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.
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:
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:
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.
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.
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.
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:
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.
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.
I’ve read a lot of articles and posts over the past year, most of which are helpful and informative, but once in a while I come across something that worries me and I have to avoid reading these type of articles to prevent further ‘overthinking.’
I recent read such as article that talked about how Mothers on the Autistic Spectrum are more likely to be accused of fabricating their child’s difficulties.
One further aspect I read about was that children’s services were known to have been investigating cases of fabricating a child’s Autism without parents having the knowledge that this was actually happening. I was so upset to read this, the day after I went into ‘shut-down’ mode, wondering if I should even carry on with Lou’s referral to the Autism assessment team. As I have mentioned in previous posts, the passion that drives me to fight for support for my daughter is to prevent her from suffering with mental health difficulties as I have. I want her to be supported in any way possible, as early as possible.
The problems we face as a family in getting certain messages across to the appropriate sources, is that Lou ‘masks’ her difficulties, except at home where she is most comfortable and with the people who she feels unconditionally love her, us – her parents. We recently discussed that only myself and Lou’s dad have seen the true extent to her anxieties, frustration and anger and full traits of Pathological Demand Avoidance (PDA.) In the past I have videoed her ‘sensory overloads’ or ‘meltdowns’ and voice recorded in hope to actually be believed that these events are happening. I hate to see my child struggle and I struggle to comprehend why anyone would want to believe that this could be ‘made-up.’ I’ve also mentioned in previous posts that even though we have a low income we are desperate for recognition and support for our child, not for financial gain, again this upset me to think that people may think this of parents. We do not qualify for DLA, and, at the moment I’m too exhausted to try again, just looking at the form gives me a huge headache! If our children need any extra equipment we’ve provided it as they’ve needed it, even if it meant we have to scrimp and save for it.
As her mother, I can sense when she is uncomfortable about something in terms of sensory issues, for example, I can tell if an item of clothing is bothering her just by knowing that I also experience irritability with seams and labels in clothing. I can also tell from a certain look on both of my children’s faces if they are about to hit out or throw something. I have tuned into their triggers and to an outsider this may not be seen.
Ironically, the day after I read the article on fabricating I received a letter from our local assessment team stating that they will be sending out a professional from their Complex Communication Needs (CCN) Team to assess Lou in school. For this I am grateful that we have been listened to, but it also puts the doubt in my mind that they will actually see Lou’s full extent of traits in this environment, I can only hope that my views as a parent, and closest person to Lou are taken into account and believed.
My next question for myself will come once we receive news if Lou will be kept on the assessment path or discharged, I hate to think of things too far before they happen, but I’ve made a mental note to myself not to appeal the decision made if it means that Lou is discharged from the service. And do I then use the pot of money that I’m continually saving for a Private Diagnosis or just leave it, but then have the worry of watching my child suffer further as the pressure continues to rise throughout school? There are so many people out there who cannot fund a private diagnosis so should why should the conventional route be this hard? Will girls who mask, and suffer in silence, such as I did as a child in the 1980s and 1990s, produce another generation of ‘Lost Girls,’ https://spectrumnews.org/features/deep-dive/the-lost-girls/
I have, until recently, held back concerns I had regarding my youngest child’s sensory issues, I believed that it would be thought that if both children were presenting with difficulties, then it must be my parenting skills, even though the sensory issues she is displaying are different to those of her sister’s, such as wanting to chew and eat inedible objects such as sand, mud, stone and chalk. We recently found out that Moo is also Hypermobile, she has been referred to Orthotics and Physiotherapy and this being found has taught me that the sooner any difficulties are identified then we can hopefully try to gain support for her. After going through the system a 2nd time, I’m now more familiar with how things work and I’m hoping that things are put into place before Moo starts school. I’ve done things differently this time around, as I’m now more familiar with the services to access. I’m now taking Moo to a ‘Stay and Play’ session at a local Special Needs school, where I can ask the advice of staff. I have also contacted our local ‘Early Years Inclusion Team,’ at our local County Council and I have chosen an Early Year’s setting that I feel is the best place for Moo and where I feel there are good links with the local Special Needs school where an ‘outreach’ service is offered for those children who are identified to require this support. They also offer ‘split placements’ where a child can attend some sessions in a mainstream setting and the rest in the Special Needs School’s own Nursery. I found the staff here to be incredibly intuitive to spotting Moo’s triggers for identifying when she is about to hit out at other children, just from the look on her face! They also taught her a technique for placing her hands onto her knees when her hands go out to hit out.
So for now I’ll just concentrate on what I’m doing, chasing up the appointments and test results and writing blog posts and updating my Facebook and Twitter blog pages and will try to put the worry of what other people think about me to the back of my mind.
Both of which explain the main features or ‘traits’ of PDA, so for PDA Action day (15/05/17) I decided to share how PDA looks in our household.
Avoiding negative phrases and ‘demands.’
The worst response I can give when my daughter, Lou (5) asks me a question is “No.” In our household saying “No” outright usually results in objects being thrown, shouting, screaming, hitting, kicking and could result in a total meltdown.
From researching PDA over the past year, I realise how important it is to think carefully about how we word every phrase for our daughter, it’s taken so long to get used to and you have be quick-thinking and very often think ‘outside the box.’ Lou has a lot of obsessions around food, she repeatedly states to us that she’s hungry, she never feels full. If Lou asks for something to eat and she’s already had plenty to eat only minutes before, we simply cannot reply “No,” nor “not now,” as I discussed previously, this will result in a great deal of anger and frustration and things get thrown! We have to use a visual chart where we point to the meal and time of day, Lou removes the snack card and we point to the next meal, e.g lunch and say: “next time we have food is lunchtime.” We use minimal language and often have to repeat the same words to aid her understanding. Not saying “No” is a very difficult thing to do! Having to think of what to say before you say it every time takes a great deal of my ‘brain energy!’
Lou will avoid any demand put onto her, getting her dressed in the mornings often takes both myself and her Daddy, we cannot simply say “get dressed,” as the answer will always be “no,” or she will shout replies back such as: “No you silly Poo,” or “you’re a really silly woman,” she has even told me: “You’re an awful Mother,” (I have no idea where she’s heard this phrase!) It took me a while to get used to these ‘come-backs,’ but I do have to let these ‘outbursts’ go over the top of my head to avoid ‘fuelling her fire’ even more. We have to use choices for absolutely everything:
“Trousers or T-Shirt” this often still results in “No, I’m not getting dressed today,” when we have to give the choice of:
“You do it or Mummy/Daddy do it.”
It can often take over 30 mins for Lou to be fully dressed as she also likes to run around the house to see if we can catch her to get dressed!
This is also the same when it comes to tidying up, we have to give a lot of praise when Lou does tidy up and in the last month I can only remember this happening once, we’ve modelling tidying, but the demand of doing it is just too much for Lou to cope with. We use visuals and ‘Sign-a-Long’ for ‘tidying,’ and other daily routines. These sometimes work with Lou, but also sometimes don’t! We also have to be careful with wording and giving praise as Lou doesn’t cope very well with actually receiving praise, will not know how to handle it and often do something like throw all of the toys around the room in response.
Lou struggles with sudden or unexpected changes to her routine, even as an adult I am exactly the same! We recently had to leave our holiday 3 days early as Lou had got chicken pox, we had to get the train home 3 days early and we’d planned to take both girls to a theme park for the day, we had previously prepared Lou for this day out with talking through it and visuals of what would happen. When we had to tell her that she couldn’t go to the theme park as she had chicken pox it was like a volcano had erupted! Lou shouted all the way walking to the train station, “adventure park Mummy,” and repeated it and then would say things such as “this place is stupid,” “silly train, silly place.” She also refused to move and sat on the pavement in the middle of the town, in protest! This made me so disappointed for Lou, and the change in the plans had set me off and therefore Lou’s Daddy had to deal with us both all the way to the train station! It took both myself and Lou a good hour or so to finally calm down and adapt to the changes.
I find it confusing as to how Lou cannot process demands yet she places a lot of demands onto myself as her mother and main care giver, and also her dad. She will say things like “get my snack now,” “I said get me it NOW.” I found this difficult to cope with at first but after reading up on PDA I realise that:
“People with Pathological Demand Avoidance (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.”
I hadn’t pieced together that the anger and frustration I see in Lou is actually all down to anxiety and this manifests more when she doesn’t feel in control of situations.
There are so many more things I could say about PDA, I’m still learning more every day. It’s exhausting and I feel it’s quite catastrophic, but what we have to do is take positive steps to ensure that our daughter is helped to cope in the best way possible.
My hope is that PDA does become more widely recognised as I hear so many different experiences where PDA is recognised in certain counties in the UK and yet in others professionals refuse to recognise it.
PDA certainly does exist, and we live it everyday! Brilliant sources of information on PDA:
So after having my initial adult ASD assessment on 13th April 2017 and it going to a panel to review, I had the feedback letter through the post today.
On the day I filled out questionnaires whilst in the waiting room and then had a 1 hour and 15 minute discussion based on my answers.
Firstly the report went through a lot about what I had discussed on the day in terms of my childhood, how I am socially and certain ‘traits’ such as ability to handle changes, collections of items and sensory difficulties. Many of these aspects I had included in the paperwork that I’d sent in to the practice because I knew that I was likely to freeze on the spot when being questioned directly. What this meant is that I was questioned and guided by what I had aleady shared before the day of the assessment.
The main thing from this feedback report was reading the results of the ‘Adult Autism Quotient (AQ) questionnaire,’ which measures behaviours, feelings and experiences associated with potential ‘Autistic Spectrum Conditions.’ Individuals with ASC typically score 32 or higher and I scored 47.
I then read that:
“The AQ is a screening tool and does not provide enough information for you to be given a diagnosis, but a score of more than 32, then taken alongside the information discussed, suggests that further assessment of an ASC diagnosis is warranted at this stage.”
These are the recommendations given in the report:
One thing I have noticed is that the term ASC is now being used, when I originally received my referral letter it stated it was a referral for an adult assessment for ‘Asperger’s Syndrome. ‘ Since I began blogging in March 2016, I’ve used the term ‘Autisitc Spectrum Disorder’ (ASD) and reading this on a report does make me question if I’m now using the ‘correct’ terms!
I’m fully expecting the journey to a possible diagnosis to take a while longer, I felt happy and sad yet again at the same time, but again a great sense of relief, all those years of doubting myself, questioning who I was, telling myself I was ‘different’ was for a huge reason and to be on the path to having this clarified for me is so liberating.
It is sad though, that my process for adult assessment is so much more straightforward than my own daughter’s, since January ’17 I’ve not really known what is going on in term of Lou’s assessment, no word of any assessments happening in school, no information. And to think that without understanding and researching regarding my own child, I’d have never have found out about myself.
My advice to anyone wondering about themselves being on the spectrum is that it’s never too late, try the AQ questionnaire and take it to your GP.
I will now wait for my next appointment and continue to share my journey 🙂
It was only a few months ago that I even heard the following terms:
After researching I found that the terms ‘Neurotypical’ and ‘Neurodiverse’ originated in the 1990s, but somehow, like other things had passed me by!
These terms are often referred to when people are talking about Autism, or Autism Spectrum Disorders (ASD) or as some like to refer: Autistic Spectrum Conditions (ASC.) However the terms also refer to:
“ADHD/ADD, dyslexia, bipolarity and other neurotypes as a natural human variation.”
I therefore decided to create the ‘Celebrate Neurodiversity’ logo using the Neurodiversity infinity symbol. I am happy that this symbol displays rainbow colours, as it represents the spectrum of ASD and diversity, as I definitely know that no people with Autism are the same. And we are also big fans of rainbows in our house, and what they represent – after the rain, there is sun and then a rainbow 🙂 It celebrates the positives of our diversity, what some people may view as a tragedy, I see as a celebration of:
A “neurological diversity as inherently pathological, instead asserting that neurological differences should be recognized and respected as a social category on a par with gender, ethnicity, sexual orientation, or disability status.”
“view autism as a way of life rather than as a disease and thus advocate acceptance over a search for a cure.”
I don’t agree that Autism is ’caused’ by vaccines, or bad parenting, I do not believe that my daughter will “grow out of it” and I know this because at 34 I’ve never grown out of it, just learned how to cope and how to accept myself for who I am. I also don’t believe that being an “anxious mum,” makes any difference! My anxiety is only made worse by people who don’t believe what I am trying to get across!
A fellow SEND blogger wrote a post for the Firefly Community about all of the things that parents have been told about their children, it’s very opening and I can relate to many of them, sadly.
“The “acceptance perspective” endorsed by the movement is a view that autism is not a disorder, but a normal occurrence—an alternate variation in brain wiring or a less common expression of the human genome.Advocates of this perspective believe that autism is a unique way of being that should be validated, supported and appreciated rather than shunned, discriminated against or eliminated. They believe quirks and uniqueness of autistic individuals should be tolerated as the differences of any minority group should be tolerated.”
We want to celebrate our Neurodiverse family, even though there are many challenges, we are all about the positives 🙂
I have noticed her sensory seeking since the age of 18 months, she has SPD (Sensory Processing Disorder) and Hypermobility, and currently being assessed under the ‘Umbrella Pathway’ which is the ASD assessment for the area where we live. Lou also displays traits of ADHD and PDA (Pathological Demand Avoidance,) although I do wonder if the ADHD traits we see are all part of her SPD Sensory seeking, but her Paediatrician has said that they will assess her for ADHD when she is 6, so a year to wait! I have no idea how long the ASD assessment process will take, someone told me approximately 2 years! But we shall see! It is more difficult in Lou’s case as she ‘masks’ her difficulties at school, bottles up her frustrations and sensory overloads all day, and then ‘explodes’ like a shaken up bottle of pop once she reaches home. I am hearing more examples of how Lou is struggling more now the pressure has upped in her first year at school, she thrives on routine, but likes to do things on her own terms, so the free-flow system that Early Years classrooms allow, do suit her best. I do wonder how she will cope with the challenges of a year 1 classroom and SATS eventually! Lou is showing more anxieties now, she requires ‘fiddle toys’ to concentrate, and she’s been picking at her nails which require medical treatment.
Lou has had genetic bloods taken and in August 2016, we were told that she has a genetic anomaly of “unknown significance.” In October 2016 both myself and Lou’s daddy also had genetic bloods to check if this anomaly is genetic or unique to Lou, the bloods were sent away to Birmingham and we’re still waiting for the results.
Lou is funny, she likes to make people laugh, she is fantastic with numbers and her writing is coming along, she is the master of ‘messy play’ and sensory seeking! Her memory is fantastic and loves learning facts, her current favourite TV programme is called ‘Do you know’ (CBeebies) where children can find out about how things are made and how things work. She has a huge special interest in ‘Shopkins’ and the ‘Trolls’ from the movie.
Moo is still so young, I’ve been noticing some sensory issues and seeking with her for a few months now but I’ve been worried about sharing them as I had such a negative experience with Lou, in terms of my parenting skills being blamed for her difficulties. However, I’ve now contacted the same health professional that knows all about Lou’s history as I am aware that the earlier the support is put into place the better.
Lou went to our local hospital’s children’s clinic this week and it was found that she is hyper mobile just like her sister. We have been noticing since she starting walking at 15 months, that she walks with a slight bend to her legs and her left foot turns in and she is tripping over frequently. She has now been referred to Orthotics.
Moo is already such an oral seeker, she wants to chew on items constantly, she gets very distressed when she cannot have access to something to chew, she will put items such as mud, sand, stones, crayons, and Play Dough into her mouth to chew on. We have to ensure that Lou’s Lego and beloved ‘Shopkins’ are put out of reach! She also likes to wear her coat and often hat indoors for hours, she thrives on constant contact, especially to me – which is the opposite to her sister! One of the most recent signs I’ve noticed is that Moo will place her hands over her ears when the hairdryer or Hoover are turned on and we recently went to the supermarket and she heard a high pitch beeping sound and got distressed and held her hands over her ears also. If her older sister is screaming, Moo will shake and literally climbs up my leg for comfort.
Moo is also naturally funny, she is very loving and thrives on cuddles, she will place my hand onto her tummy to squeeze her for comfort, her speech is coming on a treat and we adore her curly red hair! She definitely is a girl who knows what she wants! Moo loves ‘Bing’ Bunny from CBeebies, Teletubbies and is a huge fan of ‘Mr Tumble,’ she is now using a few Makaton signs from watching.
Mummy (34) is the one who sat in a talk on Autism in September 2016 and thought “that’s me!” I used to feel ashamed of my differences, I always knew I wasn’t the same as most people around me, but I never quite knew why! I would describe myself now as ‘quirky’ but for most of my childhood and teenage years, thought myself weird and strange. I have masked my difficulties for my whole life and suddenly thought “I’m exhausted, I can’t do this anymore” so I went to my GP and now I have my Adult Assessment for Asperger’s in April 2017. I’ve been given so many different labels over the years so having a diagnosis would finally give me the release of all those questions over all those years!
My biggest struggle at the moment is socially, I go through patches where I thrive and organise and arrange so much as I feel able to, then after as the pressure ups, or if I take on too much, I then withdraw and find it hard to cope in social situations and worry that people will find me odd and strange. I still have ‘sensory overloads’ especially in public and have to hold it all in in fear of embarrassment, if supermarkets are busy, loud and lights are bright and I feel closed in, I will forget what I’m in there for and head for the nearest exit! I am also still claustrophobic, if I can’t see a clear entrance or exit in a building I will panic, especially if someone is blocking my path and talking at me! Sensory overloads result in what look like ‘panic attacks’ for me these days and I usually save them up until I get home and explode! Just like Lou!
For Autism Awareness The National Autistic Society have realised the following video: Make it Stop
It is such a good insight into how you feel if you are experiencing a sensory overload.
Self confidence I’ve always struggled with so it’s difficult for me to explain what I’m good at! But here goes! I thrive on craft and art work, I love to express myself through creativity and writing, I can’t always express my feelings out loud but I can write it all down! I love my children and before they were born I struggled to understand how to have empathy for others, they have taught me so much ! I love being around children, I’ve always identified with children who have additional needs as I now have trained myself to think about how they may be feeling, especially if they have sensory issues, e.g if I see a child is distressed and cannot see why I will always think beyond and ask “is a label scratching you?” Some people may describe my methods as too empathic as I’ve heard so many times “your too soft” or “your wrapping them up in cotton wool,” but I challenge these people to put themselves in my head and see what I see and feel what I feel in terms of sensory issues, it has a huge effect on daily functioning! I do not see children as ‘naughty’ I’ve always identified that all behaviour has a reason and you just need to think ‘out of the box’ and not try to force children to conform! I know that not everyone will agree with me and I often clash with people! I like to help other people, something that I’ve also taught myself over time and enjoy doing 🙂
Daddy was educated in a SEN school in Somerset, in today’s terms (not the awful 1980s,) he would have been described as having GDD (Global Developmental Delay,) Learning Difficulties and severe Dyslexia. He was seen by many professionals and also had to wear supports for walking until past the age of 5. Professionals believed that he would never be able to lead an independent life, but he has been able to secure employment and now has a family of his own.
Daddy teaches the girls all the practical stuff, it takes Mummy hours to put together a flat pack bread bin ! Daddy is the practical thinker, yet mummy looks too much behind the theory of stuff! Lou loves rough and tumble play so daddy is the best for this! Mummy hates it! Daddy makes us laugh so much!
Not everyone understands our Neurodiverse family, I’m not unaware that people talk about us and comment on us, people may even joke about us 😦
But we have to just concentrate on the 4 of us and try to block out any negative views or negativity, we are very lucky to have some lovely, supportive friends and family 🙂
We are trying out absolute best, we can’t do anymore than that ~ everybody deserves to be happy !
Thanks for reading 🙂
I just thought I’d also add a fantastic piece of writing I’ve found this week from Faithmummy :