Our Neurodiverse Family 


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 🙂 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 occurrence—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 🙂 

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 🙂 

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 😦 

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 🙂 

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. 

We’re not alone in our struggle…

​A few months ago I saw an article on the Redditch Advertiser website, where I read about fellow ‘warrior mum’ who was fighting a battle to prove her innocence after being accused of faking her son’s autism.” Source: Redditch Advertiser 24/08/16.

Here is the original article I read: 

www.redditchadvertiser.co.uk

This lady’s story really pulled at my heart strings and I read more via her own Website: 

http://breakfasttree.com/

I realised how much I could relate to this lady’s experiences and she inspired me to carry on fighting, even though it’s well and truly exhausting.

After a huge battle to get an NHS diagnosis Bernardette sought a private diagnosis for her 4 year old son. I love the following quote from her website: 

“YES we have a diagnosis.
YES it was precisely the issue that we suspected.
AND YES… WE THE PARENTS WERE ABSOLUTELY FCKING RIGHT.” 

Source: www.breakfasttree.com

A private diagnosis found that Bernardette’s son had Pathological Demand Avoidance (PDA) as part of an Autistic Spectrum Disorder (ASD) 

Bernadette explains that she hopes to make more people aware of PDA. To avoid other parents going through the same difficulties that her fanily has suffered. She explains PDA really well in this post:

http://breakfasttree.com/asdpda-explained

A few days ago I saw on Bernardette’s Facebook page that sheis holding an art and spoken word event, which aims to expose the true harm caused by authorities to families with ‘unseen disabilities’ at Bromsgrove’s Artrix on Slideslow Drive.”

The event, which is taking place in the Artrix gallery, will run from Wednesday, February 1 to Sunday, February 26.

Source: www.bromsgroveadvertiser.co.uk Bromsgrove Artrix

I was honoured to be approached by Bernadette who asked if I would like to include our story in the exhibition. I wrote quite a long passage! But I thought I’d share our most recent time line here, It really made me think – this is why I’m always feeling exhausted and I could look back on how much we’ve actually been through in a short space of time. 

Here’s the time line of events: 

On 16th March 2012 our first child was born via Emergency Caesarean Section after suffering meconium in the waters and a drop in her heart rate. It was an extremely scary time…

…Our current journey started when my daughter was 18 months old (September 2013,) when I noticed that she was distressed by sudden and unexpected noises and would scream, she would seek out anything related to water, and keep taps running until the bathroom at the nursery was flooded. She was extremely active and screamed and got angry – when I discussed this with anyone I was told “It’s the terrible 2’s come early,” or “she’ll grow out of it, but she didn’t. I was working full time, my daughter was attending a childminder’s and nursery, I just got on with things.

  • May-August 2015 – Health Visitor wrote in a report questioning whether I had bonded with my child from birth – to which I said: “Of course we bonded – she’s my world – I think about her before myself everyday.” I asked our Health Visitor’s advice regarding her behaviour, she replied: “Well you know more about childcare than me, you’ve been in the job longer.” A few weeks later I saw the Health Visitor outside the GP’s surgery and she asked my daughter: “have you been naughty today? This professional was supposed to be supporting me in my darkest hour – my child’s behaviour was worrying me and I’d just had my second baby. I felt cheated after building up a rapport with this person. 
  • August 2015 – I wrote a letter of complaint to the local health visiting service (Worcestershire) to which they defended the actions of the health visitor, but also said that “lessons have been learnt.”

September 2015 – referred to ‘Early Help’ via our local children’s centre. We were then assigned a ‘Family Support Worker,’ and I was put on both ‘Family Links,’ and Triple P (PPP) Parenting courses. I have since learnt that this is the usual protocol if a parent identifies an additional need in their child. Since researching ASD and PDA for the past 12 months, I now know that the methods advised to use from the PPP course do not work with my child, who scores high on the online scales for PDA (from the PDA society website.) Family Support was given to us once a week, a lot of parenting strategies given and I took on board absolutely everything that was suggested. 

October 2015 – Starts a new Pre School, staff there noted observations of sensory processing difficulties and Sensory Processing Disorder (SPD) was first mentioned so I researched more via the Internet and publications. An Area SENDCo is mentioned but my daughter was not seen by this professional once in the whole 12 months of attendance, I was told this was due to SENDCOs being made redundant because the company Babcock International had taken over these roles at Worcestershire County Council. New Health Visitor noticed our daughter’s behaviour at home and said: “It’s not your parenting, I believe you,” actually puts a referral through to CAHMS that we thought was put in by previous HV.

December 2015 – Appointment at CAMHS Worcester, appointment with an Assistant Psychotherapist. Requested not to see our daughter so we attended with our youngest child. Outcomes basically from this appointment were that they were focusing on my anxiety and we were told to just “carry on with Family Support, as that seems to be working.” We left feeling very disappointed and I cried on the way home, after we had taken 2 buses to get there, and all this without even seeing my child. 

March 2016 – After the frustration of the CAMHS appointment, I started my own Blog that I named ‘Sensory Sensitive Mummy’ and opened up social media accounts alongside. I then connected with fellow SEND bloggers and joined many online support groups for the parents of children with additional needs. 

April 2016 – We saw Paediatrician for the first time who recognised that our daughter has ‘Sensory Processing Difficulties,’ with traits of ASD and ADHD, although she wouldn’t be tested for these until she has settled into school from September 2016, and that ADHD assessments are not usually completed until the age of 6. A referral was made to Occupational Therapy. Paediatrician also finds that my daughter has ‘Hypermobilty.’ “People with hypermobility are particularly supple and able to move their limbs into positions others find impossible. Joint hypermobility is what some people refer to as having “loose joints” or being “double-jointed.” (Source www.nhs.uk)

May 2016 – attended Play Therapy at the SMILE centre in Malvern, staff extremely supportive and encourage us to apply to the ‘Family Fund,’ a charity who provides grants to disabled or seriously ill children. I applied but wasn’t very hopeful. The Family Fund sent out an assessor to our home, and this person noted that she could see that our daughter was a huge ‘sensory seeker’ as she was attempting to launch herself off furniture. The assessor said “I’m going to recommend a grant for sensory equipment and 8 play therapy sessions and I really feel that your child will really benefit.” I was shocked when we were awarded the grant and cried a lot, in relief, as the equipment such as ‘bubble tubes,’ were out of our budget range. Encouraged by Health Visitor to apply to DLA to help with costs such as a ‘Weighed Blanket,’ which was to help calm our child during ‘Sensory Overloads.’ These blankets range at around £180. Refused 3 times for DLA, due to “need is not great enough.” Even though our daughter requires constant supervision. 

June 2016 – Bloods requested by Paediatrician to check for genetic anomalies in our daughter. 

July 2016 – told that the OT referral hadn’t actually gone through due to a “mix-up” our Health Visitor does the referral herself. 

August 2016 – Family Support ends due to us “getting on well.” I offer a ‘Sensory Diet’ throughout the whole summer holidays. Behaviour gets progressively worse throughout the holidays as she struggles without the education routine, behaviour at home includes: – Spitting in our faces – Shouting – Screaming – Hitting out at me, her father and younger sister – rough-housing younger sister – throwing objects – damaging property such as doors, walls (from slamming doors,) pulling stair gates from walls. Results from daughter’s bloods show a “copy number imbalance of uncertain significance.” A letter was sent out with details. No letter actually received until Oct 2016 when I requested from our GP. No actual genetic numbers given to explain the imbalance. Bloods requested from both myself and partner. 

September 2016 – Settles well into school, interventions offered such as ‘Relax Kids’ and ‘Sensory breaks.’ Some sensory processing difficulties noted by staff, in terms of processing time and sitting on the carpet. No sensory overloads seen at school. Behaviour at home continues to spiral due to the step up in what is expected after the jump up from Pre School to School, holding in sensory overloads all day and ‘exploding’ as soon as reaching home, overloads seen up to 10 times a day and some overloads lasting an hour until she is calm. Often takes both myself and her father to help calm her. I attempted to self-refer back to Early Help – Family Support to help at home – told that we “no longer qualify for this service due to government funding cuts, and that ‘targeting’ families will be concentrated on.” I was told to “ring the Autism West Midlands helpline and they can advise you further.” I attended a talk on ASD run by Autism West Midlands (advised to by staff at children’s centre,) which initally confused me, as we still have no formal ASD diagnosis, but what I gained from this was a lot of reassurance that my daughter was indeed displaying very similar traits to other children with ASD and I had my ‘Light Bulb’ moment regarding my own difficulties that I’ve had since childhood (where I have written a separate blog post on.) 

September 2016 – I stood up and talked about our journey at a scrutiny meeting at Worcestershire County Council directly addressing Cllr Marc Bayliss who is the ‘Cabinet Member with Responsibility for Children and Families,’ responsible for the decision on funding cuts, that resulted in us no longer receiving support at home. I later directly email him and his ‘officer’ Hannah Needham replied to me on Cllr Bayliss’ behalf, and told me that “you have received your package of support.” I hadn’t named my daughter in my email and I was angry that she had referred to my daughter by name, as well as delving into our records without my permission. This email completely ridiculed me. 

October 2016 – received appointment with OT who notices Sensory Seeking and difficulties with gross motor skills, offers to observe in school and gives advice at home such as a ‘Traffic Light’ behaviour system. OT assistant finds that school are ‘doing all they can.’ And gives them equipment such as a ‘wobble cushion’ to help support her listening during carpet times. Heard nothing about our blood tests until I chased, had tests. 

December 2016 – OT rings to discharge my daughter from the service although I share how difficult at home her behaviour still is and that we no longer qualify for family support at home. OT unaware of children’s centre cuts and advises to keep behaviour diaries to send to the Paediatrician. I constantly research ASD and PDA and talk to other parents who have children with the same. I try out methods that are used for children with PDA and my daughter responds to these methods such as avoiding the word “NO” and avoiding negative or demanding phrases (where possible,) more than the methods that I had previously been advised to do. I spoke to the school nurse to ask for advice on my daughter’s inability to feel full, that she is constantly asking and seeking food, and that she will rip off locks on the kitchen door to get to food, this professional advised that my daughter is under OT and that this should be the professional to offer advice.

January 2017 – Still fighting to be heard. Advocate for my daughter. Still waiting for blood test results… 

As you can see from this timeline of events, there has been a lot of passing the buck and loop holes in the system. How many more families are meeting the same fate? Especially if their child has an invisible additional need. I am very lucky to have linked up with fellow SEND bloggers and spoken to a lot of parents whose children show identical traits to our daughter, many of these children have a formal diagnosis of ASD/PDA. We know of another family who have a daughter so identical to our child, they could be twins! If our health visitor and the Family Fund assessor could see what I do –  why am I not being listened to or believed? What’s different about our case? Do they think it’s still my parenting after all this time? Am I exaggerating, making it up? I often think to myself after my daughter has had a serious sensory overload, “I simply couldn’t make this up, why would I want to?” We are not in this for the money – we don’t qualify for DLA! I am simply fighting for support for our child, to act as her voice, to ensure that she doesn’t have to go through the same struggles as I did – all the way through my school life and beyond. 

Bearnadette has started a petition to help spread awareness of ASD/PDA, please sign and share to prevent other parents and their children slipping  through the net and being misunderstood: 

www.change.org

Thanks for reading 🙂