16 January 2008

Dyspraxia

One of my colleagues spoke to me yesterday about a friend of her's who has a 3 year old son with Dyspraxia,a congenital disability that I have. Apparently she had told this person about me and said that I'd talk to her friend and the friend's husband about it and how to deal with it. I emailed this to my colleague to pass on.




This is the link to the Dyspraxia Foundation web site:
http://www.dyspraxiafoundation.org.uk/


Whilst they're often confused (even by medical professionals) and
often listed together Dyspraxia is not like Dyslexia. There is some
overlap of symptoms but they are different. For example a common
symptom of Dyslexia is not being able to read, Dyspraxics also often
have problems with reading but for us the problem is more about
parsing the word and working out what it means (especially if it is
used in a metaphor or it's meaning is shaded) rather than not being
able to read it at all. Different coloured paper, coloured glasses or
a coloured sheet of acetate can help a Dyslexic but won't help a
Dyspraxic any more than it would someone with neither condition.


A literal translation of the word Dyspraxia would be "Can't Do" or
"UnPractical". It's a condition, or rather family of closely related
conditions, that has as a core symptom problems with balance and
co-ordination. On the plus side these symptoms fade with age, it's a
regressive condition. When I was young and through my teens and early
adult years my disability was refered to as purely "Lack of
Co-ordination" or "Poor Hand-Eye Co-ordination", the only recognised
symptoms were problems with co-ordination and balance, my problems
with social skills were put down to my being shy or even 'just being
difficult'.


I first heard the term Dyspraxia when I was 29 and visited my GP for a
review of my hay fever medication and he looked at my notes and said
something like "Ah, you're the one with Dyspraxia. Did you now we
have a support group?" My first response was to say no but he
explained that the condition that I'd thought was called 'Lack of
Co-ordination' was actually properly called Dyspraxia and had a whole
host of other symptoms attached, many of which I hadn't know were
symptoms of my disability and thought were something 'wrong' with me.
I also discovered that it is a lot more common than I'd previously
thought and not restricted to men, I'd previously been told it was
three in every thousand males but from what I've read it could be as
high as one on 10 depending on how tightly one adheres to the strict
definition and, whilst it mostly affects males, does affect both
genders. Whilst there's no 100% proof it does seem that Dyspraxia
does run in families so if a child has it the odds are that one of
their parents, usually the father, will also have it to some degree.


Typical symptoms include:


  • Problems with balance, tendancy to trip, especially on moving
    vehicles such as buses (if I have to stand on a bus I have to hold on
    to a pole with each hand). To get an idea of the impact imagine
    getting moderately drunk, say 1.5 to twice the legal limit for
    driving, and trying to stand on a moving bus or walk the wrong way on
    an escalator

  • Problems with co-ordination, especially things that require a high
    degree of fine motor control such as writing, may develop 'writer's
    cramp' much more quickly than most people

  • Lack of empathy and difficulty 'reading' other people

  • Tendancy to interrupt

  • Problems using moving stairs (feelings of extreme discomfort,
    falling over, tending to go to extreme lengths to avoid and may 'over
    react' if forced to use them)

  • Bad at sports (will go to kick a football and miss, can't catch
    something thrown to them, can't hit a tennis ball with a tennis
    racquet &c)

  • Excessive emotional responses, may have fits of anger or frustration

  • Untidy dress, rumpled clothes and may have problems buttoning a
    shirt (out by one matching buttons to button holes or may skip a
    button or button hole)

  • Generally untidy (messy bedroom, untidy work area &c) but
    obsessional about order in specific things (e.g. CDs have to be in a
    specific order or grouping that may seem unfathomable to others and
    have to be put back into the cases as soon as they are removed from
    the player)

  • Problems developing physical strength, may be much worse on one side
    than the other

  • Problems gripping things, again may be much worse on one side than the
    other

  • Tendancy to take things literally and to express oneself literally

  • Inability to play a musical instrument

  • Difficulty sleeping, both difficult to get to sleep and difficulty
    staying asleep

  • Easily distracted

  • Can't draw or paint, when try they look like those produced by a
    small child (I'll bring in some of my paintings sometime)

  • Problems hearing speech when there's lots of background noise (one
    of the things that M****** does that really drives me up the wall is
    in a meeting he'll start whispering in my ear whilst management are
    talking, if I listen to him I literally cannot hear them and if I
    listen to them I literally cannot hear him)

  • Tactile defensiveness. Physical contact with another person can be
    very uncomfortable, this is one of the symptoms I have to a much
    higher degree than most dyspraxics

  • Strong dislike for change that can result in extreme frustration and
    even anger, in particular where change has happened when they weren't
    present

  • Problems with memory, especially names and instructions (if you give
    me a set of verbal instructions by the time you've reached number 4
    I've probably forgotten number 1)

  • Poor posture leading to health problems and pain (back ache,
    shoulder pain, neck pain)

There are many other symptoms as well. It's important to note that
other than the first two on that list the rest can be explained by
labelling a child as 'lazy' or 'rude'. Indeed that's how I was
labelled through most of my life and sometimes still am. Also not all
dyspraxics have all the symptoms or necessarily the same symptoms
(although the ones listed above are very common and the first four are
pretty definitive). For example a fairly common symptom is not being
able to relate a map to the physical world it represents, this is not
something I have ever had major problems with, although I do often
find it easier to navigate a map if I turn it to match the orientation
of the physical area (so if I'm facing south I'll turn the map so it's
upside down), similarly a commonly described symptom of Dyspraxia is
having problems seeing how things fit together (pattern matching
problems, navigating a maze, jigsaws or seeing how the parts of
something fit together to make the whole) but it's not something I've
ever had problems with.


In terms of dealing with it the most important step is the diagnosis.
Because so many of the symptoms can be written off as being the result
of laziness it's important to recognise them for what they are,
symptoms of a disability. As an adult it's a great relief to discover
that some of the more steress causing aspect of your life are finally
explicable.


Once you've identified the particular symptoms of someone with
dyspraxia, in particular a child, there are loads of ways of dealing
with them. Based on what I've read I think something that is
important for someone who doesn't have Dyspraxia dealing with someone
who does is that due to the symptoms relating to perception a person
with Dyspraxia literally does not see the world the way you do, or to
put it another way we see the world literally and without emotional or
other shading. Something I found very hard as a child and still do to
a degree is around time. If someone says they will come and see me at
three o'clock my first reaction is to expect them to show up at three
o'clock, probably not two fifty nine and certainly not three oh one.
Intellectually I know that three o'clock doesn't mean three o'clock
but my subconscious.


The major issues and how you solve them will vary from person to
person. You have to find out what the symptoms are for yourself or
the person you're dealing with and fit to them, a standardised
solution won't work. Below are some possible things, they may work or
they may not.


Some things you just have to live with and tolerate. For example I
have to live with the fact that any contact with another person is
uncomfortable to me but it's going to happen as part of normal life.
Shaking hands can feel like shaking a slimy fish and a 'bone-crusher'
hand shake is absolute agony, a pat on the back feels like punch, a
touch on the arm can feel like either being touched by something slimy
or burn like having an acid or alkali solution poured on. A hug can
feel like being crushed. Those things are going to happen so I just
had to learn to brace myself and deal with it. Avoiding contact or
trying to explain that it's uncomfortable just leads to being seen as
rude/antisocial or makign a fuss over nothing (one of the people on
the NJB insists on giving everyione a huig and kiss goodbye, she may
as well punch me in the face as do that). Also Dyspraxics often have
behaviours that puzzle others, for example you know how when you go to
a cafe or a pub that serves food there's often a little pot on the
table filled with different sorts of sugar/sweetner or sauces, well in
those situations I have a strong compulsion to sort them so that all
of the same are together and they are neatly lined up with similar
colours separated by dis-similar colours (so sachets of chili sauce
and tomato ketchup (both red) have to be separated by, say, mayonaise
(tends to be blue) or horseradish (tends to be very light creamy
brown)).


Other stuff can be accomodated with little effort, e.g. don't change
things around without warning [1] and only make small incremental
changes with time in between to get accustomed to the new environment,
avoid unnecessary metaphor, realise that someone with Dyspraxia might
need a little longer to digest new information, may have difficulty
telling when you're angry/upset/happy and may act inappropriately
because as far as they are aware their action is an appropriate
reaction to the situation &c.


The major issues and how you solve them will vary from person to
person. You have to find out what the symptoms are for yourself or
the person you're dealing with and fit to them, a standardised
solution won't work. Below are some possible things, they may work or
they may not.


Co-ordination problems in things like handwriting can be handled by
allowing extra time and opportunity for frequent breaks, in school the
best thing the teachers could have done for me would be to provide
handouts with the bulk of the text of the class which I could then
annotate rather than expecting me to copy reams of text off the black
board or an OHP. Problems with balance can be addressed by making
sure that in areas where it's likely to be a problem (e.g. on a moving
bus or stairs) they have something to hang on to. Apparently there
are physiotherapies that can help but I doubt that someone with
Dyspraxia (unless it's very mild) could achieve complete normalcy.


Problems with sleep can be handled by allowing for a nap during the
day and a later bed time (so let a kid of an age where you'd normally
expect them to go to bed at say 8pm stay up till 9 or 10 but let them
take a nap at lunch or tea time[2]) and minimising light and noise in
their bedroom (double glazing, thick curtains of a dark material (on
both sides) that extend further around the window frame than normal,
close fitting door &c)


Minimise background noise and avoid situations where two or more
people are talking to a person with dyspraxia at the same time.


Give instructions in writing rather than verbally and break tasks down
into chunks.


Stephen


[1] e.g. When I go to a fast food place (e.g. KFC, Burger King &c) I
always have the exact same thing, only changing when they change the
menu so forcing me to change
[2] There actually a lot of evidence that our pattern of stay up for
16-18 hours straight then sleep 6-8 hours solid is unnatural and what
we should really be doing is sleeping less at night but having a
siesta or two during the day. Far better for our health.



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