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:
‘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.”
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.
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 🙂
I’ve lost my motivation lately, with so much going on like the Easter holidays, going away and then coming back 3 days early due to Lou having Chicken Pox! And now wondering if and when Moo will get them!
I’m struggling to find my next direction, Moo is going to take a bit longer than I first thought to settle into an early years setting and we’ve had a lot going on lately in terms of her being referred to the Paediatrician for her sensory issues and finding out that she too has Hypermobility and has been referred for Orthotic supports. I want to work for me, to get the old me back and give me a focus, but I have had to accept that my children, especially Moo, need me at home at the moment and then there’s the results of my initial Adult ASD assessment still to come and I’m confused as to whether I should return to the only career I’ve known for 13 years or try a new direction! In an ideal world I’d love to use the skills in researching, writing, blogging and social media that I’ve developed over the last year but finding it a struggle to find anything relevant.
Today (23/04/17) I was inspired by a friend who ran the London Marathon to raise funds for Acorns Children’s Hospice, who have helped her family a great deal. I got emotional watching the coverage to think about what an amazing achievement it is to do something like this. I was also delighted to hear that this year’s charity of the year for the London Marathon was ‘Heads Together,’ a charity that was founded by the Duke and Dutchess of Cambridge and Prince Harry.
Their aim is to end the stigma attached to mental health, which is something that I’m so pleased about. For many years I felt ashamed of having anxiety and depression, I didn’t openly talk about and try to hide how I was feeling, even from those closest to me. Even today I sometimes find that if I openly talk about mental health issues that people still tend to change the subject and I can tell (after years of teaching myself,) that this isn’t something that the person is comfortable talking about.
This week I watched a BBC programme called ‘Mind over Marathon,’ and it reliterated to me that there are so many benefits of exercise for mental health issues, exercise is also one of the most effective ways to improve your mental health.
“Regular exercise can have a profoundly positive impact on depression, anxiety, ADHD, and more. It also relieves stress, improves memory, helps you sleep better, and boosts overall mood.”
I’ve been struggling with my weight since 2009, when I had a severe bout of depression and ever since I took a certain sort of medication I’ve been struggling, after never going above a size 14 before the age of 27.
Since July ’16 I have been struggling with back pain and I’ve recently had physio sessions as it was found that my pelvis had been out of line since having Moo in March 2015. I found it difficult to walk and therefore difficult to do any sort of exercise, I also struggle to find the time or money for gym sessions due to having 2 young children at home. I recently explained during my initial assessment for ASD that I often felt ‘silly’ doing exercise, this is probably due to being laughed at as a child, I was tall, un-coordinated and clumsy, I didn’t like looking silly or drawing attention to myself and therefore I’d avoid situations that didn’t make me feel comfortable. As an adult I haven’t stepped foot in a gym since my last experience where a gym member commented to the gym instructor: “you’ve got your work cut of there,” implying about myself which really hurt me and I never went back.
I’m very much in the “I don’t care what people think” mode at the moment so I decided to download a walking app on my phone and I took a picture of how I currently look as a motivational tool, (as I hate having my photo taken!)
We’re lucky to live in a village in the countryside where there are plenty of public right-of-way paths, so I set out after my girls were in bed and it was lucky that it was a lovely sunny evening.
When you have sights such as these it’s a fantastic motivation:
So I’m planning to try and get a walk in every evening now it’s lighter and keeping a track of my time so I can try and beat this the next day!
I felt so motivated when I returned home after my walk and I’m hoping that it does eventually turn into a bit of a run! I don’t think I’ll be running the London Marathon any time soon, but I do hope to try and be involved with some sort of sponsored event next year.
When I heard that the April theme for the Family Fund blog was ‘Happiness’ I was delighted as I really feel
that we’ve turned a corner in our household recently, it has been a year since my daughter, Lou, (5) was
diagnosed with Sensory Processing Disorder (SPD) and Hypermobility, and she is currently at the start of an
ASD assessment. When we first received the diagnosis, it was a tendency to look at what my daughter
can’t do. Gradually over the past year I have learned to ‘tune-in’ to my daughter’s interests and in turn, it has helped us as a family to really focus on what makes her happy, and learning to embrace her strengths,
and there are so many!
Via researching SPD I learnt the difference between ‘sensory seeking’ and ‘sensory avoiding.’ I soon
realised that Lou, on-the-whole, is a huge sensory seeker and does avoid in some circumstances, e.g. she dislikes sudden, unexpected and loud noises. Lou is constantly seeking sensory input which can make her appear ‘hyperactive,’ and has an inability to sit still. But via offering a ‘Sensory Diet’ at home, it allows Lou to get her daily sensory stimuli and we do notice improvements in terms of her
concentration and attention if her sensory seeking needs are met. (I have written a separate post about a ‘Sensory Diet’) here:
From my own experience in working with Early Years children I picked up many ideas of the sort of
materials and equipment for messy play, along with many ideas. I soon found that Lou thrived on this kind of activity so I went with this. From the age of 18 months she enjoyed the feel of running water into her hands, and if I put out a tray with sand and washing-up liquid in to make ‘Soapy Foam,’ she will usually
tip out the mixture onto the floor and explore the textures with her hands and her feet.
Play dough is a huge favourite with Lou, especially when we make home-made sensory dough that has
essences added such as vanilla, or dough that has been mixed with glitter or herbs and spices, Lavender was a huge favourite. Lou tends to ask for play dough every day, especially after school, she will hum to
herself whilst she’s squeezing and manipulating the dough, which I’ve come to realise is a sign of ‘self- regulation’ and that she’s receiving the sensory input that she has been seeking. Any activities that involve
paint do not stay on the brush as she absolutely loves to cover her whole hands in the paint and slide her hands across the paper, or table!
Sensory toys and equipment
We have created a specific sensory area for Lou, which she has named her ‘calm zone.’ The sensory toys
and equipment have a very calming effect on her, this includes:
• Bubble tube, rainbow projector, stars and moon projector,
• Coloured gel-droppers,
• Light-up sensory balls,
• Home-made sensory bottles that we filled and then sealed that can be shaken,
Vibrating neck massager
• ‘Treasure basket’ with everyday objects that includes a variety of textures,
• Musical instruments,
• A ‘Peanut’ ball, like a Yoga ball that is peanut shaped,
• ‘fidget’ toys such as a giant ‘Tangle.’
• Soft toys and books, soft rug and blankets,
• Fairy lights.
Lou has free access to this area throughout the day and our hope is to help her recognise when she
needs to take herself off to the area to self-regulate before she gets to the point of a ‘sensory overload.’
There is also other sensory equipment that we have found helps to calm Lou, and in turn makes her
happy, this includes our most recent addition of a ‘Weighted blanket,’ that includes a pattern of her favourite character – ‘Princess Poppy’ (From the Trolls movie.) Lou has loved deep pressure since she
was a newborn and only settled if she was swaddled. The deep pressure helps to calm her if she’s anxious
or has had a ‘sensory overload,’ sometimes she will just like the comfort of the feel and weight of the blanket.
Lou has always been a huge lover of ‘White Noise,’ when she was a baby I had to download a ‘White
Noise’ app onto my mobile phone, with the sounds of a Hairdryer or Hoover, sometimes she prefers the
feel of the warm air coming from the Hoover, and not so keen on the noise, and therefore puts her ear
Lou is a huge outdoors girl! She gets so much out of being in the garden or out at the park, she gets so
much from the ‘Forest School’ sessions that her Pre-School provided and that her current school provides
once a week. Lou is calmer and happier outdoors, this environment provides her with so much sensory
seeking input and stimuli, she makes a bee-line at our local park for the ‘Pendulum Swing,’ and likes to spin
and hold her head back to gain sensory input. She is happiest when covered in mud, the messier the
better, and is happy to climb and jump off equipment, she really has no fear!
‘Special Interests’ make Lou happy.
Lou has certain interests that engage and motivate her and make her very happy. At the moment, she
loves to collect ‘Shopkins’ figures, she knows all of their names and arranges them into groups, she can tell
people facts about the various characters. Lou will watch ‘Toy Reviews’ on the tablet and then do her
own toy review with her own toys! Even putting on an American accent and saying “Hey guys, today we’re
reviewing…” Lou tends to have a film that she is interested in and will watch the same film over and
over and then will change and repeat with another film, she started watching the film ‘Rio,’ then moved
onto ‘Frozen,’ and now the ‘Trolls’ movie. Currently we are all about the Trolls, she has the movie, the
soundtrack, T-Shirts, Pyjamas, sticker books, plastic figures, watch, pencils, you name it, she has it! I recently tried to play Lou some classical music to help calm her, but this didn’t work, until I played the
Trolls main theme tune, and she quickly calmed down after a sensory overload! I have sometimes experienced times when children are stopped from talking about their special interests but I find from experience, that it is important to embrace children’s special interests as you can really reach them on their own level.
In the past few months Lou’s love for Lego has developed, she now has several Lego sets and I realised recently that she gets so much from putting the Lego bricks together as the ‘click’ in itself gives sensory feedback.
Lining things up and numbers make Amber happy.
This is something that we’ve recently noticed, lining up the smaller characters that Lou collects, especially toys, but also items like household coasters, bathroom products and foam floor mats. This process we have found helps Lou to self-regulate, especially after a busy day at school. Lining up allows her to gain back some control, she likes to see objects and toys all in line, neat and tidy and this makes her feel happy. Lou is also a huge numbers fan, she can recognise 2-digit numbers now on sight, especially the numbers of the stickers for her Trolls sticker book! Lou also thrives in mathematical activities that include shape and repeating patterns.
I know that there are so many challenges to having a child with additional needs, we still have some really challenging days, but around a year ago I felt completely lost, until I started looking at the many positives that my child has, rather than focusing on what she cannot do, and learnt to embrace these positives, and in turn learnt more about my child and about myself. My love has grown for messy and sensory play with my child and I am now completing an online course in Play Therapy.
My girl is wonderfully quirky, and loves to make people laugh, she naturally makes people around her happy, and seeing her happy warms my heart.
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 :
I am really trying to be positive at the moment, I’m trying to find positives in everyday.
* I refer to my daughter’s as Lou (5) and Moo (2) when blogging.
I just wanted to write a little bit about life at home, and also when out and about. My eldest daughter (5) felt deeply jealous towards her younger sister (2) even before she was born, we held out until I was 7 months pregnant before we told her she was going to be a big sister. When we brought our new baby home 2 years ago, we had to be on constant watch as Lou would try and rock the Moses basket vigoursly, her main focus became her baby sister and if I was holding the baby Lou would try and gain my attention in any way possible, often by throwing any objects she could get her hands on out of her bedroom. She would try and tug at her sisters tiny legs, it must have been so difficult for her to understand why this new baby was taking up so much of Mummy’s time. As Moo became less independent on me in terms of feeding I was able to have more time with just myself and Lou, and as parents we were slightly relieved when Moo became more ‘durable’ but still, every minute has to be watched as her big sister would try and roll her over and rough-house play not realising her strength or how much pressure she was putting onto her baby sister. We had to reinforce ‘gentle’ or ‘kind’ hands every day. I still, to this day, cannot leave the 2 girls alone, not even to use the bathroom!
There were a few times that this also had to be reinforced at Lou’s early years setting but she had been used to being around other children from 9 months old when I returned to work after maternity leave. I admit to being a ‘hovering’ or ‘Helicopter’ mum even now that Lou is 5 as I’m always worried that she may hurt another child but I do find that I’m relaxing a little more since she has started school.
With Moo about to start Pre School I do have to watch her closely now at stay and play groups or when mixing with other children as she is pushing other children and snatching toys away from them, she seems to always go for the face. In my theory I think that Moo is hitting out perhaps as she sees all other children as if they are about to hurt her (like she experiences at home,) she is doing this to say “don’t mess with me” perhaps.
At home Moo isn’t ‘Queen Bee’ or ‘.Top Dog,’ therefore in her own educational setting she is copying the behaviours at home that she experiences every day with her sister.
We are always observing Moo at groups and activities where there are other children, we hope that starting Pre School will benefit her greatly with the positive reinforcement of the staff, who have already taught her sister.
We use a method where we demonstrate ‘like a feather’ to Moo of how our hands are kind towards other people and gentle like a feather.
You can join The Lovely Mum Crowd here:
I recently joined a fantastic network called The Lovely Mum crowd, a network that joins parents in their local area and also further a field. In the run up to Mother’s Day, The Lovely Mum Crowd has been asking for #nofilterparenting posts, or just a photo and a few words about experiences of parenting. I’ve written 2 and here’s the first!
This time last year I admit I was struggling, I was at a loss and felt completely hopeless.
When I found out in April 2016 that my daughter had additional needs, (even though I’d really known since she was 18 months,) I found myself being completely guilty of focusing on the things that she cannot do. 1 year on I do have a very different outlook, it has taken time to come to terms with, but via research, talking to other parents who’s children also have additional needs, and via professional advice from an Occupational Therapist I’ve really tuned into my daughter’s interests and this has had such a positive effect.
I found out that my child is a ‘Sensory Seeker,’ and thrives on Messy or Sensory play experiences, her attention and concentration on these type of activities is much improved, she thrives on activities such as washing up liquid mixed with sand, Play Dough, rice and pasta play, and also craft activities its fantastic to see her so happy when absorbed in these experiences.
I have also learnt to embrace my daughter’s ‘special interests’ and these provide much motivation, for example she loves The Trolls Movie and she’s an avid collector of ‘Shopkins,’ these objects make her happy and provide a great deal of motivation like the reward of getting some more Trolls stickers for her sticker collection book.
We always used to find that school holidays were a struggle as my daughter thrives on the routine of school but by offering her a ‘Sensory Diet’ as advised by an Occupational Therapist, I now plan for a wide range of activities and experiences to allow for ‘Sensory seeking,’ which has the effect of making my daughter calmer at home. These could be seasonal craft activities, messy play experiences, time in the sensory (or calm area) that we’ve made under our stairs! And also set aside time for physical activity such as rolling on a big ball that looks very much like the ones used for Yoga!
I no longer feel so desperate as I offer my daughter clear choices of activities to do at home, so I know it will be of benefit to her, I have been so inspired with Messy/Sensory Play and craft activities that I now share what we do via my own blog and I’m going to be volunteering at a local play therapy centre in hope of training to become a Play Therapist 🙂
You can join The Lovely Mum Crowd here: