 |
|
 |
 |
      |
||
|
/ Back to home / Parent support / Coping when your child has a diagnosis of a chronic illness or disability
Coping when your child has a diagnosis of a chronic illness or disabilityDisclaimer: This fact sheet is for educational use only. Please consult your doctor or other health professional to make sure this information is right for your child. Key points to remember
 Back to TopWhat is coping?You will go through a range of emotional experiences, similar to that of the grief cycle - denial, anger, depression, fear. All of these are normal and natural when faced with a stressful situation. There will be days where you feel that the world is against you and you want to bury your head under the duvet. It is important to remember you will come through it, it may just take time. There are a number of different strategies which people use to help themselves and their families through this difficult time. Working out what strategy works for you is part of the coping process, so you may have to try some until you find the one that works best for you. The following are some strategies you may find helpful:
Back to TopSocial supportBeing able to tell your family and friends honestly about what is going on will make things easier, as you will not have to put on a front about how you are managing. Communication is a key part of developing an effective support network. Local support groups are also really useful. This is an opportunity to meet and talk with someone who has been through a similar experience to yours. This tells you that you are not alone. Parent to Parent is a nationwide network of families who have experienced a diagnosis for their child. See below for their contact details. Back to TopInternet forums, blogs and online support groupsInternet forums like blogs or online support groups are also a good way of finding out what other people are experiencing and dealing with. Through this you can connect with others without face to face contact which many parents appreciate. Back to TopIndividual counseling or therapyIndividual counseling or therapy can help you deal with the emotional experiences you are going through. Some hospital clinics will have access to psychological or counseling services so it is important that you ask your doctor about the support that’s available. Back to TopEducate and advocateAs a parent/caregiver you will always be your child’s number one advocate. It is important to become fully educated about what your child is going through. Develop relationships with all professionals involved in your child’s life. This includes people outside your medical team, such as school staff. Ask questions, find out what is available, and become fully informed about what supports your child is able to access.The Internet is a great place to find out information, but it is
important to remember that there is always more than one perspective on
an issue, so make sure you are looking at reliable sources such as major
hospitals or research centres. Back to TopFinancial supportChronic illnesses and disability can put a financial strain on
families. Ask about financial assistance such as the Child Disability
Allowance or Disability Allowance.
See the following fact sheet on this website for more details:
Back to TopLooking after yourselfYou will have heard about the importance of putting on your oxygen mask before helping others when on a plane. The same rules apply when having to cope with a stressful time. You need to be in the best position possible so you can look after your child with a chronic illness or disability and other family members. Although this may sound selfish, it is about strengthening yourself so you can be strong for your child.Some strategies that work for parents include relaxing - have a
bath, do deep breathing, take some time out, even if it just to read a
magazine. Have a night off by calling in a babysitter or family member -
this can help you to rejuvenate. Exercise is also a good way to manage
stress, although it can be hard to find time to do exercise. It can be
as simple as taking a walk around the block which will help your body to
relax.
In some situations families may be able to access respite services
through disability agencies. Your medical team will be able to advise
you about this.
Back to TopWhere to go for more information and supportNZORD (New Zealand Organisation for Rare Disorders) website www.nzord.org.nz
If your child has recently
been diagnosed with a disability or chronic condition, you may find the
following information helpful:
Carers New Zealand www.carers.net.nz A national charitable trust which provides information, advocacy and support to family, whanau and aiga caregivers. Address: Freepost 3739, Mangonui, Far North 0557 Phone: 64 9 406 0412 Fax: 64 9 406 1036 Email: info@carers.net.nz Parent to Parent www.parent2parent.org.nz Through a network of regional groups and trained volunteer support parents, Parent to Parent provides information and emotional support to families who have a child with a disability, special need or health impairment. skylight www.skylight.org.nz Provides support, counselling and information to children, young people and their families coping with change, loss and grief.
Address: PO Box 7309, Wellington South
Phone: 64 4 939 6767 or Call free on 0800 299 100 Fax: 64 4 939 4759 Back to TopAcknowledgementshttp://www.mayoclinic.com [Accessed 15/03/2011]
http://www.diabetes.org [Accessed 15/03/2011]
http://www.parent2parent.org.nz/ [Accessed 15/03/2011]
Back to TopYour notesEndorsement
This fact sheet was endorsed by PSNZ - 28/06/2011
CopyrightFact sheets are subject to copyright. In the interests of information sharing they may be copied but acknowledgement must be given to PSNZ and Starship Foundation. © The Paediatric Society of New Zealand and Starship Foundation 2005 - 2012
|
Print this page
