Here’s your child’s diagnosis… now off you go!

I wasn’t going to write anymore posts before Christmas, I still have so much to do, writing cards, buying the last few gifts, wrapping a mountain of presents!

But I just wanted to write this post as I get what I’m wanting to say flowing through my head all the time and it won’t go away until I’ve got it all written down!

At my local parents support group (that I help to run,) we had a meet-up on Thursday 7th December and the subject of ‘after diagnosis’ came up again. This is so relevant for us as a family currently, as our eldest daughter, Lou (5) was diagnosed with Autism Spectrum Disorder (ASD) only 4 weeks ago. We had a wonderful guest speaker from Autism West Midlands attend the group and we got into the discussion of what happens after our children are diagnosed, that there is non-existent after care for parents, whose child has just been diagnosed with something that they will carry for life, it doesn’t just disappear. We all mentioned that it is usually the procedure that the diagnosis is sent via paper, the child will then be discharged from the Autism diagnostic team and maybe even their paediatrician and then sent on their merry way. Lou hasn’t been discharged from seeing her Paediatrician, (who is one of the only professionals that has seen Lou’s full traits,) because she will be assessed for ADHD around February/March time, as children are usually assessed after their 6th birthday.

I knew I’d read something to this affect before my child was diagnosed and it was a fantastic post written by a fellow SEND blogger: Faithmummy:

https://faithmummy.wordpress.com/2017/01/22/when-your-child-is-diagnosed-with-autism-and-then-dumped/

I can 100% agree with what Miriam (Faithmummy) is saying in this post, especially as Lou was first given an IEP (Individual Education Plan) at the age of 3, then given a support package including interventions to support:

  • Gross motor skills (caller ‘Smart Moves,’) as she was diagnosed with Hypermobility at the age of 4.
  • ‘Relax Kids’ to support with self-calming and regulation methods which can also be carried on at home.
  • ‘Sensory Breaks’ given throughout the day in a specified sensory area with sensory toys and equipment to allow Lou to offload her sensory seeking needs. To avoid build ups and to prevent such a large ‘sensory overload’ when reaching home.
  • Emotions cards- recognising and naming emotions to help Lou to identify how she is feeling.

This support package was working for Lou, even without an official ASD diagnosis. What’s happened since she’s been diagnosed is that this support is now non-existent. It is more noticeable that as soon as Lou reaches me at the end of the day, as her ‘safe person,’ she immediately ‘offloads’ to me, often right next to a busy road, we’ve often missed the local bus to take us home and then it’s taken us over an hour to get home, what would normally be a 20 minute walk as Lou is so frustrated and overloaded from a day of ‘holding it all in.’

I’ve currently done 3 different parenting courses in the past 3 years, all suggesting different methods, but sadly none working for Lou, as she displays a high amount of PDA (Pathological Demand Avoidance,) although her diagnostic report states that she’s too young for this to be officially recognised as part of her ASD.

I still get comments regarding my parenting skills, even now Lou has an official diagnosis, I’m so exhausted with the fight to ensure that Lou gets the support she so desperately needs and deserves. My feelings on this are that it’s very much money dependent on SEND budget, and because Lou doesn’t cause trouble in class, she’s seen as ‘fine’ and just gets on with it. She would need to cause disruption in school and experience a meltdown/sensory overload in school to then get people to stop and recognise her struggles, but I don’t see why I should let it get to this point. The interventions she has been receiving are the sort that would benefit any class of children the same age. She needs support in terms of her comprehension and understanding, as in my own experience in school, I would nod and make it appear I was listening and understanding, but underneath I hadn’t got a clue what was being asked of me.

But what happens if girls ‘mask’ in school?

If girls on the autistic spectrum hide their ASD traits in school, it can cause long term effects in terms of their mental health, we have no positive experience with services such as CAMHS (Child and Adolescent Mental Health Service,) as Lou was referred to this service then they didn’t even observe her, and discharged her that same day! We were yet again given a whole load of ‘parenting strategies’ and sent on our way as we were receiving Family Support, which ironically, we no longer qualify for, yet our daughter’s needs are now much higher!

To me this simply doesn’t make sense! If you give yourself a ‘mask’ in school, this requires such a lot of mental effort and it leaves you mentally drained afterwards. I didn’t even realise I was masking my traits until I researched into my own difficulties, I didn’t even realise it was a ‘thing.’ So I had no awareness of why I was finding school so mentally exhausting.

You only have to look back into my medical records to see what has happened as a result of my masking in school and then into adulthood, several episodes of depression, one very bad (Psychotic Episode,) and regular reoccurrences of anxiety. I hardly spoke all throughout my whole school experience, I didn’t tell anyone I was struggling, I put my head down, made it appear like I understood and just got on with it, desperate to make myself seem ‘invisible’ and not drawn attention to.

This is what occurs when difficulties such as ASD aren’t picked up on and even if they are identified, when support is still not given. I find it so confusing as to why there are clear strengths and areas for improvement, and also recommendations on Lou’s diagnostic report, however none of these are being addressed. When we fought so hard for Lou’s diagnosis to be recognised and addressed via appropriate support. I was further knocked into the ground every time my parenting skills were mentioned.

There’s a question that’s hanging over me currently: “to EHCP or not to EHCP?!” Lots of fellow SEND parents have advised me to start the process myself. Lou I think is doing ok academically, her reading was taken back down to the first level, where she was at in her Reception class, when she had been moved up, there’s still a question over her reversing letters like ‘b’ and ‘d’ and words like ‘on’ and ‘no.’ She also didn’t meet her early years goal for writing at the end of Reception year, as she struggled to actually get her writing down on paper. It’s not only the academic side where Lou requires support, it is especially socially and emotionally where she struggles, and currently struggling with her self-confidence, which is worrying at not quite 6 years old. I have read that with an EHCP, it supports the child/young person until they are 25. Which I think would benefit a child like Lou, who may very well struggle more and more as the pressure of school mounts, e.g SATs and GCSEs.

For now, it’s December 12th 2017, I’m physically and mentally exhausted, I currently have no fight left in me. I need to enjoy the festive season with my family, then re- group and continue the fight for support for my girl, ‘Warrior Mum’ will have to return in January 2018!

Thanks for reading 🙂

Here are some more fantastic posts regarding ‘diagnosis’ from fellow bloggers:

http://itsatinkthing.com/special-needs/autism-diagnosis-harder/

https://someonesmum.co.uk/2017/06/16/i-will-not-let-broken-system-break-little-boy/

Diagnosis Day

When my eldest daughter Lou was 18 months old, I first noticed that she had some sensory processing difficulties. She was a huge ‘Sensory Seeker,’ and loved the feel of a running tap on her hand and the pressure of holding her hand right under a running tap. She first started having tantrums of epic proportions, but as I worked with 2 and 3-year olds I hoped that it was just one of those age-related things and it was reinforced by other people that it was “normal behaviour for her age.” Deep down I knew there was something more, especially when the behavioural difficulties carried on and got worse through the ages of 3, 4 then 5. It was difficult for people to see the things we were dealing with at home as Lou ‘masked’ her difficulties at her pre-school setting, and as soon as I picked her up, or as soon as we reached our front door, exploded like a fizzy bottle that had been shaken all day.

After continually asking for help with Lou’s behaviours, which spiralled after my 2nd child, Moo, was born. I was sent on parenting courses, every time I mentioned her difficult behaviours my parenting was mentioned, especially as she appeared ‘fine’ in places away from me. People told me that I wasn’t firm enough with Lou, but being firmer just meant that Lou’s anger and frustration doubled. I started to research into Sensory Processing and I realised that this is a significant part of Autistic Spectrum Disorder (ASD,) I leant about ‘masking’ and children who offloaded to a special person, who they feel most comfortable with, I realised that I was Lou’s ‘safe person.’ I learnt about ‘sensory seeking’ and ‘sensory avoiding,’ and that some children can have both.

It was Lou’s health visitor that first said to me “I believe you” as she witnessed Lou’s behaviours on a visit to our house, and then made referrals to a Paediatrician and Occupational Therapist. Unfortunately, Lou was discharged from OT after only one appointment and 1 observation in school. I was hopeful for more strategies or support in helping with her sensory seeking behaviours and felt deflated after this. Lou’s hyperactivity and impulsive behaviours were witnessed by her paediatrician, who found that Lou had ‘Sensory Processing Difficulties, and Hypermobility (where the joints bend further than normal.)

After several appointments, it was agreed that Lou should be referred to the Umbrella Pathway Team (Worcestershire,) for an assessment to investigate if she is on the Autistic Spectrum. From the referral to the final diagnostic meeting (where members of the Umbrella Pathway team discussed whether they felt from the assessments and reports from Lou’s Paediatrician, OT and a member of the Complex Communication Needs (CCN) team, as well as discussing with Lou’s old school and current one, (where she has almost attended for a whole term now,) this process took approximately 9 months. I have heard that some parents have waited longer than this for a decision regarding their child, but after I heard that Lou’s diagnostic meeting would be in November 2017, I pretty much convinced myself that it would come back as an ‘inconclusive’ result. This was mainly down to my worries that Lou presented very differently to school than she does at home, and even though our family and friends have seen snippets of Lou’s behaviours and traits, the only ones who have witnessed her as 100% herself without any ‘masking,’ are myself and Lou’s father. The only hope I did hold onto was that the Autism specialist who completed the CCN assessment on Lou seemed to be very understanding of how girls on the autistic spectrum can present differently to boys.

As I started my 3rd parenting course to support with both of my children’s behaviours at home, I got a call from Lou’s Paediatrician, I was so nervous to answer the call, but the Paediatrician confirmed that Lou had been found to have a diagnosis of Autism Spectrum Disorder (ASD.) I felt an overwhelming sense of relief that I wasn’t making all of it up, as my low self-esteem lead me to believe, for all the times where I doubted myself and my parenting skills, there was a huge reason and I saw this from when was 18 months old. I also had mixed feelings of guilt as I am also going through an assessment of Autistic Spectrum Condition (ASC) myself and that I have a child with the same issues as I do, (also many different ones.) It hit me that this is a life-long and life-changing thing that will affect my child but also glad at the same time, that she has been diagnosed as a child and I do hope that she receives so much more support than I did through school, where I was labelled as ‘painfully shy,’ and because I just got on with things, teachers believed that I was ‘just getting on with it.’ I am pleased that my daughter is more vocal and outspoken as I was as a child, I hope that she has this ‘spark’ to speak out if she doesn’t understand something and not just sit in class pretending that she understands when deep down she really doesn’t. I hold onto the hope that it may have just changed since I attended school and my daughter will be included and feel expected and comfortable in her own skin.

I didn’t really ‘believe’ this ‘verbal diagnosis’ of ‘Autism Spectrum Disorder’ (ASD) until I set eyes on the actual summary report from the Worcestershire Umbrella Pathway team. This arrived the weekend of the 25th November 2017, it was then there, in black and white and then I actually said to myself: “It’s not me, it’s not my parenting, it never has been, and there’s a huge reason why. There is a part of me that wants to wave this report in front of certain faces, but I think the best thing I can do is just keep educating other people on how girls on the autistic spectrum present, and continue to help and offer advice to other parents who are going through the same thing.

One element of the diagnostic report states: “we acknowledge that she does not respond to direct demands, however, she is very young and there is insufficient evidence to specify that she has clear features of Demand Avoidance at this time.” Which I can understand. However, it is so frustrating for not only myself but other parents in the county of Worcestershire whose children display clear traits of Pathological Demand Avoidance (PDA) as part of the Autistic Spectrum. I have researched PDA for the last year and also use demand avoidant strategies at home, which have worked better than any other strategies we’ve been told to use. If I read any blog posts or articles about PDA I usually nod the whole way through, it just explains a lot. If PDA isn’t recognised in the county where we live, I have already decided that I would take Lou to see practitioners such as Dr Judy Eaton (consultant clinical Psychologist,) who specialises in ASD, ADHD and PDA, in a private practice.

As for the rest of the report, the ‘needs’ are double the amount of strengths, which is clear to see why extra support is required, there are also recommendations of what to do next, which I hope will be addressed at the ‘Team Around the Child’ meeting we have this week.

On 29th November 2017, Lou had an appointment with her paediatrician, we discussed that it is a shame that there are no specific ‘post diagnosis’ appointments to help parents after their child has been diagnosed with ASD, as this can be an extremely emotional and confusing time for parents. There are still questions regarding Lou’s hyperactivity and therefore it was decided to assess her for ADHD around March/April 2018, as she will be 6 in March ’18.

For now I’m trying not to think too far into the future, we are having to take each day as it comes. I want my daughter to celebrate who she is and never be afraid of being herself.

I will continue to find support in parents who also have children with additional needs, via online groups and also the parent’s support group I help to run, some parents have been through the same and their children are older, and some have only just begun the journey to diagnosis, I hope to support them in the best way I can.

www.spectrumgirls2.com

Facebook: https://www.facebook.com/spectrumgirlsourjourney/

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. 

1 year of Sensory Sensitive Mummy! 


It’s been such a busy time with Moo’s 2nd Birthday but I always remember the date that I started my blog ~ Sensory Sensitive Mummy 1 year ago today ! 

This time a year ago I was feeling so very lost, and I decided to write my feelings and our journey down via a blog, having only just found out exactly what a blog was! My blog now feels like it’s own person, I feel like it has its own identity! 

Fast forward to today and I’ve now had 12 months of research on Sensory Processing Disorder (SPD) something that I wasn’t very familiar with, also Autistic Spectrum Disorder (ASD,) Pathological Demand Avoidance (PDA,)  ADHD and Hypermobility. I’ve also started to look into more about genetic anomolies. 

I now belong to several amazing support groups after feeling so alone in our journey, we’ve been able to connect with other families that experience the same as we do, these people just ‘get us.’ If we are experiencing a bad day or if I have a burning question I know that I can post my query online and someone will offer support or guidance about what they may do in the same situation. 

12 months of research via the Internet, other people’s blogs, support groups, books, etc has taught me so much about how best to support my child, I understand so much more now that every behaviour certainly does have a reason and that for the majority of the time, there’s usually a sensory reason behind it. This has also taught me so much about me, about who I am and helped to answer so many questions I’ve had about my whole childhood and life so far. I have touched on this in posts about myself, but I’m keen to keep this blog about my child’s journey and I’ve recently found a new platform to express my feelings about my own journey that I may wish to share one day! 

After the past 12 months of learning so much about additional needs, it has empowered me to want to work in the SEND sector and I’m keen to return to work in the later part of this year, I will certainly aim to keep posting on the blog as and when I can! 

Through my daughter’s love of Sensory/Messy Play and Craft I have been able to develop activity ideas via #sensorymummyideas and #sensoryandcraftshare

This is a direction I hope to continue, especially through the summer months when we do a lot of Sensory and Craft activities. 

I was so happy to be introduced to the charity Family Fund, who provided a grant for our daughter for Sensory equipment and Play Therapy sessions. I have been able to write monthly blog posts for this charity and we’ve had photos taken of our family that are used in their marketing materials. 

Blogging has also reignited my passion for photography as I like to use my own photographs in the blog, I have also learnt how to edit photographs and add graphics to create my own quote pages. 

I have learnt so much by being a member of a fantastic community of SEND bloggers, they post some amazing things via their blogs and I like to share as many as I can. 

There have been times when I’ve wondered if I’m doing the right thing via sharing but one of the reasons for also starting the blog was to help other people – I always said if I help one other person it would be so worthwhile, I now have just over 340 Facebook likes on the Sensory Sensitive Mummy Facebook page, just over 700 Instagram followers and only today (how ironic!) hit 2,000 Twitter followers! 


I am not predominantly worried about the stats of my blog, or social media but what this means is that the goal I had of spreading awareness of SPD has reached this many people, and I hope in the process, has helped with the understanding and acceptance that I’m so passionate about. 
Thank you for everyone who has supported me over the last year 🙂 

Here’s to the next 12 months! 

Yesterday was an outstanding day…

…Yesterday was fairly unique.

The last time we had an entire day without a meltdown, or ‘Sensory Overload,’ (as I like to call them,) was on Christmas Day 2015. When these unique days occur I get a feeling of “is this where it all changes?” But I know in my heart, this was a ‘one-off.’ 

Yesterday Moo (22 months,) had a day with Daddy and it was just myself and Lou at home. We made Gingerbread biscuits and iced them, as this was related to Lou receiving a ‘Gold Award’ during her school assembly for creating a craft Gingerbread man for her homework.

We also looked at books, we watched ‘Zootropolis’ – which is quickly replacing ‘Rio’ as the film that Lou insists on watching everyday! And we watched all the way through – which is unusual for me as I’ve only ever seen the start and the end! We explored many of Lou’s new Christmas presents, such as ‘BloPens’ which she was very good at – mummy = not so good!!! 

Lou only had to be reminded once to listen or be calm from 10am until 5pm and I was astounded! Lou had my full attention without Moo, who she still has jealousy issues with. 

In comparison, today has been very tricky, we have been tested once again, spat at, hit at and shouted at. Lou has been extremely hyperactive, demanding and has found it difficult to stick to any type of activity. She has difficulty playing independently and choosing her own activities, and struggles to play alone – craving the attention of an adult every minute that she is awake. The girls have a wide range of toys – dolls, books, puzzles, small world, bricks, etc, but we have to give her a choice of 2 different activities. 

As Lou responds so well to a structured school routine, I am having constant battles in my head as to what to offer her at home, we do all we possibly can – I could sit with Lou the whole time she is awake but then what happens on the days when I’m alone with the girls and Moo isn’t given attention, this simply wouldn’t work. We would also have no clean clothes or dishes! We use visual timetables and explain everything that is happening, however, I am reluctant to turn my home into a school-type environment, with a routine for 7 days per week, surely a child’s brain will overload at some point?

I tried to do a few similar activities today and Lou wasn’t in the slightest bit interested, it proves what I’m always banging on about, that she has to be in a particular type of mood to respond to certain activities. 

Still, I will relish the outstanding day we had, the experiences we shared and carry on looking for the best methods that work for our brilliant masker girly! 

Thanks for reading 🙂 

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 🙂 

Happy New Year! 

Just a quick one! 

Thank you to all my followers and likers in 2016 🙂 

I have been so happy with how my Blog, Facebook, Twitter and Instagram have all taken off since March 2016. 

I wanted to share our journey so far, to help others where I can, and so far I’ve been able to do this and connect with other parents who are going through exactly the same 🙂 

I hope for 2017 to write more posts, to have confidence to fight for what I believe in and support for our daughter 🙂 

I hope to also gain answers in terms of my own journey 🙂 

I would like to continue to grow my business ‘Sensory Mummy Music‘ and start a children book idea that I’ve had for a while now ! 

Thank you to everyone who has liked, commented and supported us in 2016 🙂 

Wow what an appointment!

picture_20160731_215007125.jpg

Today we had Lou’s first Occupational Therapy appointment, she was definitely in her ‘worse case’ scenario mode to be observed, after having a massive meltdown after coming home from school, I think the change of routine may be finally hitting her. And being an afternoon appointment, she was tired and non-compliant. I needed the OT to see this. It was confirmed that Lou certainly has Sensory Processing Disorder, she is a huge ‘sensory seeker‘ and has quite a substantial case of ‘Hyper-mobility‘ in her joints. As she placed her hands onto the examination couch the amount of flexibility in her joints was very noticeable. What this essentially means is that Lou’s joints move more than say, my own, and she has to work harder in aspects such as gross motor skills.

The OT noted that Lou is a very hyperactive child, who is always on the go, always searching for sensory experiences, she stomped around the room and tried to escape from the room to run upstairs in the building several time, I could see that the OT was nodding, and say “Yes” she’s seen this before and it all seemed to make sense! It was like a light bulb moment to have someone agree with what I’ve been harping on about since Lou was 18 months old! As Lou rolled over a special tube, I told the OT that the ‘special tube’ to roll over at home is usually her sister, Moo.

I wanted to ask so many questions, but it was so difficult to talk and keep half an eye on Lou as she was rolling over the examination couch! As soon as we reached home, the OT called me and arranged to visit my home to talk in more detail whilst Lou is at school. what we will also get is further support in terms of a course to explain more and further support in terms of activities that can be done to bring Lou’s level of activity down to a mid-level, as she is functioning on such a high level of activity at the moment and she has to learn to regulate herself, all fascinating to hear. It is definitely recognised that Lou is holding in her sensory overloads all day as she wants to comply and that’s why we see such as escalation in her behaviour once she reaches home, in a place where she feels comfortable to do so. This doesn’t solve the bruises I receive during a meltdown, but if activities are put into place throughout the day, it should hopefully help to improve the situation at home – fingers crossed!

We’re getting there a bit more now, amazing things happen once people start to listen, understand and believe! A bit more light at the end of this tunnel!

Thanks for reading – I can’t praise my family and friends enough for their help and understanding. 🙂

 

More mind blowing stuff! 

Lou had a Microarray blood test to check for genetics at the beginning of July. Today we had the results, I’d kind of predicted that I wouldn’t hear the words “clear” but I was still quite surprised to hear the words “anomoly.” I was told not to worry about this – although I naturally am! And I still can’t remember all of the conversation! I was relieved to hear that the results will be sent to me via post to clarify. But the way forward is to now check if this anomoly has been passed down by either myself or Lou’s father in the form of blood tests for ourselves. I’m a terrible ‘Googler,’ I Google absolutely everything, but I’m refraining from doing this until we know more. I am hopeful that the results will show a clarification for some of the difficulties Lou displays, to then be able to help support her more. 
I will update as and when we find out more.

But I know one thing – nothing can or will change –  we love our big girl to the moon and back, she is so funny, she loves to make people laugh and she is picking up so much now, she continues to surprise us everyday, yes there are still difficult behaviours but we hope to gain answers to help her more. 

If anyone has any similar experiences I’d be happy to hear from you.

Thanks for reading 🙂