This is me at 8 years old, in my last year of ‘First School,’ the sports day experience I had 27 years ago I can remember vividly like it was only yesterday, this was the start of all sports days to come and I’ve never forgotten it.
On Wednesday I read a post from FaithmummyWhat happened when a child refused to have my autistic daughter in her team which is a brilliant post written by Miriam Gwynne, who is also a member of a group of SEND Bloggers than I belong to. Reading this about Miriam’s daughter having to prep for her sports day, took me right back to how I felt on days like Sports Days whilst at school. I dreaded those times when it came to team games and picking team captains and team members, I struggled with co-ordination, I found any physical activity very difficult and I towered above my peers, at age 8 I was in age 11-12 clothing. I was the girl that nobody wanted in their team.
Not every child likes Sports Day, in fact, I hated every minute!
I hated the pressure of demands, “do this, do that, stand here, go and stop.” I hated team games, the hype and passing a ball to other team members and other kids getting angry if I wasn’t quick enough or dropped the ball.
All those people watching, I hated drawing attention to myself and being ‘on show,’ I hated the noise of the crowds of spectators shouting “come on,” the metallic sound of the crowd, all their voices merging into one that noise that makes my ear vibrate and travels through the whole of my body, it feels like it’s bouncing off my bones, thinking to myself: “Please make the noise stop! I just want to go home.” When I dared to look into the crowd all I could see was a sea of eyes, staring and watching.
I was desperate not to be last, desperate not to be laughed at, and even more attention being drawn. In the sack race because I was so tall, my sack reached below my knees, when everyone else’s came above their waists, so of course I came last, I sat and I cried and cried I couldn’t stop, someone said “what are you crying for?”
I copy and mimic what other people say, I even caught myself saying this to my child the other day:
“It’s not about the winning it’s about the taking part.”
I stopped myself as I suddenly thought, what would my 8-year-old self have thought?
“It’s not even about the taking part, what if I don’t even want to take part?”
“I’d rather be reading a book like Matilda or any other Roald Dahl.”
So this year I won’t worry if my big girly finds it all too much to even take part, it goes back to trying to fit us ‘square pegs’ into those ’round holes.’
And please don’t pressure me into taking part in the all important ‘mums race!” That’s a whole other story !
‘Children who ‘mask’ or ‘camouflage’ their Autism.’
So much of this article relates to both my own and now my eldest child, Lou (5.) I was so grateful to my friend for sharing this as I’ve recently had ‘writers block,’ and whilst reading it sparked a whole blog post in my head!
Here’s our experiences of ‘masking.’
Lou is now showing more signs of frustration via a refusal to do ‘work’ at school, on the whole she ‘complies’ and doesn’t display the ‘overloads’ or ‘meltdowns’ that we experience at home on a daily basis. It may be difficult for professionals to guage how a child can ‘switch’ it on and off and change so much and understand fully how a child can be so ‘Jekyll’ and ‘Hyde,’ but I’ve had first hand experience as I did exactly the same as a child, I can’t really remember even speaking at school, I followed the rules in fear of being ‘told off,’ and drawn attention to, I held in the frustrations and anger I felt all day, instead of punching the boy who called me names all day, I’d save it all up and then ‘explode’ at home. I was actually quite horrible to my mum particularly (so sorry mum!) The exact same thing that Lou does with me now! I would take it all out on my mum as she was the closest person to me. I could be winging away at her whilst walking down the street and if we turned a corner and saw someone else (someone we knew, or a stranger,) I’d immediately stop in fear (I think) of being rejected or thought of in a bad way. In fact, I still do this now, but it’s now directed at my partner, the person that I now ‘offload’ to the most, and no one else really gets to see that side of me. I have no idea why I do this, my brain just tells me to and it’s puzzling to me even at the age of 34!
The quote from the article: ‘Children who ‘mask’ or ‘camouflage’ their Autism.’ About grown women in social situations rings so true to me:
“I walk into the room and feel like people are looking at me.”
I also relate so much to the section that talks about when:
“Friendships become much more complex.”
“What is said is not always meant, girls talk behind each other’s backs and make nasty and sarcastic remarks.”
“For a girl on the spectrum, this is unbelievably difficult to negotiate.”
I can remember being around 13/14 years old (a time where I was struggling with eating,) and the girls who I was friends with at the time were messing around trying to trip each other up, one of them said towards me: “don’t trip her up, she’ll snap in half,” a comment that has resonated with me my whole life, some people may have laughed it off, and just forgotten about it, for a girl on the spectrum, this simply isn’t forgotten.
I recently spoke about friendships during my adult ASC assessment, friendships for me have always been tricky, never really feeling like I ‘fit in,’ it’s only today that I’ve finally learnt what true, and respectful friendship means. I stuck to one particular friend for the majority of my school life, to feel safe, I literally didn’t know who else to go to and I feared so much that I’d end up with no friends at all and just end up on my own. The result of this was years of going along with someone who did and said things that I really didn’t agree with, but couldn’t speak out in fear of confrontation. If this person told me to do something, I literally did it, I was a puppet on their string. I watched this ‘friend’ sneak make-up in their bag/coat in shops without paying, and as a strict follower of rules I’d find this so wrong and I’d then panic incase it was thought that I was doing the same. This person was rude to people and aggressive, everything opposite to me, there were so many ‘awkward’ moments I lost count! As I got into adulthood I came across other people who were connected to this friend and they all talked behind each other’s backs, their main topic of conversation was to ‘slag’ each other off, I got so confused around who I could actually trust and I became extremely stressed and just felt so uncomfortable around these people. In the end a confrontation occurred and I was called ‘nasty’ I’d never fallen out with anyone in my life, I became so stressed that I had to cease all contact to avoid having a complete breakdown. So in fact, masking the fact that you get on with people, when you really don’t does lead to mental health difficulties. In reflection these sorts of friendships were ‘toxic,’ I feel liberated and so much better for finally ‘breaking free’ of someone who I’ve come to realise, that I was actually quite scared of.
“So many parents report of not being believed or being accused of poor parenting when in fact they are trying the best for their children.”
This has been the case for us now for over 3 years, as our child, on the whole, complies in an educational setting, how can we get professionals to realise that under the surface, she really is struggling and letting it all out in her safe, home environment?
I have spoken to parents who have been accused of fabricating their child’s difficulties, and this makes me so upset as why would anyone actively want to make this up? I’ve even had the term ‘attachment disorder’ thrown at me as many other parents have. I’ve said this over and over again in many of my posts but all we want for our daughter is help and support, and I’m so passionate about this as I’m a prime example of what happens if girls on the spectrum slip through the net, and the result has been years and years of being misunderstood and various mental health difficulties, particularly from my teenager years onwards and it’s been heightened at times of great stress, such as relationship breakdowns. I do not want this for my child.
“The long term risks of not helping these children and young people are significant and real and many will go on to have relationship difficulties, problems holding down a job and significant mental health problems in adulthood.”
So after having my initial adult ASD assessment on 13th April 2017 and it going to a panel to review, I had the feedback letter through the post today.
On the day I filled out questionnaires whilst in the waiting room and then had a 1 hour and 15 minute discussion based on my answers.
Firstly the report went through a lot about what I had discussed on the day in terms of my childhood, how I am socially and certain ‘traits’ such as ability to handle changes, collections of items and sensory difficulties. Many of these aspects I had included in the paperwork that I’d sent in to the practice because I knew that I was likely to freeze on the spot when being questioned directly. What this meant is that I was questioned and guided by what I had aleady shared before the day of the assessment.
The main thing from this feedback report was reading the results of the ‘Adult Autism Quotient (AQ) questionnaire,’ which measures behaviours, feelings and experiences associated with potential ‘Autistic Spectrum Conditions.’ Individuals with ASC typically score 32 or higher and I scored 47.
I then read that:
“The AQ is a screening tool and does not provide enough information for you to be given a diagnosis, but a score of more than 32, then taken alongside the information discussed, suggests that further assessment of an ASC diagnosis is warranted at this stage.”
These are the recommendations given in the report:
One thing I have noticed is that the term ASC is now being used, when I originally received my referral letter it stated it was a referral for an adult assessment for ‘Asperger’s Syndrome. ‘ Since I began blogging in March 2016, I’ve used the term ‘Autisitc Spectrum Disorder’ (ASD) and reading this on a report does make me question if I’m now using the ‘correct’ terms!
I’m fully expecting the journey to a possible diagnosis to take a while longer, I felt happy and sad yet again at the same time, but again a great sense of relief, all those years of doubting myself, questioning who I was, telling myself I was ‘different’ was for a huge reason and to be on the path to having this clarified for me is so liberating.
It is sad though, that my process for adult assessment is so much more straightforward than my own daughter’s, since January ’17 I’ve not really known what is going on in term of Lou’s assessment, no word of any assessments happening in school, no information. And to think that without understanding and researching regarding my own child, I’d have never have found out about myself.
My advice to anyone wondering about themselves being on the spectrum is that it’s never too late, try the AQ questionnaire and take it to your GP.
I will now wait for my next appointment and continue to share my journey 🙂
It was only a few months ago that I even heard the following terms:
After researching I found that the terms ‘Neurotypical’ and ‘Neurodiverse’ originated in the 1990s, but somehow, like other things had passed me by!
These terms are often referred to when people are talking about Autism, or Autism Spectrum Disorders (ASD) or as some like to refer: Autistic Spectrum Conditions (ASC.) However the terms also refer to:
“ADHD/ADD, dyslexia, bipolarity and other neurotypes as a natural human variation.”
I therefore decided to create the ‘Celebrate Neurodiversity’ logo using the Neurodiversity infinity symbol. I am happy that this symbol displays rainbow colours, as it represents the spectrum of ASD and diversity, as I definitely know that no people with Autism are the same. And we are also big fans of rainbows in our house, and what they represent – after the rain, there is sun and then a rainbow 🙂 It celebrates the positives of our diversity, what some people may view as a tragedy, I see as a celebration of:
A “neurological diversity as inherently pathological, instead asserting that neurological differences should be recognized and respected as a social category on a par with gender, ethnicity, sexual orientation, or disability status.”
“view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure.”
I don’t agree that Autism is ’caused’ by vaccines, or bad parenting, I do not believe that my daughter will “grow out of it” and I know this because at 34 I’ve never grown out of it, just learned how to cope and how to accept myself for who I am. I also don’t believe that being an “anxious mum,” makes any difference! My anxiety is only made worse by people who don’t believe what I am trying to get across!
A fellow SEND blogger wrote a post for the Firefly Community about all of the things that parents have been told about their children, it’s very opening and I can relate to many of them, sadly.
“The “acceptance perspective” endorsed by the movement is a view that autism is not a disorder, but a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome.Advocates of this perspective believe that autism is a unique way of being that should be validated, supported and appreciated rather than shunned, discriminated against or eliminated. They believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated.”
We want to celebrate our Neurodiverse family, even though there are many challenges, we are all about the positives 🙂
I have noticed her sensory seeking since the age of 18 months, she has SPD (Sensory Processing Disorder) and Hypermobility, and currently being assessed under the ‘Umbrella Pathway’ which is the ASD assessment for the area where we live. Lou also displays traits of ADHD and PDA (Pathological Demand Avoidance,) although I do wonder if the ADHD traits we see are all part of her SPD Sensory seeking, but her Paediatrician has said that they will assess her for ADHD when she is 6, so a year to wait! I have no idea how long the ASD assessment process will take, someone told me approximately 2 years! But we shall see! It is more difficult in Lou’s case as she ‘masks’ her difficulties at school, bottles up her frustrations and sensory overloads all day, and then ‘explodes’ like a shaken up bottle of pop once she reaches home. I am hearing more examples of how Lou is struggling more now the pressure has upped in her first year at school, she thrives on routine, but likes to do things on her own terms, so the free-flow system that Early Years classrooms allow, do suit her best. I do wonder how she will cope with the challenges of a year 1 classroom and SATS eventually! Lou is showing more anxieties now, she requires ‘fiddle toys’ to concentrate, and she’s been picking at her nails which require medical treatment.
Lou has had genetic bloods taken and in August 2016, we were told that she has a genetic anomaly of “unknown significance.” In October 2016 both myself and Lou’s daddy also had genetic bloods to check if this anomaly is genetic or unique to Lou, the bloods were sent away to Birmingham and we’re still waiting for the results.
Lou is funny, she likes to make people laugh, she is fantastic with numbers and her writing is coming along, she is the master of ‘messy play’ and sensory seeking! Her memory is fantastic and loves learning facts, her current favourite TV programme is called ‘Do you know’ (CBeebies) where children can find out about how things are made and how things work. She has a huge special interest in ‘Shopkins’ and the ‘Trolls’ from the movie.
Moo is still so young, I’ve been noticing some sensory issues and seeking with her for a few months now but I’ve been worried about sharing them as I had such a negative experience with Lou, in terms of my parenting skills being blamed for her difficulties. However, I’ve now contacted the same health professional that knows all about Lou’s history as I am aware that the earlier the support is put into place the better.
Lou went to our local hospital’s children’s clinic this week and it was found that she is hyper mobile just like her sister. We have been noticing since she starting walking at 15 months, that she walks with a slight bend to her legs and her left foot turns in and she is tripping over frequently. She has now been referred to Orthotics.
Moo is already such an oral seeker, she wants to chew on items constantly, she gets very distressed when she cannot have access to something to chew, she will put items such as mud, sand, stones, crayons, and Play Dough into her mouth to chew on. We have to ensure that Lou’s Lego and beloved ‘Shopkins’ are put out of reach! She also likes to wear her coat and often hat indoors for hours, she thrives on constant contact, especially to me – which is the opposite to her sister! One of the most recent signs I’ve noticed is that Moo will place her hands over her ears when the hairdryer or Hoover are turned on and we recently went to the supermarket and she heard a high pitch beeping sound and got distressed and held her hands over her ears also. If her older sister is screaming, Moo will shake and literally climbs up my leg for comfort.
Moo is also naturally funny, she is very loving and thrives on cuddles, she will place my hand onto her tummy to squeeze her for comfort, her speech is coming on a treat and we adore her curly red hair! She definitely is a girl who knows what she wants! Moo loves ‘Bing’ Bunny from CBeebies, Teletubbies and is a huge fan of ‘Mr Tumble,’ she is now using a few Makaton signs from watching.
Mummy (34) is the one who sat in a talk on Autism in September 2016 and thought “that’s me!” I used to feel ashamed of my differences, I always knew I wasn’t the same as most people around me, but I never quite knew why! I would describe myself now as ‘quirky’ but for most of my childhood and teenage years, thought myself weird and strange. I have masked my difficulties for my whole life and suddenly thought “I’m exhausted, I can’t do this anymore” so I went to my GP and now I have my Adult Assessment for Asperger’s in April 2017. I’ve been given so many different labels over the years so having a diagnosis would finally give me the release of all those questions over all those years!
My biggest struggle at the moment is socially, I go through patches where I thrive and organise and arrange so much as I feel able to, then after as the pressure ups, or if I take on too much, I then withdraw and find it hard to cope in social situations and worry that people will find me odd and strange. I still have ‘sensory overloads’ especially in public and have to hold it all in in fear of embarrassment, if supermarkets are busy, loud and lights are bright and I feel closed in, I will forget what I’m in there for and head for the nearest exit! I am also still claustrophobic, if I can’t see a clear entrance or exit in a building I will panic, especially if someone is blocking my path and talking at me! Sensory overloads result in what look like ‘panic attacks’ for me these days and I usually save them up until I get home and explode! Just like Lou!
For Autism Awareness The National Autistic Society have realised the following video: Make it Stop
It is such a good insight into how you feel if you are experiencing a sensory overload.
Self confidence I’ve always struggled with so it’s difficult for me to explain what I’m good at! But here goes! I thrive on craft and art work, I love to express myself through creativity and writing, I can’t always express my feelings out loud but I can write it all down! I love my children and before they were born I struggled to understand how to have empathy for others, they have taught me so much ! I love being around children, I’ve always identified with children who have additional needs as I now have trained myself to think about how they may be feeling, especially if they have sensory issues, e.g if I see a child is distressed and cannot see why I will always think beyond and ask “is a label scratching you?” Some people may describe my methods as too empathic as I’ve heard so many times “your too soft” or “your wrapping them up in cotton wool,” but I challenge these people to put themselves in my head and see what I see and feel what I feel in terms of sensory issues, it has a huge effect on daily functioning! I do not see children as ‘naughty’ I’ve always identified that all behaviour has a reason and you just need to think ‘out of the box’ and not try to force children to conform! I know that not everyone will agree with me and I often clash with people! I like to help other people, something that I’ve also taught myself over time and enjoy doing 🙂
Daddy was educated in a SEN school in Somerset, in today’s terms (not the awful 1980s,) he would have been described as having GDD (Global Developmental Delay,) Learning Difficulties and severe Dyslexia. He was seen by many professionals and also had to wear supports for walking until past the age of 5. Professionals believed that he would never be able to lead an independent life, but he has been able to secure employment and now has a family of his own.
Daddy teaches the girls all the practical stuff, it takes Mummy hours to put together a flat pack bread bin ! Daddy is the practical thinker, yet mummy looks too much behind the theory of stuff! Lou loves rough and tumble play so daddy is the best for this! Mummy hates it! Daddy makes us laugh so much!
Not everyone understands our Neurodiverse family, I’m not unaware that people talk about us and comment on us, people may even joke about us 😦
But we have to just concentrate on the 4 of us and try to block out any negative views or negativity, we are very lucky to have some lovely, supportive friends and family 🙂
We are trying out absolute best, we can’t do anymore than that ~ everybody deserves to be happy !
Thanks for reading 🙂
I just thought I’d also add a fantastic piece of writing I’ve found this week from Faithmummy :
There are sometimes when I feel like I would like to lift my brain out and gladly have it replaced with another…
I’m completely guilty of thinking I can take on the world when I’m having good run in terms of feeling confident, however when the pressure starts to pile up my brain simply cannot take it and I feel like it’s a volcano about to erupt. This is how I think that my own Lou feels when she experiences meltdowns or ‘Sensory Overloads’ we have brains that can only really process 1 or 2 things at a time and it will explode if too overloaded or pressured.
A huge rule in my household is that we don’t shout, we want to be calm in front of Lou, to provide a calming environment and model relaxation techniques to help her cope with her brain overloads, when it all just gets too much…
…But this morning I forgot this, this morning I was feeling pressured, I was worried about Moo who isn’t well at the moment and because my children are my priority I am behind in terms of my paperwork, if I don’t have a plan I get confused, I stumble and I waffle it’s like Lou would feel without her visual timetable, Moo was screaming as she wasn’t really wanting to go out into the cold when not well, and I didn’t really want to take her out but Lou needed to get to school. Whilst refusing to put on her school shoes, get her coat on and have her hair tied up I realised that Lou had a load of toothpaste at the bottom of her trouser legs of all places, so with the screaming and refusing still going on and now the dampening on the trousers, something clicked in my head, I forgot to stay calm, I forgot to not give Lou direct demands, and I lost it 😦 I shouted 😦
My ‘head was red’ as Lou would call it.
Enough is enough…
… something needs to give, I need to except that I am a mummy first and foremost, my 2 young and lively children need their Mummy to be on top form, they don’t need a nervous, paranoid and anxious mess. They don’t need a Mummy who finds it necessary to clean the house everyday as she believes that it is too messy, which is clearly a coping mechanism, that I have control over something and this is diverting my stress out.
They need and they want a Mummy that plays with them and doesn’t feel that she should always be doing something else.
Today Mummy took a step back and said enough is enough, because in order to be strong for my 2 children, I need to look after myself…
This is an idea of why my brain currently feels like too much is going on…
~ Lou’s ‘Umberella Pathway’ assessment process has begun – an assessment for ASD.
~ It’s parents evening tonight – lots of listening for me that I find difficult to take it, worrying that everything is ok with Lou.
~ Paperwork for my music sessions and battling an anxiety of ‘performing’ in front of a crowd of people.’ (This didn’t effect me 6 months ago.)
~ Ongoing pain in my back – since July 2016, to which I’ve now said that I need to seek advice from a private Physio, a constant worry that it will effect my future job prospects.
~ My own adult assessment – being referred back in December ’16 and not hearing anything since.
~ Tiles keep falling off my bathroom wall and the agency I pay rent to don’t seem bothered ! My oven won’t work due to it tripping the electrics every time it is turned on!
~ A constant worry that I’ve upset someone, I’ve said/done something wrong in a social situation, I’ve offended anyone, a wish that I could read people but my brain is wired in such a way that I find people and social situations hard to read.
~ A battle inside my head everyday in terms of Lou, for example, she coped ever so well during a recent birthday party, (I’m so pleased she enjoyed it,) apart from a sudden unexpected sound of bubble wrapping popping, but soon recovered. So I sit there thinking, “she’s fine,” maybe we’ll see a change, yet once reaching home she had a huge meltdown, as she’d obviously held in her overloads during the party.
For the time being I’m going to be a Mummy and carry on blogging when my girls are tucked up in bed, I cannot lose my blog, it is my therapy where I write so that thoughts and worries no longer bounce around in my head, people will either read these posts or not, they may help someone or not, but I will carry on doing them as blogging doesn’t make me stressed 🙂
To some people, these things that are going on in my brain may see trivial, some may say “she’s got nothing to stress about,” but as my mum has always told me: “You are you, you are not other people, and other people cope with things differently.”
Part of my problem is that I find it difficult to cope with a lot going on and have such a low ability to cope with pain, and stress, which I think is something to do with me being such a highly sensitive individual, I am learning to tell myself that every single person has a different level of coping and trying to tell myself not to be afraid of admitting that I’m struggling…
… I simply cannot pretend or mask to be someone I’m not…
… I cannot help the way my brain is wired no matter how much I pretend, or practice or copy others.
I first heard the word ‘Autism’ whilst I was studying for my 3-year teaching degree. Autism was referred to during my lectures on SEN and the SEN Code of Practice 2001 (as it was then known as back in 2001.)
I then completed a few courses run by the county council such as ‘Autism in the Early Years.’ I worked in a school in Norwich where there were a few pupils with ASD, just referred to as ‘Autism’ back in 2004. I must admit my initial thoughts about Autism were limited to people who find eye-contact difficult and those that seem to be ‘in their own world.’ How wrong I was, I had no idea that the ‘Spectrum’ was so wide and varied, util i started researching Sensory Processing Disorder (SPD) and Autistic Spectrum Disorders (ASD) in terms of gaining information about my own child and starting my blog in March 2016.
Some questions were raised myself, after watching a documentary on ‘Girls with Autism’ http://www.itv.com/presscentre/press-releases/girls-autism a documentary shown on ITV in July 2015, based at Limpsfield Grange in Surrey. Which is the only state run boarding school in Britain specialising in girls with Autism. During this documentary it was highlighted that in some teenage girls, diagnoses such as Anorexia, Depression and particularly Bi Polar, have been given and not Autism. This hit home for me, remembering the time that my mum took me to my GP and said “please help, my daughter won’t eat,” after I only ate minimal food such as cucumber and gagged on the majority of my food, at the age of 14. I have often been told that I am anxious and/or depressed, In 2009 a doctor in Norwich labelled me as ‘Bi Polar,’ but I’ve always had serious doubts that this is the case.
It wasn’t until I attended a talk led by ‘Autism West Midlands’ in September 2016, that I had a ‘light-bulb’ moment. As we discussed various traits and issues experienced by other parents I sat there thinking, that sounds just like me! When discussing that some children simply cannot tell when they are full and have no idea when they are full, I thought “that’s me.” This also applied when talking about masking at school and building up sensory overloads all day at school, and then finally releasing like a volcano erupting once reaching home. I was a huge conformist as a child and a teenager, I can remember only ever having 2 detentions in my whole school life! I am, and was scared of authority, I used to get upset if other children were shouted at in class.
After the Autism talk I decided to look into the pro’s and con’s of going to ask my GP about the possibility of an adult assessment for ASD, in particular Asperger’s Syndrome, but I’m currently unsure if this can still be referred to?
I realised that I had taught myself how to deal with a lot of my traits as I’d grown into adulthood and that I am functioning fairly ‘OK’ these days, so I wasn’t looking for any sort of support in terms of strategies, although I’m always open to suggestions! Some of the things I have taught myself over time are:
Understanding jokes and sense of humour – although I still don’t always get some jokes!
How to gain and keep eye contact – this didn’t happen until I was around 18 and got my first job in customer service.
How to understand non-verbal cues in conversations, e.g. winks, yawns (if someone is bored!) etc.
How to hold a conversation that isn’t entirely one-sided! Sometimes I literally have verbal diarrhea – If I’m talking about something that I enjoy, or that I’m passionate about I forget to allow the person I’m talking to to respond or have their own say, so I’m now more aware of how conversations should go!
To know that not everyone has to be ‘my friend.’ I spent a great number of years trying to please everyone, I have been known to change my point of view to one that I know that the other person would agree with, if only to diffuse a situation and to avoid a disagreement or argument as I really am uncomfortable with any sort of confrontation. As a result I have often been ‘walked all over’ and have been a easy target to manipulate. It is only in the past year that I have said to myself ‘enough is enough’ and have stood up several times for what I truly believe in. I think becoming a mother has played a huge part in this!
Relationships ! This has always been a sore subject! Well until now! I’ve always struggled to find people that actually ‘get me.’ I was often called weird and it was difficult for past partners to live with my ‘quirks!’ I think this explains why I have struggled to commit long term in the past and also struggled to trust. Once I found someone who understands me it was very different, very difficult to live with at times, but I am not as impulsive as I was in my 20’s!
Saying things I don’t mean and speaking without thinking first, I don’t have a filter for the majority of time! If a though pops into my head it literally comes straight out! This results in me often wallowing for hours after a conversation wondering about why I said what I did and if the other person in the conversation was offended by what I said! Saying the wrong thing and people looking at me when I talk are the reasons that I didn’t talk very much as a child at school, I was labelled throughout my school life as ‘painfully shy.’ In fact, I knew most of the answers to questions in class I was just desperate not to be noticed or attention drawn to me, I like to fade into the background and would have loved an ‘Invisibility Cloak!’
Knowing that I am functioning in terms of running a household and caring for 2 young children, I had to think about the possible advantages of an adult ASD assessment:
I would hopefully be given answers to questions that I’ve had about myself my whole life, to confirm or dismiss any previous diagnoses.
Not a great deal would change, I would still have my home, my 2 children and partner of 6 years. I have also been able to hold down a job since I was 16 and I’ve worked in Childcare and Education for 13 years with only having around 6 week’s off work sick. I would also hope that my friends would understand me and that I haven’t changed, friends are precious to me as I find it so difficult to make and keep them!
I would hope that it may support future job roles, as I do hope to eventually work with children with additional needs, especially those with ASD, and Sensory Processing Difficulties as I can put myself in their place, I kind of know how they may be feeling, and If they are getting upset about something, it can be something as simple as a label in their clothes that has been making them feel uncomfortable all day.
I also had my doubts:
Would people treat me any differently? Think of me as only trying to gain money from a diagnosis, when it’s the same for my daughter, we don’t qualify and it is not the reason behind it – the reason is helping to accept myself and move on.
Would it affect my career? I’m worried that some may think that a diagnosis would effect my ability to do my job, but as stated above I have been doing it for 13 years, my paperwork is meticulous and I could never do any other job as it’s all I’ve ever known!
As I have dispelled my own doubts, I went to my GP after scoring myself with an online Asperger’s test where I scored 48 out of 50. I sent this test prior to my GP appointment and from there I was referred straight on for an adult ASD assessment. This was in October 2016 and I’m fully aware that this is going to be a long process and I’m prepared for the wait. I have spent many appointments with my daughter where I have explained in great detail how she feels, and have been often questioned:
“How do you know how she feels?”
My reply has always been:
“Because I feel the same.”
This is especially prominent in terms of sensory sensitivities such as itchy jumpers and labels in clothes!
What I hope to say in future appointment is:
“Because I am an adult who has ASD.”
I have taken a while to write this post, I felt ashamed at first, I wrote a poem and had it shared anonymously, very kindly by Kelly at ‘Its a Tink Thing.‘ Here is the poem I wrote;
“Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Gould.
Source: theguardian.com 26/12/16.
I’m literally had no idea about my traits until I started looking into Sensory Processing Disorder, and I was invited to the talk on Autism by our previous Family Support Worker, this article states that there are other people who have the same experiences. I am currently in limbo as to whether I continue the fight for Lou or give up as I often left to feel like I am ‘making it all up,’ ‘fabricating’ or ‘exaggerating.’ My parenting has been blamed many a time for the behaviours that our daughter displays at home, I’m often left to ask people around me if they believe me, my poor mother has been asked this so may times, but as I have dedicated 12 months to building my Blog, Facebook and Twitter to my daughter’s story how could I simply be making this up?
For now, I’m taking each day at a time and seeing where it takes us.
One thing is for sure, I’ve learnt that I am who I am and I cannot change who i am and that I should be accepting of myself and proud of what I have and what I have achieved in my 34 years on this planet!
I would be completely lost without online support groups, there are support groups for people who are experiencing the same and it helps so much to talk to people that completely ‘get’ what I am saying. I have to also thank Autism West Midlands and The National Autistic Society for their wonderful websites, which have given me so much support and information.
If anyone is interested below is a link to my notes that I hope to take to my initial ASD assessment appointment. I welcome any feedback in terms of other adults who already have an ASD diagnosis to see what they think about my traits.
The amount that has happened in 2016 is incredible, I feel empowered to write this post as we have only a few weeks left of this year. I have also decided to give myself some time off over the Christmas season so now feels like the time to round everything up!
There have been many ups and many downs to this year ~ the most significant thing that I feel I did this year was to start this Blog in March 2016. It has literally changed my life and opened up so many opportunities for me. It almost has it’s own persona now, I feel like my Blog holds such a significance to who I now am. I’ve never been very good at expressing my true feelings or saying how I really feel about something, now my Blog is a huge tool for how I express myself, it is a form of therapy for me to get all of the thoughts and feelings onto something that is out of my head!
In addition to writing Blog posts, I also keep on top of Facebook pages, Twitter and Instagram accounts for ‘Sensory Sensitive Mummy.’
I’m forever saying this, but parenting is the biggest challenge of my life to date, especially to a child who has additional needs, my Blog has been a platform for me to research and share our story in such a way that other people have responded, this has resulted in me knowing that we are not alone in this, it is incredible how many other parents there are out there who are experiencing exactly the same as we are, this has given me much comfort.
Things that have also happened this year:
I became self-employed! I used knowledge that I’ve have gained from working in the Early Years to create ‘Sensory Mummy Music’ incorporating Music, Movement and Sensory Experiences. I absolutely love being able to go into 2 different Early Years Settings and do these sessions, it helps so much to stay connected with the Early Years settings, it makes me feel less worried about missing out while my children are still young. I am unable to return to part time work until Moo is at Pre school so this type of work suits me well. This has also allowed me to build my confidence, which was low after having my second child.
I finally accepted that ‘this is me,’ ‘this is who I am’ and that I shouldn’t have to pretend to be someone I’m really not just to please other people. In the past I have tended to act differently in front of different groups of people. At school I had 2 very different friendship groups, keeping up a pretense is absolutely exhausting! At the same time as starting my Blog, I also created a brand new Facebook account, with only really people I do class as true ‘friends.’ We’ve had a lot of emotional upset in our little family this year, some very important truths came to light, facts were not believed by others, either this or a complete denial to accept truths that didn’t want to be listened to. I’ve had to protect my children and with having a daughter like Lou, who is extremely impressionable, we’ve had to restrict her from interacting with certain people to protect her. Having to agree with a certain type of individual for a very long time had taken its toll on me and I had to block a great deal of negativity in order to function as a mummy for my children, which is my ultimate priority. Not long ago I was referred for some adult testing – more details I do hope I have the confidence to share in 2017.
Lou started school!
She has done incredibly well in her first ever term of school, she settled really well after a lot of worrying on my part!
She also took part in her first school Nativity, she lead the Wise Men from one end of the Abbey to the other and looked very proud about it!
This was such an achievement for our girl as she has previously struggled with sensory overloads in buildings such as churches.
I have been able to spend time at home with Moo as well as keeping my brain active via the Blog and music sessions. When Lou was the same age (21 months,) I was working full time.
One thing that has recently come to light was knowing my own limits. I have always been known for ‘doing too much,’ I sort of struggle to know how much is too much. I have recently taken on quite a few roles as I was feeling confident. What I do forget is when the pressure mounts up, especially at a time of year like Christmas. I know that I’m struggling when my brain feels like it’s about to explode and I become snappy. my parents are now experts are recognising when I’m doing too much and will remind me so that I can take stock and evaluate the current situation.
Going into 2017:
My Blog HAS to stay! It is my therapy and I’d be completely and utterly lost without it!
My business will remain – I love working with the children – after a few year’s practice I feel that the planning and delivering of these sessions are like second nature and I don’t tend to feel stressed at all!
I like to still feel connected with Early Years Settings even though I’m not officially working in a setting. I will continue to run my Facebook group ‘Worcestershire Early Years Professionals.’ And continue with my role as Committee Secretary to a local Early Years setting.
I recently wrote a post titled: ‘Feeling Lost’ after Lou was discharged from Occupational Therapy and Family Support, due to recent Children’s Centre funding cuts. Due to this, only last week, I almost entirely gave up my fight for Lou, I was beyond frustrated. I often think of looking after Lou’s needs as a full time job in itself: Attending appointments, chasing appointments and reports, making visual supports for our home, researching activities for Lou’s ‘Sensory Diet’ and carrying out activities that support her Gross Motor development and calming activities, etc. Especially during school holidays, any remaining energy I have to focus my remaining energy on her.
It happens once in a while where I think I’m Superwoman! Adding in quite a few other roles, but I’m already doing more than enough, and to stay on top on my game – especially in terms of supporting Lou, It’s essential that I rein it in and say to myself: “I’m doing too much at this time.”
I’m not ‘Superhuman’ I simply cannot doing it all…
In April 2010, I started my Early Years Professional Status (EYPS) this is now known as EYTS. I was glad to come across the EYTO (Early Years Teacher Organisation) website and I joined as a member, (annual membership is free at the moment.) I was happy to share my EYTS jorney so far which will be displayed on the EYTO’s blog on their website.
Where I studied:
The qualification I gained in June 2010 was then named EYPS (Early Years Professional Status.) I was made aware of this training by the owner of the nursery where I was working as a Baby Room Leader. I completed the training at the University of Worcester, where I had also graduated from in 2004, (BA (hons) Primary Education.)
What inspired me to complete your EYP Training:
I was leading 3 nursery nurses in the baby room and I found it rewarding to help guide them in their professional development, this started from completing their staff appraisals. This helped me to gain confidence in my role as room leader.
My daily role now:
Until July 2014 I was working with 2 and 3 year olds, planning and implementing activities in a nursery attached to an Independent school, also working in the after-school care provision and Holiday Club. In March 2015 my 2nd child was born and I decided to stay at home with her, my eldest child was diagnosed with Sensory Processing Disorder (SPD) in October 2015, and therefore this was an extremely busy time! I am currently the committee Secretary at the Early Years setting in the village where we live, I also run weekly music, movement and sensory sessions with 0 to 4-year-olds at the setting, as I became self-employed to run these sessions in September 2016. I also offer a Messy Play experience once a month. By attending this setting I have learnt how to use an online Early Years Observation and Assessment tool, and I keep up with any new Early Years news, changes in policies and legislation.
Projects I have implemented or working on:
I started my blog ‘Sensory Sensitive Mummy,’ in March 2016, initially to share our journey with having a child with additional needs, this has provided a variety of opportunities such as helping to campaign for our local Worcestershire Children’s Centres due to recent funding cuts. This has led to me recently being approached to run a ‘Stay-and-Play’ session at my local children’s centre, where I hope to offer messy play and music and movement sessions. I am also developing my business website to be able to pitch to other local settings with the aim of delivering more sessions. My blog now offers activity ideas, such as craft and sensory activities for the school holidays. I am also able to share my love for photography via the blog, and I write monthly posts for the charity Family Fund, who support children with additional needs and their families, with some of the topics being Challenging Behaviour, Leisure Activities, People who support, etc.
My next CPD plans are:
To expand my music and sensory sessions into the local area to run more weekly sessions, in local settings such as Pre-Schools, Nurseries, Toddler groups, and Schools.
To continue to develop my website for my music and sensory sessions, sharing more of what we do in the sessions.
I do hope to return to work at an Early Year’s setting once my youngest child starts school as I do miss the atmosphere of the classroom. I then hope to continue to further my professional development via any course that is appropriate.
I usually prefer to write about Lou’s journey, not my own.
But on days like today I remember back to 2008/9 when I had, what I now describe as my ‘tricky time.’ I prefer to write all of my memories from this time to my online books. I’ve always carried a feeling of being ashamed of suffering a nervous breakdown, but what I’ve learnt over time is that it happened and I’m here to tell the story and therefore:
“My story isn’t over yet!”
(Source: Slogan from Semi-Colon project.)
I was homesick, 3 hours from where I grew up, I hadn’t really branched out to make a lot of new friends outside of where I worked as I didn’t feel that many people ‘got’ me. I had a bad reaction to some anti depressants and it all went a bit down hill from there. I remember feeling so very scared because I didn’t feel in control of my own body and I couldn’t trust anyone around me due to the paranoia I was feeling at that time. I have this tremendous pang of guilty because people did get hurt at this time, lives were changed down to me but it’s not like I chose for the black cloud to descend on me 😦
I could have stayed feeling guilty forever, I could have let it consume me, but I now take the approach that:
“Everything happens for a reason.”
And I wouldn’t be on the path I am today if these events hadn’t happened. I had to go through a tremendously rubbish path to enable me to learn about myself and become the strong person that I am today.
This event in my life sparked some (still mainly) unanswered questions about myself, as a child and also an an adult. I suffered brain trauma at birth, could this have any effects on my mental health? (Another topic for my ongoing research,) although no one is to ‘blame’ all I can do is learn about myself and how I can go about to ensure I can function. I have questions about:
– Bi Polar? A huge question mark as I no longer have ‘high’ episodes, more on an even keel.
– Highly Sensitive Person (HSP.) As suggested by a great counsellor I saw.
– Sensory Processing Difficulties – in particular, a ‘sensory avoider.’
I could sit and ponder on these things all day but…
…What I have got are 2 beautiful children and a partner that understands me, for me, like no other person has (except my mum!) Ever! I’m now back, where I feel that I belong, back where I grew up and in familiar terratory. With people close by that would spot straight away if I didn’t seem right. My issues have only meant that I’ve ever had a few weeks away from working, I’ve been able to do a job that I so desperately love, that allows me to forget about my worries, for over 12 years. One of my biggest worries is that my issues would stop my future career prospects as my fear was that people would ‘think’ that I wasn’t suitable to work with children, but it has never stopped me, it’s one of the elements where I tell myself “keep going, your good at it!” When I run my music sessions currently, and I see the children are smiling and enjoying themselves I think to myself “this is what I was born to do.”
I do worry that I could have future ‘occurance’ but I desperately try not to dwell on it, I worry that my daughter will suffer the same worries as a teenager and throughout stressful times in life. But I can be the one who can spot her troubles and get the appropriate help if needed.
Mental illness needs to be talked about, for years it felt like my ‘dirty secret’ I was so worried and moulded on other people’s impressions of me. What are people with a mental illness supposed to act like? Do people expect me to have a massive meltdown in the middle of a public place?! Do people expect me to sit and cry all day? In fact I find it very difficult to cry, I have only cried twice in the past month!
We need to talk to other people who are going through, or have been through the same experiences, I have a few friends and my sister who I could be completely honest with about how I’m feeling and can talk openly about my experiences, I recently chatted to one friend for 3 hours about how we perceive the world and people in public, and realised that it’s not just me who thinks a certain way! Which was a massive relief for me! I’ve only had one experience so far, of sharing my problems, (regarding a view I have on a particularly sensitive subject,) where this person really couldn’t understand me, and later referred to me as “ungrateful” amd “selfish,” (needless-to-say, I no longer associate with this person!)
One of my biggest hurdles was plucking up the courage to tell my GP how I was really feeling, the GP’s can only really help if you open up, something that I’ve learnt over time. I was so worried about being dismissed or being told that I was “making it all up.” But thankfully, this has never happened. If I have a problem I write it down and hand it to my GP, for me, I am the sort of person who finds it easier to write things down, rather than to make eye contact on a particular sensitive topic. If you, or anyone you know, are feeling that you need to talk to your GP, my advice would be to write it all down and post or take it in personally.
Today I have lots of reasons to smile, I have 2 beautiful children and a home where I feel stable and I’ve recently become self employed for a role where I feel so much achievement and job satisfaction. We also have some amazing friends and family.
Yes I still have my bad days but I feel that I’ve come a long way from that ‘painfully shy’ child who hated to be told to “smile.”
If anyone would like to find out more please visit:
There are also some very good closed support groups online – it’s very reassuring to talk to people who have been through the same experiences.
Happy world Smile Day 🙂
(I do use a lot of smiley faces in my Blog posts!)