Saying things we don’t mean ~ PDA series 

Pathological Demand Avoidance (PDA) series.



PDA is a part of the autistic spectrum that is currently not recognised as a stand-alone diagnosis in the county of Worcestershire where I live, there seems to have recently been some diagnoses given of ‘Autism with a demand avoidant profile.’ It wasn’t until I came across information on PDA from the PDA Society via my networking with other SEND bloggers that I found out about PDA and realised that we’ve been living with it every day with our eldest daughter.

As time as gone on and I’m researched more regarding PDA, I have come to realise that I too have certain traits, although as an adult they are not as recognisable as my daughter’s traits, as over time I’ve learnt how to cope and train myself to deal with everyday demands, even though I had no idea that these feelings, in fact, had a name. One of the main traits I recognised in myself was the strange feeling I get if someone tells me to do something, especially if it comes across in quite an aggressive manner or someone tells me I’ve done something wrong and I wasn’t sure of the right way to do something. I get this awkward ache feeling at the pit of my stomach, I will hold it in as I want to appear ‘normal,’ on the surface but inside I’m screaming, I’d very much like to exit the situation and run away, but I can’t. I often hold these frustrations in until I get home, usually by holding in tears and letting it out, or in fact feelings of anger. On the other hand, if there’s something that I really want to do, such as make a hot drink for my partner and I haven’t been asked, or told to so, I get a better feeling of ‘I like doing this.’ My eldest daughter, Lou, is exactly the same as this, we have to carefully word questions and instructions in insure it isn’t perceived as a ‘demand,’ such as using a statement like “arms in your coat,” in a positive tone of voice, rather than “put your coat on.” As she will usually respond to this demand by throwing the coat on the floor and a refusal to put it on.

For this first post in the PDA series I am looking at explaining why people on the autistic spectrum may say things we don’t mean to someone who has opposing views, or someone that has just ‘told us off,’ or given us a ‘direct demand.’ It is important to remember that individuals with PDA are highly anxious and the anxiety they are feeling may come out as anger, frustration or even aggression, due to the feeling of being out of control of a certain situation. For myself, I really don’t like confrontations, I don’t like raised voices and I will do all I can to avoid confrontational situations, even to the degree where I’ve agreed with things I don’t really agree with to avoid a varying and opposing point of view.

People with PDA “don’t see anything as being their responsibility. They aren’t very good at keeping secrets and they say things that are unkind without understanding the upset these words cause.” Source: http://aspergersasdconnect.blogspot.co.uk/2011/09/pathological-demand-avoidance.html

Only this week I also read the following article by ‘The Mighty’ https://themighty.com/2016/07/what-autism-meltdowns-feel-like-for-autistic-people/

Where individuals on the autistic spectrum themselves described what a ‘meltdown’ actually feels like. When I read the following statement, I could 100% relate:

“I feel all sorts of emotions all at once and I want to run away from them all. I lose sight of what is socially appropriate and start to say things I either don’t mean or something I’ve wanted to say deep down. Whenever that happens I end up hurting someone or confusing everyone.”

This keeps happening to me now, even as an adult and it is the main cause of my anxieties, particularly social anxiety, as I simply cannot remember what I’ve said to people in meltdown mode, as I haven’t even been aware until after the meltdown that it was in fact a meltdown that I’ve been experiencing! This is such a complex thing for me to understand about myself and therefore to try and get others around me to understand is one of my biggest challenges to date. The self-awareness that I now have with this has taught me to make people aware that it is best to actually ignore me if I’m starting to say horrible things, if I’m in a stressful situation or if being challenged about something, such as what I may have written on social media. Unfortunately, some people have pressed me for answers or ‘had a go’ at me after something I said when I was mid-meltdown and there is no going back, I will say stuff that may have been floating around in my head or thoughts that I have deep down but ordinarily wouldn’t say in public, but lose all sense of filter during a meltdown and it all just comes flowing out and I simply can’t stop it.

The guilt that comes after these occurrences is intense, this time last year, after occurrences where I’d said something I really didn’t mean to I would hide myself away and be too afraid to go out where I may see the people who I have ‘upset.’ The best way forward after an occurrence like this is to just forget it and carry on and not become absorbed in analysing what shouldn’t have been said as it will just take over and it becomes very difficult to get on with everyday tasks. These occurrences are just like when Lou, will come out with some hurtful words during a meltdown and as a parent, I have to just let it all go over the top of my head. I often get responses such as “you’re a really bad mummy,” “You are so stupid,” and “I think you’re a terrible mother,” which for a child of not quite 6, is quite complex. At first these sorts of statements hurt me emotionally but after researching, I now let it go over the top of my head and don’t respond as I know it will cause even more upset and cause an arguments, which is what I desperately tell other people to do even though I’m an adult, when I say things like: “please don’t keep pressuring me as I don’t want to talk about this right now,” and “Please stop as I don’t want to say anything hurtful.”

 

I do hope that this gives a bit of insight into the reasons behind this trait that can be seen by individuals with PDA, or indeed any person on the autistic spectrum experiencing a meltdown.

For more information on PDA please visit: 

https://www.pdasociety.org.uk/

I also watched an amazing webinar by Operation Diversity where Dr Jody Eaton (Clinical Psychologist) explains about PDA in children. She mentioned that often children cannot remember what they have said or done during a meltdown. This webinar can be found here: 

PDA Webinar

Thanks for reading 😊

Avonreach Academy Trust proposed change of age range ~ my response 


Last week I was given a copy of the following consultation: 

http://www.avonreach.org

This is my response to the proposals to add year groups into a few local schools and the implications it will have on my family and others who attend the same school as my children.

Avonreach Academy proposed consultation – Age Range.

Dear Sir/Madam,

I have recently been made aware of the proposals to change the structure of the Avonreach Academy schools. In particularly the 2 schools of Pershore High and Cherry Orchard First, in Pershore will have implications for my children. Both of my children, age 2 and 5, are based at the Abbey Park campus in Pershore, with one in the Pre-School and the other in the year 1 class in the first school. We moved to the Cherry Orchard area of Pershore in September 2017 to a more appropriate house for my children’s needs, my eldest child is being assessed for Autistic Spectrum Condition (ASC) and my youngest has sensory processing difficulties and Hypermobility. We were turned away from Cherry Orchard first school as there was not a place for my eldest child at the school, it has actually been a blessing that Abbey Park schools could accommodate both my children as my youngest child has started at the Pre-School on site and will remain on the same campus until she reaches the end of year 7 at Abbey Park Middle school. As a family we like the idea of the Abbey Park family of schools, both of our girls thrive on consistency and familiarity and I want them to remain on the Abbey Park campus of school as long as they can.

Children in the Cherry Orchard area of the town have traditionally attended Cherry Orchard First school and then go on to attend at Abbey Park Middle school. This 3-tier system worked for myself as I was one of 4 children that came from a small village first school (Upton Snodsbury First,) and by attending Pinvin Middle school for 3 years this helped me a great deal, I simply wouldn’t have coped moving from a primary school straight onto a high school.
As you may already be aware of the volume of new houses that are going onto the new housing developments just off Station Road and Wyre Road in Pershore, it should not be the later years (years 5 and 6,) that need to be concentrated on when these children are already catered for at Abbey Park Middle, it is clearly the younger years, like at schools such as Cherry Orchard First that need to be extended, as it is the catchment school for the new families moving into the new developments, surely a priority should be extended the earlier years from Reception to Year 4, and ensuring that new families moving in can get a place at their catchment school, rather than adding on an extra 2 classes in the later years?
There is a small section in the consultation’s ‘frequently asked questions’ regarding the extra volume of parents and children to the school. As we live in the Cherry Orchard area of Pershore, we cannot even walk the same side of the school at drop off and pick up times as cars cover the street and parents waiting for the school gates at Cherry Orchard First completely cover the path and it is impossible to get my child’s buggy down through the crowds. With adding any more children to the school this situation needs to be carefully considered as it is a real safety issue.
In summary, rather than changing what we already have, why is there not a new first school being built to accommodate all of the new families moving into the area? I am under the impression that this will also affect schools such as St Nicholas Middle in Pinvin, and St. Barnabas Middle in Drakes Broughton? Our 3-tier system works well so why bring around change that will cause so much disruption? Yes, we will be like Worcester area schools with the 2-tier system, but shouldn’t we be proud of our unique system that has worked for so many children previously?
Thank you for your time,

Miss Nicola Perrins BA (hons) EYTS. 

If anyone local to the Pershore area (Worcestershire) wishes to also share their views you can also email our local councillors: 

Harriett Baldwin: harriett.baldwin.mp@parliament.uk

Liz Tucker: ltucker@worcestershire
Thanks for reading 🙂 

Are you sure you are fit to be a mother?


Only last week I had my first experience with an internet ‘Troll,’ someone for the first time in my 18 months of blogging wrote a negative comment about my personal journey and I feel that I handled it a whole lot better than when I first started sharing our journey in March 2016.
I noticed that a relevant article to my journey to adult assessment for Autistic Spectrum Condition (ASC,) was shared via a support group I belong to called ‘Mums on the Spectrum,’ which is a group of just over 1,800 mothers who are on the autistic spectrum. This was the article shared:
www.healthy-holistic-living.com
This post was shared from a Facebook page about ‘Vegetable gardening,’ which didn’t matter to me, but when read the comments a lot of the posters were complaining about why a post about recognising autism later on in life, in women was shared on a vegetable gardening page. So, I wrote a summary about my journey with misdiagnoses and how each one could be seen as traits from someone on the autistic spectrum and I also wrote how it didn’t matter where this post is shared as it is very good for awareness and understanding. A poster was complaining about individuals who “just seek a label,” and I realised that because I belong to so many supportive networks such as my SEND bloggers group, that I forget that there are still so many people out there that just don’t understand about autism, or even want to try to understand, even in today’s society and wonderful nationwide awareness campaigns from the National Autistic Society (NAS.)
The worst comment I had written back to me was:

“You have been diagnosed with all these mental health issues and still decided to have a child? Are you sure you are fit to be a mother?”



My immediate response was to justify myself and referred to the ‘Heads Together,’ campaign that is being promoted via the Royal Family members, I wanted to get across the message that in 2017, it’s ok to talk about our mental health, not like in the 90s or early 2000’s when I just felt too ashamed to talk to anyone or admit that I had such issues, even to a GP or any other professional. Therefore, I didn’t receive the appropriate help and support. I gave this individual a reason for every one of my misdiagnoses, or in the case of anxiety and depression – a co-morbid condition that had resulted from spending years and years of ‘masking’ my difficulties in desperation to appear ‘normal’ in public. I explained that:
• In 1996, at the age of 14, I was diagnosed with Anxiety and Depression – the reason I believe that I was aware more that I was ‘different’ to my peers, I felt different and I thought differently, also reminded through constantly bullying every day at school.
• In 1999, at the age of 17, I was diagnosed with OCD (Obsessive, Compulsive Disorder,) and an eating disorder which my mum has described to me that this was in fact Anorexia, although I wasn’t aware of this at the time. As a teenager there was a pressure to be thin, but my eating issues were more down to texture, which I believe was a sensory processing issue and I’ve learnt over time that this is why I prefer dry and crunchy foods, rather than soft, sticky or soft textures of food. My 2 girls are also the same. I can remember gagging on a home-made stew because I didn’t like the texture. The OCD was down to a desire to keep things in order to have control over some aspect of my life as I felt so out of control at school, in that I felt I was being watched and picked on at every opportunity through people that didn’t understand me and would highlight my differences as if I should be ashamed of myself. At 17 I liked straight lines and absolutely every single item in my bedroom would have a specific place and if these items got moved I would know and move them straight back into place. I have also been specific since the age of 17 where my personal items are, and I will check every so often if I have my keys, purse and phone in my handbag as I have a fear of losing them. When completing my online course on ‘Understanding Autism,’ I learnt that OCD can be a co-morbid condition alongside Autism, also that I love to keep things in a routine, and if that routine changes It causes a lot of anxiety. The National Autistic Society (NAS) states that: “Obsessions, repetitive behaviour and routines can be a source of enjoyment for autistic people and a way of coping with everyday life.” Source: www.autism.org.uk
• In 2008, at the age of 26, I suffered a Psychotic Episode, one of the scariest experiences of my whole life. Mind – states that: “Psychosis (also called a psychotic episode) is when you perceive or interpret reality in a very different way from people around you. You might be said to ‘lose touch with reality.” The one thing that was very noticeable from this episode was my very high level of paranoia. This happened just after I got married, a huge event to plan, where everyone’s focus for that 1 day was on me, I was working at a high level at work, full time and living away from my parents – a 4 hour drive away. On reflection planning a wedding, on the wedding day and my level of work at that time all required a great deal of ‘masking,’ appearing on the surface as ‘Neurotypical,’ and my brain just one day said, “I’ve had enough,” cue sleepless nights and my body not agreeing with Fluoxetine and the GPs in that area not knowing my background, and not enough awareness of how females on the autistic spectrum present, another missed opportunity to be properly diagnosed. This Psychotic episode lead to the eventual diagnosis of Bi Polar disorder, which the Psychiatrist I saw back in Worcestershire when I returned home, said that it was in fact a ‘severe episode of depression,’ and not in fact Bi Polar, but to this day I still have this ‘label,’ on my medical file. When I ‘mask’ as a female on the autistic spectrum, this is very taxing on my brain and I will suddenly break down and can no longer cope or see things rationally.
• In 2015, at the age of 33, I was diagnosed with Postnatal Depression which a health visitor had failed to spot and this wasn’t picked up until 5 months after the birth of my second child when I took myself along to the GP as I knew something wasn’t right. And later, in 2016 at the age of 34, I still have a diagnosis of anxiety and depression, but more anxiety on my file. To date I honestly believe that this current diagnosis is a result of ‘masking’ my difficulties for so long and not being listened to or believed in terms of my own daughter’s autistic traits in the home environment, having 2 children with additional needs, fighting for support, attending all the appointments, etc all takes its toll on me.

With all of this swimming in my head, I hope that my upcoming adult assessment for Autistic Spectrum Condition (ASC,) will show that a diagnosis of ASC would be the answer to the struggles I’ve had from childhood, and especially from the teenage years and realisation of being ‘different.’
I therefore wanted to justify my ‘choice’ for having children and I wanted to tell the original poster that asked if I “should really be a mother?” I thought about the 1,800+ group of mothers on the autistic spectrum group where I am a member, I thought about how all of these mothers would also feel offended by this negative comment. We cannot help the way our brains are wired, and I started to think that just because Autism is often seen as an ‘Invisible’ disability, would the poster also think that people who use a wheelchair for mobility shouldn’t be parents? Would they also be in the belief that parents who are blind or deaf shouldn’t be parents? I’ve also heard of instances where friends who have children with more severe additional needs have also been told that they “shouldn’t be parents.” Who is to tell us if we are or aren’t fit to be parents? The midwife during my ‘booking in’ appointment? The first person I saw regarding the pregnancy, I was honest about my previous ‘diagnoses’ and I was monitored throughout the pregnancy but not once was I told that I “shouldn’t have this baby.” I didn’t require a specialist appointment with a psychiatrist all throughout the pregnancy. Mother’s on the autistic spectrum are very good mother’s we have the same right as ‘Neurotypicals’ people to become a parent. Not once have I had a ‘meltdown’ in front of my children, I hold it in until they are asleep. I eat well, I do order certain items but becoming a parent has helped with the OCD more as I simply don’t have the time to keep things in the same order as they once were! I don’t stim in front of my children, (stimming or self-regulatory behaviours,) I rub my hands together once they are in bed if I need to. But even if I did stim or meltdown, it wouldn’t make me a bad parent, I shouldn’t feel ashamed by being the person I am. I have had 13 years of working with early years children and why shouldn’t I have my own children? In terms of my own social anxieties, I have always been aware that I want my children to interact with others, even if I struggle socially I have still taken my daughters to toddler/stay and play groups and it’s helped me to mix with other parents.

When I found out I was going to have a child, I had no idea at that point that I could even be on the autistic spectrum and therefore my partner and I didn’t have the discussion on any implications this may have, however, I have always maintained that my children have only improved the way I am and helped me with self-realisation and accepting myself. The main aspect that I’ve learnt is how to care for others before that of myself, I had practice in this area when working in childcare, but I was very much thinking about myself before I had the children. I have learnt that their needs come before mine, I still have to look after myself in order to care for them in the best way I can, but I will now think about their needs before my own, which is a huge step for me. 

Thanks for reading 🙂 

My ‘Rainbow Brain.’

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I didn’t even realise that my brain could be described as ‘Neurodiverse’ until almost a year ago. Even though I have always felt ‘different’ even as a child.

I have a Love-Hate relationship with my ‘rainbow brain’ as I like to refer to it! Sometimes I can be sailing along quite nicely, feel OK and confident and then BANG something goes wrong and the ‘red mist’ descends, and then I ‘explode’ like a volcano!

 

The reasons why I love my rainbow brain:

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  • Because I have finally learnt to embrace my ‘differences,’ rather than being a ‘sheep’ and copying what others say or do, I had spent so long referring to myself as ‘the weird’ girl, but now I rather be myself than a clone of others, or how people ‘think’ I should be.
  • Because I have learnt to ‘find my tribe,’ I have support groups online to thank for this, belonging to a group of ‘Mums on the Spectrum,’ where you can write anything and lots of people will report, relate and advise.
  • Because I have the ability to ‘hyper-focus’ on particular topics or interests, and I find a lot of joy in this. I love photography, seeing patterns in the environment and I love my ability to focus on research and study and the buzz I get from learning. I love finding out facts and information, which is something that I have carried from my childhood.
  • Because I’m completely dedicated to my children, I never thought I could think about 2 other people more than thinking about myself, I learn through my children and they’ve taught me to adjust from self-thinking and self-being, although sometimes I still find it difficult to tap into sometimes. My rainbow brain has the ability to tap into 2 girls who also have ‘rainbow,’ or Neurodiverse brains. I feel things like they do and see things like they do, it is hard to get this across to some people but I am trying!
  • Because of my brilliant and long term memory – I see everything in pictures and memories will crop into my head with the ability to see that scenario or event as it happened, the colours, what people were wearing, etc. I can remember a lot of happy memories from when I was a child. I also visualise people’s faces.

 

The reasons why I hate my ‘rainbow brain.’

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  • Because it allows me to ‘overthink’ I’d love to have the ability to ‘under-think’ (if that’s even a word!?!) I can have a conversation one day and still be worrying that I didn’t say something right 2 weeks later!
  • Because I find some people beyond confusing, I tend to respond well to people who are straightforward and tell me exactly how it is, people who are ‘woolly’ and don’t tell me things straight are confusing! People, including family members, have taken me off their Facebook friends list, I’d like to know why, if you don’t like me or I’ve done something to upset/annoy sometime I just wish they’d tell me straight, rather than just ignoring me and remaining ‘secretive,’ I like to know where I stand! If I know I can then deal with it and move on! Rather than just obsessing over it for weeks! Cue ‘obsessive personality!’
  • Because I have an obsessive nature and that I find it very difficult to ‘let things go,’ often obsessing for days, weeks, months, even years! If I feel ‘wronged’ about something I will go on and on about it! And this usually ends in me writing a long letter or email about how wronged I feel!
  • Because I HATE to be wrong! If I get ‘told off,’ or if someone doesn’t see things from my viewpoint I tend to argue my point and then shut down to avoid any sort of confrontation and then I get what I call ‘red mist,’ where I just feel angry and find it very difficult to calm down!
  • Because I don’t forget! Sometimes I wish I could wipe certain memories as they often come back in a ‘flash-back.’ I can remember the look on the faces of people who teased or bullied me when I was a child, I often focus on a negative feature that they had and wondered why they were teasing or bullying me when no one is perfect! Like the boy with the big, googly eyes, so big and starey that they could take over his whole head, the girl who told me I was ‘fat’ and needed a bra when I was 11, yet a tin of ‘Slim Fast’ fell out of her bag, and the boy who everyone seemed to love, yet had these big flarey nostrils that could almost breathe fire! I wonder if these people grew up to be the same, making themselves feel better through making someone else so unhappy? 
  • Because I find it hard to start a task and then find it impossible to stop doing it! Sometimes I will put something off and procrastinate but when I eventually get around to doing it, then find it difficult to leave the task unfinished! I often am up past 12am as I am a night thinker, however not so great when your children get up at 5am!
  • Because my brain can make me so paranoid, my brain has needed Cognitive Behaviour Therapy (currently on a waiting list for more,) counselling and life coaching. Sometimes life is hard and tasks and events that ‘Neurotypical’ people may find not so catastrophic, I find incredibly difficult. This is why I do look back and sometimes wonder how I’ve just been ‘allowed’ to go on and make many mistakes as I’m such a poor judgement maker and often feel judged for making the wrong decision, yet nobody actually guides me and steers me the ‘right’ way. 

However difficult things can be sometimes, I cannot change my rainbow brain, I just have to embrace it and use it to its best abilities and just try and learn coping mechanisms for those negative aspects. 

We survived! (Week 1 of the school holidays) 

Feeling a bit like ‘Bear Grills’ but armed with a visual timetable and taking a lot of deep breaths! We have ‘survived’ the first week of the holidays, (or ‘winged’ it!) 

We haven’t been very blessed with the weather this week (typical start!) And we’ve had to do a lot of indoor activities as both my girls are outdoor fans! We had planned to get out for walks and the park, especially to burn off energy but sadly, struggled. 

Keeping our fingers crossed for better weather next week! 

On Monday we established some house and outdoor visit ‘House Rules,’ where I sat with Lou and she helped to come up with some rules such as “we are safe inside,” and used the example of when she launches herself  off the furniture! 


If there is screaming at the top of her lungs (there has been a fair amount this week!) We refer back to the rules which she helped to create, I find that Lou does like rules and boundaries and the fact she helped to create them has given her back some of the control that she thrives on. 

Every morning Lou has arranged her visual timetable with what is happening each day, this has reduced some of the element of uncertainty and we refer back to it if she is getting anxious about what is happening next. 


The activities we have done this week were: 

1. Sensory Dough – we added some drops of Lavender oil to the ingredients, Lavender has been used in our house in the past few weeks in the form of burning oils and room spray as it has had a calming effect on both girls, especially Lou. I realise I had run out of blue or pink colourings to make the dough purple so we added orange instead! 


2. Rainbow Cookies – Lou loves the sensory element of cooking and used her rolling and cutting skills to make the cookie shapes, they came out quite big! 


3. Free-choice craft and ‘Shopkins Shaker Maker.’ Lou loves a bit of craft, I’ve always found it calming for her and her concentration improves, she thoroughly enjoyed painting her ‘Shopkins’ figures that she made from a ‘shaker maker’ kit she had for her birthday. Lou also enjoys selecting her own craft materials from our craft box and creating something of her own choice. 

Let’s see what week 2 will bring! 

Why can’t I just feel settled?

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So the best way for me to get my frustrations and anger out as usual is to write it all in a blog post! I’m sure I’ve been very annoying lately on my personal Facebook profile as I’m continually ranting about our current housing situation! This is because I feel so wronged and I’m trying to ensure that I do the very best for my children.
Some of what I describe in this post also relates to my current assignment for my course: ‘Understanding Autism,’ as I’m learning all about the legislation that protects people who are on the Autistic Spectrum.
I want to share this experience in the hope that other people do not have to go through the same.
One of the most surprising things about me is that I just can’t settle in terms of finding appropriate housing, considering that I’m going through an assessment for Autistic Spectrum Condition and I don’t usually cope very well with too many changes, I have moved house now 17 times since the age of 18! (This does include 3 different places whilst I was at University.) I am absolutely rubbish at making decisions, I never quite know what to do for the best, and it’s even harder now I have my 2 children to think about as their safety and happiness are paramount. My own mum describes my situation as the ‘fight’ or ‘flight’ method when things start getting tricky for me to cope with.
In the most recent of house moves, I’ve moved into the nearest city to be closer to where I worked but then the house got sold so we have to find somewhere alternative, we then moved into a new build flat in a local town but this was a first floor flat with no garden so Lou really struggled to burn energy and I was struggling so much with getting 2 children and a pushchair down a flight of stairs. We then found what we thought was the perfect house in a village location, complete with village school, park and green space 5 mins walk and my parents 5 mins away via car and walking distance to the nearest town, (well it takes me 40 mins, and I’m used to this as I walk everywhere!)
We had no problems really at all for the first year of living here, until around 6 months ago the neighbouring house (that’s attached to our house) became overcrowded. A house full of adults and confrontational ones at that! People lost jobs, being in a confined space and presumably bored, they argue and swear at each other constantly. They swear, every other word, loudly in the garden, Lou is currently being assessed for Autism, if she hears new or different words or phrases, she will copy and repeat over and over. I guess I am old fashioned in my views, but I simply cannot have her going into school and repeating phrases that I didn’t hear until I started high school! They also fight, and shout in the street, a month ago a fight broke out and someone banged my door very loudly, frightened that someone would get hurt I did call the police but they seemed to be talked down as seems the case a lot of the time, sadly. As I have described before in many previous posts, my eldest daughter Lou, displays a great deal of PDA traits (Pathological Demand Avoidance) and also ADHD, her high anxiety causes her to become very frustrated and often volatile. By hearing confrontations only meters away and through our walls, this is saying to her ‘it’s ok’ to be like this, whilst myself and Lou’s daddy are doing everything in our power to keep her calm and practice relaxation techniques.
There is 0 respect and 0 consideration, these people are disrespectful to all of the families in our row of houses, they stand in their garden after 10pm at night and have very loud conversations right under the window where my 2 girls sleep, often waking them up. When you have 2 children that find it difficult to fall and stay asleep this is beyond frustrating! But my voice is a lone one, no one else seems to back me up, bar one other resident, possibly in fear of repercussions. Since we started experiencing issues with these people we’ve had 2 visitors to our house – my parents – this tells me that we are being isolated even further than we already feel, and this causes me so much stress at the moment, especially as I feel that my children can’t invite any friends to our house. Oh and I forgot to also mention the Cannabis fumes that float into our home on a daily basis so much that we cannot have our patio doors or the girls’ bedroom window open as the rooms would fill with the fumes.
Oh and one of the most difficult things for me to get my head around is that the lead tenant of the household works in a local school in an Autism base! Surely this person should realise the effects of Anti social behaviour on people on the Autistic Spectrum? You would think? I certainly would want my child going to this school! At the very least I would have thought that this person should be aware that both of my children are very wary of loud noises.
So the housing agency we rent from asked me to keep an ‘Anti-Social Behaviour’ diary, which I have done since March 2017, like I haven’t already got enough on my plate! And just in case I may be making it all up! Then cue a visit from our local housing warden, which I have to admit was the most awkward interaction that I’ve had for a very long time!
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The ‘warden’ (as I’ll refer to this person as for the purposes of this post,) proceeded to tell me that my complaint was “far too long” that I’d written about what we’ve been encountering as a family. The Warden sarcastically (I think) said that:
“By the time I’d printed off your complaint everyone else in the office had gone home.” On another day I may have found this funny, but not today when we were talking about a serious situation. So for the rest of this part of my post I will bullet point how helpful the ‘warden’ was.
(I did try and explain that I’m a blogger and writing is what I ‘do’ and that people on the ASD spectrum will often include all the details they know in fear of missing something out, that could be a vital piece of information.)
  • 60% of the conversation we had over the span of an hour was filled with jokes, everyone needs a laugh now and again, but again, for a serious matter I found it difficult to understand the warden’s jokes, and by the time my mum had explained them to me, they were far from funny! My mum (sitting in on the conversation, and glad I preempted this,) attempted to explain that “my daughter doesn’t always understand jokes.) But no – unfortunately no understanding there.
  • “I’ve had much worse” and “other people have it much worse than this.” The Warden, in an attempt to make me feel better about the situation unknowingly made it worse! By proceeding to tell me that “only last week someone tried to kill me.” And that “in other areas they have it much worse than this.” Leaving me with the feeling that I don’t really wish to stick around to allow it to get this bad! For me it is difficult to see the outer world when I’m under great stress in my little world – within my family and surroundings, it may be the case that situations are much worse in inner city areas, but we are based in a small village and I didn’t feel that my situation and feelings were taken seriously, I didn’t need to have the worry placed into my head about how worse it can get.
  • The warden referred to ‘my anxiety’ and ‘seeing things differently,’ which, yes I do, but I felt belittled in the situation that I feel very unhappy about, I don’t think any family with young children should have to put up with such anti-social behaviours, regardless of whether they have anxiety or not.
  • The warden said directly to me: “What have they done?” I referred to the 2 sides of A4, (the ASB diary,) that I’d been asked to keep, so I replied: “Here, it’s all written down.” To which the warden replied: “No, what have they done to you?” My mum had to explain that the warden meant physically, what have they done, but physically I haven’t been attacked, why should it even have to reach this point? I cannot even stand to have other people, (other than close family members,) touch me, let alone stay around long enough to let anyone physically attack me, the warden said that the only way an ASB complaint would be taken seriously was if I was physically attacked! How could the warden even put this in my head that this could happen? Making me even more fearful. So banging loudly on my door and running away and having confrontations in the street shouldn’t be taken seriously? What about intimidation? What about the mental affects? It doesn’t always need to be physical.

Now I refer to the legislation that I’m currently learning about in my ‘Understanding Autism’ course, I am very grateful I had my mum present during this meeting to act as an advocate, to aid my understanding and decipher the ‘hidden meanings’ and sarcasm that this conversation was sadly full of. After this interaction I have since learnt that:

The Autism Act 2009: “informs local authorities, what actions should be taken to meet the needs of individuals with autism living in their area.” It states that local authorities:

“should provide autism awareness training for all staff.” 

(Source: NCFE Certificate in Understanding Autism Workbook 1.)

If the warden had this awareness training then they would have known:

  • Not to fill 60% of time out of the hour with jokes.
  • Not to criticize the length of complaint given.
  • Not to state what is happening in the cases of people outside the immediate environment.
  • Not to use anxiety as an excuse for experiencing problems with the housing situation.
  • To listen and be respectful and be careful not to put extra stress onto the person via ‘hidden meanings’ in the conversation, to use clear and concise questioning.
  • Not to use sarcasm in the conversation, as it can make the person feel belittled and will shut down.
  • That people with ASD are often affected by loud noises, such as people shouting and confrontations.

 

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People with mental health difficulties, and disabilities, such as ASD/ASC experience this sort of lack of awareness and understanding everyday. I want to do my best to combat this so that other people don’t have to experience the same as what I have.

And I still don’t know what is happening with the housing situation, we have a view to move, even though we are not the ones causing all of the issues, but I will do everything in my power to keep my children safe, there is also the issue that Lou is finding sharing a bedroom with her younger sister difficult and should really have her own specified space to allow her to calm in her own environment and Moo should have her own room as her ‘safe zone,’ where she can retreat to if Lou is having a ‘sensory overload.’ The uncertainty is unnerving, but watch this space.

Chewigem Toy Remote

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Using the Chewigem toy TV remote. 

My eldest daughter, (5) has been using Chewigem products for over a year now, she has the purple Eternity necklace and light blue twister bangle (Chewellry.) She has used these products because she gets very anxious about changes to her routine and often needs reassurance, she picks away at her nails and the Chewigem Chewellry items help to keep her calm, she even takes these items into school.

“CHEWIGEM® is a UK based, chewable jewellery designed to meet the needs of those children and adults who need to chew. CHEWIGEM ® is a non toxic, stylish and effective at meeting this need.”

Source: https://www.chewigem.co.uk/our-story/

My youngest daughter (2) displayed a need to chew from a baby, she has always been an oral seeker and will get distressed if her dummy is taken away, and her item to chew removed. From the age of 18 months, she began eating inedible items such as mud, sand, chalk, stones and playdough. In June 2017 we shared our concerns with a health professional and she is now being assessed for Pica (“Pica is characterized by an appetite for substances that are largely non-nutritive.” Source: https://en.wikipedia.org/wiki/Pica_(disorder)

I was therefore keen to try an alternative item that was safe for her to display her need to chew. I wondered if my daughter would respond to the same items as her older sister with the Chewellry, however she wasn’t keen. My daughter likes to chew on our TV remote so when I discovered that Chewigem offer a Toy TV remote, whilst visiting the Chewigem stall at The Autism Show, I wanted to give this a try. The toy remote is:

“Made of the same soft, flexible non toxic, washable silicone as all our stuff. Ideal for those who will not tolerate a necklace or a bangle being worn. Robust items that can withstand moderate to aggressive chewing.” 

Source: https://www.chewigem.co.uk/product/toy-remote-chewigem/

 

We have noticed that our daughter had taken to the remote straight away and even used it as a pretend phone! So far we have also noticed a reduction in the amount of dummy use and also the amount of inedible items being put into her mouth. I recently found that you can buy an attachment that can enable the chewy remote to be fixed to a pushchair, etc.

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I would highly recommend Chewigem products to anyone.

You can order Chewigem products through Website: www.chewigem.co.uk 

You can also visit the Facebook page: https://www.facebook.com/chewigem/

 

Thanks for reading.

 

 

That magic ‘driving key’

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I grew up believing that to receive your driving licence is literally like being given a ‘magic key,’ to a different world!

I was under the impression that it was essential for everyone to hold this ‘magic key.’ At times when things get a bit tricky at home, usually after one of Lou’s violent outbursts, I get the big feeling once again of guilt, that my children aren’t getting the same experiences to other children, who’s parent’s hold that all important magic key! In reality even though kind people, who are attempting to make me feel better, have mentioned to “just get her out” in terms of avoiding the behaviours that Lou displays at home. Other people have been astonished when I mentioned that both myself and Lou’s father do not drive, “Really, so you both don’t drive?” This is becoming one of those posts where I feel that I have to ‘justify’ myself, but I’ve had to explain this so many times, and until recently I didn’t even know the true meaning as to why I find driving so difficult. or openly wish to admit it to people, as this feels like yet another failure on my part.

The bottom line is, even if I did hold this ‘magic key,’ I really don’t think I could still take both of my kids out unaccompanied! In public places, Lou experiences ‘sensory overloads,’ this means that she may likely throw herself down onto the floor (anywhere) and I have to calm her whilst also keeping an eye on a toddler who also experiences sensory difficulties in terms of noise in busy places, such as supermarkets. Then whilst all of this is going on, and there a lot of noise, people staring and tutting I then start getting very anxious and the lights are bright and then before we know it I’m having an overload and want to immediately run for the door and get out! There’s also the issue of getting to and from places, with Lou who likes to kick into the back of the car seats and poke and pinch her younger sister, I have visions of having to stop frequently along any journey to prevent her from an outburst, which would mean that safety would be compromised, not to mention that to properly concentrate I cannot cope with any noise in the car! More of this to come in a minute!!!!

I always have told people that my reason for not trying to obtain the ‘magic key,’ was due to an accident that I had with an arctic lorry when I was in a learner car when I was 17, yes this is 100% true and I am very anxious with being on the road, especially when I see lorries, however I have recently had another ‘light bulb’ moment in terms of why I find it so difficult being ‘in charge’ of a car.

  1. I’m not great with demands! (I wonder where Lou gets this from?!?) Driving is one huge demand with lots of underlying demands, with an instructor sat next to me and ‘telling me what to do,’ I often felt like saying to them: “Just shut up!” (Whoops.) This causes my brain to go blank, just like when someone gives me a maths problem to solve, my brain goes into ‘fight’ or ‘flight’ mode and will shut down and go completely blank. (Dangerous behind the wheel.)
  2. I have been experiencing a great deal of ‘visual stress,’ over the past few months, resulting in pain around my eyes and headaches, I think I do need stronger glasses and I’m attending to this, this week. However I recently found out about ‘Irlen Syndrome,’ and it was like another ‘light-bulb’ moment! I’ve been experiencing many of the symptoms of ‘Irlens’ since I was a child and have just presumed that everyone sees like this! (Whoops,) when I was 11 I complained about not being able to see the information on the new class ‘Whiteboard’ and that I could see better on the good old-fashioned ‘blackboard,’ so what they did was to move me closer to the board, which if anything, made it worse! It was, in fact, the brightness and glare of the whiteboard that I was struggling with. Looking back on every photograph taken of me outside, I am squinting and finding it very hard to see and keep my eyes open, my eyes hurt when I’m trying to concentrate in full sunlight, sometimes I find it more comfortable to even wear my sunglasses inside the house! I also turn off the lights and sit in the dark and pull curtains across to avoid the sunlight! I turn my laptop screen to dull white and my phone now has a light green, instead of the white background. If I’m in bright sunlight, especially when on a driving lesson, I will be affected more by the brightness that it would create coloured shapes that move across my vision and leave an outline of objects even after they have gone out of sight. It is difficult to judge spaces and judgment becomes generally out-of-sync. It is therefore most likely why I’ve previously described being in control of a car as ‘like someone else is controlling it, and that I go into a trance-like state.’

You can read more about ‘Irlen Syndrome’ here:

http://irlenuk.com/irlen-symptoms-overview.htm

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3. I cannot afford lessons, a car, MOT, Tax, petrol, etc!!!! Money is extremely tight, more than ever as we are ‘one-parent who works,’ household currently, whilst I am available for my 2 young children when they need me most. Any spare scrap of money goes onto essential items for the girls, such as clothing and specialist items, such as sensory toys and equipment to support their sensory seeking behaviours. It would take a lot of money to get that ‘special key,’ and I may also yet require special lenses for my glasses depending on the outcomes of assessments I’m looking at in the near future.

4. I just don’t understand!!! On the surface I may appear to understand, usually giving a polite nod, when underneath the surface it’s like I’m frantically trying to tread water! I am an visual and kinesthetic learner, I learn by seeing and doing, via trial and error, unfortunately with driving you cannot always use the trial and error method! What I should have been completely honest about when people ask me why I don’t drive is that I’m actually being assessed for an ‘Autistic Spectrum Condition,’ (ASC,) which until recently (and a change of term,) I would have been most likely described as having ‘Asperger’s Syndrome,’ and as I have written in my latest essay: “People with Asperger’s Syndrome, can speak in sentences, however their understanding of what is being said and understanding the context can be limited.” I’m pretty sure that most of my early language was either repeating phrases I’d heard (known as echolalia) and talking about my ‘special interests,’ and as I’ve come into adulthood, pieced it together a bit in the middle! In my own words, on the surface I can appear to ‘talk-the-talk,’ but actually fully understanding what I’m saying in a different ball game! So when my old driving instructor used to tell me that when doing a ‘3-point-turn,’ that I needed to look at the angle of a particular object in the mirror, I had no clue what he was actually on about!

4. Lou’s Daddy can practically drive, he has awareness of the road as he’s been riding a moped for a number of years, however, to gain his ‘magic key,’ he would have to pass his all important Theory Test, and this, at the moment would be like mission impossible as we are looking at getting him officially tested for Dyslexia. We recently accessed his medical records (which is a whole different story!) But even though we believed that he has Dyslexia, there is no ‘official’ diagnosis anywhere in his medical history (those good one 1980s again!) He has taken the theory test with the aid of headphones and someone reading the questions to him, but he’s still struggled. So between us we are a right pair!

 

Every time someone offers me a lift, I feel guilty and like I have to justify why I don’t drive, every medical appointment I have to explain how I have to get there via public transport and I cringe every time one of my girls gets an appointment and it’s not near a bus or train route! However, I do need to stop the guilt trip and remember that not absolutely everyone needs to untimely have that ‘magic key,’ as there may be varying circumstances, and I need to remember that what I can offer my children, is my time and a whole 13 years worth of activity ideas.

Thanks for reading 🙂

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Spectrum Sunday

Piece I wrote for my High School Alumni page

I recently wrote a piece for my old high school’s Alumni page on the schools website. This detailed the journey I have made since I left high school:

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Attending the ‘Autism Show’ at Birmingham NEC, June 2017. 

Pershore High School Alumi

Nicola Perrins.

I took my GCSE’s at Pershore High School in 1999. I then went on to study for a GNVQ in Health and Social Care at Pershore Sixth Form, and then onto the University of Worcester to study Primary Education with a specialism in Early Years, where I graduated in 2004, and later returned in 2010 to complete my Early Years Teacher Status (EYTS) qualification.

I have worked in the Early Years education sector for the past 13 years, including schools, nurseries, after school and holiday club provision. My first job role was working in a large Infant school in Norwich, Norfolk and my last role was based at RGS Springfield (Worcester,) at their onsite Nursery.

Since having my 2 children in 2012 and 2015 my career path has taken a slightly different route, with my love of childcare and education still at the heart. I have always been passionate about writing and In March 2016 I started a blog supporting parents who have children with additional needs. I have written posts for local newspapers and write a monthly post for a charity that supports families who have a child(ren) with disabilities. I like to use my own photography for my blog posts. I also have social media accounts that accompany the blog.

In September 2017 I became a self-employed to carry out music, movement and sensory sessions with Early Years children in the local area. My plans for the next year, before my youngest child starts school, is to take up a volunteering role at the local children’s centre, whilst completing online distance learning courses in Understanding Autism, Understanding Mental Health and Counselling. I hope to gain more experience in working with children and families.

In the future I hope to compile my own book to support parents who have children with additional needs and I also have an idea for a children’s book. I also hope to attend my first blogging conference.

300 word piece I wrote for Worcester News – ‘Mum’s World.’

I recently wrote a piece for my local newspaper on parenting children with additional needs. The passage I wrote was for a coloumn called ‘Mum’s World,’ which is lead by Siani Driver who formed the 5,550+ strong ‘Worcestershire Mum’s Network,’ group on Facebook.

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Parenting children with additional needs.
 
When I found out in April 2016 that my eldest daughter, (then aged 4,) had additional needs, I admit I was struggling, I was at a loss and felt completely hopeless. I also felt very alone. You worry about your child’s future, you worry about if you did anything to contribute in the past, you may even sometimes hear comments such as “it must be your parenting skills.” 
You can hear tuts and people stare if your child is having a ‘meltdown,’ in public.
You fight for your child to be heard and for their needs to be supported, especially if your child presents differently at school to what they do at home, where they feel most comfortable and with the people they feel most comfortable with.
 
In March 2017 I decided to start a ‘Blog’ to share my thoughts and share experiences with parents who may be going through the same thing.
 
Linking up with other parents who just ‘got it’ and joining online support groups has been my salvation, I’ve been to coffee mornings for parents to chat and also ‘meet-ups’ where the children are invited along for picnics, adventure parks and boat trips. 
 
From September 2017 I’m going to be volunteering at my local children’s centre and helping to run a local support group for the parents of children who have additional needs. 
 
When I recently noticed some ‘sensory seeking’ behaviours in my youngest child, (now 2,) I shared my concerns with our health visitor and she’s now been referred to relevant professionals, I now understand that it is best to share concerns, the earlier the better, to ensure that the appropriate support is given. 
 
I am always happy to answer any questions from other parents via my Facebook page: 
Or via my blog email: 
sensorysensitivemummy@outlook.com