Our Neurodivergent Life

Catching up - with too many different topics to detail…

Sooo waffly… ;-) I meant to tell you about our Easter Holiday experience… but kind of went off on a tangent (as usual). For the first time, we managed to have some lovely experiences as a family, and I am so proud of our children, and ourselves, for everything we have put in to get to this point. I know some people will have had a really tough time…we certainly have in the past…but I wanted to share that despite the challenges, the way we have adapted our parenting to meet our children where they are…really is the best approach.

This is a quick recording on the back of a discussion we had about looking deeper…and looking for the why…with regard to how people present at surface level. We also share a few updates and reflections. (If you want to read more about learning disabilities, I found this link helpful: https://www.mentalhealth.org.uk/fa/node/1955 “a learning disability constitutes a condition which affects learning and intelligence across all areas of life, whereas a learning difficulty constitutes a condition which creates an obstacle to a specific form of learning, but does not affect the overall IQ of an individual.” I think people often confuse the two. (And it has been bought to my attention that the definition for this is different globally…so research your area). Because my son can talk, and access some learning with a great deal of support, his learning difficulties are overlooked.)

This is just a little update on how things are going with the children, as well as a few reflections on parenting, school and PDA.

This is another very disjointed conversation, mainly because I had to keep editing out names and a few incidents between the children, but as always, feel free to have a listen.

So this should have been called ‘attempted chat with my eldest'. My eldest child is not conversational, is very easily distracted and often talks over you. I think there is evidence of the three of us doing that here though… ;-) The sound quality is poor, but tune in if you fancy listening to us attempting to have a conversation.

If you have some time on your hands and fancy listening to me waffle about having it together…or not… then feel free to tune in!

This is a very quick reflection on the Disney film, Turning Red. It's pretty quick…for me… ;-) There may be more to follow… but then again, there may not… I would love to know your thoughts on the film. Have you watched it? Did you think it was appropriate for children? Did you enjoy it? What were your thoughts overall?

This podcast covers some of my experiences as a late diagnosed autistic, exploring my feelings over how things might have been different had I known I was Neurodivergent.

This episode discusses some of my experiences with doctors and medical professionals, explaining why I feel anxious about making and attending appointments. I feel it is important that doctors have autism (Neurodiversity) on their radar, and try to treat people with compassion…rather than labelling people as hypochondriacs and denying them the support they need.

Trigger Warning: Depression. In this episode, (that I say is quick…but winds up not being so) I vent about the challenges we have in our lives, and how these things can impact on our relationships and mental health. Please note, this is a deep and pretty depressing recording…

Some people believe that when children aren't at school, they are at home, doing nothing. And some feel parents are responsible. This does not take in to account the plethora of reasons why children do not attend school, and what a responsibility this places on parents. Somehow, as we went off on a little tangent, I didn't cover how our child is progressing since being at home… and how our PDAers often thrive when their learning is self and interest led. There is still so much more to say… but we have covered why many children aren't in school and how the system needs to change!

This discussion was triggered by a post from Joe James the Autistic Photographer, explaining how 2-5 is too young to deem an individual as non-verbal. We then went on to discuss how our autistic children develop differently, and are often underestimated. Many professionals ‘write off' our children, and we feel that in some cases, so much untapped potential is wasted.

I was feeling triggered after reading some reports about my eldest child. I will admit, this podcast might present as an incoherent rant, but essentially, I want to communicate how much my son has been let down…and how so many families have been let down. Our system is baffling and in great need of change. How can it be justified that a child who needs such high levels of support has been denied educational, health and social interventions? How many children and families are experiencing the same issues? You need a diagnosis to be considered for specialist provision (and it might not even be adequate), but diagnosis is inaccessible to so many people. Please don't be afraid to reach out if you are going through the same challenges. It's emotionally draining and so exhausting. (Apparently I referred to being in 2020 when it is clearly still 2021…just. I meant that when the professional looked at me blankly when I mentioned PDA…it was 2020. Also, the EHCP assessment was applied for in 2020…so it is shocking that in that time, no real efforts have been made to adequately assess and get to know my child.)

This ‘episode' covers my reflections on what people expect from you, and the impact this can have. In this context, it is in relation to juggling the raising of children, which in my case are children with SEND, and keeping the house together. This topic could be extended into other areas such as the workplace…

This is a commentary, with sadly poor audio, about the BBC show Don't Exclude Me. I have the show on in the background… it might be worth you bringing the show up on your screen so you can follow the events as I speak about them. (At one point I express a boy has £10 in his shoe… I meant bag… I don't know why I said shoe…)

Here we discuss the terms low and high functioning. What started out as a balanced conversation about the terms, admittedly wound up becoming a conversation about the ‘high functioning' experience. We didn't intend for the conversation to take this direction, but we hope you can relate to some of the topics we explore. With regard to the terminology, high and low functioning, we express that we feel the terms are inadequate. During the talk, we reference the following:  Why everything you know about autism is wrong: Jac den shouting https://www.youtube.com/watch?v=A1AUdaH-EPM Evil Bald Genius: https://unapologeticallyautistic.com/high-functioning-autism Levels of Support: https://www.verywellmind.com/what-is-high-functioning-autism-5198358  https://www.legislation.gov.uk/ukpga/1995/50/contents  I like to be honest, and I have to confess, I am unwell…and was speaking faster than usual. I didn't know that was possible either…

This episode addresses the viral post we shared about Doom Boxes. It explores executive dysfunction, neurodiversity and co-existing conditions. During the podcast, I state that executive dysfunction can be ‘caused' by autism, adhd etc… I couldn't neatly edit this part out, so I wanted to clarify that what I meant was, executive dysfunction can be experienced by people with adhd, autism, ptsd, and other conditions. It is not exclusive to ADHD. Regarding cause, online sources such as additudemag.com do express that it can be the result of heredity, such as ADHD, but they can also result from damage to the prefrontal cortex, in vitro exposure to substance use, trauma or severe neglect. With this in mind, it might not be far-fetched to suggest that other conditions such as autism, and the way the brain is wired, is responsible for executive function issues, but I worded this very badly in the podcast. I have my own processing issues, and sadly this was one of those times. We hope you enjoy the podcast, and relate to the content.

This is a (kind of waffly) reflection on schools, acknowledging that not all are equal.

This episode covers my communication difficulties, as well as how I am deemed to be ‘high functioning', quite wrongfully in some situations. It briefly explores masking as well.

This was just a quick recording to confirm my personal stance on ABA.

Well, I was warned that having a personal budget approved is like winning the lottery. It seems that this is indeed the case for many families. This podcast is a rather emotive and raw discussion about our own journey with the EHCP and personal budget request, and explores our thoughts on the current systems in place.

This episode covers private diagnosis, the current systems and assessment processes, and why diagnosis is important to us. It also covers the difficulties, albeit very briefly, in diagnosing ‘PDA'.

This podcast is not our typical recording. I share an experience of ‘something in between' an escalation and a meltdown, and discuss a few linked topics and reflections related to this experience.

This episode was a live recording which covered a few topics, with a main focus on studying and careers.

This episode discusses the journey so far with our eldest, which inevitably incorporates other linked discussions and the EHCP process. We will talk about the dreaded EHCP further in a future episode. This podcast was actually recorded before the ABA recording. It is mentioned briefly here, but was built upon in the main podcast. We will also be following up from that topic, upon further research.

This episode discusses ABA, both old and new. We make links with similar approaches seen around us in everyday society, and explore whether ‘Modern ABA' deserves to be associated with ABA in its original form. ABA was developed to ‘normalise' autistic people. This was not done to help the autistic person and was instead designed to suppress or eradicate ‘undesirable' behaviours. For clarity, we are opposed to ABA, or anything that forces autistic people to be anything but themselves. However, we also acknowledge that every autistic person has their own unique experience, and requires a different level of support. We discuss whether services that support individuals to fill ‘skill gaps' might be useful, and whether these still come under the umbrella of ABA. There are many providers who want to help autistic people thrive, without forcing them to deny their natural urges, and essentially who they are. What is not clear, is what methods are used. This is merely an introduction to the topic, and much more research and investigation will need to be conducted. We will revisit this in future podcasts, and welcome any comments, experiences and insights related to ABA that can be used to educate...us and our listeners.

This episode explores my experience in the workplace as a Neurodivergent individual. We also discuss whether one should disclose their diagnosis to an employer. Listen now to find out what happened when I did.

This podcast discusses homeschooling, and parenting PDA children, as PDA parents. We do go off on a tangent...and I warn you that my first attempt at editing leaves a lot to be desired. I will improve, I promise! Ignore the jumps from one part to the next if you can. Hopefully you will relate to some of our content, or find something useful.

This episode discusses the free school meals that have recently been provided. We share our opinions on the meals, including their suitability for SEND children, specifically those with sensory sensitivities. Some profanities are present within this podcast. (This podcast initially ended with the song Food Glorious Food but was removed as its presence restricted where the podcast could be accessed...so feel free to have this song in your mind during our discussion.)