Our Neurodiverse Familyย 


It was only a few months ago that I even heard the following terms:  


And: 


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.” 

Source: https://en.m.wikipedia.org/wiki/Neurodiversity

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 ๐Ÿ™‚ 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.” 

Source: https://en.m.wikipedia.org/wiki/Neurodiversity

I also: 

“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. 

community.fireflyfriends.com

“The “acceptance perspective” endorsed by the movement is a view that autism is not a disorder, but a normal occurrenceโ€”an alternate variation in brain wiring or a less common expression of the human genome.[13]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.[13][15] They believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated.” 

Source: 

https://en.m.wikipedia.org/wiki/Neurodiversity


Our Family Dynamics

We want to celebrate our Neurodiverse family, even though there are many challenges, we are all about the positives ๐Ÿ™‚ 

Lou (5): 

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 (2) 

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

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 ๐Ÿ™‚ 

Daddy

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 ๐Ÿ˜ฆ 

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 ๐Ÿ™‚ 

We are trying out absolute best, we can’t do anymore than that ~ everybody deserves to be happy ! 

Thanks for reading ๐Ÿ™‚ 

Click image to go to the Family Fund Website

I just thought I’d also add a fantastic piece of writing I’ve found this week from Faithmummy :  

Autism poem

Which shows the diversity of Autism and describes the many differences of my 2 children. 

Happy 6 months!ย 

I know it’s sad (I don’t get out much!) But Happy 6th months to my Blog ๐Ÿ™‚ 

6 months ago I was in quite a crazy place and starting my Blog enabled me to find a place where I could share all my thoughts ~ and in the process I’ve met lots of lovely, supportive Bloggers. It’s helped me to understand myself and my daughter more and has opened avenues I’d never have expected. I’ve always been quite down on myself and was forever telling myself I wasn’t any good at anything but in the last 6 months this has happened (all through the platform of my Blog,)

  • I’m a regular Blog post writer for the charity ‘Family Fund.’ 
  • I’ve been able to use my photography in my Blog, which was an interest I’ve had since a child and this has enabled me to pursue my interests once again. I’ve been asked by Family Fund for permission to use a photo of my daughter, Lou, in their marketing materials. 
  • My Blog post regarding local children’s centre cuts enabled me to feature with my family in a local newspaper and I continue to fight to support this cause.
  • I have learnt so much about Sensory Processing Disorder (SPD,) ADHD and ASD and have researched so much on Pathological Demand Avoidance (PDA.) And have been able to advise some other parents. All of which has enabled me to learn so much about my own child and how I can best support her. From finding out about a ‘Sensory Diet’ I’ve incorporated my Early Years experience to explore many different sensory (messy) play and craft activities. 
  • I’ve started writing 2 online series via an online publisher and I hope to producce my own book in the near future. 
  • I’ve connected with so many supportive Bloggers via support networks, both local, countrywide and even worldwide.

6 months ago I didn’t even know what a Blog was! I never thought that a platform could open up so many opportunties whilst enabling me to be at home whilst my children are young. 

So very, very greatful ๐Ÿ™‚ 

Thanks for reading ๐Ÿ™‚ 

Magic Moments Linky 1/8/16

I’ve found a new Linky hosted by Jaime at http://theoliversmadhouse.co.uk

We had a magic moment with Lou and Moo only last Friday. As Lou isn’t a fan of hugs and people touching her unless it’s on her own terms, I was so happy when both girls wanted to sit on a bench together. I just had to snap the moment. I could see that my youngest, Moo (17 months) wasn’t keen that her sister had put her arm around her to keep her safe on the bench but this was a major step in Lou using her ‘kind hands’ with her sister. 

Thanks for reading ๐Ÿ™‚ 


“This is what I do…”ย 

It’s been nearly 5 months since I came across another Blogger’s site, via a parenting support group, before March 2016 I didn’t even know what a Blog was! I would have never have thought that 5 months later I’d be sharing my own story via my own Blog! 

Yesterday I hit a 50 post milestone, some posts have taken me over an hour, sometimes up to 3 hours long, so on reflection I realised how much time and energy I’ve put into my Blog so far. I’m trying to educate my other half on the benefits of me Blogging as even though it’s not a paid ‘job’ I do say: 

“This is what I do.” 

I now find myself explaining this in general conversations – stating that I am a stay at home mum, but I’m also a parenting and additional needs Blogger.

It’s difficult lately as it’s the school holidays, and I would normally spend sometime writing in the day whilst Lou was at Pre School and Moo had a morning nap, therefore I’m doing more in the evenings! It is addictive once you start but I’ve found so many benefits to Blogging, I’ve now signed up for an online course in Blogging and Web design to help develop my own understanding and to help advise and support others who maybe want to start their own Blog or Website. 

This is the direction my Blog is now heading in: 

1. Continuing our own personal journey, writing posts from the heart and sharing our experiences, whether good or bad.

2. Sharing parenting experiences in general – I love sharing parenting quotes, especially the humorous ones! 

3. Product reviews – this is a direction I wasn’t sure about at first, but I’ve now completed 2 reviews and currently reading 2 parenting books to write a 3rd review, it’s nice to work with companies that appreciate me writing about their products. 

4. Continue the fight to make Sensory Processing Disorder more acknowledged in the UK, as it is in the USA. 
5. Sharing my love of photography – I’ve loved photography since I was a child, I enjoy taking nature photos and photos of my children, what a way for them to look back at their childhoods, when they have grown up! Or say “mum, what did you take that photo for?!?” 

Sculpture in the grounds of Abbey Park, Pershore.

6. Helping others – my brain is a minefield – I started blogging to help collect my thoughts together, that were endlessly floating around in my brain. I’m certainly not an expert in anything but I’m passionate about my children and working with children as I have done for 12 years, if I can just help 1 person I’m happy. I’m also happy to help other people start a Blog and happy to learn alongside as I’m still picking up new things myself daily! I’ve had a love for technology from a young age – I can be quite addicted but I’ve always enjoyed using technology and just have to ensure that this is done at an appropriate time and place! 
7. Sharing activity ideas and plans. This reminds me of my passion for planning and implementing early years activities – some of my most popular and most read Blog posts are those about ‘Sensory Diet’ and ‘Messy play’ experiences. If I find a new activity and it’s successful at home I like to share with others. 

8. To continue to write monthly Blog posts for Family Fund – a charity that provides grants to disabled or seriously ill children. I’ve had posts shared via Family Fund, Learning SPACE (Specialised Products Aiding Child Education,) Footie Bugs, (a children’s football programme, and the SMILE (Sensation, Movement Interaction in Life Experiences) centre in Malvern where Lou attends, has shared my Blog via their Facebook site. I have recently written a post to share our experiences of the benefits of our local children’s centres as I was saddened to hear that funding is proposed to be cut and groups at some centres are closing already, I was recently approached by a local radio station to talk about my experiences. 
I am the worst person for complimenting myself but I am surprised and proud of what I have achieved in a few months, I feel that I would like to return to my career once my children are both at school, but in Blogging I have found the very thing that knits all of my interests together.

I’ve learnt such a lot in the past few months I’ve become a stronger person and feel confident enough to share my views and beliefs and stand up for what I truly believe in, even if not everyone agrees. I stand by that “knowledge is understanding” as this time last year I was completely lost in own self doubt regarding my parenting skills, I was stuck in a rut and from researching and sharing via support groups I’ve learnt so much about why Lou does what she does. And I’ll continue to fight for support for her ๐Ÿ™‚ 

Thanks for reading ๐Ÿ™‚ 

What makes me proud

I have always been a ‘glass half empty’ person. For some reason I always look at the negatives in every situation. It is somehow easy for me to write about things that go wrong or I find difficult. But this is a positive post. Somethings included may seem trivial, but it is my attempt to look at every positive, however small.

My twoย children themselves are the very positives in my life, I am ultimately proud of them, even at their 4 years and 15 months. They continue to make me smile every day, sometimes it’s tough but I never fail to find positives from their learning and humour.
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Lou is my lively 4 year old, she struggles to understand other people’s humour but she has the ability to make people laugh without even trying! She will dance along and copy dance moves from pop videos such as Justin Bieber’s ‘Sorry.’ Who she calls “Justin Beaver!” She has a love – hate relationship with her younger sister Moo, she once told a friend: “Some people have cats, some people have dogs, I don’t have any pets – just Moo!” Lou never stops talking she doesn’t like silence, a bit like me! She has particular fascinations one being water, when she first started nursery she used to flood the bathroom area everyday with her fascination with turning taps on and placing her hands right under! This hasn’t changed at the age of 4 but at least I now understand that this is part of her ‘Sensory seeking.’

Lou has a fascination with time, she likes to go to the kitchen clock and tell us the time, I was amazed at how accurate she is saying “7 o’clock now mummy, it’s bedtime!” I was amazed and when she recognises “20 past 2 mummy,” even though it’s 20 minutes to 2 this is still amazing, I feel! But then I am biased! Lou also has a love of letter and numbers, she frequently recites the alphabet song and is already beginning to sound out letters such as ‘c-a-t’ I feel that when her anger and frustration doesn’t surface she can really enjoy learning.

Lou is a very friendly young lady, she says “hello” to anyone who walks past on the street she isn’t afraid to talk to people, which is very different to my extreme shyness as a child. I’d rather have her with a sprit than a pushover like I was! We do have to keep an eye on this over-friendly-ness, I don’t want to knock this quality out of her, but we’ve had support from our local children’s centre in terms of ‘Protective behaviours’ as she does have no awareness of ‘stranger danger.’ And can be over trusting.

Lou does struggle with knowing how to appropriately play with toys, often because she is distracted with Moo in the room, but she does have a great imagination and it’s great to catch this. She will often come to me and say: “I’ll be Ariel, and you be Prince Eric.” (From the little Mermaid.) One of us is frequently ‘Anna,’ and the other ‘Elsa,’ (Frozen.)
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Just the above image (where Lou is ‘reading’ Game of Thrones,) makes me laugh as she said: “Mummy I’m just reading this story!” I thought: that goodness she can’t read yet!

Moo has a great amount to deal with at her tender age of 15 months. She has to observe a great deal of meltdowns that Lou displays. We do wonder as she gets older if she may copy these behaviours or indeed have any additional needs herself. But for now all we can do is enjoy her while she’s so young and absorbing everything like a sponge!
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Moo copes incredibly well with everything that goes on and she has to endure Lou’s very tight squeezy cuddles! She has started to put her hand out as if to say “I want to be left alone at the moment.” She is a resilient little thing and is also developing a sprit, she definitely knows what she wants! I love to watch Moo, she’s such a busy little girl she will get her dolls and pat their backs, rock them and say “Ahh.” She loves the tea set and will stir the cups using her spoon then bring it to me. She loves animals she will now point and say “bird,” She loves watching the ducks and enthusiastically shouts: “Quack, quack!” Moo is a very loving child she is more clingy to me than I remember Lou being, Lou will only cuddle me now on her terms but Moo offers frequently ‘loves’ and pats my back and says “Ahh.” image

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These are the readings I wrote for Moo’s Christening back in May ’16.

One thing I do know for sure is that I can be having the worst day in the world but the 2 best things in my life keep me going ๐Ÿ™‚

Just had to add this last image as this sums my daughter up in one:
Queen Elsa of Arendale with a Red Power Ranger’s mask!
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Thanks for reading ๐Ÿ™‚