buying clothes for those with Sensory Processing Issues
When buying clothes for those with sensory processing issues there are some things to keep in mind to make life easier:
Consider shopping for specialist sensory clothing – including seamless socks, weighted jackets and compression clothing.
Take the individual with Sensory Processing Issues shopping with you. This means that they can have a say on what they do and do not want.
Even if they cannot talk you can gage their reaction to thinks such as the texture of the materials. If they can try them on even better – this not only ensures that the pressure is right for them but also whether they can put the clothing on and off by themselves.
With this in mind think about the fastenings – are they buttons, Velcro, laces, zips, poppers or elasticated? And if they hate keeping clothes on will you consider buying fastenings that they can’t undo to prevent them stripping? Is a belt an idea?
Let them have the control to choose and if they tell you that the size does not fit (even if it looks perfect) try to accommodate what they say (obviously not if they want trousers so long they are going to trip over them or shoes 4 sizes too small!)
How tight are the clothes? Around the ankles. Cuffs, waist and neck for example? Does the individual with sensory issues prefer it tight or lose? This could be the difference between boxers or briefs; sports bra or underwired bra? Do they want the clothes to be able to move around or hug the body?
How much of the body is covered? Do they prefer the air to touch their skin/or are irritating by the feel of clothing and opt for short sleeves and trousers? Is it better for them to have long sleeves/trousers? A dress would mean less of the material touching the body. Buy lots of layers if needs be – with a safe base layer at the bottom of acceptable touch/pressure (including with underwear and socks).
How warm are the clothes and what is the weather like? If the individual with Sensory Issues does not like clothes maybe thermal clothing would help to keep them warm whilst wearing less.
Consider shopping in second hand shops for the individual with sensory issues with clothes, as they have been washed many times and this can change the texture.
When it comes to shoes they may want the sensory input and so laces will help them feel tight and secure. But if they are unable to do up laces then Velcro may be a better option. If they do not like the feel then slip on shoes would be a better choice. Another choice is to consider a brand of barefoot footwear which is the most like not wearing anything on the feet sensory-wise but without the disadvantage of hurting the feet (on broken glass etc).
When you find clothing that the Individual with Sensory Issue likes then buy in bulk, including the size they are (for when they are dirty) and bigger sizes (if they are still growing). Consider whether a change of colour will make a difference, but if unsure it is best to stick to exactly the same garment. You may also wish to cut out any labels to avoid irritation.
Other things to Consider for Individuals with Sensory Issues with Clothing
Be careful how you wash the clothes – ensuring that the smell is right, and how it may affect the texture (deciding on whether to add fabric conditioner). Again if you use a tumble dryer consider how this will alter the texture and smell – but also be careful not to shrink it too!
Pick your battles and set boundaries. Ask yourself whether it really matters whether they are wearing clothes in the house, if they have a jumper on or if their clothes do not match/look silly. Focus on things that you feel do matter and have rules – like answering the front door/sitting at the dinner table having a pants on rule.
If the individual with sensory issues does not like wearing clothes then make getting dressed as part of their routine. Utilise dressing-up clothes, especially if they are available in their special interest. Allow them plenty of time and slowly get them to wear clothes for longer and longer. Or the opposite – for taking them off.
Pressure for the Individual with Sensory Issues Prior to getting Dressed/Undressed
As I stated at the start a sensory diet is really important and other things apart from the clothes can have a massive impact on the individual with sensory issues that can affect how they feel about them. The touch on the skin prior to getting dressed (or after getting under-dressed) can change how the individual reacts and may be able to prevent a meltdown. A light-touch can be alerting and deep-pressure is calming. You could try techniques such as brushing and swaddling or rubbing down with lotion.
I have been really lucky with The Sensory Seeker and he just likes clothes to be tight and tucked in so I have never had to buy any specialist clothing. Personally I cannot stand long sleeves and tend to live in vest tops and put a jumper on and off as required. As soon as I get home I strip down to whatever is acceptable, starting with my shoes and socks as soon as I walk through the door. If I get too hot and irritated I get to the point where I feel I cannot breath and get very snappy. I have never been diagnosed so would be interested to hear how others feel. I am a practical clothes wearer and you can read about my struggle with jeans lately. I have also got a coat which I love as it has a bit around the waist which pulls it in closer, stopping the cold air getting in. The sleeves also have extra bits to slip my hands into – ironically I like these as I hate things touch my arms – but I don’t like to wear the coat when driving.
If you know of good places to buy clothes for the individual with sensory issues or have any more problems or advice on this issue I would love you to comment below; thank you.
Those with Sensory difference can have problems when it comes to touch, this can be really uncomfortable and sometimes very painful causing the individual to have a “meltdown.” In some situations this really cannot be avoided completely especially when it comes to taking care of their hygiene including their hair. Washing, brushing and cutting the hair can be a traumatic experience for the individual with Sensory Processing Disorder – so what can be done to help?
Consider how Washing, Brushing and Cutting Affects them as an Individual
It is important to remember that with Sensory Processing Disorder (or Sensory difficulties for a person who has Autism) that everyone is an individual and will be affected differently – there’s not a one size fits all. You need to think about what it is that is causing them not to want their hair washed, cut or brushed – what is it about it making them feel distressed? If you can talk to them try to find out but if not you will just have to try different methods to eliminate the possible causes. For example, I know my oldest son with Asperger’s syndrome dislikes his hair being cut so much that he lets it grow for example, whereas I feel like pulling my hair out of the socket (and do often cut quite a bit off myself – this is called trichtomania and can be a sign of anxiety) because it just hurts so much. Remember that problems could be due to any of the senses so think about the situation in terms of them all:
The Environment where having their hair Washed, Brushed or Cut
Like most things when it comes to Sensory Processing the environment the individual is in can make such a difference. Consider the effect of noise, visuals, smells etc on them as well as what the textures are around them and how they are placed (for consideration on proprioception and vestibular senses). Make sure they are familiar with where they are having their hair done and are happy with it before attempting doing anything to the hair. Are they happier standing, sitting – or possibly even lying!? What have they got to look at? Are they content with just what is in the environment or would they benefit from being distracted by a television, games console, iPad, etc? Or maybe it is too much and they need sunglasses or to relax with an eye patch to lessen the visual overload. Is the lighting right? Would they benefit from coloured lights – or more or less lighting? Is there too much noise? Can they wear noise-reducing headphones to cancel it out? Or not enough noise? Could they have a radio on, or listen to music through some headphones? Is it the smell – is there a certain air freshener or products being used that they do not like?You may need to slowly build up their compliance with going into this room (for example in a hairdressers); start by letting them go in and leave straight away, building up their tolerance for staying there. Take a look at different places and see which is the most suitable – some have cars children can sit in, or you may find a hairdresser who is very patient. When our oldest son with Asperger’s syndrome was small we found a hairdressers who would let him come back over a number of visits because he got so distressed trying to do it in one sitting. Also try to take with you things that will help them feel relaxed. Alternatively see if someone will come out to your home.
Things to consider to help the Individual with Sensory Processing when having their hair Brushed, Washed, or Cut
Wherever it is that the individual with Sensory Processing has their hair done there are some things that may be worth trying to think about whether they will make it easier for them:
Can they have advance warnings – with visual aids, social stories, videos, or watching others first? Do they know how long it will take? Have they a visual timer to help with this? As above can they have it done over several sittings?
Can they be distracted whilst someone is doing their hair (with a fidget toy, stress ball, iPad, etc)? Do they prefer to be in control and do it themselves (washing and brushing) – and would they benefit from a mirror (this may also be helpful if someone else is doing it too)? Or is it impossible and therefore would trying to do it whilst they sleep be a last resort option?
Are they comfortable with the feel of a towel/shawl around their shoulders whilst having their hair done? Or would they benefit from a weighted lap-pad or a kick-band around the bottom of the chair whilst they have to sit?
Is the temperature of the water right? Are you trying to wash their hair forwards or backwards over a sink? Using a shower head or lying in a bath? Is a water spray bottle an option – or is the feel on their face unpleasant?
Obviously ideally when trying to brush the hair then clean hair is going to be easier, but this is not always possible. Is using dry shampoo possible? Consider the smells of the products and whether to use shampoo, conditioner or both. It may be a good idea to use leave in conditioner, Aragon oil, coconut oil, or detangler spray to make the hair easier to brush, and comb from the bottom in small sections, slowly going up to the roots. Afterwards consider tying the hair back and if possible plaiting it to avoid any further knots.
Different people will touch the hair/have a different pressure than others, as will different brushes and combs – can this be adjusted to try to find the right force for them? I know my teenager likes the feel of the nitty gritty comb and will only use that – so really experiment! Of course there’s a range of soft and hard brushes, combs with different spaces between the teeth and detangler brushes.
Do they dislike noises – so would prefer scissors over clippers? Or are they worried that their ears may be nipped? Do they need a warning when it will be noisy? And is it better to towel dry or use a hairdryer?
When cutting their hair consider swaddling. Our son was physically sick when the lose hair touched his skin and so a change of clothes may be a good idea.
Do you have any other problems or solutions when it comes to sensory issues and washing, cutting and brushing hair – please add them in the comments below. I would also love to hear if any of this has been beneficial to you.
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: