Ruby-Rose

I have had a break from blogging for almost a year now. But I wanted to re-publish this page to continue the work I started on spreading awareness and acceptance for girls on the Autistic Spectrum.

I’ve written for the charity ‘Family Fund’ several times over the past 3 years, since finding out about the wonderful support they offer families who have children with additional needs. 

I just wanted to share my friend’s story about her daughter Ruby-Rose who is 16 months old.

On Saturday 13th October 2018, my friend contacted me to say that she’d received a letter stating that Ruby-Rose does not meet the criteria for a Family Fund Grant. In the summer of 2018, after seeing Ruby-Rose several times I encouraged her family to apply for a grant after receiving 3 years of grants that had significantly made a difference for my eldest daughter, Amber (now 6.)

Since the age of 3 months, Ruby’s mother, Claire has been asking my advice as she noticed something regarding Ruby’s development, some may say that this is very young, but I can completely relate as parents, we are the experts on our own children.

Ruby has been seen by a great deal of professionals at her young age, she also received hospital care for Meningitis at 5 months old, this was an extremely worrying time for the whole family. Ruby has been seen by Health Visitors, GPs, Paediatrician, Physioterapist, Specialist Play, and staff at a local SEND school who are offering support as Ruby will need to attend this school when she teaches Nursery/Reception age.

Ruby has been assessed as having a cognitive age of 3 month old, she does not interact with her 2 sisters, to this I’ve witnessed on several occasions. She doesn’t respond to her name and has a great deal of sensory processing difficulties. On the whole, Ruby is a ‘Sensory Avoider’ she is startled by sudden movement, loud and unexpected sounds, has difficulty eating foods that aren’t soft/puréed and therefore has a very restricted diet. She is very tactile defendant, she doesn’t like physical contact and gets distressed, especially when being examined by professionals, such as a Physiotherapist, making it difficult to work with her.

Ruby is currently screams for hours on end and demands and needs around the clock care, she is also having sleep difficulties, finding it hard to settle at night.

Ruby is calmed via sensory equipment such as lights, we known this from when the family attend the ‘stay-and-play’ sessions at the local SEND school and they’ve also taken her to an ‘Autism and Additional Needs’ stay and play session locally. The huge barrier for Ruby’s family, is that the specialist equipment and toys she so desperately needs are very expensive, as you are well aware.

Ruby does not play with regular toys, as ‘Neurotypical’ children her age would, as they are not age appropriate due to her Global Developmental Delay (GDD.)

Ruby requires a calming space she can relax in when she becomes overwhelmed and goes into sensory meltdown. A place where her parents know she will be safe with toys she can not put in her mouth and hurt herself with.

As Ruby hates physical contact, her parents can not hold her to calm her, she doesn’t give eye contact and becomes distressed when doing day to day tasks with her such as feeding and changing her. As she does not sleep through the night, she will sleep for 15-30 minutes and wake up distressed, screaming headbanging to the point she is sick.

Claire, Ruby’s mum, can not work due to Rubys complex needs, and this why the family are struggling financially. All they want is to provide their daughter with the specialist toys and equipment that she desperately needs.

I’ve always been a huge advocate for the work that Family Fund have done for families, I’ve shared this via the parents support group I coordinate locally, to which Ruby’s mother is a member. My own family have had our photographs taken to use for Family Fund promotional materials.

Mum heart is literally breaking for this little girl and her family, I urge you to please re-consider your decision.

Thank you,

Nicki Perrins,

Mum to Amber and Maisie,

Blogger At http://www.spectrumgirls2.com

and coordinator of the Pershore Additional Needs Support group (PANS.) 

 

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/

Saying things we don’t mean ~ PDA series

Pathological Demand Avoidance (PDA) series.

PDA is a part of the autistic spectrum that is currently not recognised as a stand-alone diagnosis in the county of Worcestershire where I live, there seems to have recently been some diagnoses given of ‘Autism with a demand avoidant profile.’ It wasn’t until I came across information on PDA from the PDA Society via my networking with other SEND bloggers that I found out about PDA and realised that we’ve been living with it every day with our eldest daughter.

As time as gone on and I’m researched more regarding PDA, I have come to realise that I too have certain traits, although as an adult they are not as recognisable as my daughter’s traits, as over time I’ve learnt how to cope and train myself to deal with everyday demands, even though I had no idea that these feelings, in fact, had a name. One of the main traits I recognised in myself was the strange feeling I get if someone tells me to do something, especially if it comes across in quite an aggressive manner or someone tells me I’ve done something wrong and I wasn’t sure of the right way to do something. I get this awkward ache feeling at the pit of my stomach, I will hold it in as I want to appear ‘normal,’ on the surface but inside I’m screaming, I’d very much like to exit the situation and run away, but I can’t. I often hold these frustrations in until I get home, usually by holding in tears and letting it out, or in fact feelings of anger. On the other hand, if there’s something that I really want to do, such as make a hot drink for my partner and I haven’t been asked, or told to so, I get a better feeling of ‘I like doing this.’ My eldest daughter, Lou, is exactly the same as this, we have to carefully word questions and instructions in insure it isn’t perceived as a ‘demand,’ such as using a statement like “arms in your coat,” in a positive tone of voice, rather than “put your coat on.” As she will usually respond to this demand by throwing the coat on the floor and a refusal to put it on.

For this first post in the PDA series I am looking at explaining why people on the autistic spectrum may say things we don’t mean to someone who has opposing views, or someone that has just ‘told us off,’ or given us a ‘direct demand.’ It is important to remember that individuals with PDA are highly anxious and the anxiety they are feeling may come out as anger, frustration or even aggression, due to the feeling of being out of control of a certain situation. For myself, I really don’t like confrontations, I don’t like raised voices and I will do all I can to avoid confrontational situations, even to the degree where I’ve agreed with things I don’t really agree with to avoid a varying and opposing point of view.

People with PDA “don’t see anything as being their responsibility. They aren’t very good at keeping secrets and they say things that are unkind without understanding the upset these words cause.” Source: http://aspergersasdconnect.blogspot.co.uk/2011/09/pathological-demand-avoidance.html

Only this week I also read the following article by ‘The Mighty’ https://themighty.com/2016/07/what-autism-meltdowns-feel-like-for-autistic-people/

Where individuals on the autistic spectrum themselves described what a ‘meltdown’ actually feels like. When I read the following statement, I could 100% relate:

“I feel all sorts of emotions all at once and I want to run away from them all. I lose sight of what is socially appropriate and start to say things I either don’t mean or something I’ve wanted to say deep down. Whenever that happens I end up hurting someone or confusing everyone.”

This keeps happening to me now, even as an adult and it is the main cause of my anxieties, particularly social anxiety, as I simply cannot remember what I’ve said to people in meltdown mode, as I haven’t even been aware until after the meltdown that it was in fact a meltdown that I’ve been experiencing! This is such a complex thing for me to understand about myself and therefore to try and get others around me to understand is one of my biggest challenges to date. The self-awareness that I now have with this has taught me to make people aware that it is best to actually ignore me if I’m starting to say horrible things, if I’m in a stressful situation or if being challenged about something, such as what I may have written on social media. Unfortunately, some people have pressed me for answers or ‘had a go’ at me after something I said when I was mid-meltdown and there is no going back, I will say stuff that may have been floating around in my head or thoughts that I have deep down but ordinarily wouldn’t say in public, but lose all sense of filter during a meltdown and it all just comes flowing out and I simply can’t stop it.

The guilt that comes after these occurrences is intense, this time last year, after occurrences where I’d said something I really didn’t mean to I would hide myself away and be too afraid to go out where I may see the people who I have ‘upset.’ The best way forward after an occurrence like this is to just forget it and carry on and not become absorbed in analysing what shouldn’t have been said as it will just take over and it becomes very difficult to get on with everyday tasks. These occurrences are just like when Lou, will come out with some hurtful words during a meltdown and as a parent, I have to just let it all go over the top of my head. I often get responses such as “you’re a really bad mummy,” “You are so stupid,” and “I think you’re a terrible mother,” which for a child of not quite 6, is quite complex. At first these sorts of statements hurt me emotionally but after researching, I now let it go over the top of my head and don’t respond as I know it will cause even more upset and cause an arguments, which is what I desperately tell other people to do even though I’m an adult, when I say things like: “please don’t keep pressuring me as I don’t want to talk about this right now,” and “Please stop as I don’t want to say anything hurtful.”

 

I do hope that this gives a bit of insight into the reasons behind this trait that can be seen by individuals with PDA, or indeed any person on the autistic spectrum experiencing a meltdown.

For more information on PDA please visit: 

https://www.pdasociety.org.uk/

I also watched an amazing webinar by Operation Diversity where Dr Jody Eaton (Clinical Psychologist) explains about PDA in children. She mentioned that often children cannot remember what they have said or done during a meltdown. This webinar can be found here: 

PDA Webinar

Thanks for reading 😊

Avonreach Academy Trust proposed change of age range ~ my response

Last week I was given a copy of the following consultation: 

http://www.avonreach.org/ 

This is my response to the proposals to add year groups into a few local schools and the implications it will have on my family and others who attend the same school as my children.

Avonreach Academy proposed consultation – Age Range.

Dear Sir/Madam,

I have recently been made aware of the proposals to change the structure of the Avonreach Academy schools. In particularly the 2 schools of Pershore High and Cherry Orchard First, in Pershore will have implications for my children. Both of my children, age 2 and 5, are based at the Abbey Park campus in Pershore, with one in the Pre-School and the other in the year 1 class in the first school. We moved to the Cherry Orchard area of Pershore in September 2017 to a more appropriate house for my children’s needs, my eldest child is being assessed for Autistic Spectrum Condition (ASC) and my youngest has sensory processing difficulties and Hypermobility. We were turned away from Cherry Orchard first school as there was not a place for my eldest child at the school, it has actually been a blessing that Abbey Park schools could accommodate both my children as my youngest child has started at the Pre-School on site and will remain on the same campus until she reaches the end of year 7 at Abbey Park Middle school. As a family we like the idea of the Abbey Park family of schools, both of our girls thrive on consistency and familiarity and I want them to remain on the Abbey Park campus of school as long as they can.

Children in the Cherry Orchard area of the town have traditionally attended Cherry Orchard First school and then go on to attend at Abbey Park Middle school. This 3-tier system worked for myself as I was one of 4 children that came from a small village first school (Upton Snodsbury First,) and by attending Pinvin Middle school for 3 years this helped me a great deal, I simply wouldn’t have coped moving from a primary school straight onto a high school.
As you may already be aware of the volume of new houses that are going onto the new housing developments just off Station Road and Wyre Road in Pershore, it should not be the later years (years 5 and 6,) that need to be concentrated on when these children are already catered for at Abbey Park Middle, it is clearly the younger years, like at schools such as Cherry Orchard First that need to be extended, as it is the catchment school for the new families moving into the new developments, surely a priority should be extended the earlier years from Reception to Year 4, and ensuring that new families moving in can get a place at their catchment school, rather than adding on an extra 2 classes in the later years?
There is a small section in the consultation’s ‘frequently asked questions’ regarding the extra volume of parents and children to the school. As we live in the Cherry Orchard area of Pershore, we cannot even walk the same side of the school at drop off and pick up times as cars cover the street and parents waiting for the school gates at Cherry Orchard First completely cover the path and it is impossible to get my child’s buggy down through the crowds. With adding any more children to the school this situation needs to be carefully considered as it is a real safety issue.
In summary, rather than changing what we already have, why is there not a new first school being built to accommodate all of the new families moving into the area? I am under the impression that this will also affect schools such as St Nicholas Middle in Pinvin, and St. Barnabas Middle in Drakes Broughton? Our 3-tier system works well so why bring around change that will cause so much disruption? Yes, we will be like Worcester area schools with the 2-tier system, but shouldn’t we be proud of our unique system that has worked for so many children previously?
Thank you for your time,

Miss Nicola Perrins BA (hons) EYTS. 

If anyone local to the Pershore area (Worcestershire) wishes to also share their views you can also email our local councillors: 

Harriett Baldwin: harriett.baldwin.mp@parliament.uk

Liz Tucker: ltucker@worcestershire
Thanks for reading 🙂 

Are you sure you are fit to be a mother?

Only last week I had my first experience with an internet ‘Troll,’ someone for the first time in my 18 months of blogging wrote a negative comment about my personal journey and I feel that I handled it a whole lot better than when I first started sharing our journey in March 2016.
I noticed that a relevant article to my journey to adult assessment for Autistic Spectrum Condition (ASC,) was shared via a support group I belong to called ‘Mums on the Spectrum,’ which is a group of just over 1,800 mothers who are on the autistic spectrum. This was the article shared:
www.healthy-holistic-living.com
This post was shared from a Facebook page about ‘Vegetable gardening,’ which didn’t matter to me, but when read the comments a lot of the posters were complaining about why a post about recognising autism later on in life, in women was shared on a vegetable gardening page. So, I wrote a summary about my journey with misdiagnoses and how each one could be seen as traits from someone on the autistic spectrum and I also wrote how it didn’t matter where this post is shared as it is very good for awareness and understanding. A poster was complaining about individuals who “just seek a label,” and I realised that because I belong to so many supportive networks such as my SEND bloggers group, that I forget that there are still so many people out there that just don’t understand about autism, or even want to try to understand, even in today’s society and wonderful nationwide awareness campaigns from the National Autistic Society (NAS.)
The worst comment I had written back to me was:

“You have been diagnosed with all these mental health issues and still decided to have a child? Are you sure you are fit to be a mother?”

My immediate response was to justify myself and referred to the ‘Heads Together,’ campaign that is being promoted via the Royal Family members, I wanted to get across the message that in 2017, it’s ok to talk about our mental health, not like in the 90s or early 2000’s when I just felt too ashamed to talk to anyone or admit that I had such issues, even to a GP or any other professional. Therefore, I didn’t receive the appropriate help and support. I gave this individual a reason for every one of my misdiagnoses, or in the case of anxiety and depression – a co-morbid condition that had resulted from spending years and years of ‘masking’ my difficulties in desperation to appear ‘normal’ in public. I explained that:
• In 1996, at the age of 14, I was diagnosed with Anxiety and Depression – the reason I believe that I was aware more that I was ‘different’ to my peers, I felt different and I thought differently, also reminded through constantly bullying every day at school.
• In 1999, at the age of 17, I was diagnosed with OCD (Obsessive, Compulsive Disorder,) and an eating disorder which my mum has described to me that this was in fact Anorexia, although I wasn’t aware of this at the time. As a teenager there was a pressure to be thin, but my eating issues were more down to texture, which I believe was a sensory processing issue and I’ve learnt over time that this is why I prefer dry and crunchy foods, rather than soft, sticky or soft textures of food. My 2 girls are also the same. I can remember gagging on a home-made stew because I didn’t like the texture. The OCD was down to a desire to keep things in order to have control over some aspect of my life as I felt so out of control at school, in that I felt I was being watched and picked on at every opportunity through people that didn’t understand me and would highlight my differences as if I should be ashamed of myself. At 17 I liked straight lines and absolutely every single item in my bedroom would have a specific place and if these items got moved I would know and move them straight back into place. I have also been specific since the age of 17 where my personal items are, and I will check every so often if I have my keys, purse and phone in my handbag as I have a fear of losing them. When completing my online course on ‘Understanding Autism,’ I learnt that OCD can be a co-morbid condition alongside Autism, also that I love to keep things in a routine, and if that routine changes It causes a lot of anxiety. The National Autistic Society (NAS) states that: “Obsessions, repetitive behaviour and routines can be a source of enjoyment for autistic people and a way of coping with everyday life.” Source: www.autism.org.uk
• In 2008, at the age of 26, I suffered a Psychotic Episode, one of the scariest experiences of my whole life. Mind – states that: “Psychosis (also called a psychotic episode) is when you perceive or interpret reality in a very different way from people around you. You might be said to ‘lose touch with reality.” The one thing that was very noticeable from this episode was my very high level of paranoia. This happened just after I got married, a huge event to plan, where everyone’s focus for that 1 day was on me, I was working at a high level at work, full time and living away from my parents – a 4 hour drive away. On reflection planning a wedding, on the wedding day and my level of work at that time all required a great deal of ‘masking,’ appearing on the surface as ‘Neurotypical,’ and my brain just one day said, “I’ve had enough,” cue sleepless nights and my body not agreeing with Fluoxetine and the GPs in that area not knowing my background, and not enough awareness of how females on the autistic spectrum present, another missed opportunity to be properly diagnosed. This Psychotic episode lead to the eventual diagnosis of Bi Polar disorder, which the Psychiatrist I saw back in Worcestershire when I returned home, said that it was in fact a ‘severe episode of depression,’ and not in fact Bi Polar, but to this day I still have this ‘label,’ on my medical file. When I ‘mask’ as a female on the autistic spectrum, this is very taxing on my brain and I will suddenly break down and can no longer cope or see things rationally.
• In 2015, at the age of 33, I was diagnosed with Postnatal Depression which a health visitor had failed to spot and this wasn’t picked up until 5 months after the birth of my second child when I took myself along to the GP as I knew something wasn’t right. And later, in 2016 at the age of 34, I still have a diagnosis of anxiety and depression, but more anxiety on my file. To date I honestly believe that this current diagnosis is a result of ‘masking’ my difficulties for so long and not being listened to or believed in terms of my own daughter’s autistic traits in the home environment, having 2 children with additional needs, fighting for support, attending all the appointments, etc all takes its toll on me.

With all of this swimming in my head, I hope that my upcoming adult assessment for Autistic Spectrum Condition (ASC,) will show that a diagnosis of ASC would be the answer to the struggles I’ve had from childhood, and especially from the teenage years and realisation of being ‘different.’
I therefore wanted to justify my ‘choice’ for having children and I wanted to tell the original poster that asked if I “should really be a mother?” I thought about the 1,800+ group of mothers on the autistic spectrum group where I am a member, I thought about how all of these mothers would also feel offended by this negative comment. We cannot help the way our brains are wired, and I started to think that just because Autism is often seen as an ‘Invisible’ disability, would the poster also think that people who use a wheelchair for mobility shouldn’t be parents? Would they also be in the belief that parents who are blind or deaf shouldn’t be parents? I’ve also heard of instances where friends who have children with more severe additional needs have also been told that they “shouldn’t be parents.” Who is to tell us if we are or aren’t fit to be parents? The midwife during my ‘booking in’ appointment? The first person I saw regarding the pregnancy, I was honest about my previous ‘diagnoses’ and I was monitored throughout the pregnancy but not once was I told that I “shouldn’t have this baby.” I didn’t require a specialist appointment with a psychiatrist all throughout the pregnancy. Mother’s on the autistic spectrum are very good mother’s we have the same right as ‘Neurotypicals’ people to become a parent. Not once have I had a ‘meltdown’ in front of my children, I hold it in until they are asleep. I eat well, I do order certain items but becoming a parent has helped with the OCD more as I simply don’t have the time to keep things in the same order as they once were! I don’t stim in front of my children, (stimming or self-regulatory behaviours,) I rub my hands together once they are in bed if I need to. But even if I did stim or meltdown, it wouldn’t make me a bad parent, I shouldn’t feel ashamed by being the person I am. I have had 13 years of working with early years children and why shouldn’t I have my own children? In terms of my own social anxieties, I have always been aware that I want my children to interact with others, even if I struggle socially I have still taken my daughters to toddler/stay and play groups and it’s helped me to mix with other parents.

When I found out I was going to have a child, I had no idea at that point that I could even be on the autistic spectrum and therefore my partner and I didn’t have the discussion on any implications this may have, however, I have always maintained that my children have only improved the way I am and helped me with self-realisation and accepting myself. The main aspect that I’ve learnt is how to care for others before that of myself, I had practice in this area when working in childcare, but I was very much thinking about myself before I had the children. I have learnt that their needs come before mine, I still have to look after myself in order to care for them in the best way I can, but I will now think about their needs before my own, which is a huge step for me. 

Thanks for reading 🙂 

My ‘Rainbow Brain.’

I didn’t even realise that my brain could be described as ‘Neurodiverse’ until almost a year ago. Even though I have always felt ‘different’ even as a child.

I have a Love-Hate relationship with my ‘rainbow brain’ as I like to refer to it! Sometimes I can be sailing along quite nicely, feel OK and confident and then BANG something goes wrong and the ‘red mist’ descends, and then I ‘explode’ like a volcano!

 

The reasons why I love my rainbow brain:

• Because I have finally learnt to embrace my ‘differences,’ rather than being a ‘sheep’ and copying what others say or do, I had spent so long referring to myself as ‘the weird’ girl, but now I rather be myself than a clone of others, or how people ‘think’ I should be.
• Because I have learnt to ‘find my tribe,’ I have support groups online to thank for this, belonging to a group of ‘Mums on the Spectrum,’ where you can write anything and lots of people will report, relate and advise.
• Because I have the ability to ‘hyper-focus’ on particular topics or interests, and I find a lot of joy in this. I love photography, seeing patterns in the environment and I love my ability to focus on research and study and the buzz I get from learning. I love finding out facts and information, which is something that I have carried from my childhood.
• Because I’m completely dedicated to my children, I never thought I could think about 2 other people more than thinking about myself, I learn through my children and they’ve taught me to adjust from self-thinking and self-being, although sometimes I still find it difficult to tap into sometimes. My rainbow brain has the ability to tap into 2 girls who also have ‘rainbow,’ or Neurodiverse brains. I feel things like they do and see things like they do, it is hard to get this across to some people but I am trying!
• Because of my brilliant and long term memory – I see everything in pictures and memories will crop into my head with the ability to see that scenario or event as it happened, the colours, what people were wearing, etc. I can remember a lot of happy memories from when I was a child. I also visualise people’s faces.

 

The reasons why I hate my ‘rainbow brain.’

• Because it allows me to ‘overthink’ I’d love to have the ability to ‘under-think’ (if that’s even a word!?!) I can have a conversation one day and still be worrying that I didn’t say something right 2 weeks later!
• Because I find some people beyond confusing, I tend to respond well to people who are straightforward and tell me exactly how it is, people who are ‘woolly’ and don’t tell me things straight are confusing! People, including family members, have taken me off their Facebook friends list, I’d like to know why, if you don’t like me or I’ve done something to upset/annoy sometime I just wish they’d tell me straight, rather than just ignoring me and remaining ‘secretive,’ I like to know where I stand! If I know I can then deal with it and move on! Rather than just obsessing over it for weeks! Cue ‘obsessive personality!’
• Because I have an obsessive nature and that I find it very difficult to ‘let things go,’ often obsessing for days, weeks, months, even years! If I feel ‘wronged’ about something I will go on and on about it! And this usually ends in me writing a long letter or email about how wronged I feel!
• Because I HATE to be wrong! If I get ‘told off,’ or if someone doesn’t see things from my viewpoint I tend to argue my point and then shut down to avoid any sort of confrontation and then I get what I call ‘red mist,’ where I just feel angry and find it very difficult to calm down!
• Because I don’t forget! Sometimes I wish I could wipe certain memories as they often come back in a ‘flash-back.’ I can remember the look on the faces of people who teased or bullied me when I was a child, I often focus on a negative feature that they had and wondered why they were teasing or bullying me when no one is perfect! Like the boy with the big, googly eyes, so big and starey that they could take over his whole head, the girl who told me I was ‘fat’ and needed a bra when I was 11, yet a tin of ‘Slim Fast’ fell out of her bag, and the boy who everyone seemed to love, yet had these big flarey nostrils that could almost breathe fire! I wonder if these people grew up to be the same, making themselves feel better through making someone else so unhappy? 
• Because I find it hard to start a task and then find it impossible to stop doing it! Sometimes I will put something off and procrastinate but when I eventually get around to doing it, then find it difficult to leave the task unfinished! I often am up past 12am as I am a night thinker, however not so great when your children get up at 5am!
• Because my brain can make me so paranoid, my brain has needed Cognitive Behaviour Therapy (currently on a waiting list for more,) counselling and life coaching. Sometimes life is hard and tasks and events that ‘Neurotypical’ people may find not so catastrophic, I find incredibly difficult. This is why I do look back and sometimes wonder how I’ve just been ‘allowed’ to go on and make many mistakes as I’m such a poor judgement maker and often feel judged for making the wrong decision, yet nobody actually guides me and steers me the ‘right’ way. 

However difficult things can be sometimes, I cannot change my rainbow brain, I just have to embrace it and use it to its best abilities and just try and learn coping mechanisms for those negative aspects. 

We survived! (Week 1 of the school holidays)

Feeling a bit like ‘Bear Grills’ but armed with a visual timetable and taking a lot of deep breaths! We have ‘survived’ the first week of the holidays, (or ‘winged’ it!) 

We haven’t been very blessed with the weather this week (typical start!) And we’ve had to do a lot of indoor activities as both my girls are outdoor fans! We had planned to get out for walks and the park, especially to burn off energy but sadly, struggled. 

Keeping our fingers crossed for better weather next week! 

On Monday we established some house and outdoor visit ‘House Rules,’ where I sat with Lou and she helped to come up with some rules such as “we are safe inside,” and used the example of when she launches herself  off the furniture! 

If there is screaming at the top of her lungs (there has been a fair amount this week!) We refer back to the rules which she helped to create, I find that Lou does like rules and boundaries and the fact she helped to create them has given her back some of the control that she thrives on. 

Every morning Lou has arranged her visual timetable with what is happening each day, this has reduced some of the element of uncertainty and we refer back to it if she is getting anxious about what is happening next. 

The activities we have done this week were: 

1. Sensory Dough – we added some drops of Lavender oil to the ingredients, Lavender has been used in our house in the past few weeks in the form of burning oils and room spray as it has had a calming effect on both girls, especially Lou. I realise I had run out of blue or pink colourings to make the dough purple so we added orange instead! 

2. Rainbow Cookies – Lou loves the sensory element of cooking and used her rolling and cutting skills to make the cookie shapes, they came out quite big! 

3. Free-choice craft and ‘Shopkins Shaker Maker.’ Lou loves a bit of craft, I’ve always found it calming for her and her concentration improves, she thoroughly enjoyed painting her ‘Shopkins’ figures that she made from a ‘shaker maker’ kit she had for her birthday. Lou also enjoys selecting her own craft materials from our craft box and creating something of her own choice. 

Let’s see what week 2 will bring! 

Why can’t I just feel settled?

So the best way for me to get my frustrations and anger out as usual is to write it all in a blog post! I’m sure I’ve been very annoying lately on my personal Facebook profile as I’m continually ranting about our current housing situation! This is because I feel so wronged and I’m trying to ensure that I do the very best for my children.

Some of what I describe in this post also relates to my current assignment for my course: ‘Understanding Autism,’ as I’m learning all about the legislation that protects people who are on the Autistic Spectrum.

I want to share this experience in the hope that other people do not have to go through the same.

One of the most surprising things about me is that I just can’t settle in terms of finding appropriate housing, considering that I’m going through an assessment for Autistic Spectrum Condition and I don’t usually cope very well with too many changes, I have moved house now 17 times since the age of 18! (This does include 3 different places whilst I was at University.) I am absolutely rubbish at making decisions, I never quite know what to do for the best, and it’s even harder now I have my 2 children to think about as their safety and happiness are paramount. My own mum describes my situation as the ‘fight’ or ‘flight’ method when things start getting tricky for me to cope with.

In the most recent of house moves, I’ve moved into the nearest city to be closer to where I worked but then the house got sold so we have to find somewhere alternative, we then moved into a new build flat in a local town but this was a first floor flat with no garden so Lou really struggled to burn energy and I was struggling so much with getting 2 children and a pushchair down a flight of stairs. We then found what we thought was the perfect house in a village location, complete with village school, park and green space 5 mins walk and my parents 5 mins away via car and walking distance to the nearest town, (well it takes me 40 mins, and I’m used to this as I walk everywhere!)

We had no problems really at all for the first year of living here, until around 6 months ago the neighbouring house (that’s attached to our house) became overcrowded. A house full of adults and confrontational ones at that! People lost jobs, being in a confined space and presumably bored, they argue and swear at each other constantly. They swear, every other word, loudly in the garden, Lou is currently being assessed for Autism, if she hears new or different words or phrases, she will copy and repeat over and over. I guess I am old fashioned in my views, but I simply cannot have her going into school and repeating phrases that I didn’t hear until I started high school! They also fight, and shout in the street, a month ago a fight broke out and someone banged my door very loudly, frightened that someone would get hurt I did call the police but they seemed to be talked down as seems the case a lot of the time, sadly. As I have described before in many previous posts, my eldest daughter Lou, displays a great deal of PDA traits (Pathological Demand Avoidance) and also ADHD, her high anxiety causes her to become very frustrated and often volatile. By hearing confrontations only meters away and through our walls, this is saying to her ‘it’s ok’ to be like this, whilst myself and Lou’s daddy are doing everything in our power to keep her calm and practice relaxation techniques.

There is 0 respect and 0 consideration, these people are disrespectful to all of the families in our row of houses, they stand in their garden after 10pm at night and have very loud conversations right under the window where my 2 girls sleep, often waking them up. When you have 2 children that find it difficult to fall and stay asleep this is beyond frustrating! But my voice is a lone one, no one else seems to back me up, bar one other resident, possibly in fear of repercussions. Since we started experiencing issues with these people we’ve had 2 visitors to our house – my parents – this tells me that we are being isolated even further than we already feel, and this causes me so much stress at the moment, especially as I feel that my children can’t invite any friends to our house. Oh and I forgot to also mention the Cannabis fumes that float into our home on a daily basis so much that we cannot have our patio doors or the girls’ bedroom window open as the rooms would fill with the fumes.

Oh and one of the most difficult things for me to get my head around is that the lead tenant of the household works in a local school in an Autism base! Surely this person should realise the effects of Anti social behaviour on people on the Autistic Spectrum? You would think? I certainly would want my child going to this school! At the very least I would have thought that this person should be aware that both of my children are very wary of loud noises.

So the housing agency we rent from asked me to keep an ‘Anti-Social Behaviour’ diary, which I have done since March 2017, like I haven’t already got enough on my plate! And just in case I may be making it all up! Then cue a visit from our local housing warden, which I have to admit was the most awkward interaction that I’ve had for a very long time!

The ‘warden’ (as I’ll refer to this person as for the purposes of this post,) proceeded to tell me that my complaint was “far too long” that I’d written about what we’ve been encountering as a family. The Warden sarcastically (I think) said that:

“By the time I’d printed off your complaint everyone else in the office had gone home.” On another day I may have found this funny, but not today when we were talking about a serious situation. So for the rest of this part of my post I will bullet point how helpful the ‘warden’ was.

(I did try and explain that I’m a blogger and writing is what I ‘do’ and that people on the ASD spectrum will often include all the details they know in fear of missing something out, that could be a vital piece of information.)

• 60% of the conversation we had over the span of an hour was filled with jokes, everyone needs a laugh now and again, but again, for a serious matter I found it difficult to understand the warden’s jokes, and by the time my mum had explained them to me, they were far from funny! My mum (sitting in on the conversation, and glad I preempted this,) attempted to explain that “my daughter doesn’t always understand jokes.) But no – unfortunately no understanding there.
• “I’ve had much worse” and “other people have it much worse than this.” The Warden, in an attempt to make me feel better about the situation unknowingly made it worse! By proceeding to tell me that “only last week someone tried to kill me.” And that “in other areas they have it much worse than this.” Leaving me with the feeling that I don’t really wish to stick around to allow it to get this bad! For me it is difficult to see the outer world when I’m under great stress in my little world – within my family and surroundings, it may be the case that situations are much worse in inner city areas, but we are based in a small village and I didn’t feel that my situation and feelings were taken seriously, I didn’t need to have the worry placed into my head about how worse it can get.
• The warden referred to ‘my anxiety’ and ‘seeing things differently,’ which, yes I do, but I felt belittled in the situation that I feel very unhappy about, I don’t think any family with young children should have to put up with such anti-social behaviours, regardless of whether they have anxiety or not.
• The warden said directly to me: “What have they done?” I referred to the 2 sides of A4, (the ASB diary,) that I’d been asked to keep, so I replied: “Here, it’s all written down.” To which the warden replied: “No, what have they done to you?” My mum had to explain that the warden meant physically, what have they done, but physically I haven’t been attacked, why should it even have to reach this point? I cannot even stand to have other people, (other than close family members,) touch me, let alone stay around long enough to let anyone physically attack me, the warden said that the only way an ASB complaint would be taken seriously was if I was physically attacked! How could the warden even put this in my head that this could happen? Making me even more fearful. So banging loudly on my door and running away and having confrontations in the street shouldn’t be taken seriously? What about intimidation? What about the mental affects? It doesn’t always need to be physical.

Now I refer to the legislation that I’m currently learning about in my ‘Understanding Autism’ course, I am very grateful I had my mum present during this meeting to act as an advocate, to aid my understanding and decipher the ‘hidden meanings’ and sarcasm that this conversation was sadly full of. After this interaction I have since learnt that:

The Autism Act 2009: “informs local authorities, what actions should be taken to meet the needs of individuals with autism living in their area.” It states that local authorities:

“should provide autism awareness training for all staff.” 

(Source: NCFE Certificate in Understanding Autism Workbook 1.)

If the warden had this awareness training then they would have known:

• Not to fill 60% of time out of the hour with jokes.
• Not to criticize the length of complaint given.
• Not to state what is happening in the cases of people outside the immediate environment.
• Not to use anxiety as an excuse for experiencing problems with the housing situation.
• To listen and be respectful and be careful not to put extra stress onto the person via ‘hidden meanings’ in the conversation, to use clear and concise questioning.
• Not to use sarcasm in the conversation, as it can make the person feel belittled and will shut down.
• That people with ASD are often affected by loud noises, such as people shouting and confrontations.

 

 

People with mental health difficulties, and disabilities, such as ASD/ASC experience this sort of lack of awareness and understanding everyday. I want to do my best to combat this so that other people don’t have to experience the same as what I have.

And I still don’t know what is happening with the housing situation, we have a view to move, even though we are not the ones causing all of the issues, but I will do everything in my power to keep my children safe, there is also the issue that Lou is finding sharing a bedroom with her younger sister difficult and should really have her own specified space to allow her to calm in her own environment and Moo should have her own room as her ‘safe zone,’ where she can retreat to if Lou is having a ‘sensory overload.’ The uncertainty is unnerving, but watch this space.

Chewigem Toy Remote

Using the Chewigem toy TV remote. 

My eldest daughter, (5) has been using Chewigem products for over a year now, she has the purple Eternity necklace and light blue twister bangle (Chewellry.) She has used these products because she gets very anxious about changes to her routine and often needs reassurance, she picks away at her nails and the Chewigem Chewellry items help to keep her calm, she even takes these items into school.

“CHEWIGEM® is a UK based, chewable jewellery designed to meet the needs of those children and adults who need to chew. CHEWIGEM ® is a non toxic, stylish and effective at meeting this need.”

Source: https://www.chewigem.co.uk/our-story/

My youngest daughter (2) displayed a need to chew from a baby, she has always been an oral seeker and will get distressed if her dummy is taken away, and her item to chew removed. From the age of 18 months, she began eating inedible items such as mud, sand, chalk, stones and playdough. In June 2017 we shared our concerns with a health professional and she is now being assessed for Pica (“Pica is characterized by an appetite for substances that are largely non-nutritive.” Source: https://en.wikipedia.org/wiki/Pica_(disorder)

I was therefore keen to try an alternative item that was safe for her to display her need to chew. I wondered if my daughter would respond to the same items as her older sister with the Chewellry, however she wasn’t keen. My daughter likes to chew on our TV remote so when I discovered that Chewigem offer a Toy TV remote, whilst visiting the Chewigem stall at The Autism Show, I wanted to give this a try. The toy remote is:

“Made of the same soft, flexible non toxic, washable silicone as all our stuff. Ideal for those who will not tolerate a necklace or a bangle being worn. Robust items that can withstand moderate to aggressive chewing.” 

Source: https://www.chewigem.co.uk/product/toy-remote-chewigem/

 

We have noticed that our daughter had taken to the remote straight away and even used it as a pretend phone! So far we have also noticed a reduction in the amount of dummy use and also the amount of inedible items being put into her mouth. I recently found that you can buy an attachment that can enable the chewy remote to be fixed to a pushchair, etc.

I would highly recommend Chewigem products to anyone.

You can order Chewigem products through Website: www.chewigem.co.uk 

You can also visit the Facebook page: https://www.facebook.com/chewigem/

 

Thanks for reading.