A Chronic sorrow. (Invisible disability)

I have been wanting to write a blog about how it feels to fight constantly for a person who you love more than life itself. I don't want it to sound self indulgent or pitying though and I have found the  balance elusive. I want to describe what it is like at times to inhabit the world of disability. To swim against a constant and ever stronger current of questions, squeeze through ever tighter hoops and increasingly high hurdles in an effort to have someone's needs met. I am not a negative person by nature, the exact opposite in fact, one of life's optimists who tries to see the good in everything and everybody. At times though circumstances conspire to floor me and send me spiralling downwards into what doctors call a 'reactive depression' and I call despair.  Due to circumstances beyond my control and out of my reach I sometimes watch a total lack of understanding of a mind that works differently, an agonising story that plays out in a lonely, slow motion epic.

I won't go into details of what inspired this outpouring. I had experienced a train wreck of a year. I want to explain that I am generally positive about life and my now 30 year old son is a joy, a gift to the world, a gentle soul who depends entirely on the kindness, understanding and honesty of others.
Sadly his innocence, his ease of trust, his inability to recognize malice sometimes leads him into places which are dark and harsh and unyielding. He navigates the world without a compass, he at times makes poor choices and he gets into trouble. He has a whole host of invisible disabilities, a complex interplay of things which are just too much for one mind to successfully work with without support and understanding.

He is guilty only of innocence.

I  worked with the Dyspraxia Foundation for some 23 years. A Charity whose helpline saved me when everyone else seemed to think I was making up the difficulties my son experienced. It was been a fruitful time, I have learned so much. 

At 40 years old I went back to University and studied his difference, gaining a BHSc (with honours) and then a MA in Disability Studies. A PGCE followed enabling me to teach.  

Jean Ayres in her wonderful book 'Sensory Integration and the Child'  said 

' Mothers of children with problems carry a tremendous emotional load. Sometimes the weight of the problem seems too much to much to bear, and the presence or severity of the problem is denied in order to cope. Or parents recognize the severity and then they search and search for better answers to a difficult situation'  (pvii)

I was definitely one of the searchers. I researched as a kind of cathartic exercise because the lack of real motivation to help him perplexed me, the judgemental looks, the tuts and sighs. It really helped me and informed me to learn in depth about the fearfulness that surrounds disability, the 'thank goodness it isn't me' mentality. I then  set about changing the world. I have to date had three books published and lectured around the country to raise awareness. I do see some subtle shifts, some positive changes for the better, a greater representation of disabled people on the TV and in film but on the whole I find a world that doesn't really 'get' those that appear just like anyone else and yet behave somehow differently from the expected 'norm'. Those with invisibility disabilities (and there are many).
The actress Sally Phillips who has a son with Downs Syndrome recently said 

                 ' My friends pity me and yet I think they should be jealous of me'.

 I love that comment. My son greets me every day with a smile that is so full of complete love and trust, he takes the world head on, forgives unkindness in a flash and never speaks badly of anyone. NEVER. The world would undoubtedly be a much better and kinder place if it were full for people with his exquisite soul. People would be surprised to learn that he suffers with an anxiety disorder I am sure.
I recently read the book 'Birdsong' by Sebastian Faulks and a quote really struck me when one of the characters who had a son with learning disabilities said of his son

 ' His innocence was not the same thing as ignorance, it was a powerful quality of goodness that was available to all people, it was perhaps what the Prayer book called a means of grace, or hope of glory' . 

 I love that expression a 'powerful quality of goodness' because I believe it is something that we are possibly all born with but those with learning disabilities seem able to hang onto, whilst the rest of us are tarnished and dented by life experiences.

I placed my son in supported living at age 25 years for two reasons. I wanted him to learn to cope without me and I was unable to keep him safe from exploitation by others. You see he walks a boundary, between 'able' and 'disabled', he feels well placed in both (sadly ever separate) worlds. He looks just like any other  guy. He is though an open book and there are always those ready and willing to exploit and humiliate difference.
Don't get me wrong there are lots of really kind people who are willing to, and do protect and look out for him, but no one can truly keep him safe...not even me. He has a condition that absolutely affects the way he perceives the world and how to manage himself within it. It makes him 'extremely vulnerable to  exploitation'. It makes me extremely scared for him.

I am immensely proud and privileged to have him as my son, but that love does come with something that I call a chronic sorrow. A sorrow that he doesn't have buddies calling on him to take him on a night out, a sorrow that people sometimes treat him as less able than he is, a sorrow that he didn't get academic qualifications because that set him up for a world where no one is prepared to employ him. A sorrow that he can't drive a car. A sorrow that he spends New Years Eve with his boring parents and not out partying and a sorrow that he doesn't have the partner he would very much like (yet). A sorrow that everything is and will always be so much harder for him. And yet he rarely lets his struggle show.

He has a full and productive life, he is busy and well liked and we are lucky in so many ways but I just want to get across to people that while I know that there are so many positive things attached to having a 'child' who learns and lives differently and I do appreciate and celebrate that fact but there are occasions when I am not Ok with it and I am writing this because I believe that I can't be the only mother who feels like that. Its true that small achievements become immense celebrations, life is more colourful and random. There is though a real loneliness at times, an isolation in watching someone struggle with the everyday things that others take for granted. Watching your friends youngsters grow and achieve and marry and have kids. I LOVE that they are doing that, I am so happy for them, but I am on the outside. I function on the perimeter of 'normal life'. I often feel that  I don't truly belong and I isolate myself from the communities that  am often desperate to be part of. I don't often let my hair down in case I get a phone call and need to drive to him in an instant. I keep my phone on all the time. I hate letters in brown envelopes because they are usually something I don't want to deal with anymore and they fill me with dread. I have lost confidence, cherished friends, at times my sanity.  I have gained a great deal too.

Every time he is not accepted to do something he really wants to do. It hurts, really hurts (me, not him) because I want the world to include him, to make adjustments to support and make things successful for him. I want the world to see the person that I see. I want the world to be kind and to love him and to know that when I am no longer here he will be safe. I want people to challenge those who are uncomfortable in his presence, to make a stand for his absolute right to participate in the things he loves, and to give him the opportunity to adjust and adapt. When that doesn't happen, or even worse when he is grossly misjudged it completely floors me.

So if you are a professional person reading this ( 'we' tend to meet lots of professional people on our journey) please remember that we are generally happy, we do love our children but the world is so full of pressures that work against us that sometimes we are really sad, and that's OK.

We like the positivity, we enjoy the messages of support and glee, the positive stories, the anything's possible mentality but we also write the endless letters and wade through a mass of unwieldy bureaucracy and form filling, and assessments, and appointments when we just want to be playing in the sunshine and eating ice cream.

We never stop grieving  for 'what might have been'. That doesn't make us grim and negative, it makes us human.

Have I changed the world? I guess to a tiny degree I have. That's Ok.  Every person who is informed is a huge plus. Please though folks remember that lots of families deal with lots of additional pressures due to their children's perceived disabilities. Just like everyone else they are just wanting the best for their loved ones. Often that is etched with a chronic sorrow......

Gills Hog Blog 

A little Hog History.

I have recently read a fascinating book written by the late great Les Stocker, founder of St Tiggywinkles (the first wildlife teaching hospital in Europe).  I thank him for sharing  what he knew so enthusiastically and for everything he and his team did and continue to do for hedgehogs.

The hedgehog has a chequered history, and it is really a marvel that it has survived at all. Many were eaten by the ancient britons, and certain parts of the animal were considered to be excellent cures for various ailments and so they were widely hunted. Konrad of Megenberg told how hedgehog flesh was good for the stomach as long ago as 1350.

The Romans used the skins (dried and cured) to card out wool, but more recently the skins were used to prod horses over show jumps.

There were those who were keen to study rather than expolit and Aristotle in the fourth century BC observed and wrote of the 'echinus'.
He along with Albert the Great (13th century) spoke of how the movements of the hedgehog could be used to determine wind direction. 
The Romans also considered the hog useful in the forecasting of weather and wrote that the hog would exit from hibernation on Feb 2nd and if he saw his shadow he would return to his burrow for another six weeks of winter.
A well known story by Pliner the Elder told of hedgehogs who climbed trees in order to knock off the fruit which it would then throw itself upon in order that the fruit stuck to its spines for transportation. Quite an imagination!

(circa 1320 Cambridge)

In medieval Britain it was believed that hedgehogs suckled the milk of cows and this led to the  creatures being slaughtered in their thousands. Farmers persecuted them and in 1566 an Act of Parliament offered a reward for every hedgehog caught. Hedgehog hunting became quite a lucrative pass time.

The Bard himself, William Shakespeare spoke of them as wicked spirits and vermin and soon the whole world began to despise them.

Even the Church offered rewards for hedgehogs killed in churchyards and right up until in the last century some counties in England were still paying out for the corpses. 
It took another Act of Parliament in 1863 to repeal the law but goodness knows how many creatures perished  before this.
Sadly the hedgehog was then accused of egg stealing  and gamekeepers seized the opportunity to clear more from their estates . As recently as 1976  a scientific research programme established that in one estate in East Anglia, 260 hedgehogs a year were routinely slaughtered.


Thank goodness then for  Beatrix Potter who introduced a whole generation of us to the delightful Mrs Tiggy-Winkle . She is considered extremely important for bringing the hedgehog back into favour. 

That and the reignited interest of the natural word brought about by the horrors of war,led to the insignificant hedgehog becoming a banner of the new caring society and it adorned a whole range of stamps in Europe.

With all this positive exposure the much maligned hedgehog gained a popular image and they are now a much loved creature, but one that is in rapid decline. Numbers have declined from an estimated 30 m in the 1950's to 1.5 million today.

It is interesting to note that whilst they are now considered an endangered species  they only benefit from partial protection under the Wildlife & Countryside Act (1981).

It would seem to me that our only indigenous spiky mammal, which we know for certain  were firmly established in Britain by the middle Pleistocene period about 2 million years ago have earned their place on our shores.
I certainly hope that they will not be assigned to the history looks but sadly current research indicates that it is a very likely scenario. The fate of the hedgehog is in our hands. and with Spring around the corner I would urge you to resist the temptation to use weed killers in your garden and give the hedgehog chance to clear your space of those pesky plant eating insects. Lets keep them out of the history books.

Gill, until recently, ran a very busy and successful rescue. she now concentrates on raising awareness in an effort to help this endangered and very precious little mammal.

Gills Hog blog number 1

A post from the Palace (or Gills Hog blog number 1).

In September 2017 I decided to open a hedgehog rescue centre in response to local need. This was not on a whim and I am not a mad hedgehog lady. I have been rescuing various animals for most of my life. As a child our house was rather like the Durrells with all manner of creatures walking, flying, trotting and swimming around it. I can remember as a small child having a full  funeral ceremony for a dead hedgehog, insisting my parents sang hymns as we buried it. My Dad even had to return a live lobster (given for tea as a rare treat )to the ocean in order to stop my sister crying! I have never had a moment that wasn't shared with some beautiful creature and animals are an extremely important part of my being. I currently live on a smallholding just outside Howden, East Yorkshire with many furry and feathered friends  (around 60 in number). I also have a medical background and so wounds, maggots, and faeces cause me no concern. A hedgehog sanctuary seemed a way of formalising and hopefully funding a worthwhile venture.

My (long suffering) husband set about creating a suitable centre in an outbuilding and 'Pricklington Palace' was born with the help of many wonderful donations from friends and family, and the essential support of my local veterinary practice.

I decided that six 'beds' would be enough with all my other commitments. That has grown to 13 now and since that first day some 80 hogs have passed through its doors. I have recruited a few wonderful foster carers who take well hogs for TLC when their treatments have finished. I have an intensive care incubator and research microscope which I have been able to purchase via crowdfunding and donations and which are absolute life savers. It is though a 365 days a year commitment, in all weathers and no matter how I am feeling, and I am running it purely voluntarily with only voluntary contributions to rely on.

My aim is to admit, treat and release as quickly as possible, but of course I now have a hogspital full of those who were just too small to release before the winter cut off. My current 9 guests are enjoying 5* accommodation in heated hutches and a varied menu until the eagerly anticipated spring release. I have identified and treated all manner of intestinal worms, ringworm and mange, strimmer injuries and amputations and have painstakingly removed thousands of maggots and countless ticks. I have syringe fed, injected, coaxed and coerced in order to get the necessary treatment onboard a needy hog. I am a member of a wonderful online group of rescuers who share knowledge, experience and advice and commiserate and congratulate in equal measure.

Hedgehogs are up against so much and whilst they are endangered they are not a protected species. The greatest threat is probably the huge reduction in invertebrate numbers and whilst they prefer beetles and caterpillars as food they have had to turn more and more to those creatures who host all number of parasites which can prove deadly to hedgehogs. Lack of suitable food, pesticides and slug pellets, the increase in road traffic, domestic dog attacks and various other threats have led to a state of emergency for our prickly friends and we are at a very real risk of losing them forever if we do not act to preserve their habitat and allow them the opportunity to thrive.

Hedgehogs are very cute...

....but they are wild animals and do not enjoy human contact or intervention and so I keep my contact to a minimum and disturb them only when necessary. They are very fussy eaters and each has a preferred diet which I learn by a process of (sometimes wasteful) elimination. I haven't been able to save them all, but even those that have died have done so in a warm and comfortable environment, free from predators or pain. It is a though wonderful feeling to take something very sick and fragile and treat it successfully and release it back to the wild.

My top 5 tips to others would be...

• If you find a hedgehog out it daylight it needs help (unless it is a nursing Mum who will be looking well and moving with purpose).
• Keep the hog warm and offer a small amount of food and fresh water. Make sure it has a towel or something to bury in which will reduce stress enormously.
• Take any sick hedgehog to a vet or rescue centre for a health assessment. They can look well but be harbouring potentially deadly parasites that need to be treated as soon as possible.
• Make a simple hedgehog feeding station and feed them with meaty cat/dog food or dry biscuits and fresh water (never milk or bread which will kill them) https://thehedgehog.co.uk/feeding-hedgehogs/how-to-stop-cats-dogs-and-foxes-stealing-the-hedgehogs-food/

• Ensure that they can enter and exit your garden (and garden ponds) with ease.

If you would like to support my work, sponsor a hog or donate an item please visit and join my page on Facebook at https://www.facebook.com/pricklingtonpalace/

You can donate via PayPal at https://www.paypal.me/Dixon1829  or can buy an item from my Amazon wish list.

Our prickly friends really need the help. 

Team Intrepid but decrepit and the Way of the Roses.

Well it seemed a good idea for two sisters to plan a coast to coast cycle challenge on New Years Eve, having drunk copious amounts of alcohol . 
After all these things are talked about but never come off......
Then Liz (the fit one in the centre) jumped aboard and it became all the more real.
So a few months of 'training'  and on May 22nd 2017 we set off to conquer the beautiful Way of the Roses.
Three women of a certain age calling themselves Team Intrepid but Decrepit raising money in memory of Gill's nephew, Adrian who took his own life in November last year, aged just 33 years.We knew that some ultra fit people have done the route in a day but we decided sensibly to take four and enjoy the views with frequent breaks and make it a bit of a holiday with a difference.  Our first long cycle tour.

The team.

• Gill. (right in pic)...role...medic and accommodation organiser. Road bike.
• Liz (the fit one)...role.... bike mechanic and route finder. Tourer.
• Chrissie (left in pc)...role...route finder and seeker of sustenance. Hybrid.

Day 1
Having had a peaceful and very comfy night at the Berkeley B&B in Morecambe, and with a good breakfast on board we set off for Settle. A warm, dry day to be thankful for. We knew this would be  a reasonably hilly start (Gill had yet to tackle a hill) and so we organised a shortish route of 35 miles which we managed in a fresh faced and enthusiastic way. It was great, if tiring in the heat but that beer when we had finished the days ride was like nectar especially as it was garnished with a great sense of achievement.  We then made the mistake of going to look at the hill out of Settle..... 

Day 2
THAT hill out of Settle. It is no laughing matter.  The hill is a 16-20%gradient which climbs 1000ft over 1.5 miles out of the town ...it was not a good idea to start the day with tired legs, no warm up or run up, cobbles to start and then a steep ascent. On reflection we should have included it in the first day and headed for Cracoe for our overnight stop. Liz, all but made it, Chrissie had a good old go but then a bad gear change stuffed her attempt. I really tried but ended up pushing the bike up some of it which was also bloody hard work on a very hot day. This was a tough day all round although the views were stunning. I did really struggle at times.  Chrissie and Liz's hill training back in Portsmouth paid off for them. The descents were of course wonderful but there was hill after hill and I was ready to give up at one point except there was no choice but to continue on the route. Greenhow Hill is another b*****d although we were headed in the 'kinder' direction.  A long, very steep and winding descent with tight turns around bends (make sure that your brakes are working well). 
With each hill Liz, winched her way up in a very low gear  with some sheer strength and determination.,Chrissie chanted 'my head is strong, my legs are strong' and just got to the top every time in her own way, like a traction engine. I chanted 'I hate hills, I hate hills and wish I had done some hill training.' 
Here I am at the top of Settle Hill...

Day 3...
A wonderful overnight stay at Boxtree Cottages in Ripon really set us up well for the day ahead.  The route heads for Pocklington via York and Stamford Bridge and we decided to hole up at my place near Howden overnight and so we ended up riding 75 miles today.  It was good riding though. Some 'undulations' were described (these are hills but softer ones) but on the whole this was a lovely day. Hot and sunny again. We stopped in York for a sarnie and enjoyed the cycle path out of the City. We were pleased to get to mine for a much needed meal and shower. I had really got to know my bike by now, my gear changes (and anticipation of what was needed) was much improved and my legs stronger than ever, if a little stiff. Interesting that I sailed through this day (compared to others that is) on the flat (which is absolutely what I am used to) whereas Chrissie and Liz found the lack of positional changes offered by a varied terrain caused their shoulders to ache somewhat.

Day 4...
Back to Pocklington from mine plus a few add ons gave us something in the realm of 66 miles today. Bridlington via Driffield and some of the beautiful surrounding villages. A few sneaky ascents today (Millington Hill is one to note, hard work in the heat) through the beautiful wolds and some glorious scenery to take in. Another great day's riding. 

A much kinder day with the scent of the finishing point in our nostrils. To arrive in Bridlington and know that we had achieved what we had set out to do was just fantastic. 

A  very welcome cup of tea at the Bluebell Guest House on our arrival and fish and chips at the harbour to end our day.

Team Intrepid but Decrepit nailed it!!! Now just the 60 miles home to pedal.........

Tips......

• Pack light. Your baggage really affects your ride. You need less than you think.
• Add SIS tablets in your water bottle especially if it's hot. They really helped to reduce fatigue.
• Do some training. This route is described as moderate in difficulty. There are some really challenging hills.
• Take a map if like us you were unsupported.
• Take breaks and be aware of each other.
• Remember those stretches at the end of the day.

A few thankyous to...

• My brilliant team mates.It's been a pleasure.
• The weather...glorious sunshine all the way.
• Sustrans for a really lovely and on the whole very well signed route.
• My bike (christened Alex en route) who I now know a whole lot better.
• The supporters who raised all the money. You are priceless (over £2,000 to C.A.L.M.).
• The man who ran out of Wetherspoons in Ripon to give us a tenner and the lady who emptied her purse while we were having a sarnie somewhere. Touching.
• Our partners for the cheers and support..
• My legs

If you are thinking of having a go. my advice is to DO IT!!!!!

Thanks for the memory. My 'take' on Alzheimer's.

I read a fair few posts about the horrors of Alzheimers disease/Dementia and most of them seem to imply that the person with this condition assumes a babbling, pitiful state that no one should have to endure.
I want to 'put the record' straight from my perspective. Yes aAlzheimer's is  a terminal health condition. It affects the most important of our organs (the brain) and its impact can indeed be devastating but it does affect each individual differently. It is wrong to put  all those with the condition in the same pot labelled 'babbling idiot'. They are not. In essence they are still the person they always were, but one has to dig a little deeper to find them and to try to view the world from their perspective. Like life in reverse if you like. As our children grow and learn and their cognitive function improves, those with dementia shrink and their cognitive functions diminish.

I have observed and loved both my parents through this condition.

My  late father Doug, was a proud, handsome, arrogant, clever,  man with an enquiring mind and a sharp wit. He was used to being in charge, was strict but usually fair, and rather emotionally constipated, in that he found it hard to express affection/love (like many of is generation I would guess). When he first began to lose his memory he was angry and frustrated by what was happening to his brain. In his last year he found being cared for extremely difficult, tortured by his loss of liberty and he became angry and sometimes aggressive as a consequence. I beleive he always had a temper which he kept very well under control, but dementia seems to strip people of the finesse of  the social dishonesty that many of us have to live by, lay them open and his temper became more apparent.
He did though became more affectionate and told me that he loved me so many times in his last years (something I never remember hearing as a child).

The condition took his life eventually. In truth he slowly starved to death, forgetting or refusing to eat and becoming smaller and smaller. Not a spectator sport and I was very anguished by his demise, because I knew the man he was.

My dear Mum is quite different. She is now in the latter stages of the condition. A good, warm, loving woman who spent her entire life looking after others and has accepted being cared for far more willingly. She likes the banter and having been quite buttoned up in life  (I never once heard her swear) she became funny, outrageous and very rude in an extremely comical way. It's not often one hears ones Mum singing 'While Shepherds washed their cocks by night' at the Christmas carol concert!!!

I have spent some of the happiest and most meaningful times with her SINCE she was diagnosed, knowing that every day is precious as I watch her lose so much of herself. However she is largely content and even though her speech is very disordered and largely incoherent we continue to have some wonderful conversations and laugh out loud moments. Yes she is incontinent and can no longer feed herself but she is not aware of that, it does not haunt her.

Don't get me wrong some days I could (and do) sob.  She can be difficult and surprisingly strong when essential care is being given, but she is genuinely delightful and I am very lucky to have had her in my life for so long. She too eats less and less and is shrinking before my eyes.

Of course I would prefer that neither of my parents had succumbed to a mixed dementia, but they did. It  is a condition that will affect most of us in some shape or form as people live longer, but what I am trying to say is that whilst there are times of real gut wrenching sadness and anguish, these can be and often are tempered with moments of real wonder and delight. I never felt I have lost my parents to the disease.

It is the hand that they were dealt and with kindness and a genuine regard for the person that dementia has shaped they are not less; just different.
With or without dementia they are the parents that I love, still worthy of  respect and kindness  and still able to experience moments of real joy.
,

The girl who forgot how to read.

The Girl who Forgot how to Read.

Recently I was chatting with a lovely young adult, who as well as having a severe form of dyspraxia/DCD (Developmental Coordination Disorder) also has severe dyscalculia.

Dyscalculia = is a difficulty in the learning or comprehension of arithmetic, such as difficulty understanding and manipulating  numbers, and learning mathematics.

People usually think of challenges with maths in terms of learning in the classroom; however, if an individual has dyscalculia the ramifications of this extend across many other areas which are significant for daily living. These include money and budgeting, time keeping and organisation, understanding weight and measurement. This can have a profound influence on job opportunity and retention.

The chat with this delightful individual exposed the fact that she experiences a sense of profound panic when it comes to dealing with money because numbers have no meaning for her.
She has recently moved out of home into a wonderful supported environment where the staff are trying to help her towards greater independence and a degree of independent financial decision making. Dyscalculia is one difficulty amongst a complex profile of specific learning difficulties, which as a bundle makes daily living very challenging indeed for this person.

It had been agreed that to make things as easy as possible whilst she gets used to all the change she is encountering that staff would work out with her what monies she would need to see her through the week, to pay for various activities and refreshments. To ease things further she agreed to her monies being given to her each day so she had only to consider one day at a time.

However it came to the  attention of her key worker that she was secreting money away to collect it up so that she always had a bundle of money on her person 'just incase'.
Further conversation exposed the fact that when she bought her lunch,  the numbers on the menu were meaningless. She was unable to calculate if £4.95 was less than the £8 she had to spend, she felt a sense of terrible panic. She was terrified that she would not be able to pay for what she had ordered. She thought that she would look utterly stupid and people would not understand that she was unable to interpret numerical information.

So what has this got to do with forgetting how to read?

I was reminded of a story of a child who went overseas on holiday with her family. When she arrived at her destination she exclaimed 'Mummy I have forgotten how to read!!!'. What she didn't know was that all the signage etc was in fact in another language and she simply couldn't read it because she didn't understand that language.

I figure that this is how it must be for the young woman and her money issues, like landing in a foreign country every time she looks at a menu, or a price tag.  

It seems to me that this must be very anxiety provoking, and this young person's need to have a wad of money about her was a way of always knowing that she could pay for whatever she had ordered. However, it also left her vulnerable  as she carried around a significant (and often unknown amount) of cash, 'just in case'.

These invisible issues are the kind of experiences people around us are living with all the time. Whether they have acquired a diagnosis is immaterial, the difficulties still exist.

Definitions and research into dyscalculia are in their infancy, but the prevalence of the condition suggests that it affects between 3-6% of the UK population. That is 1 in every 20 children. One in every classroom. A significant number of people.

In many people it co exists alongside other conditions as it did with the young woman whose experience I am describing. She is dealing with this anxiety alongside the anxiety that her experiences with dyspraxia also creates.

As a society we are very poor at recognising and understanding invisible difficulties, and yet they render very able, creative, tenacious people at a huge disadvantage in our classrooms and workplaces. It begs the question of how many people who are very capable in many ways do not get the success they deserve, or meet their own potential. We are very good at catching people being bad, and often focus on their weaknesses, rather than their strengths.

If you see someone who seems to be struggling, ask if you can assist them. It just takes a little thought and kindness to get someone else out of a difficult spot.



Ref
C. Lewis, G. J. Hitch, and P. Walker, "The prevalence of specific arithmetic difficulties and specific reading difficulties in 9- to 10-year old boys and girls," Journal of Child Psychology and Psychiatry, vol. 35, pp. 283-292, 1994.

Dyspraxia/DCD It ain't rocket science.

Dyspraxia/DCD.....It ain't rocket science.

Having lived in a house governed by the different needs of those with dyspraxia/DCD for the past 30 years it seems to me that a lot of words, research and work goes into trying to unpick the differences displayed by this exceptional group of people.

Yet to me as someone who lives with and loves three different people with different degrees of the condition it seems that really all is needed is some desire to understand, and empathy.

Empathy = The ability to understand and share the feelings of another.

Dyspraxia, also known as developmental coordination disorder (DCD), is a common, lifelong disorder affecting fine and/or gross motor coordination in children and adults.

Motor co ordination = is the combination of body movements created with the kinematic (such as spatial direction) and kinetic (force) parameters that result in intended actions.

So the condition is all about movement and when we consider that term we think of the very obvious large movements we make that can be easily seen and monitored.

Movement  though is a very complex and necessary activity. Nash- Wortham describes it as

‘…a fundamental activity of life. It is perceived in liveliness of thinking, in fluctuations of feeling and human interaction and most obviously in the physical body.’

(Take Time, 1979, p.3)

So movement is not just about taking physical steps, moving our arms and legs, it is about breathing, speaking, doing, being. We are movement, and when something happens which affects movement it affects our very being, and sets us apart from others. That can be seen obviously in the case of a devastating accident resulting in paralysis, or conditions such as Parkinson’s Disease, or Cerebral Palsy but it is also evident in a more subtle form in a condition such as dyspraxia/DCD…..it is about doing and being.

As Biggs says

It is the fight to produce readable handwriting and a good essay at the same time. It is the frustration that you feel when you’re trying to cross the road, but don’t dare to move because you can’t judge the speed of oncoming traffic. It is the chaos that whirls through your head when someone asks you to plan ahead. It colours every area of living.

(Biggs, V. 2005, p.16)

So dyspraxia may affect an individual's physical movement (the poorly co-ordinated, accident prone person with handwriting difficulties), his speech and language (difficulties in articulation, processing, volume control, listening and understanding), his thoughts (difficulty in planning, sequencing, and organising), his perception (the sense he makes of the world) and his vision (visual related learning difficulties).

When we begin to understand this, and explore it we learn that our bodies are extremely finely tuned organisms, each minutiae of which is dependent on the effortless fluidity of all other processes. When we are even a little ‘out of step’ it can have devastating consequences because all those details simply do not react as a fluid whole in a wonderful display of efficiency. We seem awkward, a little behind what has been said, a little confused by the mass of instruction and expectation in the very social world in which we live. We don’t keep pace, the world is less stable, and our reactions and responses are not ‘usual’.

Add to this the fact that many people with dyspraxia/DCD live with other coexisting conditions (such as dyslexia or ADHD) and it becomes so very evident that the world is harder to interpret and therefore anxiety provoking.

If people took the time to empathise, to consider life as lived by those with dyspraxia/DCD the world would be a kinder place all round.

To me it isn’t rocket science. It is about embracing the fact that people with dyspraxia/DCD (and other invisible disabilities) are in fact exceptional. They function day in and day out swimming against the tide of expectations.

As a result, they think more creatively, approach things with more tenacity, look at others with more forgiveness, and laugh at the very things that would make many of us cry.

Cut them some slack.

Dyspraxia/DCD is here to stay, embrace it, celebrate it, accept it and support those with it.

Ref

Biggs, V (2005) Caged in Chaos. A Dyspraxic Guide to Breaking Free. London: Jessica Kingsley Publishers

Nash- Wortham, M (1979) Take Time The Robinson Press: England.

Dixon, G.  Dyspraxia the Foundations.  Available as an Amazon e book at https://www.amazon.co.uk/DYSPRAXIA-Foundations-Gill-Dixon-ebook/dp/B00TA4ZYUS/ref=sr_1_1?ie=UTF8&qid=1485701918&sr=8-1&keywords=dyspraxia+The+foundations