A Paperless Internet Soceity- are we pricing the poor out of modern life?

Last summer for about two weeks or so, I had major issues trying to get on the internet.  Trying to get technology to actually let me online was proving very tricky.  Firstly my mobile phone decided to stop working properly on Facebook, not allowing me to comment on anything or ‘like’ anything.  Slowly more and more Facebook functions died.  For someone who volunteers to help two local charities run their Facebook pages, this was a problem.  I knew I needed a new phone; it was about five years old and slowing down.  So I was using my local library computers, however they started to have their own issues.  Being networked when one computer goes wrong they all start to go wrong.  For most of the summer only about half the computers in the library worked and during this two week period, none decided to work at all.  So I went to use my laptop at my parent’s house, where I often go as they have Wi-Fi and I do not.  That was when my parent’s internet and my laptop stopped communicating.  So my mum said I could use her PC instead, but it was clearly not a fault with my laptop, as her computer could also not get any Wi-Fi signal.  For some reason my mum’s tablet could get online, so I managed a few of the more important tasks on that.  I managed to get my internet issues sorted out eventually, but it got me thinking about how so much of modern life relies on being able to get online. 

I love the internet; it helps me as an autistic person to communicate with others better and to feel connected to the world.  However I can see that it is becoming an issue how so many of our services and day to day functions rely on being online.  I do not have internet in my flat.  Any half decent connection requires a land line, which I also do not have.  So I would have to pay line rental and then broadband costs on top of that.  I live on benefits, which gives me a rather limited budget and Wi-Fi in my flat would eat a significant chunk of that budget every month.  I have managed by using phone data or Wi-Fi elsewhere, but society seems to revolve around the assumption everyone has good internet access.  Job searching requires internet, as does applying for benefits, which means people out of work have to find a way online.  I suspect this contributes to a significant number of people ending up in debt, having expensive phone contracts or taking out loans to pay for broadband. 

News articles come up fairly regularly about internet access and the government role out of broadband so everyone is connected even in rural areas.  They often mention internet speeds, but they hardly ever mention cost.  They talk as if broadband is free, when in fact it can be pretty expensive.  They can install as many fibre-optic broadband cables as they like, but without the means to pay for it or find it elsewhere it is always going to be hard for some people to get online.      

It was not so bad when every town had libraries with computer access to get online, but libraries have now had significant budget cuts and some have reduced opening hours a lot or closed altogether.  When I was on job seekers benefit, the staff at the job centre told us to use the library to get online if we had no internet at home, but if the opening hours are cut drastically there will be a higher demand for computers when they are open, meaning people may struggle to find a computer that is available.  Internet cafes are also increasingly rare now, with most cafes having free Wi-Fi instead, relying on you having a mobile phone or tablet to use it on.

Even if you have internet access it can go wrong and stop working.  On those occasions if you need to get in contact with someone it helps if you can still ring them or fill in a paper form instead.  However more and more companies and services seem to be online only now.  A lot of offices are now going paper free, with the claim that is to save the environment and to make accessing things like files and forms easier.  This is especially the case with a lot of government services such as applying for benefits and housing.  This can work very well, till you find you have no way to get online!

There are charities who try to help with internet access with free computer use or helping you to fill a form in online.  However the computer use is often limited to what the charity is set up to support with, such as a housing charity only letting you on housing based support sites.  My local council have free computer access in reception, but the computers are locked to certain websites such as the DWP to apply for benefits, Devon Home Choice to apply for housing, CAB charity and that kind of thing. 

Another issue can be the equipment you access the internet on.  Be it by laptop, tablet, phone or PC, they all have the potential to go wrong and break down.  Some seem to only last a few years before they die altogether or need upgrading to work with current apps and certain websites.  It is hard to keep upgrading your electronics on a budget.  I am lucky that I got my latest phone as a part birthday gift from my family with me paying for some of it myself.  Not everyone is this lucky.  The poorest people, unless they want to end up in debt can be priced out of an increasingly paperless society.

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The Christmas Special

IT’S CHRISTMAS! Noddy Holder has been yelling this at us since 1973, when Slade had a number one hit with Merry Christmas Everybody.  Christmas songs are a huge part of the festive season.  Some Christmas songs are like Marmite, with people either loving them or hating them.  This year I have been enjoying the tradition of Christmas songs and started thinking more about them. 

There are three basic kinds of Christmas songs with subcategories within each.

Carols- Christmas themed hymns

I am not religious but I like Christmas carols, they are traditional and nostalgic.  I think some have lasted the test of time as they are such well written tunes and words.  Most people know at least a few carols from their school days.  For me I think of Carols from King’s when the BBC broadcast Nine Lessons and Carols from King’s College Cambridge every year. 

Once In Royal David’s City

A Victorian carol, one of the first really well known ones to be written by a woman.  I always associate it with Carols from King’s, when a solo choir boy always starts the song.  I like this song quite a lot.

Silent Night

Or ‘Stille Nacht’ as it was originally called being an Austrian carol.  I really like this song.  Quite a few of our Carols were not originally sung in English such as the German Oh Christmas Tree.

Hark the Herald

Written by Charles Wesley, brother of John Wesley, founder of the Methodist Church.  This is one of my favourite carols, but I find it very hard to sing as I cannot sing as high as the chorus requires.  I think it is best sung by a choir with a section who can do full justice to the high parts.

Away in a Manger

This is often seen as a carol for children to sing, often used in school nativity plays.  I do not like this song very much, I think the first verse is fine, but then the lyrics are a bit rubbish after that. 

Little Donkey

Composed by Eric Boswell, who died last month in the fiftieth anniversary year of the song.  He wrote it especially for children to sing.  I find this song a bit tedious.

In the Bleak Mid-Winter

The lyrics are based on a poem by Christina Rosseetti, which has two tunes written for it, one by Holst, the other by Drake.  I prefer the tune by Holst, my mum the tune by Drake, but it might just be what you are used to hearing most.  I really like this song as it is a bit different and has wonderful lyrics.

 Good King Wenceslas

Unusual among carols, this song does focus on the nativity, but on a 10th century duke of Bohemia who was also known as Vaclav the Good.  The song tells the story of him helping the poor on St Stephens Day (26th of December).  I like this song as it is about a Christmas legend and tells a nice story. 

Other carols I also really like include We Three Kings, Hark the Herold, Carol of the Bells and Ding Dong Merrily on High.

Traditional- Well known Christmas songs that are neither a carol, nor a pop chart hit

Jingle Bells

An American song, originally written for Thanksgiving, but later changed into a Christmas song.  It is one of the first songs my nephew learnt the words to and he sang it over and over aged about two.  It is quite fun, but short and repetitive.

We Wish You a Merry Christmas     

The lyrics refer to the tradition of carollers being given Christmas treats for singing to the wealthy members of the community.  I do not like this song, it is often sung rather badly.

The Twelve days of Christmas

Possibly French in origin, the lyrics have varied over the years, with four calling birds having previously been four collie birds and at one stage coloured birds.  Although a little tedious to sing, I do quite like this song and am always rather pleased if I remember all twelve in the correct order. 

Pop Chart Songs- Christmas themed pop songs

White Christmas

This song was originally used in the film Holiday Inn and later used again in the film White Christmas, sung in both cases by Bing Crosby.   It is one of the bestselling singles in the world with over fifty million sales worldwide.  I like it in a nostalgic way, but the later verses are a bit odd sung out of context, when as a child growing up in the UK he mentions palm trees and sunshine at Christmas.

Mary’s Boy Child- Oh My Lord

The 1978 version by Boney M. is a cover of Harry Belafonte’s 1956 hit.  It is one of the bestselling UK singles of all time.  I really like this version; it has a fun calypso vibe to it.

I Wish It Could Be Christmas Everyday

Glam rock band Wizard only ever reached number four in the UK charts with this song, being beaten to the number one slot by Salde’s Merry Christmas Everybody.  I actually find this song has been played to death now and I am not a fan.

Fairy-tale of New York

Although this song never reached number one, it has been in the UK top twenty on fifteen separate occasions since originally being released in 1987.  A lot of polls site it as one of the most popular Christmas songs of all time, but I cannot stand it.  It focuses on one of the worst bits of Christmas, a drunken argument, which is not how I like to think of Christmas. 

Last Christmas

Recorded in 1984 by Wham, George Michael himself wrote, produced and played every instrument on the track.  I like this song as it has a happy rhythm, despite the lyrics of unrequited love. 

Do They Know It’s Christmas?

Bob Geldof who co-wrote the song, admits it is one of the worst songs in history.  He says it was all about generating money, the song did not matter.  I agree, the song is terrible, in fact I think the lyrics are patronising.  When dying of famine and living in a refugee camp do they even care if it is Christmas?  The fact that they keep making new version of the song just makes it worse, they could at least write a better song next time.  Just because a song is for charity does that mean it has to be a rubbish song, no!

The Beatles Solo Christmas Songs

John Lennon – “Happy Xmas (War Is Over)”

Paul McCartney – “Wonderful Christmastime”

George Harrison – “Ding Dong, Ding Dong”

Ringo Starr – “I Wanna Be Santa”

For four such talented people, the Christmas songs could be better.  I think John Lennon solo was pretty annoying anyway, but Happy Xmas is just tedious.  Ding Dong, Ding Dong, is not too bad a song, although the video to it is very strange.  I Wanna Be Santa was never actually a single, but is quite a jolly song at least.  Wonderful Christmastime would by anyone else be a reasonable attempt at a Christmas song, but coming from Paul McCartney, I just think he could have done better.

Shake up Christmas

So this was not the biggest chart success for American band Train and you may even be struggling to recall the song at all, but I love it.  Coming from their album Christmas in Tahoe, it is fun song.  You may recognise it from the Coca-Cola advert of 2010.

Other Christmas songs I like include Jona Lewie’s Stop the Cavalry, Baby It’s Cold Outside various recordings, I am partial to the Tom Jones and Cerys Matthews version and Christmas Time (Don’t Let the Bells End) by The Darkness.

MERRY CHRISTMAS TO ALL MY READERS

Pedestrians and Roads

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A lot of disabled and more vulnerable people do not drive.  This can be due to being physically unable to, learning difficulties or costs.  I cannot drive, so chose to live in a small town where most things are walking distance and the public transport links are good.  However as a pedestrian I often feel that walking is less safe than it should be when it comes to roads.

Crossing the road can be very tricky at times.  Some drivers seem to drive like they are the only people in the world that matter or that no one else could possibly exist outside their own car, at least that is how it can seem at times to me.  Some drivers act as if the rules of the road are there to pick and choose from as they like, that or they forget some of the rules as soon as they pass their test.  I am careful when crossing the road, looking both ways and waiting till it is clear.  Although it does not matter how careful I am if a car comes careering around the corner without slowing down when I have already started to cross.  I can dash out of the way if I need to and step back, but for some this is much harder.  Some people with mobility issues can struggle to get out of the way in time.

I can decide it is safe to cross as the car is clearly going the other way, but then it turns out they are coming my way, they just did not indicate.  An awful lot of drivers do not indicate at turnings.  On very busy roads this is a problem as I can wait a very long time for there to be no cars at all and it would help to know I can cross when cars are going the other way.  I am sure other drivers would also appreciate if other cars indicated as they should.

Where possible I will use a crossing such as a zebra or pelican crossing, as it usually makes crossing the road far safer.  Most drivers are good at stopping for them if someone is waiting, but I have known drivers to ignore crossings, especially zebra crossings.  This is rude and dangerous.  I also do not like drivers who creep up closer and closer to me at crossings as if to get me to hurry up and walk faster.   I may be walking as fast as I can already, since I get days when my leg muscles are more stiff around my false hip and lots of people struggle with walking fast.

Road side parking is also an issue drivers need to consider with pedestrians in mind.  Parking on the pavement can be a serious problem for some disabled people.  I am able to walk around a car, either by squeezing past it, or by walking onto the road, but a lot of people cannot do this.  Wheelchairs, mobility scooters and walking frames can make it impossible to get past a car or anything blocking the pavement.  When it is a busy road I dislike having to walk on it and some less able people find it very scary.  Parking in front of drop down curbs can also prevent some disabled people from getting to their destination.  When a driver says ‘I’m only going to be five minuets’, that is no excuse.  That five minutes might make the disabled person late for an appointment or miss the bus.  Anyway, why should they have to wait for you?

I do not totally blame drivers; some roads are poorly designed for the pedestrian.  It can seem on some roads as if adding a pavement was an afterthought and the need to cross the road never even occurred to the planners.  In my town there is a road I often need to cross that has four directions a vehicle can come from and I cannot even see one of the directions clearly.  Then there are roads where the pavement just runs, so if you do not know the road you can end up in a very difficult situation.

Another issue planners often fail to think about is adding any kind of walkway in car parks.  Having to cross a car park on foot can be hazardous with drivers not always fully paying attention yet, doing up seat belts or setting sat-nav.  Even at 5mph being hit by a car hurts.  There are quite a few places that have car park right in front of them that you have to cross in order to get to them, often railway stations.  Having been hit by a car in a railway station car park, I know I am lucky that I only got bruising to my leg, but some disabled people might not come off so lightly.

Some pedestrians could help themselves more.  I have often seen people cross down the road from a proper crossing just to save walking a few extra yards, even on very busy, fast roads.  Some people have music on far too loudly in their headphones preventing them from hearing oncoming traffic.  On some roads you can hear traffic before you can see it.  Pedestrians need to pay attention when walking by roads and especially when crossing.

Drivers need to pay attention to what is going on around them outside of their vehicle.  This includes in car parks and places you may not expect to see a pedestrian.  Drivers need to think when parking, can a wheelchair get past?  Is there a drop down curb I might be blocking?  It is important to remember a lot of less able people walk and need to get where they are going safely.

Friends & Friendship

I would not describe myself as popular and do not think I ever have been, but I have more friends now than I used to.  It took me a very long time to meet so many people I would call true friends.  People I know I can share with honestly and openly, who I trust will not judge me and at least try to understand me.  I know that when it comes to friendship it is quality over quantity, better to have a few loyal friends, than lots of people who are only there in the good times, and let you down when things are not going so well.

I remember struggling to make friends when younger.  As a child I had phases of having a few friends and phases of not really having any at all.  I remember not fitting in very well with others at school and spending a lot of time on my own during break.  At primary school I did not always mind having so few friends as I enjoyed my own company and could often amuse myself.  However by the time I went to secondary school I was feeling increasingly lonely.  I was bullied to the point I would often refuse to go to go to school.  I knew by this point that I was somewhat different to my peers.  At the age of twelve I was diagnosed as having Obsessive Compulsive Disorder, which went some way to explain my social life or lack of, but as a teenager I realised there was more to my issues than just OCD.  However I had no idea what I could do about it.  For a lot of my teens I had very few friends.  I did not really fit into any social groups.  At times it really upset me to not be invited to things and be left out of social events, but sometimes I minded less and I suppose I got sort of used to not having many friends.

During my first two college courses I did not make any friends.  I got on OK with some people, but could not say they were really friends.  When I started a performing arts course I got on somewhat better with people.  We had a common interest in theatre and performing.  Drama people are often the outsiders, the ones who did not get on so well in school and tend to be a bit different.  Also performers tend to get good at reading people and understanding them better having to work so closely together.  I did not get invited out much, but back then I did not drink alcohol and I think some of my class knew I would not have enjoyed a drunken pub crawl or nightclubs much anyway.  Over my three years of performing arts at college I got slightly better at socialising between classes.  I did get invited to a couple of parties and had a twenty-first birthday party myself.

At twenty-three I went away to university.  I felt I fitted in and got on with people there a lot more than I had anywhere else.  By the time I left university I felt I had made some real friends.  I think partly it was having common interests, but also I was more mature and had learnt how to socialise a bit better.  I had started drinking by this point and enjoyed going to pubs and clubs more.  (Although I was not really a heavy drinker compared to a lot of students and did not go to night clubs very often.)

Since moving out of my parent’s house and living more independently I have made more friends and gained more of a social life.  It helps that I understand myself somewhat better now, having finally had a proper autism diagnoses and have taken time to learn more about my conditions.  I am less angry and confused about who I am, which helps how I come across to others.  I feel calmer and have less public meltdowns.  Although I still have the occasional outburst, they do not last as long and I get over them more quickly.  Also I have learnt the kind of people who I tend to get on better with and will make more suitable long term friends for me.  I have found that when it comes to making friends age and sex does not matter so much as understanding.  People who can accept my autism and OCD and do not judge me based on my conditions.

I have had one really good friend throughout the years that I have known for longer than anyone else, since I was in my early teens in fact.  I really appreciate this friendship because this person has been there for so long and always supported me even when things in my life were not going so well, and I had no other friends.  It showed me that I could make real friends if I made the effort and it was worth doing so.

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OCD 1, Me 0

This post is about my OCD and some random things that came to me about it.  I have been writing down thoughts I have had about it for the last few months.  This started after I wrote the following as a status on Facebook.

I will not brush my hair

I will not brush my hair

I will not brush, oh dam

OCD 1

Me 0

This got me thinking about my OCD and how it affects me.  It sometimes feels like the OCD and me are fighting and I often loose, although I have a small victory every so often, which helps me to feel somewhat better.

Obsessive Compulsive Disorder is not just about being a neat freak and really well organised, although in some cases that can be part of it, but to a degree that is less helpful than it sounds.  In my case it is my own mind nagging me, sometimes almost all day.  Stress and anxiety can make my OCD flare up worse.  At times I get cross and frustrated with myself due to the OCD, making me even more stressed and the OCD even worse.

I have wasted hours of my life redoing things that were perfectly OK already.  Sometimes things just do not feel ‘right’ despite being told they are fine and even being  able to see for myself they are fine, they can still feel wrong.  At times I redo something over and over to the point it is like I am stuck in a loop and have to force myself out of it.

One way I have found that can help me to not get stuck in a loop in the first place is singing, although this only works with certain OCD rituals and not on a really stressed out bad day.  I sing to myself to distract me from the OCD thoughts or to make me feel less stressed.  It can help me to get through a task such as dressing or getting ready to go out.  Some people assume I am singing because I am really happy, which is often not the case.  Sure I do sing to myself when happy sometimes and when a song is stuck in my head, but I often use singing to block out the nagging in my own mind.

One of my worst rituals is my bed time routine.  On a bad day it can make bed time seem kind of scary for me, as I know it will take me far too long that day to get to sleep.  If I only have to do my rituals once before bed I call that a win.  However once asleep I generally do not have trouble staying asleep and sleep very well.

When I am in the middle of certain rituals and someone interrupts me it can mean I have to start again from scratch depending on the exact nature of the interruption and the stage I am at with the routine.  This can get very tedious if I am interrupted a lot.

I once saw a documentary on TV about OCD, one sufferer sick of people telling him to ‘just stop’ when it came to his rituals said it is like telling someone with a broken leg to just walk it off.  This is a very good analogy, if it was that simple to just stop, why would we still be doing it?  I do not want to be brushing my hair over and over to get it neat, to the point it gets greasy quicker than it should or checking the front door is locked three times before going to bed, but some days my compulsions are just too strong.

People who say to me ‘I can be a bit OCD at times to’ can get rather annoying when they are referring to the fact they like routine or are just a tidy person.  Most people have ways of doing certain things they prefer, but when I spent all morning getting dressed and ready to go out because I had to do certain things over and over again then it can sound a bit like a kick in the teeth.

OCD is a diagnosable clinical condition that can come with therapy and in some cases medication. However some people seem to think of OCD as a term for just being fussy or pedantic and make jokes to that effect.  OCD memes on social media also often make light of the condition and can help spread misconceptions about it.  For example ‘I have COD, it’s like OCD but the letters are in alphabetical order, as they should be’, which just totally misunderstands what OCD even is.

Then there are those who think that I can just go and get therapy for my OCD and it will go away.  Mental health therapy is not always that simple, and OCD therapy, at least on the NHS is very rigid and in my case hardly made a difference long term.  The only thing they seem to offer for OCD is Cognitive Behavioural Therapy, which is supposed to help reduce ritualistic behaviour by helping you to confront your obsessions and resist the urge to carry out compulsions, learning instead to tolerate the anxiety till it is no longer such a dominant voice in your mind.  However I was only allowed twelve sessions of CBT in total, and they kept trying to make them over the phone or online and not in person.  Also I have since been told that CBT for autistic people is often pretty ineffective, but the NHS seem to not like to treat both at the same time even though they are co-dependent conditions in my case, I guess funding works one name condition at a time even if you have conditions that can be hard to separate from each other and tell which is which at times.

All the nagging in my mind, the rituals and redoing things over and over can be mentally draining at times.  By the end of some days I feel very tired from having had my own brain have a go at me all day, however going to bed will then be a whole other set of rituals that will mean I sometimes take ages to finally get into bed.  Meaning that I am often still tired the next day and some days never seem to feel fully awake.  This is one of several reasons I do not feel able to work a full time job and come off benefits right now.

OCD is often a lonely and confusing condition when other people do not understand what you are going through, even when they try to understand, people often seem to not really get what it is like to live with.  I now use mental health chat rooms and sometimes find other people who have OCD which can be interesting and helpful, making it slightly less isolating for me.  I wish that I could have had places like this when younger.

I count myself somewhat lucky in that I do not have the extreme version of OCD where people think loved ones will die or get hurt if they do not do their rituals correctly and can have nasty visions of things happening to people they care about.  I gather this type of OCD is much rarer and often occurs in people who also paranoid.  However this does not mean my type of OCD is easy to live with and it is still a real condition with real problems attached to it.

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Perthes Disease Frequently Asked Questions

These are some of the questions I get asked most on my Facebook page Adults with Perthes Disease and have come across on other Perthes related pages and groups.  I am answering them as best I can from the research I have done on Perthes over the years and on my experiences of having had it myself.  However I am not a medically trained expert in anyway and advise you listen to your doctor and medical team first and foremost.

Is pain down the leg normal?

Referred pain down the leg is common often to the knee or even feet. As a child I sometimes got shooting pains down the leg from my hip.  As an adult I get a dull ache down the leg possibly due to my bad walking style.  My feet turn out too much as did my knee before I had my hip replacement.  I have found orthotics (insoles inside my shoes) from podiatry helpful.  Mine have a slight slope on the heal to help turn my feet forward a little.

The non Perthes affected hip and leg sometimes hurt, should I be worried?

No, this is fairly common.  The good hip often has to compensate for the Perthes side by taking more of the body weight meaning the muscles sometimes become rather sore.  Perthes can affect both hips, known as bilateral Perthes, but this is quite rare, occurring in only about twelve percent of cases.  If the pain in the non Perthes hip occurs frequently and becomes really bad it is worth mentioning it to the doctor just in case to get it checked out.

How much should my child be non-weight bearing on the Perthes hip?

This is something you must listen to your doctor and physiotherapist about.  It depends on what stage the hip is at during the Perthes and re-growth.  Whilst non-weight bearing swimming is usually advised by physiotherapy as a good way to keep the muscles from getting too weak, so that when full walking does resume the muscles are not too sore.

What pain medication seems to be the most affective?

I will never advise specific drugs and you should never take drug advise online for safety reasons.  Without knowing a persons medical history it is not a good idea to suggest medications. People can have allergies to certain medications or find that the side effects outweigh the benefits for them.  What works for one person may not for another.  If you wish to try pain medication, talk to your doctor who can prescribe something for you.  A good doctor should keep an eye on you with regular check-ups when on any new strong pain medication.  There is a place for pain medication if used sensibly and they help a lot of people.

Any ideas on non-medication pain relief?

I found a microwave wheat bag very helpful on my hip.  When sitting or lying down it kept the hip warm and unlike a hot water bottle it bends around the joint.  When moving about a stick on heat pad can help, but must be stuck over the underwear and not directly onto the skin or it can burn.  A TENS machine uses mild electrical impulses to help with pain.  I found one somewhat helpful, but it took some getting used to the electric pulses.  A warm bath is great for any muscle or joint pain, especially with Epsom bath salts.

Is a chiropractor a good idea? 

A chiropractor uses their hands to help relive problems with bones, muscles and joints.  According to the NHS website they are considered an alternative and complementary therapy.  They are not widely available on the NHS and private treatment can cost anywhere between £30- £80 a session.  A chiropractor should by law be licensed, but is not medically trained as a doctor.  I have never been to a chiropractor myself and can’t say they are good or bad for you, but I would suggest trying a physiotherapist first as they are recommended by doctors far more often.

Would a memory foam mattress help?

I think a memory foam mattress might help a tiny bit, but not a great deal.  An orthopedic mattress is very expensive and night time pain can be helped in other ways, such as a microwave wheat bag or a cushion or pillow under the hip.  If a new mattress is needed anyway it might be worth asking your doctor what they suggest, but I would not rush out and spend a lot of money on one without some research first.

Is bed wetting Perthes related?

Not directly.  Many children wet the bed and it varies as to when they start and stop doing it.  It could be that the hip pain is causing anxiety which is in turn causing bed wetting.  Also getting up in a hurry for the toilet when in pain can be tricky.

Does Perthes lower the immune system?

No, some children get more ill than others with or without Perthes.  There is so far no link to Perthes and the immune system.

Is Perthes Hereditary?

Research on the causes of Perthes is being done.  In the UK an ongoing study suggests there maybe a hereditary link in a small number of cases, but not in most.  There does not seem to be a high chance of passing it on to children if you had it yourself, but I gather there is more research results to be published on this fairly soon.

As an adult I am experiencing back pain, is this related to having had Perthes as a child?

It could be, limping for years, long term use of crutches or a walking stick and walking with a bad gait can affect the posture.  I have had back, neck and shoulder pain on and off all of my adult life.  I have found simple exercises from physiotherapy help me a lot if I keep them up regularly.  A shoe raise in childhood can help to prevent limping all the time.

How can I get a buggy or wheelchair for walking longer distances or bad days?

Physiotherapy can provide wheelchairs, but are often reluctant for children as they think it will cause the child to become overly reliant on it and not walk as much as they should, but I found a wheelchair very helpful on my worst pain days and for days out with more walking involved.  You can contact your local Red Cross centre who often have wheelchairs and buggies to loan out on short or longer term basis.  The Perthes Association in the UK have good advice on where to get hold of any equipment you may need.  There are various local charities that help disabled children to get equipment; an internet search can often provide a link.  Some larger tourist attractions also have wheelchairs you can loan for the day, often worth asking at the ticket office or checking online before you go.

 

For more information on Perthes Disease the Perthes Association are very helpful and can answer a lot of questions you may have.    https://www.perthes.org.uk/

Another site you may find helpful, especially if you are in America is Perthes Kids Foundation http://www.pertheskids.org/

 

 

Autism Posts On Social Media

When I was diagnosed as autistic a couple of years ago I started following a few autism charities and support pages on Facebook.  I find they often post some interesting articles, help me to understand my autism better and help me to explain to others what it can be like being me as an autistic person.  However there are times I get frustrated at some of the posts from these pages.

‘Top Ten Positive Autistic Traits’, ‘Terrific Traits of Autistic People’, ‘Positively Autistic’, Google positive autism and this is the kind of blog and Facebook post titles that come up.  These kinds of posts appear in my Facebook news feed from time to time and always manage to annoy me.  Sure, autism has some positive traits, but these are outweighed by the negative ones.  The fact that we even have autism charities tells you it is not such a great thing to have or we would not need the support.   A lot of the traits typically said to be positive, I have actually found to be negative in my life.

Positive Trait Negative Reality
Makes me honest, straight forward and unable to lie.  Some people say they like this about me. I am told that I can be too blunt at times.  Being overly honest can hurt others feelings, or make me appear rude.
Very good attention to detail, work more likely to be thorough and accurate. Too caught up with tiny details that may not matter over all and not always seeing the bigger picture.
More focused on a project, less easily distracted. Even when more important matters may come up, I could be too focused on something that is no longer relevant.  Risk of ignoring others to my loss whilst focused on a project.
More organised and better at planning. So organised that I worry or even panic sometimes if things do not go to plan or other people change things without warning.
Expertise in specialist interests. None of mine seem relevant to the job market. Have been told I can seem lecture like on some subjects that I am really into and bore people after a while.
 Exceptionally good awareness of myself. Including being aware of my faults and failings which can be depressing at times.

 

How am I supposed to be positive about my autism when I am called rude, selfish or an annoying know it all fairly regularly?  When you manage to annoy other people on such a regular basis without meaning to it can make you feel less than positive about it.

Some of the worst posts are those phrases you are supposed to share on your Facebook wall such as ‘My child has autism, what’s your kid’s super power?’ or ‘I bless all autistic children’.  Almost all of the phrases are about autistic children, it is as if once you are adult you are suddenly no longer autistic or it at least no longer matters.  A lot of the phrases make out how great it is to have autism and some almost make out we should celebrate it.  While it is not a tragedy, it is not something I am going to have a party for and get really excited to have.

imagesPosts like this do not even mean anything!

It would appear from some posts that I am not an individual, but some kind of clone.  It may seem petty, but the use of language matters when writing autism posts.  Too often posts are written using pronouns such as them, they, and all.  It makes it sound like all autistic people are exactly the same and that we have no individual personalities.  Often the worst examples of this can be found more in the comment sections of autism posts.  This gets annoying when you find out some of these people who comment are support workers, teachers or parents of autistic people who should know better.  ‘They are all so well meaning’ or ‘they are all so wonderful’, makes us all sound like we are too stupid to know any better, and that every time we say something less than helpful or nice we actually do not mean it that way.  Yes there are times I say the wrong thing and appear selfish or rude when I do not mean to, but there are times I am less than well meaning.  It makes it sound as though we can never do any intentional harm.  I do not like to think of myself as a nasty person, but I admit to times I have said or done things that make me less than wonderful, and I knew I was doing it.  Not all autistics are wonderful, loving or nice, nor are they all horrible, rude and annoying.  Autistic people have personalities that also affect behavior and attitudes, just like everyone else.  Some days I am in a bad mood and not so great to be around.  Sometimes this is my autism, sometimes it is just me having been really annoyed by something or someone, my hormones or lack of sleep.  I am not an all, they or them, I am me.

I think more posts on these pages should be written by autistic people themselves.  They can give hints and tips they have found useful to other autistic people and tell parents and those who work with autistic people what it can really be like for some of us who actually have it.  One of the best support groups on Facebook I have found is The Girl With the Curly Hair.  She is autistic and writes very well about what it can be like to have autism.  It is refreshing as an autistic female myself to have another autistic female who can communicate well instead of the usual male bad at communication stereotype.  Plus the comments on her posts tend to be from people who seem to understand what being autistic can really be like.

Try not to share those autism phrases that mean well, but actually can come across as slightly patronising a lot of the time.  If you should choose to comment on an autism post remember not to lump all autistic people in as one mass.  That aside there are some really good posts about autism out there and they can aid understanding, but try to remember not every post will apply to every autistic person, autistic people are individuals.