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:
Pershore High School Alumi
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.
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.
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:
Whist completing my first assignment for the distance learning course I am doing on ‘Understanding Autism,’ I was reminded of the term ‘special interests,’ some may refer to this as ‘obsessions,’ but I prefer special interests.
“Autistic people often have an intense and passionate level of focus on things of interest.”
One of the saddest things I’ve ever heard was a child being told that they should stop talking about their special interest. As a person who had special interest themselves as a child, I do my best to engage with my children’s special interests.
“Parents are encouraged to support their child’s interests. While special interests may seem strange or random to outsiders, they are incredibly meaningful to the child. They provide a source of recreation, allow the child to develop competence in a certain area, provide a safe haven during times of stress which assists in avoiding meltdowns and sensory overloads, and improve self esteem.”
I wanted to sit down next to this child and say: “I’m listening, you tell me about it.”
When I recently attended ‘The Autism Show’ at the Birmgham NEC, I heard Lana Grant speak on the topic of ‘Girls with Autism,’ Lana founded the Facebook group called ‘Mums on the Spectrum,’ and has written her own book called ‘From Here to Maternity – Pregnancy and Motherhood on the Autism Spectrum.’ Lana spoke about the ‘special interests’ of Autistic girls and that these particular interests may be similar to those of a neurotypical girl, e.g. horses, dolls, princesses.
Some people refer to special interests as ‘obsessions,’ personally I prefer the term special interests, some may tend to look on special interests as a negative thing but I see them as something that makes people on the autistic spectrum happy and focused. Some people may even go on to use their knowledge and passion for their special interest as a career. For example, Alan Gardner, a garden designer who uses his passion for patterns and shapes and incorporates into his garden designs. He has a TV programme called ‘The Autistic Gardener.’
Lots of people collect things and have particular hobbies, however, my own description of a special interest is something that is difficult to stop thinking about and something that you like to talk about in great detail. Some people like to hear what you are describing and some people don’t! For me if I saw an item that I was collecting I would just have to have it and I couldn’t walk out of a shop until I had bought it, I will describe my collections in more detail later on. Sometimes, this can be difficult if you are spending a great deal of money on your special interest, such as my interest in craft materials for scrapbooking and card making, I have 100s of pounds worth of materials and I found I spend the majority of my money pre-children on these items that are now sat upstairs and hidden away in boxes as I just don’t get the time to sit and do crafting these days, with looking after 2 lively children!
I recently wrote down over 30 years of my own special interests and there has been many, some have lasted from my earliest memory from the age of 3 until the present day, I had an imaginary friend, a fairy called Tinkerbelle when I was 3 years old, I collected fairy statues and items until the present day, where I have restrained myself from buying anything else, but I have kept a few of my favourite figures on display at home and I have a hand-drawn framed Tinkerbelle from Disney Land Florida. A great deal of my special interests may have been shared by other young girls or teenage girls, but there has been more obscure ones, such as my love of smelling paper! I have always loved the smell of books and magazine, glossy magazines are my favourites, I also love the smell of libraries with all those books! I still do this today and my favourite thing to smell is the Next Directory Catalogue!! I love the smell of new things in general, especially new clothes before they have been worn, there was a time when I had a slight obsession (and it did turn into an obsession,) with buying new clothes from Primark, a cheaper range shop, but still not great for the bank balance! And in contrast these days I don’t buy clothes for myself, it is now for my 2 girls! Another special interest that spanned many years was collecting dolls, it started with Barbie and Sindy dolls, and I had 100s and then around the age of 12 I started to collect Porcelain dolls and these also went into the 100s, I had to clear some out and de-clutter once I had my children so I only have kept 4 of my favourites.
Here is my timeline of special interests spanning 30 years: (That I haven’t already discussed.)
‘Polly Pockets’ small collectable characters inside their cases for their homes. My mum kept these and Lou now plays with them when she visits my parent’s house!
From age 8 – Dolphins, watched films, collected ornaments, books, learnt facts about them.
Trolls! Ironically the original late 80s/early 90s Trolls figures – small, large, various themes and makes.
When the film ‘Jurassic Park’ first came out in 1993, I was 11 and interested to find out about why the Dinosaurs became instinct, so I researched via enclopedias and leant many dinosaur names. This is where my love of all ‘facts’ began, which carries on to the present day. I have collected many Guinness Book of Records and use Wikipeadia and Google a lot to find out things. I also have to know if I’ve seen a character from a TV programme from somewhere else and I will have to find out or it would bug me!
At around the age of 14 I started to collect stamps, I have no idea where this collection went, but I had a lot! I also became interested in collecting Fifa Football stickers for the sticker books and Match football magazines, even though I couldn’t play football, I was awful in defence! I had a season ticket for my dad’s favourite team and became interested. I still, to this day, do not understand the off-side rule!
I can’t quite remember which was my first pin badge, but I collected 100s and placed them onto 1 particular bag, when visiting somewhere for the fist time, I couldn’t leave without buying a pin badge to represent the place I had visited.
Whilst at University I discovered the book ‘Harry Potter and the Philosopher’s stone,’ I read the book to a class of year 4 children and then went and bought the book myself. I couldn’t put any of the books down and saw all the films at the cinema when they came out and I have the whole DVD collection. Lou isn’t ready to watch the first film just yet, she watched some but isn’t keen on ‘Fluffy’ the 3-headed dog!
I got into collecting precious stones after I read about ‘Crystal healing,’ I bought books and magazine subscriptions, my grandmother’s name is Ruby and this is why I named our first child also after a precious stone.
I watched the ‘Lord of the Rings,’ films, read the books, designed costumes.
I’ve loved musicals since around the age of 4/5 when my nan first introduced me to ‘The Sound of Music,’ although very quiet as a child, I liked to tape myself singing to songs from musicals such as Grease and Evita, but would be mortified if anyone else every played my tapes! I joined the school orchestra at 9 and choir at 14, also playing the flute. There is something that stirs my emotions when I hear the songs from musicals, when I first watched Les Miserables I was very emotionally overcome after hearing the songs for many years previously. My passion for music has carried on until the present day, I am calmed by classical music and I became a self employed music lesson leader for early years children in September 2016.
My most recent special interests are, programmes such as ‘Game of Thrones,’ I have watched seasons 1 to 5 through beginning to end now 6 times, and season 6 though twice. Certain amazing episodes I have watched 3 times in a row! The music, the costumes, the fantasy – dragons, Direwolves, giants, Children of the Forest, the history – something else that I’ve always been interested in. I have read extracts from the Game of Thrones Wiki and if I see a character from GOT in another programme I will immediately recognise them. I was very close to calling my 2nd child Arya, after the GOT character ‘Arya Stark,’ one of my favourite characters, she was also almost called ‘Daenerys,’ after my other favourite character! Both these being very strong and fierce female characters. My youngest daughter is actually named after the actress that plays Arya Stark!
Blogging! And writing! I have always loved writing, I found the physical formation of letters and joining up words very difficult in school, I had intervention lessons to help, It wasn’t until I went into teaching training that I actually learnt how to properly form some letters! I wrote my first book at 11 years old which is collecting dust somewhere! It was when I discovered word processing on computers that my love of writing grew even more, I could get what I wanted to write out without worrying too much about the spelling or formation of my handwriting. I used to write essays and my sixth form tutor would refer to them as ‘War and Peace,’ which I didn’t actually understanding the meaning of until a few years ago!!! I enjoy the feeling of putting pen to paper and also the sensory feedback of typing on a computer keyboard, the sound and the click! I started my blog in May 2016 and I hadn’t even heard of blogging before! I find that writing is my therapy to get things out of my head, from repeatedly swimming in my thoughts! Whether or not people read my blogs doesn’t bother me too much as it’s more like therapy for myself. So far I have written over 100 posts. I also love social media, I like to interact with people, especially like-minded, and I don’t have the anxiety of actually talking to someone face-to-face. Sometimes I can become obsessed with social media and I can also get jealous sometimes that my life isn’t as rosy as other people’s so there are times when I do have to give myself ‘time out’ from social media.
Enough about me! These are my children’s current interests:
Moo is currently 2, it’s so early to tell if she’ll develop particular special interests but I can already see that she is fascinated by shoes! She gets all of the shoes from the shoe rack every morning and tries them on, she also shows everyone we meet her shoes, and looks at the shoes that people are wearing when we are out and about. She can also tell me along the washing line which particular item of clothing belongs to which member of the family, “Daddy’s, Mummy’s….”
Moo is also into ‘Bing’ Bunny from CBeebies, she will now say ‘Bing’ loudly when she would like to watch it, and if I’m not quick enough to put it on she’ll shout “Bing, Bing!” Moo has also recently got into trains and tractors, she loves wheels. She enjoys our weekly train journeys and gets very excited when she can see the train pulling into the station!
Lou’s special interests are already more defined, I first noticed her love of water from 18 months old (even though to this day she despises having her hair washed!) She used to stand at taps and let the water run through her fingers and along her arms, she would like the feel and sensory feedback of pushing her fingers up against the taps, resulting in bathrooms flooding at her childcare setting! Lou is interested in and gets very absorbed in any sensory, or messy play experiences, textured paint, bubble mixture, even if its food and not a particular sensory activity, for example, she will tip out yogurt onto the table and move it around with her hands in circular motion and tip out jelly onto the floor and move it around with her feet! She enjoys feeling the texture of various materials with her feet.
Lou got swept away with the Frozen film phenomenon at the age of 3, books, singing the songs from the soundtrack, watching the film many times in a row, many days on end! She had the character dresses for ‘Anna’ and ‘Elsa,’ and even though her interests have moved on since, she still likes to put on her ‘Anna dress,’ and will say to Moo: “You can be Queen Elsa and I’ll be Princess Anna.” She would also only answer to her name as ‘Princess Anna’ at one point! Lou had to have absolutely EVERYTHING Frozen, dresses, T-shirts, underwear, bags, purse, pencil case, colouring books, dolls, you name it!
From the age of 4 onwards, Lou discovered ‘You Tube Kids,’ she started by watching videos of ‘Surprise Eggs,’ with someone unwrapping an egg with a mixture of toys inside, with just the crackling sound of the unwrapping, someone’s hands and a rather screechy voice! These days Lou prefers to watch videos from children performing at ‘America’s Got Talent,’ with her favourite being that of a girl singing ‘Roar’ by Katy Perry, which she watches many times in a row, every…single…day! I have noticed that Lou does pronounce certain words with an American accent. From the age of 5, and current special interests are the ‘Trolls’ movie and ‘Shopkins,’ Lou collects the small figures and enjoys lining them up and ordering them. Rather like I used to do with ‘Polly Pocket,’ figures, and indeed, the original 1980s/1990s Trolls! Lou has Trolls everything! Just like she did with the Frozen craze. She also amazes me with how she can name every ‘Shopkins’ character and there are 100s! Am I tempted to re-collect Trolls figures? Yes very, especially after I needed to de-clutter before moving house around 3 years ago and I gave my collection of 100s of Trolls figures to a charity shop and then I see them going for ridiculous amounts on eBay! Whoops! But I will live my special interests like this now through my children!
Lou has been fascinated by time, she could tell me at 3 and a half years old that it was “7 O’clock.” Lou likes the days of the week, months of the year, dates, and times, she has her own ‘wall of organisation,’ at home displays days, and daily visual timetables, as she likes to know exactly what is going on and when.
I love hearing about the ‘Special Interests,’ of others, I recently asked some fellow SEND Bloggers and people I know who gave me permission to share their special interests.
Faithmummy told me how her son, Issac (8) loves lifts and hand dryers and also Bing Bunny. He takes Bing everywhere, and I know that my Moo would love his T-Shirt! She also told me how her daughter, Naomi (also 8,) enjoys Thomas the Tank Engine.
A very good friend of mine has 2 lovely children, Jessica (9) absolutely loves Ladybirds and has since the age of 2 and a half, she also loves ‘Animal Jam’ which is an illustrated game that is partnered with National Geographic. Jessica’s brother, Harry (6) is into ‘information,’ and London, especially Big Ben.
I love reading and talking about special interests, everyone is different, we all have different interest and I like to hear about them 😊
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 !
But I just wanted to share that we had a successful trip out as a family last weekend!
I could write a whole blog post around the reasons why I don’t drive so I’ll save that for another time, but days out have to be planned with precision, I often just wish that I could have the ability to just jump into a car and whizz the kids off at any opportunity. But sadly not, we have to plan trips based around public transport and we are extremely luckily to live only a 5 minute walk from a train station.
Lou is now getting quite accustomed to using the train now, and as long as she has something to ‘fidget’ such as her ‘fidget cube,’ then she’s normally ok on journeys lasting under 30 minutes. On Saturday June 10th we visited a local animal park, the weather wasn’t too bad and the rain held off but I was surprised actually how quiet it was which was only a good thing in our case as both Lou and myself don’t cope very well with crowds of people. On previous days out Lou had become overwhelmed and then has experienced a ‘sensory overload,’ sometimes resulting in us leaving earlier than planned.
The girls enjoyed a quiet look around the animals and Lou was impressed with the parrot saying enthusiastically: “Mummy, quickly look, it’s Rio!” This was also our first proper trip to use the ‘Mountain Buggy’ for Lou and she had a perfect view!
Trips out have to be carefully planned and we have to offer a lot of choices for Lou throughout the day, due to the fact that Lou displays traits of Pathological Demand Avoidance (PDA,) she prefers to dictate to us what she wants to do and where she wants to go, knowing that she would have happily stayed in the ‘soft play’ area the whole time, and that Moo was desperate to see the animals, we had to say things such as: “Now it is seeing the animals and then it is soft play.” As long as Lou feels that she has some sort of control over decisions she’s improved in public situations since this time last year.
The girls enjoyed time sitting on machinery and Go Carts with Daddy.
And to wind down after an exciting day, we ended in the sand pit area, which fills the whole room! With Lou doing her daredevil ‘Spider Girl’ swinging moves!
Lou was understandably tired after such a busy day out and the train journey home wasn’t as straight forward as the way there!
I often end up feeling guilty that my girls don’t experience days out like some other families do, but with money restrictions and the pace that our children are learning to cope with situations, we are learning that we can only do our best. We are now planning for a similar trip once a month, until the girls are familiar with the process, sticking to places that are a direct train journey away such as Worcester or Malvern. Then hopefully further a field eventually.
Sometimes we just have to do things our own way and not worry about what other people are doing!
Thanks for reading !
**Please note that this is not a specific review of the animal park we attended, the photos are my own and we paid full ticket price to get into the park, I wanted to share the details of taking our children on days out.
For more information on the animal park we visited please visit:
I don’t have a very political brain, but I sure do have a very passionate one. I’m trying to learn more about politics and I’ve recently joined a local online Facebook politics group.
My problem is that my views are very ‘tunnel visioned’ and I struggle to understand the opposing views as I feel uncomfortable and frustrated when someone hasn’t got the same view as mine! I even struggle to debate on politics with my own Father! I will back down if views become conflicting, in the past I’ve changed my views to match those of the opposing person in order to avoid confrontations at all costs!
However, I want to explain why I won’t be voting for the ‘Blue Team’ (as Lou would describe it!) this Thursday 8th June in the 2017 General Election. The following post I wrote last year:
Explains why I stood up at the local Council Scrutiny meeting and shared my family’s story of the vital service of ‘Family Support’ delivered via Family Support workers from the Children’s Centres in Worcestershire. To recap the local Conservative government cut vital services to children’s centres in the Worcestershire area and as a result we no longer qualified for a family support worker. The local Conservative government promised that “No Children’s Centres will close,” but we found this to be untrue for cases such as the ‘Orchard Vale’ centre in Evesham, where I visited 2 weeks ago, the sign covered over with a mass of leaves, and when peeping into the window where there was once an office with smiling faces there is now no one there, the room where I took my youngest child to see her Health Visitor is no longer in use, and the room where I once took her for the baby ‘stay and play,’ which used to be full of mothers and their babies is now an empty room.
I wrote to Cllr Bayliss and he passed me onto his ‘officer’ who looked into my family’s case file without my consent and proceeded to tell me that “you’ve received your full package of support.” In the end I had to block Cllr Bayliss on Twitter as I couldn’t stand to hear any more excuses for the cuts to vital services, and his ‘but I’m ok’ general persona. When they told me that we “no longer qualified for support” my eldest child wasn’t under the Umbrella Pathway for Autism assessment, her behaviour at home wasn’t as extreme as it is now. I wasn’t under assessment for adult Autism, my youngest child, now 2 didn’t have a diagnosis or additional needs and now does and we hadn’t received the paperwork back clarifying that my partner of 7 years has moderate learning difficulties and requires literacy support. We now have triple the difficulties functioning as a family today than we did when we received family support back in 2015. But still no support. Parenting is hard in general but parenting 1 or more children with Special or Additonal Needs is the hardest thing I’ve ever done in my life, I truly believe that all families that identify as have a child or children with Additonal needs and wants support at home completely needs and deserves this support without any doubt.
I’ve recently tried to re-refer back to the family support service but still do not hold out much hope, my eldest daughter’s school are also doing all they can to help and they are also aware how vital this support is for our family.
But it’s not just us, I wanted to share our story as I know we are not the only ones in the same situation. And it’s not just the children and families service that has been cut, I recently rang adult social care and they cannot offer us any support either because my partners care needs are “not severe enough,” even though I’m supporting 2 children and an adult in the household I’m still just left to “work it out.” I’m firing on all cylinders and close to a complete shut down, yet we still don’t qualify for any help.
I really do hope that something positive comes from the general election.
All political parties have different campaign promises, but my vote will go towards one of the parties that supported the Worcestershire ‘Save Our Children’s Centres,’ campaign to the bitter end.
I’ve read a lot of articles and posts over the past year, most of which are helpful and informative, but once in a while I come across something that worries me and I have to avoid reading these type of articles to prevent further ‘overthinking.’
I recent read such as article that talked about how Mothers on the Autistic Spectrum are more likely to be accused of fabricating their child’s difficulties.
One further aspect I read about was that children’s services were known to have been investigating cases of fabricating a child’s Autism without parents having the knowledge that this was actually happening. I was so upset to read this, the day after I went into ‘shut-down’ mode, wondering if I should even carry on with Lou’s referral to the Autism assessment team. As I have mentioned in previous posts, the passion that drives me to fight for support for my daughter is to prevent her from suffering with mental health difficulties as I have. I want her to be supported in any way possible, as early as possible.
The problems we face as a family in getting certain messages across to the appropriate sources, is that Lou ‘masks’ her difficulties, except at home where she is most comfortable and with the people who she feels unconditionally love her, us – her parents. We recently discussed that only myself and Lou’s dad have seen the true extent to her anxieties, frustration and anger and full traits of Pathological Demand Avoidance (PDA.) In the past I have videoed her ‘sensory overloads’ or ‘meltdowns’ and voice recorded in hope to actually be believed that these events are happening. I hate to see my child struggle and I struggle to comprehend why anyone would want to believe that this could be ‘made-up.’ I’ve also mentioned in previous posts that even though we have a low income we are desperate for recognition and support for our child, not for financial gain, again this upset me to think that people may think this of parents. We do not qualify for DLA, and, at the moment I’m too exhausted to try again, just looking at the form gives me a huge headache! If our children need any extra equipment we’ve provided it as they’ve needed it, even if it meant we have to scrimp and save for it.
As her mother, I can sense when she is uncomfortable about something in terms of sensory issues, for example, I can tell if an item of clothing is bothering her just by knowing that I also experience irritability with seams and labels in clothing. I can also tell from a certain look on both of my children’s faces if they are about to hit out or throw something. I have tuned into their triggers and to an outsider this may not be seen.
Ironically, the day after I read the article on fabricating I received a letter from our local assessment team stating that they will be sending out a professional from their Complex Communication Needs (CCN) Team to assess Lou in school. For this I am grateful that we have been listened to, but it also puts the doubt in my mind that they will actually see Lou’s full extent of traits in this environment, I can only hope that my views as a parent, and closest person to Lou are taken into account and believed.
My next question for myself will come once we receive news if Lou will be kept on the assessment path or discharged, I hate to think of things too far before they happen, but I’ve made a mental note to myself not to appeal the decision made if it means that Lou is discharged from the service. And do I then use the pot of money that I’m continually saving for a Private Diagnosis or just leave it, but then have the worry of watching my child suffer further as the pressure continues to rise throughout school? There are so many people out there who cannot fund a private diagnosis so should why should the conventional route be this hard? Will girls who mask, and suffer in silence, such as I did as a child in the 1980s and 1990s, produce another generation of ‘Lost Girls,’ https://spectrumnews.org/features/deep-dive/the-lost-girls/
I have, until recently, held back concerns I had regarding my youngest child’s sensory issues, I believed that it would be thought that if both children were presenting with difficulties, then it must be my parenting skills, even though the sensory issues she is displaying are different to those of her sister’s, such as wanting to chew and eat inedible objects such as sand, mud, stone and chalk. We recently found out that Moo is also Hypermobile, she has been referred to Orthotics and Physiotherapy and this being found has taught me that the sooner any difficulties are identified then we can hopefully try to gain support for her. After going through the system a 2nd time, I’m now more familiar with how things work and I’m hoping that things are put into place before Moo starts school. I’ve done things differently this time around, as I’m now more familiar with the services to access. I’m now taking Moo to a ‘Stay and Play’ session at a local Special Needs school, where I can ask the advice of staff. I have also contacted our local ‘Early Years Inclusion Team,’ at our local County Council and I have chosen an Early Year’s setting that I feel is the best place for Moo and where I feel there are good links with the local Special Needs school where an ‘outreach’ service is offered for those children who are identified to require this support. They also offer ‘split placements’ where a child can attend some sessions in a mainstream setting and the rest in the Special Needs School’s own Nursery. I found the staff here to be incredibly intuitive to spotting Moo’s triggers for identifying when she is about to hit out at other children, just from the look on her face! They also taught her a technique for placing her hands onto her knees when her hands go out to hit out.
So for now I’ll just concentrate on what I’m doing, chasing up the appointments and test results and writing blog posts and updating my Facebook and Twitter blog pages and will try to put the worry of what other people think about me to the back of my mind.
Both of which explain the main features or ‘traits’ of PDA, so for PDA Action day (15/05/17) I decided to share how PDA looks in our household.
Avoiding negative phrases and ‘demands.’
The worst response I can give when my daughter, Lou (5) asks me a question is “No.” In our household saying “No” outright usually results in objects being thrown, shouting, screaming, hitting, kicking and could result in a total meltdown.
From researching PDA over the past year, I realise how important it is to think carefully about how we word every phrase for our daughter, it’s taken so long to get used to and you have be quick-thinking and very often think ‘outside the box.’ Lou has a lot of obsessions around food, she repeatedly states to us that she’s hungry, she never feels full. If Lou asks for something to eat and she’s already had plenty to eat only minutes before, we simply cannot reply “No,” nor “not now,” as I discussed previously, this will result in a great deal of anger and frustration and things get thrown! We have to use a visual chart where we point to the meal and time of day, Lou removes the snack card and we point to the next meal, e.g lunch and say: “next time we have food is lunchtime.” We use minimal language and often have to repeat the same words to aid her understanding. Not saying “No” is a very difficult thing to do! Having to think of what to say before you say it every time takes a great deal of my ‘brain energy!’
Lou will avoid any demand put onto her, getting her dressed in the mornings often takes both myself and her Daddy, we cannot simply say “get dressed,” as the answer will always be “no,” or she will shout replies back such as: “No you silly Poo,” or “you’re a really silly woman,” she has even told me: “You’re an awful Mother,” (I have no idea where she’s heard this phrase!) It took me a while to get used to these ‘come-backs,’ but I do have to let these ‘outbursts’ go over the top of my head to avoid ‘fuelling her fire’ even more. We have to use choices for absolutely everything:
“Trousers or T-Shirt” this often still results in “No, I’m not getting dressed today,” when we have to give the choice of:
“You do it or Mummy/Daddy do it.”
It can often take over 30 mins for Lou to be fully dressed as she also likes to run around the house to see if we can catch her to get dressed!
This is also the same when it comes to tidying up, we have to give a lot of praise when Lou does tidy up and in the last month I can only remember this happening once, we’ve modelling tidying, but the demand of doing it is just too much for Lou to cope with. We use visuals and ‘Sign-a-Long’ for ‘tidying,’ and other daily routines. These sometimes work with Lou, but also sometimes don’t! We also have to be careful with wording and giving praise as Lou doesn’t cope very well with actually receiving praise, will not know how to handle it and often do something like throw all of the toys around the room in response.
Lou struggles with sudden or unexpected changes to her routine, even as an adult I am exactly the same! We recently had to leave our holiday 3 days early as Lou had got chicken pox, we had to get the train home 3 days early and we’d planned to take both girls to a theme park for the day, we had previously prepared Lou for this day out with talking through it and visuals of what would happen. When we had to tell her that she couldn’t go to the theme park as she had chicken pox it was like a volcano had erupted! Lou shouted all the way walking to the train station, “adventure park Mummy,” and repeated it and then would say things such as “this place is stupid,” “silly train, silly place.” She also refused to move and sat on the pavement in the middle of the town, in protest! This made me so disappointed for Lou, and the change in the plans had set me off and therefore Lou’s Daddy had to deal with us both all the way to the train station! It took both myself and Lou a good hour or so to finally calm down and adapt to the changes.
I find it confusing as to how Lou cannot process demands yet she places a lot of demands onto myself as her mother and main care giver, and also her dad. She will say things like “get my snack now,” “I said get me it NOW.” I found this difficult to cope with at first but after reading up on PDA I realise that:
“People with Pathological Demand Avoidance (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.”
I hadn’t pieced together that the anger and frustration I see in Lou is actually all down to anxiety and this manifests more when she doesn’t feel in control of situations.
There are so many more things I could say about PDA, I’m still learning more every day. It’s exhausting and I feel it’s quite catastrophic, but what we have to do is take positive steps to ensure that our daughter is helped to cope in the best way possible.
My hope is that PDA does become more widely recognised as I hear so many different experiences where PDA is recognised in certain counties in the UK and yet in others professionals refuse to recognise it.
PDA certainly does exist, and we live it everyday! Brilliant sources of information on PDA:
This post was written last year, I’ve added some details for Maternal Mental Health Awareness.
Anxiety has been with me since I can remember, I started biting my nails at 3 years old and can clearly remember points in my childhood where I feel most stressed about certain things, down to even my first days at starting a new school, even the smells and sounds I experienced and how nervous it made me feel. I have always tried to be everyone’s friend to keep everyone happy and to avoid disagreements and confrontations, but over the years this has become increasingly harder to do, since I’ve had children I’ve had to become braver to say what I think and really feel, especially if its related to their safety or best interests.
The real me is very hard to get along with! I’ve had, for the first time in my life, had experiences in the past year where people have clearly expressed that they don’t like me, or what I believe in and this has been very difficult for me to accept, for the first time in my life I have been called “nasty.” My anxiety is made worse by the thought that people are talking about me behind my back and making disapproving comments. I wish I just simply didn’t care! I often find that people do not openly ask me about why I choose to do certain actions, often ending in them making the wrong assumptions and not receiving the clear picture. I’ve always described myself as a ‘pushover’ and if someone said “jump” I’d say “how high?!” I have always been easy to influence and manipulate. I’d go along with things and agree, even if deep down, I didn’t truly feel that it was necessarily a good thing to do. And these weren’t only small decisions, I’m talking about extremely important, life changing decisions. For the first time in my life I’ve had to make decisions without outside influences and therefore if these decisions turn out to be the wrong ones, I only have myself to blame!
Since my second child was born in March 2015, my anxiety heightened, I was recovering from a caesarean section and living in a first floor flat at the time, I struggled to get down the stairs to the flat with a newborn in a car seat and a very lively 3-year-old who frequently ran off. Plus my eldest daughter felt deep jealously towards her new baby sister even before she was born. I was dealing with a lot of emotions after having a new baby and sleep-less nights again and at the same time battling for my daughter’s additional needs to be recognised. I was encouraged to go and seek advice from my GP in April 2015 and it took until August to actually find the time to go and see the GP on my own. I was then placed on medication to help with the anxiety.
I’m always saying that I feel that I should be able to cope better with my daughter’s additional needs, especially the behaviour she displays, there are plenty of parents out there who are coping far better, but this is me, and unfortunately, I do have a lower coping threshold than some. I am often saying that “this is me, I simply cannot change who I am” unfortunately I can’t wave a magic wand and make myself cope with things better.
I have been so grateful to recently talk to someone else, that for the first time in my life, that feels the same as I do. It was a massive relief to talk to someone who can understand what I’m going through.
With my current anxiety demons to fight, I want to explain why anxiety isn’t my friend!
Anxiety you’re not my friend…
– You make me worry about absolutely everything, even the smallest things.
– You make my chest tight and I feel so helpless and it’s difficult to make things better.
– You make me paranoid, that people are dissing me behind my back.
– You make me over-think and over-analyse everything and everything!
– You make me focus on one thing and it’s difficult for me to think about anything else.
– You make me worry about going into public places, especially if someone is there that doesn’t like me!
– You make me on edge and my daughter plays on that as she’s so hypersensitive to my mood.
– You make me sick of the sound of my own voice.
– You make me question my every action.
– You make me feel that I always get things wrong,
– You even make me feel like I’m a bad mum.
– Sometimes you make me feel claustrophobic in my own home, other times you make me feel like I can’t even go out and even the school runs a struggle.
Anxiety, you’ve been there throughout most of my life…
To this day you are still ‘hanging around’
… you’re definitely not my friend!
… there is a light at the end of the tunnel,
If I talk about it and don’t bottle it up!
This time last year my GP referred me to the ‘Worcestershire Healthy Minds.’
“Worcestershire Healthy Minds supports people, aged 16 and over, who are experiencing problems such as stress, anxiety, low mood and depression.”
Here I completed a questionnaire and then a follow-up phone call where I was matched with the appropriate service to help support the issues at that time.
Recently I have used the online service for self-referral to this service, where it may be reading support guides, counselling or Cognitive Behaviour Therapy (CBT.) It helps to talk to someone who isn’t involved with the family or the situation.
There was once a time where I didn’t discuss these type of things, I felt ashamed and alone and that I was at fault. I have come to realise, especially over the last year, that it’s necessary to talk about mental health and to #endthestigma
Thanks for reading 🙂
My eldest daughter was born in the spring of 2012, I had a fairly normal pregnancy and was still able to work full time with children, the job that I’d done for 8 years. We were excited as first time parents, and moved into a new family house complete with a nursery and a whole heap of equipment, toys and clothes ready for the babies’ arrival. I had prepared myself for a natural birth, being a naturally anxious person for the whole of my life, I found the technique of ‘Hypnobirthing’ very beneficial by reading the books and listening to the CDs.
At 4am my water’s broke, I was calm and collected and I took everything in my stride. But then there was a problem, panic set in after building myself up to stay calm, I called my local hospital’s maternity triage department and I was told to “come straight here.” When arriving at the hospital there wasn’t too much of a panic and my labour was induced. This was a slow process and I was monitored very closely as the midwives were concerned about the baby’s heart rate, I was told that she had “Meconium in her waters.” After several pain killing methods I started to feel like this experience wasn’t happening to me, it was like I was on the celling, looking down on someone who was going through it all. I remember a yellow piece of paper and the words: “We need to deliver this baby right now,” then all I remember is the lights of the corridor as I was transported into surgery. My baby’s heart rate had reached a dangerously low level.
I don’t remember a lot else at this point, except trying not to cry with the relief that she was here safely, and the relief that I felt once she let out that all important first cry! I struggled to contain my laughter when the surgeon urged me not to cry as he was completing the stiches after the C-Section, and as he said “Whoa Mamma” it made me chuckle and I moved more! I tried to contain a mixture of happy tears and laughter due to the situation. After the drama died down I was left looking very swollen from all of the painkillers and various drugs from the operation, I found the nights horrendous as I was in so much pain and the ward was very noisy at night, as I was used to sleeping in silence at home! I remember getting very upset and uncontrollably crying on the second night as I’d asked for assistance to help change my baby’s nappy and help didn’t surface for hours, once someone did arrive I got it in the neck and was ‘told off’ because the nappy had been left too long! All I could do was to protest was that I had been asking for help for a number of hours but nobody came, needless to say I was extremely relieved the next day when I was allowed to take her home to the comfort of our own house. I found that she would settle to sleep better if she was swaddled tightly in a blanket.
Just 2 week’s under 3 years since the birth of my first child, my second daughter was born. I did have it always in my mind regarding the trauma of my first birth, I had a lot of motoring and scans the second time around as I had a anterior and low lying placenta. When I was given the option of trying for a natural birth with a low-lying placenta I thought back again to the trauma from the first time, I decided that I simply couldn’t go through another emergency caesarean if it got to that point and re-live the experience again and therefore I opted for a planned caesarean the 2nd time around. Which was a very straightforward and very well planned procedure and I found that my recovery time was better the second time around as I did know what to expect in terms of the length of recovery time and what I could and couldn’t do.