Christmas Gifts

Christmas Gifts: A Guide for those with Autistic Spectrum Condition

When it comes to buying Christmas Gifts for those with Autistic Spectrum Condition  I think that what it is easy to forget that the recipient still likes the same presents as other people. What may be different is that they may be a little more restricted in their likes and dislikes. It is important to remember that everyone is an individual, and this is definitely the case for those with Autistic Spectrum Condition. Although there are some things that seems to have a common element to them; with that in mind I asked some British Women with Asperger’s Syndrome for their thoughts on Christmas Gifts. Note that most of this will also apply to those with Sensory Processing Disorder but it was a bit of a mouthful putting both each time.Christmas Gifts

Buying Christmas Gifts for Indivudals with Autistic Spectrum Condition

I think it is important to remember that just because you like certain Christmas Gifts then this does not mean that someone else will too. Some of the women with Asperger’s Syndrome expressed how actually they really would rather not have any Christmas gifts at all, than the wrong ones. That mountains of Christmas gifts can be overwhelming – especially for those who are sensory avoiders – with all that colour being be too much! Some even prefer no gifts at all, not wanting their space to be filled with something they do not want or need. Not wanting to waste money for the sake of it. Instead why not club together with other members to buy one perfect present. However, something small and appropriate is better than spending lots of money for the sake of it.  Something homemade/handmade is a nice idea or what about an experience or day out – even better still accompany them on it to help reduce any anxiety.Hot chocolate Santa Gifts

The Christmas Gift of Alone Time

Sometimes those with Autistic Spectrum Condition may find the best Christmas Gift is that of  some alone time. This may be just to shut off from the world, to cope with a meltdown, or to relax, for example. This could be a place to hide (like a tent), or a trip away to a spa/night away, or even just back to some bath products for them to find some peace. Again how you decide on the perfect time alone will depend on the individual’s needs. Personally I need to sleep to cope with the changes that Christmas brings, it is what helps me to reset – and therefore some nice new pjs are perfect for this! (with the right textures of course, I hate those hot fluffy tops!)Christmas Gift of being alone - woman covering her eyes with a hat

Giving the Wrong Christmas Gift to the Individual with Autistic Spectrum Condition

Giving someone with autistic spectrum condition the wrong Christmas gift can be even more stressful than not getting them a present at all. They may feel that they have to pretend to like it or be called ungrateful for not being happy with the givers choice. This may ruin their Christmas as they try to hold it in until they end up having a meltdown about it. That is if it doesn’t eat away at them for months because they want to be grateful and are thrilled someone has put so much thought into it- but they really don’t like it! Often generic gifts are unwelcome and they may then hate how unwanted Christmas gifts clutter up their home. This can leave them feeling really anxious about what they are supposed to do with them and find it hard to get rid of. This could especially be the case if the gift is useful but they just have too many of them (like socks!). Again presents that interfere with their Sensory needs will be unwelcome even if well meaning – such as smells they have not chosen (shampoos, perfumes, candles, etc); foods (which may be too rich, or not spicy enough); make-up (which may not have the right texture) and jewellery (again the touch and visual being not to their liking).Christmas Gifts bottles of perfume

Christmas Gifts Guide for Someone with Autistic Spectrum Condition

Christmas Gifts Based on Special Interests

The individual with Autistic Spectrum Condition often has special interests which will make it easier in finding Christmas gifts that they will like. It may be clear what their special interest is and then you just need to ask yourself whether they already have said item related to that gift – and if so would they like another! Books about their main interest is often an item to avoid because if they wanted it then they would most likely have already read it. It may be hard to get the individual with Autistic Spectrum Condition to wait for Christmas to receive something because they may just want something when it is available (I struggle with this particular with my oldest son with Asperger’s Syndrome and his special interest of computer games, which are released around a month before Christmas!). If they don’t want a duplicate item then make it easy for them to return it with a gift receipt – which will also help make it clear that you won’t be offended if it isn’t what they wanted.

Christmas Gifts Special Interest Pokemon TopDon’t get hung up about age-appropriateness of the gifts either – if they still like Thomas the tank engine in their teens then why try to dictate that they have something else? It’s about developmental appropriateness and where that individual is at. Surely Christmas is a time for happiness. Again consider whether such an item is suitable for their sensory, verbal, gross and fine motor levels of development. For example, it does not matter how old someone is, if they are still putting everything in their mouths then small pieces of LEGO are not ideal, nor are they any good for someone without good fine motor control (although they could help with developing it). Board games may be too complex cognitively for their age even though they state that they should be able to play it – but then can it be adapted. . If it is a child that you are buying for then it is easy to check with their parents.

You may be interested in my Christmas Gift Guide for Pokemon Fans and LEGO Christmas Gift inspiration.

Clothes as Christmas Gifts for those with Autistic Spectrum Condition

Clothes can be a really complex area when considering buying Christmas gifts for someone with Sensory Processing Disorder and/or Autistic Spectrum Condition. This may be due to knowing exactly their needs – are they are sensory seeker or sensory avoider? Do they like a tight or lose fight? What is the feel of the material like? How does the visual of the item make them feel? Where are the seams and labels? Is it soft or scratchy? How much of the skin do they touch? Do they have problems with the fit (too tall/too short)? Clothes as Christmas Gifts could annoy some people with Autistic Spectrum Condition, seeing it as rude and assumptions to determine what someone else should wear, whereas someone else might love to get right the right piece (such as some over the knee socks!) – so it is really important to think about their individual likes).

line of pegs - christmas gifts for those with autistic spectrum conditionI remember my mom being surprised when I HATED the leggings she bought me with the gold spots on because I LOVED the top that was exactly the same – but to me it wasn’t and it made me feel ill. Likewise now I cannot find a pair of jeans I like for love nor money (they have changed the design and they are really tight on my legs), and I have worn jeans for as long as I can remember! I don’t like change and that is the same when it comes to clothes. I also like clothes that are practical – big pockets, zip pockets so I do not have to carry a bag with me. Plus I hate long sleeves as I get hot easily.

Practical and Sensory Christmas Gifts for those with Autistic Spectrum Condition

As I said I love things that are practical – anything that makes my life easier. That said there’s a thin line between a thoughtful useful gift and me being insulted (I would go mental if anyone bought me the pots and pans we need as it is like it is implying I should be cooking, rather than being something for me personally). You need to once again think about the individual person, especially if they have sensory needs.For example I really do like expensive shampoo, conditioner and body washes as they are things that I use anyway but have a touch more luxury (as long as they smell okay, as the wrong smells can make me feel sick). This seemed to be common with the other ladies on the Autistic Spectrum who enjoyed getting toiletries IF they were the right ones – don’t assume and buy the wrong ones. Lush products seem to be popular with their glittery colourful bath bombs, particularly as so many of the ladies with Asperger’s Syndrome found the shop hard to navigate with the overpowering of too many smells and colours, and pushy shop assistants wanting to speak to them. Again remember this will not apply to every individual with Autistic Spectrum Condition.

Christmas Gifts LightsOf course Sensory Christmas Gifts may be very welcome offerings for those with Sensory Processing Disorder and/or Autistic Spectrum Condition and could help improve their lives. Sensory enriching products include pretty lights (fairy, ones for the bath, lighting up the ceiling and walls, colour changing objects, projectors and salt/lava lamps); things with nice textures (pillows, teddy bears); a bubble machine; art equipment (visually pleasing and allowing the individual to be creative); a range of fiddle toys and noise cancelling headphones (although I just have wireless headphones and I play music through them and this works well for myself).

For children with Sensory Processing Disorder and/or Autistic Spectrum Condition some practical things that they may love (dependent on age and ability) are a trampoline, bicycle/scooter, LEGO and board games – as the former are great for getting them moving (beneficial to both sensory seekers and sensory avoiders); and the latter develops fine motor skills, patience, following instructions and even turn taking.

Getting it Right when Buying Christmas Gifts for Someone with Autistic Spectrum Condition

The biggest suggestion given for buying Christmas gifts for Someone with Sensory Processing Disorder and/or Autistic Spectrum Condition is to just ask what they like instead of assuming that they are all a hive-mind who like the same things. Many people on the Autistic Spectrum like routine and therefore changes are not welcome, so do not obsess that presents must always be surprise. Maybe have a traditional gift, that you know they like, and can give every year. Something practical like a calendar maybe (of their special interest). But then do bear in mind that if they suddenly do not receive it then this can also cause some issues.

Christmas Gifts CalendarAnother idea is to look at their wish list, that way there is still an element of surprise but in a controlled way that means they will still receive something they like. This can be done either by creating an online wishlist (like on Amazon) or they could print off specific pictures of Christmas Gifts they want. Those with Autistic Spectrum Condition may be aware that they are difficult to buy for and therefore would not be offended if you decided to play it safe with a gift card; as long as you do not get it wrong. Does anyone like being told what to do or where to shop? So make sure you know that they would appreciate a specific store to spend their gift card at. Clothes shops (see above) are usually not a good idea. Instead why not buy Gift Cards which can be used at many different places/buy a variety of things – such as Amazon gift cards or Love 2 Shop Vouchers. But do not be afraid to give money especially if it what they have asked for – as this may anger them, especially if they are trying to save up for something. Alternatively you could use a pre-paid debit card.

Opening the Christmas Gifts with Individuals with Autistic Spectrum Condition

Those with Autistic Spectrum Condition may feel uncomfortable being watched opening their Christmas Gifts. This is because people with autistic spectrum condition may struggle with emotions – including hiding their own. It might not even be anything to do with the gift itself but, as mentioned, many do not like surprises. Or it could be a case of their expression not matching what they would like to communicate. The anxiety of the “wrong present-face” may make them not want to open their presents at all. An example I was given was someone who was opening a perfectly lovely present got sticky-tape under their nail and pulled a, “ewww gross horrible!” face and was scolded for it.Christmas Gifts opening

Thank you to all the ladies with Asperger’s Syndrome who helped me to compile this article. If you have any further insights I would love to hear them. And a Merry Christmas to you all.

Related Posts of Interest:

dirty hands

Personal Independence Payment Reasons for Saying No to Asperger’s Syndrome

Personal Independence Payment the ironic process where people with Asperger’s Syndrome need to be able to communicate their difficulties with communication. I am sure this new disability benefit has affected so many people in so many ways. If you have been following the journey so far then you will know that my son with Asperger’s Syndrome was asked to switch from DLA to PIP; that he has already had the PIP Face-to-Face Consultation and been told that he does not qualify for Personal Independence Payment.  I have since sent in a request for a mandatory reconsideration and had asked for the request copies of the evidence that they used to make the decision. I have now received that evidence and have a further 2 weeks to add anything else or I can ask them to just go ahead and make a decision. This is what I have gleaned from the evidence that they made their decision on.

To represent the Personal Independence Interview around computer with two people sitting opposite one other
Photo by Štefan Štefančík on Unsplash

The Decision for not Granting Personal Independence Payment for my son with Asperger’s Syndrome

The first thing I would say is not to wait until you receive the decision but to ask for the notes straight away (I was advised over this but naively felt confident that he would be awarded standard rate). Secondly personally I feel that I am fighting a losing battle as the assessors clearly have no knowledge of Autistic Spectrum Condition and are basically applying that most young people don’t eat/wash/deal with finances etc – and I am just a parent that is worried and will not let go!

How to turn up to a personal independence interview ragged clothes and a walking stick
Photo by Chelsea Aaron on Unsplash

The physical seems to be a tick box too – he can physically talk, walk, wash, cook etc – anything mentally seems to be ignored: This is because it means it is deemed not significant enough: Examples are that he is not taking any medication to help with his mental health or anxiety; and does not have a guide person with him 24:7 helping him with social, communication and interaction – and never has.

The decision is made on their own assumptions: In fact the report basically says that because there is no-one helping him it suggests that the majority of the time he is indeed having no problems with social and communication. The fact that the food is not fresh/nutritious is “not considered within the scope of this activity.” Basically that cognitively he is capable of cooking. Basically they have decided on their answer and then just copied and pasted this for each section – with some having a little more twist towards the question but not all.

Evidence for Personal Independence Payment

Basically it boils down to proving it by the looks of things. No matter what it says about whether you need help but don’t get it or not that’s rubbish. My son was not awarded it based on not having hard evidence: The only evidence they used was from the PIP Questionnaire.  Unlike Disability Living Allowance they did not attempt to contact anyone to confirm my son’s difficulties from a professional point. This whole thing has adjusted my view on whether people should fight and now my answer is always yes – as you never know what is around the corner. Unsure about needing a diagnosis? Fight for one anyway. Do not think they can get an EHCP (Education Health Plan)? Fight for one anyway. NEVER let it go, because whilst you/your child may be coping right now it will be used as evidence against you later on if you didn’t try to get it!

man and woman talking over a computer screen
Photo by rawpixel.com on Unsplash

As he was unable to communicate his daily struggles and how often affects him, it went against him – but not enough to suggest that he has difficulty talking to others and expressing himself! Anything I added as his appointee was belittled and I was only referred to as his “mum.” We were not asked about the variability, triggers or treatment during the face to face consultant but they were all put as none – obviously when asked at the start you need to make these clear!

Tips for a Face to Face Consultancy Meeting for Personal Independence Plan for Autistic Spectrum Disorder

  • Make it clear not only what the symptoms are of the condition but what is the variability, the triggers and any treatments.
    • Make sure this is communicated well, whilst not being seen to be able to communicate.
  • Do not have your mother as an appointee as she will just be referred to as Mum – and we know how fussy they are!
  • Take tablets.
  • Don’t follow instructions to where you need to go.
  • Be underweight.
  • Be unclean.
  • Be ungroomed.
  • Give no eye contact.
  • Struggle to breath.
  • Be badly dressed.
  • Struggle to walk – it has no relevance to your Autistic Spectrum Condition but it is mentioned so many times on the form so MUST be important.

    dirty hands
    Photo by Ian Espinosa on Unsplash

All joking aside, I tried not to judge the guy who came in who did smell, “struggled” with his cane etc – and it was hard not to think why isn’t someone really looking after this person if things are really this bad?! He had someone with him too so not like he was just alone.

On the other hand this process has made me feel like a fraud. A scrounger trying to get money for a young man who it appears to be more than capable of living independently when there are so many others out there who aren’t. It makes me feel like he just has to try – that we are obviously doing something wrong. That I am just neurotic worrying, and fighting for support to ensure he eats, washes and has help with communication. I am not even sure it is worth trying to fight any more – never mind putting him through a tribunal.

I would be interested to know what kinds of support people who have been successful at Tribunal do receive/need to Gage whether it is worth the fight.

Thankfully Student Finance England do not agree with this decision and have awarded him his Disability Support Assist and so IS able to access help he needs to live more independently.

This Guide may be of use to anyone going through the process too: http://www.advicenow.org.uk/guides/how-win-pip-appeal

 

paper square angry face,held up in front of a brick wall

Personal Independence Payment: Asperger’s Syndrome Decision

Bastards!

paper square angry face,held up in front of a brick wall
Photo by Andre Hunter on Unsplash

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).

sink full of dirty pans
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!

jumbled up and backwards neon words that make no sense
Photo by Alisa Mulder on Unsplash

Mandatory Reconsideration for Personal Independence Payment

mother comforting upset child
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?!

Read more on why the DWP made their decision to say no

autism differences

Autistic Spectrum – 10 Things You Should Know

As someone who has experience of the Autistic Spectrum there are some things I wish you to know. I think it would be useful as a society as a whole if we were all more educated and understanding. I myself wish I knew when I first started to consider whether my son was on the Autistic Spectrum; as I remember there were some stereotypical hurdles that I had to overcome. For instance I thought that those on the spectrum could not lie, that they were honest to a fault. I am not even sure if my son knew he was lying or if in his mind it was the truth but he definitely did not tell as it was. I still remember my husband filming him swigging a toy dog around, and even when showing him the video he denied doing it! Another thing was he was taught how to give some sort of eye-contact (so again I wrongly assumed he could not be on the Autistic Spectrum). So here are ten things as a parent with a child on the autistic spectrum, and suspected Asperger’ syndrome myself that I would like you to know:

10 Things I wish you knew about the Autistic Spectrum

  1. Autism is for life – causing difficulty in the areas of social interaction, communication and the senses. This can be accompanied by repetitive and restricted interests, activities/behaviours, and problems with executive function.
  2. Those on the Autistic Spectrum may interpret the world differently to others – including not “just knowing” things that are socially acceptable or being able to read body language.

    see the world differently
    Image from Unsplash
  3. People on the Autistic Spectrum are just that people. They may behave in a way that makes some people feel uncomfortable but they do not mean to; and do have feelings too. They may not be great with social relationships but that does not mean that they do not crave them (some may not) and still require love and understanding.
  4. Autism is on a spectrum – and each and every individual is different in how autism touches their lives. But then again no two person are the same anyway – those with Autism are no different to that. Just because person X does not act the same as person Y who you know on the autistic spectrum doesn’t mean that person X is lying about being on the autistic spectrum.

    differences within the autistic spectrum
    Image Unsplash
  5. Talking of which there is no right way of talking about Autism in relation to people – some prefer if you say person with autism and others prefer autistic person; I think as long as you are not being unkind/using it as a put down it really does not matter in the grand scheme of things (particular as communication/social relationships is an area that they struggle in any way!)
  6. People on the Autism Specrtrum are not all gifted at something. Some people are, but again so are some non-autistic people. Again everyone is a gift whatever their capabilities, with or without autism. Although how their condition makes their daily life more difficult, and getting through it, is surely a gift in itself.

    autism gifted
    Photo from Unsplash
  7. Try to be accepting. You may not understand why that individual in the supermarket is flapping/making noises/chewing, etc but either way try not to judge. Think maybe about why they are doing these things – how hard it is for them to cope at that minute.
  8. Autism can happen in both males and females – it just might present itself differently.

    man and woman
    Image from Unsplash
  9. Autism is an invisible disability. Some people struggle into their adult lives before they even discover that they are on the autistic spectrum. Just because you can’t see how difficult things can be doesn’t mean that they are easy.
  10. There is no cure for Autism – and neither should there be. Understanding and acceptance is what is needed – autism does not make a person bad, judging them and treating people badly does though.

Do you agree with these 10 things? Is there anything you would have added?

PIP Aspergers Syndrome

Claiming PIP with Aspergers Syndrome

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.PIP Aspergers Syndrome

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.

aspergers bullying
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.

coffee
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.Aspergers teen driver

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.

newborn with cannula

The Sensory Seeker – In the Beginning

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.Newborn Sensory Seeker

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.baby uv treatment

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.newborn with cannula

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.

Lorax Relaxed performance

Dr.Seuss’s The Lorax Relaxed Performance

Dr.Seuss’s The Lorax is a fantastic story and what a wonderful way to experience it than with  live performance. Parents of children with special needs will understand that this isn’t always that easy so it is wonderful that more and more theatres are putting on relaxed performances to make it more of a possibility.

The Mousetrap Theatre Projects Relaxed Performance of

Dr.Seuss’s The Lorax on Sunday 5th November 2017

2:30pm

The Old Vic, London, SE1 8NB

Lorax Relaxed performance
Photo taken of the Original 2015 Company. Copyright Manuel Harlan.

About Mousetrap Theatre Project’s Relaxed Performances

Mousetrap Theatre Project’s Relaxed Performances are exceptional which I think is reflected in the fact that Dr.Seuss’s The Lorax has already sold out! The Relaxed Performances ensure that families with children with special needs receive the best support possible to make their experience as inclusive as possible. They are designed with a more relaxed environment in mind especially for those with autism, learning difficulties or other sensory and communication needs. There are less rules (like having to sit and be quiet), adjusted sound and lighting, trained volunteers and supportive staff, plus resources to help prepare for the visit. A maximum of 6 tickets per application.

Lorax Relaxed performance
Photo taken of the Original 2015 Company. Copyright Manuel Harlan.

About Dr.Seuss’s The Lorax

‘I am the Lorax. I speak for the trees!’

Lorax Relaxed performance
Photo taken of the Original 2015 Company. Copyright Manuel Harlan.

The irrepressible, big-hearted, moustachioed critter is back. Following rave reviews and an Olivier nomination for Best Entertainment and Family show. This dazzlingly funny, moving and inspiring show sees the go-getting Once-ler come face to face with the magical Lorax in a battle over the beloved truffula trees and the whole of Paradise Valley. Adapted for the stage by David Greig with music and lyrics by Charlie Fink, Dr. Seuss’s The Lorax is a brilliant riot of eye-popping colour, gorgeous puppetry and infectious music to enchant adults and children alike.
  • Ticket prices range from £2.50 for a child up to £20 for an adult.
  • This showing has a limited amount of wheelchair spaces.
  • Suitable for ages six and over.
  • Running Time (including interval) 135 minutes.

This is a sell-out show but you can still be added to the waiting list