BEING A CAREGIVER
Raising a child with a rare disability can be a challenging journey for family caregivers. While the internet offers some support, every parent, child and family-type is unique, so not all information is helpful. Sometimes, the caregiver duties might fall on only one parent, or a grandparent, or at times, the siblings. Use online resources to find local support groups and connect with other families who may be facing similar challenges.
Connecting with other family caregivers in the same situation can bring healing and understanding, as well as some valuable practical solutions. This website provides links to articles, blogs, YouTube videos, and Facebook groups offering advice and support 24/7.
Being a good caregiver to a loved one who has extra needs can be tough, so you need to take good care of yourself, too. The Angelman Network is a member of the Carers Alliance and the Complex Carer Group. Check out their websites and sign up to their newsletters, for some valuable support & information.
Understanding the Grieving Process
“I will love the light for it shows me the way, yet I will endure the darkness for it shows me the stars.”
― Og Mandino
Most parents deal with a sense of loss when raising a child with special needs and everyone copes differently. 'Perpetual grief' is different to the usual grief cycle. Here is an excellent article to help you understand what you are going through and to offer some tips on how to cope better:
If you feel you are not coping at all, please seek help. Speak to your GP, social worker, or a close friend. You may need to source regular counselling, make lifestyle changes or take medication to help you through a bad patch. Please know you are valued and important to your family.
If you find yourself in a crisis and are struggling to cope, please contact Lifeline - or phone 111, the emergency number for Police, Fire and Ambulance.
Why Self-Care is vital
To be a good caregiver means that self-care needs to become a serious priority. You must make time to 'fill up your own tank' - to do things that make you feel good about yourself and your life. You need time out for yourself; to pursue your own interests and hobbies and have time with your partner, with your other children and with close friends.
When you are placed in a position of caring for others almost constantly, you need and deserve to be cared for, too. That entails asking friends or family to bring a meal every now and then, or by treating yourself to a pedicure, a date night, a massage, or whatever else you enjoy doing.
You are no regular parent. You are also a therapist, dietician, nurse, and doctor! Every day you manage situations that a regular parent would think are impossible.
Make time to play, laugh, be silly and just enjoy your child and your family. Make a conscious effort to make good memories, regardless of the challenges you face. Put your feet up, and enjoy this free, informative magazine from Carers NZ: FamilyCARE, New Zealand
Basic Coping strategies
Try to stay positive. You are stronger than you think you are - but when in crisis, don’t hesitate to reach out for help. You can ask your social worker or NASC for more in-home support during difficult times.
Make therapy, play. Seek out activities for your child that are fun for everyone and would also offer therapeutic benefits, eg swimming lessons, music therapy, horse riding, etc.
Don’t lose yourself. Being the parent to a child with special needs is only part of your identity; not all of it. Don't run the risk of losing yourself. Find things in your life you enjoy doing - an art or dance class, walks on the beach, writing poetry, shopping for yourself, etc. and make the time to fit this in. Take time for your marriage, friends and family.
Take breaks. This journey is like a marathon so take breaks whenever possible. Give yourself some time off, however brief - to just pause, reassess, refresh and realign.
Don’t compare. Every child is different - typical, or with extra challenges - and they will grow and develop at their own pace. Your child is unique and will have their own individual strengths and challenges. When typical parents brag about their child’s accomplishments, it is not meant as a knock to your amazing child. Try to remember that others often lack the context that we are constantly embedded in. Explain, teach, be patient; with kindness, raise awareness among those who just don’t get it. Or choose a different circle of friends.
Celebrate the little things. Share your child's every new milestones – no matter how small - with those who love you and your child.
Know you are greatly valued by the global Angelman community. We are all in this together as we create a better future for our loved ones.
ONLINE SUPPORT GROUPS
The Angelman Network has an official Facebook Page, plus several private Groups on Facebook:
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'Like and follow' our official FB Page: The Angelman Network
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You are welcome to join the following groups:
The Angelman Network - our international FB group (private group)
NZ-Angel mums - If you are in NZ and the primary carer/guardian (private group)
Angelman Syndrome NZ - A private group for NZ families, whanau & supporters
Angelman Connections - The largest international private FB group for Angelman syndrome
Manual for AS Beginners - For newly diagnosed families, world-wide
You will find many other Facebook groups that discuss specific areas of interest for Angelman syndrome, eg. seizures, orthotic/orthopaedic issues, puberty, tremors, GI problems, etc.
For more links, see Social Media
For families in Aotearoa New Zealand, The Angelman Network is here to help you connect with others. We can put you in touch with other families in your area, send you NZ-specific information, point you in the right direction for funded assistance, provide advocacy and letters of support, or just talk things through with you. Our Parent Support Contacts are just a phone call away. These mums will be happy to assist you with any questions, advice or support you may need:
North Island: Sivao Winther (Auckland) - 09 813-5194
South Island: Jeanne Coker (Christchurch) - 021 406064
The Needs Assessment
When you have your Needs Assessment meeting with the NASC, you need to be brutally honest about the actual needs and how this affects the family. Though family members can be staunch optimists and might play down the difficulties when sharing information with a stranger, it is not helpful to do this at your needs assessment.
The real hardships and challenges you face need to be described and explained. Being open and honest may also trigger a grief reaction. If possible, have a support person attend who knows you well, and understands the situations you family faces on a daily basis. Here is some information on preparing for a needs assessment with your NASC.
Embrace Respite
It is advisable to look at ‘out-of-home’ respite for your loved on with AS, once they are a bit older and you feel comfortable about them staying elsewhere. Having this well set up is vital for your own peace of mind while taking a well-earned break. It is also an opportunity for them to build some confidence and develop a sense of independence from you.
The location of respite should be safe for your loved one with AS, and also a place they will feel welcomed and will enjoy spending time. If you have Carer Support or Individualised Funding (IF) there are many creative ways to use the funds to ensure you get a break from your duties as a carer - and your love one will get a fun break from you too.
You can also hire staff to look after your loved one with AS in your own home, while you take a retreat break elsewhere.
Finding Support Staff
How you source carers, depends on the funding package you are receiving. If you use a service provider such as Spectrum Care or Idea Services, they will source suitable trained carers for you. However there will be very little flexibility around their work hours, as this will be set to a regular timetable.
If you are interested in a more flexible system and you are able and willing to manage your child’s funding - and wish to have more control over how it is used - you can ask your NASC about Individualised funding. Being in charge of your child’s funding and employing your own support staff takes more time but gives you much more control and flexibility.
The Angelman Network recommends these NZ support organisations:
A great support & information network run for carers, by carers who care for their own children with complex needs. They provide up-to-date info and support to navigate the many challenges - also responsible for communicating the needs of this sector to Ministry of Health, funders and other providers. Their website is a mine of information directly relevant to Angelman-families in NZ.
Provides information, advice, learning and support for families of people with health and disability needs. Download their resource - A Guide for Carers
Sign up on their website for a very informative e-bulletin and notifications about free seminars and workshops. Check out their resources.
A nation-wide organisation which provides advice, information and support to parents of children with any disorder. They can also put you in touch with other families living with the same condition.
Get Organized
Create a Network of Specialists. After diagnosis, your loved one will likely be referred to various therapists, medical specialists, and education professionals. Build a strong network of professionals who understand your child. Use those resources that benefit your child and family. But if something feels overwhelming or too stressful, it's okay to explain this, and reduce visits/programs.
Professionals are valuable, but if you feel unheard or that your child’s needs aren’t being met, you are entitled to question, or to seek a second opinion. You are the expert on your child - trust your instincts and voice your concerns.
Practical ways to manage your role:
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Keep your child’s NHI number near the phone/computer. It will often be needed when discussing his/her matters
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The Health and Disability Commissioner is working with hospitals around the country to introduce My Health Passport. You fill out this free booklet and take it to hospital or when you use other health & disability services. It contains information you want professionals to know about - Angelman syndrome and your child’s specific impairments - so they can understand how to support you/your child, best.
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Set up a good filing system!
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Keep a file/notebook with names and contact details of all the professionals/therapists/disability-sector personnel you deal with.
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Learn to move/lift/handle people to minimise yor own injuries: Moving and Handling People
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Get to know the NZ health system. It is undergoing big changes right now. We will post updates once we know more.