Stumbling through Space and Time
“Sometimes, you just need to have a good swear”
Well... hello.. you, lovely chums...
Welcome to another devilishly delicious read...
What do you say ....
Well, alas, as I always say...
You "aut" to know... I know right a shameless plug to my next seminar coming in time for Christmas.. What!!! I hear you cry... Autism and Sensory Sensitivities Webinar - Wednesday 14th of December 2022 from 12pm until 1pm..
Hark, .. I hear you say .... "Such fun" as Miranda says in Miranda Hart's BBC TV Show.
Yes indeed... it’s me... I'm back with a delicious second helping of my book review ...to titillate your sensory happiness... and not Sensitivities..
Such Fun...indeed intrepid reader..I promise the last plug....or.... is it..!!
However, after this without Hesitation, Deviation or Repetition ... Just a minute ... BBC RADIO 4
I will get on with this new book review on
Stumbling Through Space and Time: Living Life with Dyspraxia, by Rosemary Richings …
Where to begin ... dear ravished reader.. chomping at the bit for more wonderful reviews from the Reviewer of Said Books... more commonly known as The Book Reviewer.. Yes, dear chums.. let's start. But backwards this time.
Chapter 56…. It was the best of times; it was the worst of times… arrghhh….. Just Kidding!!! :)
Its only 16 Chapters (most short though) going through Rosemary’s life in an autobiographical way; her time dealing with Dyspraxia.
The book is nicely split into Parts as well and only 3 parts.
Part 1 Growing up with Dyspraxia
Part 2 Into Adulthood
Part 3 Living with Dyspraxia
Part 1 – Growing up with Dyspraxia. Chapters 1-5, Diagnosis, Early years and Elementary (Primary) School, Getting my period and Other Pre-Teen Milestones, Secondary School and preparing for University, How the University handles Dyspraxia.
“For disabled people to thrive, we need webs of help, support, understanding and care. But in an able- bodied world, we are all expected to succeed on our own, never to need assistance. Until we change that Paradigm, it will be incredibly hard for most disabled people to finish and send out their work into the world” – A.H. Reaume (2019).
In the introduction the author explains the definition of dyspraxia and how she gets mixed up between different things, limited by her environment and verbal instructions being at “a slower rate than [her] peers”, challenges with fine and gross motor skills, misjudging timings, getting lost easily and more. She talks about when she got the diagnosis in 1994 and how she fell downstairs having lost her balance, concern from her parents about how she was learning things at a much slower rate with lots of additional challenges, and then explains her diagnosis an “aura of soft gentleness, explaining to me and everyone that cares for me what it means. She comes from a Canadian system (where she was brought up) however this is nicely intertwined with USA and the UK, as she has relatives within the UK… which I thought was a very nice touch, with some comparisons given.
Her dad recommended a film called “The Last Detail” whereby Randy Quaid plays a neurodiverse character, telling her “It influenced him a great deal and his 1st steps into the introduction of Neurodiversity”..
Hoorah, I hear you cry… Beating your chest like a “Gorilla”… or perhaps you softly say …”Well hello.. you?” (Miranda, BBC.), She also explains how “teasing and bullying, has been a background presence in [her] life”. – certainly … I can relate to that being bullied for “being different” or “not normal” … unfortunately I still get it from some quarters.. it sadly, never does go away.. as some people are mean, don’t wish to be educated.., etc.
However, she does say that she is self-employed university graduate, wife and proud contributor to the lives and wellbeing of her family.
The author has grouped it into What happens after diagnosis?, Early Years and Elementary, Other Pre-teen milestones, Secondary School and preparing for university, and Finally in this section, How the University system handles Dyspraxia. That’s the first 5 chapters.
“ For Years I was harshly judged and misunderstood. Because I wasn’t learning complex movements and activities at the same pace as everyone else” From medium digest article about staying fit as a neurodiverse person (Richings. 2020a)
She talks about her earliest memories and her brother being an important role model and influence, and the Wilbarger Protocol (Brushing therapy) as a part of sensory therapy, brushing your body with a small surgical brush throughout the day- for those who are extremely sensitive to touch. This protocol was pitched to her parents as a solution to “fix” the issues. The author then talks about how sensory issues affect her for example “certain sounds, lights and textures cause my energy to drain very quickly” and how “the anxiety will impair [her] judgement, with intense headaches, with limitations on focus, sleep and ability to react to environment” She also gives positives like “retreating to a quiet environment, dimming lights, and rest makes a massive difference to [her] wellbeing” She talks about the brushing therapy and how she hated it, yet it did give some form of manageability from at worst being overloaded , whereby she psychologically talked herself through it. However, says “it does not replace the need for rest and doing whatever it takes to rejuvenate your energy when limits are exceeded". The author also dives into stimming, like hand flapping , spinning objects and rocking, how it also happens when she is hyper focused too. Learning to do things like catching and throwing a ball, and how her brother was so protective over her.
Within the process of assessments, the author got an Individual Education Plan (IEP), “the teachers figured out changes to the curriculum to help her thrive”. – Moreover, I wish this was done in UK Schools alas not yet, however I have been out of formal schooling for some time now – it may have changed, however I am thinking not! Such Balderdash, alas I joke with you.. of course, it would be very good common sense!!
Rosie points out that the contrast from emphasis on what she couldn’t do in her report to teachers focusing on what she was good at was a nice surprise. However, getting through these years, “mimicking other people’s idea of normal seemed like the most logical survival mechanism”. A shame that it seems to be still like this now talking to some university colleagues, and a sad indictment of nothing really changing (my view). The author quite rightly talks about “being made a target for my peers, even though I had some friends, I never felt like I fit in”, Unfortunately, this is like my experiences of schooling 20 years ago, alas, I still feel the same even now, in my personal and professional life at times an outcast, yet I still try to seek out friendship .. even that is extremely draining. In 2022/2023 the author’s book release, that we are still talking about “fitting in” and finding our own “similar people” its just not right in the 21st century. Within her dyspraxia, strategies like “logical patterns based on memorising things in order stuck in my head better than anything else”.
Other Pre-teen Milestones, I had never thought, I would be talking to you about the author “getting her period”, I’m sure many of my lovely readers know where this is going, and the changes within the body and keeping up with multiple changes within one’s personal and professional life made things extremely challenging, and how the dyspraxia made things “a hundred times worse”.
She talks about other people’s expectations, being so unrealistic she immersed herself into Harry Potter, and found a source of comfort for her as the “protagonists were relatable people who also struggled to fit in”, the expectations put on her “as a woman" made no sense to her, like "too many knots to tie, buttons and clasps to manoeuvre, clothes being a source of frustration”. Talking about her time at secondary school, she describes sensory sensitivities to fabric, which irritated her to the point of trying to find the right clothes to fit into making it more tolerable. She talks about being unkempt with her appearance.
She does give certain teachers praise for helping, guiding her, and seeing her potential. Some of her teachers helped with spelling, pronunciation, worked for her organizational and time management skills, using post it notes to track important dates and using a mixture of electronic calendar, and post it to remind her. At one point she describes making friends with her bully, as" the bully looked anxious with a red stain on her clothing, admitting from the other side of the door it was her first period" and asked if Rosie had a tampon which she had and then "proceeded with instructions on how it worked, and reassured her everything would be ok”, finally the bully and Rosie overcame their differences and managed to work together. Whilst at University, Rosie had to rely on landmarks to understand where she was, (alas, I do this often by landmarks, or if its me normally by pubs… ooopsss) and it works. Within primary and secondary school, she had extra time as a reasonable adjustment, within this time the author learnt life skills, like time management and figuring out what points were important in a text, and memorising certain facts that would help her in university. One thing the author did struggle with was advocating for herself; not asking her special educational teachers enough questions before she left being her biggest regret. At University you’re literally thrown in at the deep end without any help or support, and its sink or swim time.. to advocate for what you want, get the accommodations you need, you must advocate for yourself and if you don’t you won’t get the right support.. Its imperative in this reviewer’s opinion that the universities just like formal schooling are setting neurodivergent people and people with hidden disabilities up, on a path to failure in some cases, not all.. by not having mentors, the correct support areas in place, Disability Rights UK run a free specialist helpline in the UK for supporting students – Tuesdays and Thursdays – 11:00 – 1 PM on 0330 995 0414, email firstname.lastname@example.org. or speak to your student welfare office or mentor (s) if you have one. Yes, in the UK you can get PIP (personal independence payment) even if you’re a student. Can full-time students claim disability benefits? - Turn2us. However, going back to the author, even though she was independent, she still wasn’t informed well enough, suddenly making horrible decisions, she went into isolation, the biggest mistake she was “to pretend that my disability didn’t exist”. One source of comfort in university was diary writing, the breaking point came when she didn’t prepare well enough for a presentation , the cracks had showed, pretending not to be disabled, it had backfired. Luckily, she was part of a peer group, that was unconditionally supportive, also social media was just starting when the author was at university again finding comfort and reassurance from this medium and mode of communicating. Yes, she did pass the requirements for the university to graduate, the author even excelled in an Excel spreadsheet course, made webpages, and used HTML.
Part 2 Into Adulthood Chapters 6-8. – Healthcare systems and supporting challenges, How disability motivated my decision to pursue self-employment, Developing healthy relationships.
Here the author looks at healthcare, and challenges within the healthcare system. She talked about back pain becoming chronic and how she was on her dad’s healthcare until her 26th birthday, after that she had to find her own insurance, luckily the Writer’s Guild of Canada had an insurance package. The author advocates for occupational health and physiotherapy as it has helped her from schooling to now, and the benefits were huge. Again, within the education system, the author again found lack of support from lots of areas, became overwhelmed, her mental health started to suffer and dropped out due to this. Her disability motivated her to pursue self-employment, the biggest challenge for the author was maintaining and finding long term employment with the challenges of dyspraxia, being explained as “multiple tabs open in an internet browser everyone with some type of noise or distraction, the more you that have open, the less capacity and capability to handle things”. She also found at summer camps they did daily check-ins, in interview processes, the author would undersell herself, and take things too literally… oh oh .. why is this me as well …. Ugh, and this worked against her, and me several times… how similar we are. Not disclosing her diagnosis at times lead to a very awkward and unnecessary number of questions about awkward behaviour, and the inability to process instructions in a normal rate. As far as Accessibility goes, the author states “Accessibility is often discussed as a “black and white approach”, with a worldview of disabilities based on mobility. As soon as I had my university degree the expectations rose, the author said. The author also talked in the book about healthy relationships, and how she was misinterpreted, misunderstood even by some of her friends, “ no-one really understood why I couldn’t express my thoughts or feelings properly in large group settings. Learning to be proud of my disability, it took so many years to become proud. Within relationships the author stated, “ people who aren’t willing to accept my unflattering parts of my dyspraxia aren’t worth my time or energy” and “I...slowly figured out how to speak up about my disability, and not feeling like I had to apologise about it”.
Part 3 – Living with Dyspraxia - Chapters 9- 16
In the section, the author looks at Effects of Stigma on Self Esteem and Body Image, Coping and Persevering, why do people rarely know what dyspraxia is?, The impact of having no support, when do people need to know about dyspraxia? Some dyspraxics avoiding Driving? Travelling Abroad, Creating your own dyspraxia community.
“Staying fit, helped with coping with the harder parts of dyspraxia”: fitness allowed the author to work at her own pace, and allow her to progress. Running helped me feel more in control of my own body and mind, and yoga was a great help to the author’s wellbeing. She talked about how the COVID-19 pandemic, there was no access and as this was online it made it harder to deal with and gave the author extra problems, people don’t understand how inaccessible these activities can be. Mindset shifts unfortunately doesn’t completely get rid of stigma, when the author was looking at different universities, she took the approach of asking many questions and filtering out the universities that weren’t helpful to disabled individuals. “ You never know how people will react when talking about hidden disabilities like dyspraxia”, Spending a lot of time with other disabled people means that the fear factor has gone. Rosie stated, “ I only mention my disability when it’s a relevant contribution to the project”. When in doubt, ask people who live with the condition. "Coping and preserving": the author investigates her life and examines poignant areas like when she was diagnosed, when, she couldn’t walk very far, eat, or go to the bathroom (toilet) or even too weak to stand up properly, she couldn’t walk without assistance and had to rely on others, also making her uncomfortable seeking and asking for support. Meeting likeminded people, she no longer felt out of place. She talks about her partner, now husband, having multiple disabilities. “Talking about and experiencing the ups and downs of disabilities is so normal to him, that it finally started feeling normal to me too” the author vocalises. “Sometimes I have one of my bad days, everything I touch falls to bits, it can be a bit overwhelming” . Next time she says you or your dyspraxic friends have similar frustrations” she says, she is reminded of her late grandmother. “Sometimes, you just need to have a good swear”. On an average day, the public don’t see the author as disabled, however there are some days she certainly feels disabled.
Dyspraxia is often left out of disability conversations due to lack of awareness; this goes hand in hand with lack of support, challenges to gaining accommodations... some mistakenly were labelled autistic, after many tests learning they have dyspraxia. She states to receive the best support you need, to have tons of self-awareness about your disability, but also know what to say to qualify for that support. “Never assume an individual will understand”. Diagnosed in adulthood, you aren’t guaranteed adequate support, and support isn’t guaranteed in any workplace, obviously in Canada, however in the UK, we have the Equality act 2010, which mandates employers to put in reasonable adjustments. Don’t act like its you’re only personality trait, others will treat you like a one-dimensional character. Rosie, the author does say importantly that “everyone had some sort of health issue (or will have some sort of health issue in their lives”. Living within a big city, the author doesn’t need a car, to get about, however she does say that “[her] mindset was the major barrier, however, she never wanted to drive in the first place”. Some do drive, but only drive on medium and low-density roads as they are more relaxed. When travelling abroad she always seemed to get lost, so Siri and Google Maps are the way to go since she now uses that navigate, she is also very visual and a visual learner, which also makes visual representations easier to process. With regards to creating your dyspraxic community, I do find myself agreeing a lot with Rosie on the point that to be “always looking for your community got tougher and tougher within the COVID-19 pandemic and [she] became eager to meet like-minded individuals”. It wasn't until recently, that doctors and academics started asking the dyspraxia community for their input she says, and I totally agree, nowadays, I am slowly seeing academics wanting my input on a participatory level, even a co researcher level, this is me is a MUST, as we are the individuals whom know most about their conditions and importantly their own LIVED EXPERIENCE, which is valued, however, there is a lot more to do… all I will say is it’s a start!!!.
Well, Hello dear friends, bookworms, and amazing people .. yes, you are … I do hope, you enjoyed this book review if you did, I’d be delighted for any comments, both positive and negative .. dear chums.. oh… by the way did I shamelessly plug my final webinar.. Well just in case you forgot…..
What!!! I hear you cry... NOT AGAIN… Yes of course, dear Neurodiverse or Neurotypical Fellows .. Autism and Sensory Sensitivities Webinar - Wednesday 14th of December 2022 from 12pm until 1pm.
Be there or be elsewhere… and if you aren't… just plain “Boo, Hiss, Boo”, I jest. It I hope will be recorded again, but if you can attend that would be most delightful to virtually see you all.
Until the next Review and Read, I wish you a most delightfully wonderful time whatever you may do.. Well … You “Aut” to know!! 😊.
In his talk series, 'What You Aut to Know', Colin Larkworthy, from the Nuffield Department of Medicine, shares his personal experiences and insights of living and working with Autism. He received a diagnosis of autism later in life and will share his journey "through the minefield of knowing you were unlike your peers, to finally being believed and finding somewhere you feel at home.“ Colin is an NDM Mental Health Ally and a mentor for the Neurodiversity Project.