for parents and carers of children with a limb difference

Transcription

INFORMATION
FOR PARENTS AND CARERS
OF CHILDREN WITH
A LIMB DIFFERENCE
Contact information:
Limbs 4 Life Inc.
ABN: 25116 424461 A0046472T
Phone: 1300 78 2231 (toll free)
Email: [email protected]
Web: www.limbs4life.org.au
PO Box 282 Doncaster Heights VIC 3109
Disclaimer: This guide has been developed to provide parents and carers of children
with a limb difference with information. Limbs 4 Life Inc. does not endorse any specific
technology, product, company, service or device. Consumers are advised to consult with
their healthcare providers before making any decisions involving in their care. Information
contained in this booklet is a general guide and does not replace medical advice.
© 2013 Limbs 4 Life.
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INFORMATION FOR PARENTS AND CARERS
CONTENTS
1. Welcome & overview
2. Hearing the news
Congenital limb difference
Acquired limb difference
Emotional health
3. What happens now?
The professionals
Support services & programs
Funding & finances
Medical terminology
4. Adapting to everyday life
Dealing with unwanted attention
New environments
Support for siblings
Bullying
5. Glossary
6. Directory
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WELCOME
& OVERVIEW
The aim of this handbook is to provide practical information for
parents, family, caregivers and community members who support a
child with a limb difference. We hope that this booklet is a helpful
resource and that you are encouraged and empowered to ask
questions, seek answers and the right support to suit the needs of
you and your family.
Limbs 4 Life is a non-profit organisation that operates under the
vision that no one should go through the trauma of limb loss alone.
All people with limb loss – adults, children and their families, should
have access to an organisation that understands their circumstances,
can facilitate connections with others in similar situations and provide up-to-date information. Limbs 4 Life offer a range of programs
and services specifically for children and youth with limb difference,
and their families. This includes a volunteer peer support program,
parents networking sessions, social and sports events and educational programs as well as information via a variety of publications
available through the website
http://limbs4life.org.au/children-and-youth-services.html
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LIMB LOSS IN AUSTRALIA
In Australia there are approximately 137,000 people living with limb loss (Australian
Institute of Health and Welfare, 2001). Some people are born with a limb difference
but others acquire one from having an amputation to remove all or part of a limb.
This can occur at any stage of life due to illness or trauma. Limb difference can also
vary in severity – from the webbing of fingers and toes (digits) to partial or full limb
loss. One, two or all four limbs can be affected and for congenital limb differences
there is often no known cause.
Finding out that your unborn child has
they do it, whether it costs anything. Never
a congenital limb difference can be an
mind having to learn a whole new vocabulary
extremely difficult time. Parents report feeling
of medical terminology. In this section of the
a range of conflicting and overwhelming
booklet we hope to get you off to a good start
emotions. If your child has had an amputation
with an overview of many of the services
due to an accident or illness you might also be
available to children with a limb difference as
experiencing conflicting emotions. Feelings
well as highlight some tricks of the trade from
of grief, as the future you had imagined for
people who have been there and done that.
your child is taken away; but at the same time
also feeling relieved and thankful that your
child is alive. Rest assured that these feelings
are normal and will pass in time - but while
they are present they can take a toll on you as
an individual and also on your relationships.
There is lots of support out there for you and
we hope that this booklet helps to point you
in the right direction.
Even though it might feel like life will never be
normal again – rest assured that it will. You will
take your baby home and he or she will get
along just fine and will learn to do things quite
well, it just might be in a slightly different
way to other children. Or, by the time your
child leaves hospital after having amputation
surgery they will be well on their way through
their rehabilitation – learning to do all sorts
Over the course of time you will meet a range
of things in a slightly different way. There will
of health care professionals in a range of
be new experiences which will undoubtedly
different settings. Navigating the health care
present challenges along the way but there is
system can be challenging! There is so much
nothing that will stop your child from living a
to learn – who people are, what they do, where
full and happy life.
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HEARING THE NEWS
Congenital Limb Difference
FINDING OUT
Learning that your baby has a limb difference
Learning that your baby has a limb difference
future that had been so eagerly anticipated
can leave parents in a state of disbelief and
would no longer come to fruition and instead
shock. Often parents learn this news during a
they are left with a whole lot of unknowns.
routine ultrasound but sometimes these scans
are unable to pick up very subtle differences,
which mean you may not have found out
until your baby was born. Anyone who has
been there will tell you that they just couldn’t
believe what they were being told. These sorts
of things happen to everyone else and not
them. After the initial shock comes feelings of
sadness, grief and often guilt. Grief that the
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These feelings of grief and sadness are very
normal. It’s part of the process of coming to
terms with this change but that’s not to say
it isn’t hard. The section on Emotional Health
(page 8 of this booklet) provides some more
information which might help you work
through the ups and downs of this time.
SHARING THE NEWS
Many families have found the time between
over and over. By now you might have spent
the diagnosis and birth of their baby to
hours researching information and are likely
be a very useful period for reflection and
to know a lot more about your child’s future
preparation. Expectant parents often choose
challenges than anyone else. You’re the
to share this news with close family prior
best person to educate them so try to have
to their baby’s arrival. If you choose to do
patience, even though it can be tiring and
the same be prepared to receive a range of
often frustrating.
reactions and to recite the same information
GETTING SUPPORT
Talking about your baby with friends and
before your baby arrives, and Limbs 4 Life
family is a good thing to do and will bring
offer a peer support program where you can
some comfort – but this will be different to
meet with other parents who have been in the
talking to someone with professional skills,
same situation as you. These resources can be
or someone who has had similar personal
really helpful in preparing you for the arrival
experience. Some clinics may offer antenatal
of your baby.
counselling services to help support you
MEETING YOUR BABY
When your baby is born, take time to marvel
hand so keeping a written record might take
at, enjoy, and bond with them. Nine months
the pressure off your memory.
of eager expectation shouldn’t be tarnished
by the fact that they’re missing all or part of
a limb. There will be plenty of challenges to
come – and most of these will be universal to
all new parents. So enjoy the first few days as
a family.
When you go home and introduce your baby
to family and friends, you will, more often
than not, have to explain your child’s physical
differences to family and friends. Let them
interact with your baby as you would in any
other circumstance. Reassure siblings that
Depending on your circumstances there may
their new sister or brother will be ok. Young
be more medical appointments to attend to.
siblings may find it difficult to understand the
Keep a notebook and folder handy to write
limb difference so take the time to let them
down and store any information you’re given.
ask questions and do the best to answer them.
Sleep deprivation and new babies go hand-in-
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Acquired Limb Difference
Your child might have had an amputation
life saving measure. It is however also likely
due to trauma or severe illness. Both of
to bring feelings of sadness and grief. Not
these situations can put a great deal of
necessarily sadness about the loss of the
pressure on a family, on the individuals, and
limb but about the potential impact that limb
on relationships. It is possible that the news
difference will have on your child’s future.
that your child will require (or has had) an
The following section on Emotional Health
amputation will bring some feelings of relief
provides further information on working
– especially if amputation surgery was a
through the emotional rollercoaster.
KEEP TALKING KEEP LISTENING
It is really important to reassure your child.
you may have and can be accessed through
Explain to them what will happen (or what did
the hospital. Limbs 4 Life offer a peer support
happen) and why. Try to talk openly as a family
program which can put you in touch with
about how you feel and work together to find
other parents of children who have undergone
answers to any questions. There is lots of
an amputation. Talking about what you are
support available to you if you should choose
experiencing with someone who has had
to access it. Social workers are specialists in
similar experiences can be a great comfort and
helping you to work thorough any concerns
an excellent source of information.
KYLE’S JOURNEY
Kyle was a healthy 14 month old baby. His
temperature was up and I remember saying to my
husband that something was wrong. Kyle wasn’t
well. I managed to get a doctors appointment for
later that afternoon. I was told that Kyle had a
virus and to come back tomorrow morning if I was
still concerned. By 8.30am the following morning
Kyle had been taken by ambulance to the Mater
Children’s Hospital in Brisbane. After several
hours of tests we were told he had pneumococcal
septicaemia...
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By the time we saw him just a few hours later, he didn’t look
anything like our baby. He was swollen and the rash had spread
quickly. Over the next few days his extremities turned black. He was
transferred to the PICU and spent the next 14 days on life support.
On day 10 Kyle suffered a stroke. Later that night he deteriorated
further and had another bleed. We were called in and shown the
scans. We were told that Kyle probably wouldn’t survive the night
and if he were to survive a bleed like this he would never walk
or talk. He clung to life for another four days and was then taken
off life support, and later sent to a ward. Over the next few weeks
Kyle’s fingertips fell off as we bathed his hands. Attempts were
made to save his feet but eventually they were both amputated.
Intense physiotherapy, speech therapy and occupation therapy
began and continued over the next ten weeks of our hospital stay.
Three months after first going to hospital we returned home.
From here on in Kyle’s recovery was rapid. And after several more
months, after the skin grafts had healed, Kyle was fitted with his
first set of stumpies (tube like attachments). He was soon running
around the back yard with his brother Jake. The following year Kyle
was fitted with his first set of prosthetic feet by Barry Leech on the
Gold Coast. It was a magical day. There was a lot of cheering and
clapping in the room but also plenty of tears. Kyle just got up and
ran (not walked) in his new “legs”.
Late last year Kyle received a pair of prosthetic running blades
from Ossur through a project at the Royal Children’s Hospital. He
is now a member of the Jimboomba Little Athletics Club. He trains
two nights a week with his coach Ralph and competes on a Friday
night. Kyle has a lot of hard work ahead, at this stage he may not be
winning the races but he certainly has the winning smile. I have a
saying I have kept for Kyle that I came across when he was little. I
am not what happened to me: I am what I choose to become.
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Emotional Health
The loss of your child’s limb can be a
your child regains levels of independence. In
confronting and challenging experience and
the meantime however it is helpful to know
it is not uncommon to experience feelings of
a bit about why you might feel this way and
sadness, grief, frustration, anxiety, anger or
what you can do to help yourself, your child
depression. Many families report that these
and family during this time.
feelings diminish over time, particularly as
GRIEF & LOSS
As a parent (or parent-to-be) you’ve probably
emotional roller-coaster then rest assured this
spent time dreaming about what the future
is normal! Feeling sad about these changes
may hold and making plans for you and your
is also normal, and it’s okay – even a good
family. Learning that your child has (or will
thing, to grieve about the potential impact
soon have) a limb difference might cause you
of a limb difference on your child’s future.
to doubt these future plans. Many parents
Acknowledging that things will be a little
feel a great deal of sadness and grief at the
different from now on and adjusting to this
idea that this eagerly anticipated future might
change will take time and can be painful.
be taken away. If you feel like you’re on an
HELPING YOUR CHILD TO GRIEVE
If your child was born with a limb difference
on their parents as you will be involved in
they will naturally develop ways to do
making decisions, especially regarding their
things. That isn’t to say that they won’t have
rehabilitation, throughout their childhood and
challenging times where they wish they
adolescence.
weren’t different from their friends and might
be sad that they are missing all or part of a
limb. If your child has an acquired limb loss
(from an amputation) they will undergo a time
of physical and emotional adjustment. They
are likely to sometimes feel sad and ask why
this has happened to them. They may at times
be frustrated by their physical differences.
At times they might take their emotions out
10 INFORMATION FOR PARENTS AND CARERS
One of the best things you can do is to keep
talking about how you all feel. Encourage them
to ask questions and answer honestly and
openly. Remember that we are all individuals
– we are all physically different, emotionally
different and all have different and unique
gifts and talents. This is what makes each
person special.
LOOKING AFTER YOURSELF
Be kind to yourself. Allow yourself the time
process quite quickly but for others it might
and space to experience and deal with your
take longer to adjust.
emotions. Spend time with supportive friends
and family and give yourself the best chance
at keeping stress levels low by eating well,
getting some rest and some exercise. Allow
yourself time away from the grief – it’s ok to
laugh. Have some fun with your family and
friends. Importantly, don’t compare yourself to
others. Remember that people cope differently
and everyone’s experience is totally unique.
Some people will move through the grieving
Speaking with and meeting other parents
who have children with a limb difference
may provide you with insights that your nonaffected family and friends simply cannot
provide. Sharing your experience with
someone who has been there before can be
a huge comfort. They can also provide you
with emotional and practical support, such as
access to helpful resources.
GETTING PROFESSIONAL HELP
If you are able to, speak to a psychologist or
Your child might benefit from talking to a
counsellor before the birth of your child or
psychologist who specialises in working with
prior to your child having amputation surgery.
children. Some people find that regular visits
These people are professionals and can assist
when their child is school aged has helped
you with the many complex emotions that you
to develop a good relationship with their
may be facing and can help to equip you with
specialist and promote open discussion – so
tools to help you and your family during this
that if issues arise they have their support
time. Having somewhere safe to talk about any
network in place. Other families prefer to visit
fears or concerns can be of great comfort.
a specialist in times of need. Psychologists
Your family doctor can refer you to a local
psychologist or counsellor. Medicare normally
provides financial support for an initial ten
sessions with a psychologist, upon referral
from a GP, but upon further assessment
you may be eligible for a total of sixteen
and counsellors are there to help you and your
child, and can assist you with working through
any challenges. Like any service or specialist,
you may wish to visit a number of different
people before you find the one with whom
you feel comfortable.
sessions per calendar year. If you have private
If you would like to talk to someone right
health insurance, this may enable further
away please consider contacting one of the
appointments to be funded, if required.
organisations listed at the end of the booklet.
INFORMATION FOR PARENTS AND CARERS 11
WHAT HAPPENS NOW
Health Care Providers
During the hospital stay or when your child
different individuals one-on-one. This can be
needs to start receiving medical assistance,
confusing and sometimes intimidating if you
you will meet with a team of health care
don’t understand who people are, why they
providers who will work together to support
are there and what they do.
you and your child. This team approach is
a multidisciplinary approach which means
a number of providers will work together to
help to deliver the best possible outcome.
In most situations no single allied health
provider works independently from the other.
It is always a team effort. This means that you
will often find yourself meeting with a group
of people all at once, or meeting with many
First of all – if you don’t know who someone
is or why they are there – just ask! There is
no question that is not worth asking. If you
understand what services or support that
person can offer your child then you will be
able to communicate with them much more
easily and will probably achieve a much better
outcome for your child.
Paediatric rehabilitation specialists/consultants
Provide specialist care and coordinate the team and clinic
Help you to set goals and decide what’s important in your child’s life
Monitor your child’s growth and development with the team
Physiotherapists
Design programs to assist your child to meet their mobility goals
Develop programs to suit your child’s ability; this might involve games or a
gym program
Provide advice to help you look after your child’s residual limb
Assist with activities to improve balance, flexibility and strength to help with
mobility
Prosthetists
Assess your child to decide which prosthesis (if any) will best suit your child’s
requirements and mobility goals
Design, fabricate and provide your child with their prosthesis
Will see your child for regular reviews and adjustments
Will update your child’s prosthesis as they grow and develop
Occupational Therapists
Help your child to achieve independence by providing assistance with
learning activities of daily living such as dressing and eating
Will help to arrange access to assistive devices if required
Provide specialist care to children with upper limb loss – training your child to
use their upper limb prosthesis
Create goals and action plans and help your child achieve them
Liaise with schools in regard to practical issues like accessibility
Social Workers
Provide you and your family with confidential counselling assistance
Provide emotional support, and help you and your family to manage the
adjustment relating to limb loss
Can assist with accessible parking permits and other formal assistance that is
available – they may recommend Centrelink services if applicable
Assist you to find local community support
Liaise with schools in regard to emotional or peer issues
SUPPORT SERVICES & PROGRAMS
There are many different services and
funded; non-profit organisations may be
programs that may be available to you and
partially funded; and private services will
your child. Working out whether these will
charge a fee for service. Not all services will
work for you and how to access them can be
be right for you and your family so spend time
confusing. The best thing to do is to keep
investigating, asking questions and working
asking questions. If you don’t get an answer
with the team of professionals to find the
that helps from one person – ask someone
right combination for you and your family. The
else. Sometimes it helps to write questions
section on ‘Funding and Finances’ provides
down and to keep a folder of information
some more information on the financial side
you are given. You are probably taking in
of things.
new information at an incredible rate so
help yourself to remember by keeping good
records.
As a parent or carer of a child with a limb
difference you may be offered support from
the following services: Limb Clinics, Prosthetic
Different services may be offered by different
Services, Early Intervention Services and Peer
organisations. For example, public hospitals
Support Networks. These are outlined in more
and government services might be fully
detail below.
LIMB CLINICS
In Victoria, children with limb loss have their
adolescence and provide an opportunity
needs looked after by a specialized clinic
for assessment by a number of medical
at the Royal Children’s Hospital in Parkville,
professionals at the same time. It can be
Melbourne. This is the Limb Deficiency Clinic
intimidating to meet with a group of people
and it is run by an orthopaedic surgeon
all at once but remember that they are there
and is also attended by a physiotherapist,
in the interests of you and your family. If you
occupational therapist, prosthetist and
have any questions then now is a great time
social worker. These team meetings will be
to ask. This service is funded through the
ongoing through your child’s childhood and
hospital so there will be no cost to you.
PROSTHETIC SERVICES
A prosthesis is an artificial limb and this is
use one. The reasons for this are the level of
supplied and maintained by a Prosthetist. You
limb loss, the potential benefit that can be
might see a Prosthetist in the hospital or at a
gained by using a prosthesis and your child’s
private clinic. Some children use prosthesis for
willingness to learn how to use one and also
their entire childhood and adolescence, others
to persist with one!
use it for only certain activities, others use one
for only certain periods and still others never
Your team meetings at the Limb Deficiency
Next comes the hard work. Your child will
Clinic might include discussion about using
work with a Physiotherapist or Occupational
a prosthesis. The decision to start using one
Therapist (or both) to learn how to use
is made here. It’s really important to have
the prosthesis for things like walking and
realistic expectations of what a prosthesis
balancing, or for every-day tasks such as
looks like and what it can do. A great place to
eating and drinking. This can be a very
start is to look at some examples. Prostheses
frustrating time as tasks which may have been
can sometimes look quite realistic and other
performed very easily previously are now very
times they look very different. Talk to your
difficult. Encourage your child to persevere.
Prosthetist and ask to see some examples. It
Their hard work will be rewarded in the end.
takes time to learn to use a prosthesis. Time
and lots of hard work. Your child will have to
learn how to do every-tasks in a different way.
As your child grows the prosthesis will need
to be adjusted. When it can’t be adjusted
any further, a new one will need to be made.
If your child is going to try a prosthesis
Generally you and your child will need to
you will be referred to a Prosthetist for
attend a review appointment with your
an assessment. Your Prosthetist will take
prosthetist once every six months. Currently
some measurements and might also take a
the cost of basic prosthesis for children are
plaster cast of your child’s residual limb to
covered by government funding through the
make a prosthesis that fits exactly to your
hospital, and so there will be no cost to you.
child’s shape. This doesn’t hurt – the plaster
If more advanced prosthesis are required
gets warm as it goes hard but it causes no
there might be an out of pocket cost. Talk to
discomfort. A few weeks later you will need to
your Prosthetist about the different funding
come back for a fitting appointment where the
options.
Prosthetist will make sure the prosthesis fits
correctly and might make some adjustments.
EARLY CHILDHOOD INTERVENTION SERVICES
Early intervention services give specialised support to children and families in the early years
(from birth to school entry). This includes providing:
• Information and advice that addresses the individual needs of the child and family
• Links to services and access and coordination of services such as respite care
• Additional support to improve access and participation in kindergarten and child care services
• Assisting with the move to school
• Parent support
These services are funded through the
http://www.education.vic.gov.au/childhood/
Department of Education and Early Childhood
parents/needs/pages/ecis.aspx or by calling
Development (DEECD) with more information
1800 783 783.
available from their website INFORMATION FOR PARENTS AND CARERS 15
PEER SUPPORT
A peer support network is one person or a
Social gatherings and events provide a great
group of people who have been through a
opportunity to meet other families and
similar experience to you. A parent in a similar
children. A number of these events are offered
situation or a child with a limb difference, who
each year via various amputee support groups,
can chat to you and your child, may help to
networks and Limbs 4 Life. All members of
ease concerns that you might have about your
the family are usually welcome, including
child’s development and their future.
extended family such as grandparents. As
Meeting others allows you to ask questions
and discuss issues that only someone who
has been through it before can answer
and understand. Many people feel more
comfortable discussing personal issues with
someone who understands what they are
going through, someone who has hard earned
experience and can appreciate just how you
feel.
KAYLA’S JOURNEY
Our daughter Kayla was born with a condition
called tibial hemimelia – an abnormality of the
tibia bone. Her femur and tibia were joined at the
thigh, appearing as a bone split into two parts.
She was also missing a knee joint, her fibula was
short and her foot was clubbed. We discovered her
condition at about 19 weeks into my pregnancy,
but the doctors were unsure of the cause. Kayla’s
leg was amputated above the knee when she was
two years old. We considered it a blessing that
there was no chance of a leg reconstruction – the
decision of whether or not to amputate was made
for us. Thankfully, Kayla recovered more quickly
than expected and was home three days after her
operation.
your child grows up it may be beneficial for
them to meet and see other children and
teenagers with limb differences; this can
promote the development of friendships and
can provide one-to-one support. This can help
to reduce some of the feelings of isolation in
children and diminish the sense of ‘I’m the
only one’, during the pubescent and teenage
years.
This was obviously a challenging time for us, but we viewed Kayla’s operation as a means to her
life-long independence. Without the operation, she would never have had the opportunity to
walk unaided. Kayla’s surgeon had an excellent rapport with Kayla and ourselves, and we had
confidence in his direction and advice. We joined Limbkids when Kayla was a baby, and that was
our first contact with other children with limb differences. It was most helpful and encouraging
to realise that we weren’t the only ones. We also received a great deal of support from family,
friends and the staff at the Royal Children’s Hospital.
The development of Kayla’s first prosthesis was a difficult time. She didn’t like anyone touching
her stump, as it was hypersensitive and she didn’t understand what was taking place. We were
given a clear plastic mould of the socket to take home for her to play with, decorate and become
familiar with. This is when ‘Lizzy Leg’ was named, becoming the fifth member of our family. Kayla’s
prosthetist had an excellent bedside manner and earned Kayla’s trust quickly. It wasn’t difficult
to keep her leg on, but getting a correct fit was challenging because of the unusual shape of
her stump. Her stump still consists of two bones, with the femur and tibia growing in opposite
directions. This will need to be addressed at a later date.
Kayla took her first steps in the family room at home, holding onto the coffee table. It was a
jubilant moment for me (tears of joy). Fortunately, I captured it on video! That night, when
my husband came home from work, Kayla walked out to greet him. It’s a moment he will long
remember. By the next morning, Kayla was walking around the house, pushing a toy pram for
support and singing at the top of her voice. Kayla can do everything other children her age can do
– run, jump, climb play equipment. She is also taking swimming lessons. She constantly amazes us
with her agility, and her outgoing and confident nature carries her well.
As Kayla is growing quickly, she has regular visits to the prosthetics unit. When questioned by
other children about what happened to her leg she replies, “This is Lizzy Leg. She helps me to run
and walk and I get to choose her colour”. The other children are inquisitive but very accepting.
I am so proud of my little girl and her ‘can do’, independent attitude towards life. She is my
greatest teacher. “No Mummy, I can do it myself”, is a common phrase heard in our home. It can
be hard at times to step back and let her learn for herself, but this approach has furthered her
independence. We have deliberately tried not to wrap her in cotton wool, and we are now seeing
the benefits of this type of approach as she matures.
Funding & finances
Learning to navigate the health care system
know if there will be a cost to the service,
is not an easy task. You will meet many
ask when you are referred or make your first
people in different locations, for a variety of
appointment. This is not a silly question.
appointments that might include assessments,
There’s no doubt that understanding how
fittings, tests, consultations and reviews. While
the health care system works is confusing no
all of these things are important to ensure the
matter how practiced you are. It’s almost like
best care for your child, sometimes working
learning a new language so to keep your stress
out what cost there will be (if any) - between
levels low, find out all you can before you go.
initial out of pocket expenses, reimbursements
and gaps – can add unnecessary frustration.
If you have a question, always ask! If you don’t
As a parent or carer of a child with a limb
difference you might need to access some of
the following services.
HOSPITAL COSTS
Most public hospital costs will be covered by
health insurance, you may choose to use a
Medicare.
private hospital; however, some specialists
If you have private health insurance, talk to
your provider and ensure that you are aware
of any gap fees. Should you have private
and teams may only be available in public
facilities.
13 20 11 or www.medicareaustralia.gov.au
SPECIALIST CARE
Specialist doctors, surgeons and consultants
may be recovered. The person booking your
generally charge a fee per consultation, which
appointment will be able to give you the fees
is reimbursed in part by Medicare or private
schedule and if a gap fee is applicable.
health insurance. In some cases the full cost
TESTS & SCANS
Some tests and scans may be performed in
radiology groups, which sometimes results in
the hospital or clinic environment, often at
a cost. Ask if it is possible to be referred to the
minimal or no cost. Other tests and scans
lowest cost option, whilst still receiving quality
will be conducted by specialist pathology or
care.
ARTIFICIAL LIMBS (PROSTHESES)
If your child is going to be provided with a
they may benefit from more advanced
prosthesis, the paperwork will generally be
componentry or a specialised prosthesis for
managed by your child’s prosthetist with
participation in sport, recreation and other
minimal or no direct costs to you. Alternatively,
activities. These may or may not be covered by
if your child was injured in a motor vehicle
government funding. It is important that you
or transport accident, your insurer will cover
talk to your child’s prosthetist and explore if
the cost. As your child grows and develops,
other funding is available or applicable.
THIRD PARTY PAYMENTS
In some cases, third parties may be liable
of a solicitor. These matters can however, take
for the accident and you may seek funding
long periods of time to resolve.
through legal proceedings or seek the advice
CENTRELINK SUPPORT
If you are the holder of a current Centrelink
13 2717 or www.humanservices.gov.au/
Health Care Card your costs may be further
customer/dhs/centrelink
reduced. Centrelink has a number of support
allowances and payments which may assist
you.
CARER ALLOWANCE
The carer allowance is a supplementary
provided with a Health Care Card. If you
payment that may be available if you are a
receive Carer Allowance you may also be
parent or carer of a child aged under 16 years
eligible for additional annual payments such
of age with a physical disability or medical
as the Carer Supplement and Child Disability
condition. This allowance is not income
Assistance payment.
tested and most parents of children with a
limb difference qualify for the Centrelink
Carer Allowance. The Carer Allowance is a
fortnightly payment and your child will be
www.humanservices.gov.au/customer/
services/centrelink/carer-allowance
CARER PAYMENT
The Carer payment is an additional payment
unable to return to work and the child requires
for parents/carers who have a profoundly
full-time high level care.
disabled child aged under 16 years of age.
This payment is asset and income tested and
is generally paid when the primary carer is
services/centrelink/carer-payment
SCHOOL KIDS BONUS
Any mothers receiving income support may be
eligible for the new School-kids Bonus which
is replacing the Education Tax Rebate and will
be paid in two installments in January and July
each year.
services/schoolkids-bonus
PARENTING PAYMENTS
For parents of children aged from birth to 8
years old.
services/centrelink/parenting-payment
MOBILITY ALLOWANCE
As your child reaches 16 years of age and
it. As a carer of a child with limb deficiency
starts receiving payments themselves, they
you will not be eligible to receive the mobility
will be eligible for the fortnightly mobility
allowance payment.
allowance, if they cannot use public transport
due to their disability, and they participate in
study, training or work and need to travel for
services/centrelink/mobility-allowance
PENSIONER EDUCATION SUPPLEMENT
Pensioner Education Supplement – people
who receive Centrelink payments such as the
services/centrelink/pensioner-education-
Carer Payment, Disability Support Pension or
supplement
Parenting Payment (Single) are eligible for a
Pensioner Concession Card.
Medical Terminology
As the parent or carer of a child with a limb
is often described as an amputee – but the
difference you will find yourself suddenly
word ‘amputee’ doesn’t seem to adequately
immersed in what might seem like a whole
describe the individual. It might feel wrong to
new and unfamiliar language – the world of
use a single term to describe all people with
medical terminology. Some words might be
limb loss when each and every individual is
familiar, but others will be completely new and
different.
some you may even consider to be offensive.
For example, a person with a limb difference
Medical professionals, clinicians and service
best to communicate effectively with you.
providers may use words that appear to be
Correct them but do it gently. You never know
cold and clinical, but they use these words
– they might meet someone else with a limb
because it is the most accurate way to
difference the next day who will probably
describe your child’s individual circumstances
thank you for it!
for the purpose of their medical care. The
words they use may be unfamiliar to you, but
remember that they are understood by the
medical team. If you don’t like the words that
are used then let them know - but be polite.
Always ask questions if your doctor or other
medical specialist use words that you do not
understand.
When you are talking about your child’s limb
difference with other people it is important
to focus on your child’s abilities and what
they can do, rather than what they can’t do.
Be sure to convey positive images in your
communication. Like all children, your child
will be led by example and by the time
they can talk, they will feel confident using
It might be very confronting when someone
similar words to their parents and health care
else who is not a medical professional
providers when asked about their physical
uses words to describe your child that you
differences.
consider to be incorrect, inappropriate or
offensive. Please remember that others don’t
always know what you may be comfortable
or familiar with - they are often doing their
A glossary of medical terms is provided at the
end of this booklet which will hopefully help
to clarify a few words for you.
ADAPTING TO
EVERYDAY LIFE
Dealing with unwanted attention
As you settle into daily family life, you will find
that your child has the same needs as other
children their age. You will continue to have
follow-up appointments and may need to do
things a little differently from time to time, but
nevertheless, your family life and routine will
resume. There will be added challenges though,
and one of those may be how to address the
curiosity of others.
Simply getting out and about at the shops or
the playground means you will see and interact with other people. People who may stare,
point, ask questions or offer an opinion or advice. Many parents struggle in these situations.
They would like to be left alone just like anyone else, but when this isn’t the case, what is
the best way to deal with these situations?
When in new social situations, it is not unusual
for adults and children to make comments that
are not very thoughtful. But it is important to
remember that people are not being deliberately hurtful. Rather, that people and especially children, are naturally inquisitive. It’s a good
idea to prepare yourself for how you might answer some of these questions.
There are a number of ways of addressing interest from children who ask questions such as
“what’s wrong with Johnny’s leg?”. You might
try one of the following, depending on the
child’s age:
“You’re right Samuel, Johnny’s leg is a bit different to yours. But mine is also different to yours.
How is mine different? Is it bigger?” This might
work if you would prefer to divert attention.
“That’s right Samuel, Johnny’s limb is different
to yours, but he is still able to do all the same
things as you. Do you know that he loves to play
with trucks?” This technique will assist with focusing on similarities rather than differences.
“That’s right Samuel, Johnny’s limb is different
to yours. He doesn’t have as many toes as you
because he had an accident/was sick/was born
this way. He can still do many of the things that
you can do though, can’t you Johnny?”. This
technique may be best when the children are
older and you would like the enquiring child to
learn about the limb difference.
You may find that the curiosity of others in the
community can start when your child is very
young. Parents with babies and young children
often feel quite ok with answering questions
and explaining their child’s limb difference to
others in the presence of the child. While this
enables the parent time to find the right wording (wording that they are comfortable with),
remember that your child is with you. Young
children understand a lot more than what they
can say so always be mindful of what their little
minds will soak up.
Try to use positive language, be polite and acknowledge your child rather than talking about
them. Be guided by your child in how or when
to discuss their body. Your child may like to
help explain things or show their limb to other people. Preschool and school age children
should be encouraged, if possible, to answer
questions in their own words. This may help
them to become confident and independent
when talking about their limb difference.
It might be helpful to equip your child with a
script or some prepared answers to common
questions about their limb difference, which
they have practiced with a counselor or parent.
It can help if they have something simple to
say and are confident about saying it. There are
numerous children’s story books which feature
children with limb loss. These books can help
prepare children with how to respond when
people ask them about their limb differences
so they may be a useful resource for you.
New environments
The prospect of introducing your child to new
environments such as day care, pre-school, kindergarten or school can be a little daunting. But
it is also an exciting time for your child and your
family as a whole. Many parents of children
with a limb difference who have gone through
this experience suggest the following tips:
PREPARE WELL
When enrolling your child in a centre (day care,
pre-school, kindergarten or school), ensure
that the centre is aware of your child’s limb
difference and that this is clearly documented
where required. This may include care instructions such as prosthetic maintenance after play
and special cleaning instructions. Arrange to
meeting with teachers and/or care providers
without your child to enable an opportunity to
openly discuss your child’s needs, limitations
and strengths, as well as allowing your child’s
care providers to ask questions.
BE READY FOR INTRODUCTIONS
On the first day, most centres and schools will
introduce each of the children in turn, to the
group. Some parents have found it useful to
encourage teachers to openly discuss the individuality of each child. For example, highlighting the things we have in common (for example, we all have eyes) but that we are also all
different (we have different coloured eyes). The
conversation will be supervised by the teacher and gives children the opportunity to talk
about themselves, and allows the other children to ask questions. No individual is singled
and more often than not this quenches curiosity. Children often respond best to upfront
honesty so once they feel that they have the
information they need, they get about the more
serious business of playtime and having fun.
If your child is returning to school after an amputation, it is important to talk to them about
how they would like to be ‘re-introduced’ to the
class. They may choose to resist discussing their
limb loss to their peers and prefer to manage
curiosity on an individual basis, alternatively
they may wish to talk with the class upfront and
answer questions. Your child needs support
and encouragement during this time, so after
you’ve decided what they’d like to do, talk to
their teacher so everyone knows the plan.
SUPPORT FOR SIBLINGS
Growing up with a brother or sister who has a
limb difference can bring a mix of experiences and emotions for siblings. Different siblings
will have a different way of understanding and
coping with their brother or sister’s physical
differences. This will depend on their age, your
family structure and circumstances, cultural
values and other social factors. However, all
siblings would benefit from extra understanding and support in their situation.
There are many positive experiences that come
from being a sibling of a child with a limb difference. These children often have greater
compassion, understanding of physical disability and tolerance. But at the same time this can
mean that a sibling might feel responsible for
looking after and protecting their sibling, particularly at school or peer activities; they might
feel frustrated, sad or guilty about their sibling
not being able to play in the same way they
can; and they might feel like they need to keep
worries about challenges to themself and not
share concerns with their parent or guardian.
CHALLENGES FOR SIBLINGS
Being a sibling of someone who may experience limitations in their physical ability or
who might require ongoing medical attention
might also leave a sibling feeling like they’re
less important, and that they’ve lost their identity as an individual. They might feel like they
are seen by others as the ‘sibling’ rather than
the individual that he or she is. This can lead
to confusion about how they feel about their
brother or sister. They might feel love as well as
anger, jealousy or resentment. They might also
feel embarrassed or sad by other people’s re-
actions to their sibling’s physical appearance.
Depending on their individual personality, your
child (who is the sibling) might be happy to talk
freely about how they feel and any frustrations.
Other children won’t though – and instead they
might start behaving differently, for example,
withdrawing from social situations or activities
with peers; excessive ‘acting up’ and attention
seeking behavior; or being overly concerned
with being the ‘good child’ or ‘people pleaser’
in order to achieve approval and recognition.
WHAT YOU CAN DO?
The best thing to do is to encourage your child
to talk freely about their feelings, listen, ask
and talk openly. Let your child know that it’s ok
to feel angry, sad, and/or frustrated. Calmly and
honestly answer any questions they have about
their brother or sister. Be sure to celebrate your
child’s personal achievements and encourage
them to network with siblings in similar situation, as this can help them to feel they are not
alone. If your child is happy to talk to someone
but not to you - professional counselling can
be sought through your GP, and peer support
networks are available through Limbs 4 Life.
BULLYING SUPPORT
Bullying is when an individual or a group attempts to emotionally or physically harm, intimidate or humiliate another person on a 24 INFORMATION FOR PARENTS AND CARERS
regular basis. Most bullying occurs in the school
environment, with children most likely to be
bullied in primary school. Children with
physical differences are significantly more likely than their peers to be the victims of bullying
behaviour, specifically in the form of name-calling or being excluded from social activities.
Bullying has serious consequences with victims
more likely to suffer from anxiety, low self-esteem and depression, and parents of bullying
victims may feel angry, helpless and frustrated.
TYPES OF BULLYING
Bullying can take several different forms and they can sometimes be hard to pick.
Direct bullying includes:
• Physical aggression (hitting, kicking, damaging belongings)
• Verbal aggression (name calling, insults, threats or teasing)
• Non-verbal aggression (threatening gestures)
Indirect bullying is less obvious and can be:
• Physical (getting someone to assault someone else)
• Verbal (spreading lies and rumours)
• Non-verbal (excluding someone from a group or activity, cyber-bullying)
WHAT YOU CAN DO?
It’s important to know the signs of bullying so
that if your child is being bullied, you can step
in. Because bullying can take several different
forms, the signs of bullying can also be very
different. For example, having physical signs
of abuse to themselves (bruising, scratches)
or damages to their belongings can be easily
spotted. Changes in behaviour might be harder to notice – for example, being unhappy after
coming home from school or using the internet, being afraid to go to school or take part in
activities with peers, losing interest in school
work, friends and activities. Some children
start to avoid using the phone or internet and
have fewer friends, experience changes to their
sleeping and eating patterns and seem anxious
and have low self-esteem. Victims of bullying
may also display unusually controlling or dominant behaviour towards others and may
appear non-empathic towards other children
being bullied.
First and foremost, know the signs of bullying so
you can keep an eye on your child for anything
out of the ordinary. Secondly, you can instil
pride and confidence in your child’s abilities so
that if they are being bullied then they will be
more resilient. Make sure their home environment is safe and positive and help them to find
group activities that they enjoy doing. If your
child is being bullied then it’s really important
to be a good listener. Listen to their experience
and don’t judge them. Make sure they know
it’s not their fault. You will need to raise any
concerns you have with the others involved –
through teachers and the parents of others if
necessary. Professional counselling can also be
really helpful, so can being involved in a peer
support group like the ones offered through
Limbs 4 Life.
GLOSSARY
ABDUCTION movement of a limb away from the body
ACHEIRIA congenital absence of one or both hands
ADDUCTION movement of a limb towards the body
ADYCTYLY congenital absence of one or more fingers or toes
ALIGNMENT position of prosthetic socket in relation to foot and knee
AMELIA absence of a limb
AMNIOTIC BAND a fibrous string-like structure in the womb that can occasionally restrict blood
flow and affect the baby’s development
ANKLE DISARTICULATION amputation through the ankle joint
(historically called a Symes amputation)
APHALANGIA absent fingers or toes
APLASIA absence of specific bones and parts
ASSISTIVE DEVICE tool or technology that promotes independence by enabling people to perform
tasks that were previously impossible or difficult
ATROPHY wasting of tissues and muscles
BILATERAL affecting both sides (e.g. both legs)
BRACHYDACTYLY short finger or thumb
CAMPTODACTYLY when fingers are bent or cannot fully straighten
CARPAL BONES the cluster of bones in the hand between the forearm (radius and ulna) and the
metacarpals (long bones in the hand)
CHECK SOCKET a temporary socket used for testing the fit of the prosthesis
CONGENITAL LIMB DEFICIENCY absence of a limb or part of a limb at the time of birth
CONTRA-LATERAL relating to the opposite side
CONTRACTURE a shortening of muscle and or tendons, often leading to a limb or body part bending in an unusual direction
COSMETIC COVER the outside layer of a prosthesis to make it look more real
DORSIFLEXION the position of the foot when the toes are pulling up (for example if you stand on
your heels your ankle is dorsiflexed)
DONNING putting the prosthesis on (for example donning your prosthesis)
DYSPLASIA abnormal development of bones and soft tissues
ECTRODACTYLY partial or total absence of central fingers
EXTENSION the movement of a body segment into a more straight position (for example straight-
ening the knee is the same as extending the knee)
FEMUR thigh bone
FIBULA the smaller leg bone which runs down the outside leg below the knee
FLEXION the movement of a body segment into a more bent position (for example, bending the
knee is the same as flexing the knee)
GAIT the study of how a person walks – your walk “style” is your gait
HEMIMELIA absence of half a limb
HUMERUS the upper arm bone
HYPOPLASIA under-development of bones and tissues
LATERAL outside aspect of leg and arm when body is in a normal position
LINER the sleeve that goes between the prosthetic socket and the limb
MEDIAL inside of the leg and arm when the body is in a normal (quiet standing) position
METACARPALS a group of five long bones in the hand located between the carpal bones and the
phalanges (finger bones)
METATARSALS a group of five long bones in the foot located between the tarsal bones of the hindand mid-foot and the phalanges (toe bones)
MEROMELIA partial absence of a limb
MYOELECTRIC prosthesis uses the electrical signals from voluntarily contracted muscles in a person’s residual limb to control the movements of the prosthesis
NEUROMA a collection of fibrous tissue often found around a cut nerve ending in a residual limb
that can cause pain on palpation
OEDEMA swelling of the stump or extremity
PATELLA kneecap
PATELLA TENDON tendon attaching the kneecap to the top of the tibia
PYLON the pole connecting sections of the prosthesis
PLANTAR-FLEXION the downward movement of the foot (for example if you walk on your toes your
ankle is plantar-flexed)
PHALANGES the long bones in the fingers and toes
PHANTOM PAIN the feeling of pain in an absent limb
PHANTOM SENSATION awareness of the amputated limb
PISTONING when the residual limb moves excessively in and out of the socket when walking
PRESSURE AREA tender or broken skin caused by prolonged or excessive pressure
PROSTHESIS artificial limb
PROXIMAL FEMORAL FOCAL DEFICIENCY (PFFD) rare, non-hereditary birth defect affecting the
hip joint and femur, resulting in a deformed hip joint and a shorter leg
RADIUS long forearm bone on the thumb side
RESIDUAL LIMB the remaining part of the limb - sometimes referred to as a “stump”
SHRINKER a compression sock used to control swelling in the residual limb after amputation
SOCKET the custom made part of the prosthesis, which encases the residual limb
STUMP VOLUME size of the residual limb
STUMP SOCK a sock worn over residual limb to provide a cushion between the skin and socket
SUSPENSION refers to how the prosthesis is held on
SYMES AMPUTATION amputation through the ankle joint
SYMBRACHYDACTYLY under developed hand with central finger deficiencies
SYNDACTYLY webbed fingers or thumb
TARSAL BONES the group of small bones in the foot (including the heel bone) that join the lower
leg bone to the metatarsals
TERMINAL DEVICE the attachment on the end of an upper limb prosthesis (for example, hooks,
hands, specialized tools)
TRANSFEMORAL AMPUTATION amputation above the knee through the femur
TRANSHUMERAL AMPUTATION amputation above the elbow through the humerus
TRANSMETACARPAL AMPUTATION amputation through the metacarpal bones
TRANSMETATARSAL AMPUTATION amputation through the metatarsal bones
TRANSTIBIAL AMPUTATION amputation below knee through the tibia and fibula bones
TRANSRADIAL AMPUTATION amputation below elbow through the bones of the radius and ulna
(the bones between the elbow and wrist – the forearm)
TIBIA shin bone – the large bone at the lower front of the leg
ULNA long forearm bone on the little finger side
UNILATERAL affecting one side
WRIST DISARTICULATION amputation through the wrist joint
DIRECTORY
ADVOCACY SUPPORT
Association for Children with a Disability
9818 2300 - www.acd.org.au
Youth Disability Advocacy Service
1300 727 176 - www.ydas.org.au
AIDS & EQUIPMENT
Noah’s Ark Specialist Equipment Program
8823 8630 - http://set.noahsarkinc.org.au
Yooralla
1300 885 886 - www.yooralla.com.au
BULLYING SUPPORT
Bullying. No way.
www.bullyingnoway.com.au
Cybersmart
1800 880 176 - www.cybersmart.gov.au
The Alannah & Madeline Foundation
9697 0666 - www.amf.org.au
CHILDCARE & KINDERGARTEN
Community Child Care Association
9486 3455 - www.education.vic.gov.au
Family Day Care Australia
1800 621 218 - www.familydaycare.com.au
Kindergarten Parents Victoria
03 9489 3500 - www.kpv.org.au
My Child
1800 670 305 - www.mychild.gov.au
COUNSELLING SERVICES
Australian Centre for Grief and Bereavement
1300 664 786 - www.grief.org.au
Beyond Blue
1300 22 4636 - www.beyondblue.org.au
Cancer Council
13 11 20 - www.cancer.org.au
Family Bereavement Support Program (Royal Children’s Hospital)
1800 242 636 - www.rch.org.au/socialwork
Genetic Support Network Victoria (GSNV)
8341 6315 - www.gsnv.org.au
Kids Helpline
1800 55 1800 - www.kidshelp.com.au
Life Line
13 11 44 - www.lifeline.org.au
Melbourne Children’s Psychology Clinic
9517 6272 - www.melbournecpc.com.au
Men’s Line Crisis Support
1300 789 978 - www.mensline.org.au
PANDA
1300 726 306 - www.panda.org.au
Parent line
13 22 89 - www.parentline.com.au
Wire – Women’s Information
1300 134 130 - www.wire.org.au
DISABILITY SPECIFIC GROUPS
Children with Disability Australia
(03) 9482 1130 - www.cda.org.au
Early Childhood Intervention Services (ECIS)
03 9819 5266 - www.eciavic.org.au
Independence Australia
1300 704 456 - www.independenceaustralia.com
Independent Living Centres Australia
1300 885 886 - www.ilcaustralia.org
MOIRA
03 8552 2222 - www.moira.org.au
FAMILY SUPPORT
Family Planning Victoria
9257 0100 - www.fpv.org.au
Family Relationships Advice Line
1800 050 321 - www.familyrelationships.gov.au
FINANCIAL & GOVERNMENT SERVICESVICES
Centrelink
13 27 17 - www.centrelink.gov.au
Community Health Centres
www.health.vic.gov.au/communityhealth
Department of Human Services - Disability Service Information (VIC)
1800 783 783
Medicare
13 20 11 - www.humanservices.gov.au/customer/services/medicare/medicare
Transport Accident Commission (TAC)
1300 654 329 - www.tac.vic.gov.au
HEALTH & MEDICALVICES
Kids Connect – Find a doctor
http://www.rch.org.au/kidsconnect/find_a_doctor/
Limb Clinic - The Royal Children’s Hospital - Parkville
9345 5522 - www.rch.org.au/ortho/department_sections/Limb_deficiency
Maternal and Child Health Services
132 229 (24-hour telephone support)
Victorian Paediatric Palliative Care Program (RCH)
For children with life threatening illness
9345 5374 - www.rch.org.au/rch_palliative
PARENTING SUPPORT
National Council of Single Mothers and their Children (NCSMC)
9654 0622 - www.ncsmc.org.au
Parent Line
13 22 89 - www.parentline.vic.gov.au
Parenting Research Centre
www.parentingrc.org.au
Raising Children Network
www.raisingchildren.net.au
SIBLINGS SUPPORT
Raising Children Network
www.raisingchildren.net.au
Sib Link
www.siblink.org.au
Siblings Australia
www.siblingsaustralia.org.au
SPORT & RECREATION
Disability sport and recreation
9473 0133 - www.dsr.org.au
NICAN – Inclusive Recreation and Resources
1800 806 769 - www.nican.com.au
Neighbourhood House
9654 1104 - www.anhlc.asn.au
*Details correct at time of printing.
NOTES
NOTES
Contact information:
Phone: 1300 78 2231 (toll free)
Email: [email protected]
Web: www.limbs4life.org.au
PO Box 282 Doncaster Heights VIC 3109
proudly supported by

for parents and carers of children with a limb difference

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