Being a Caregiver
Strategies for the primary Caregiver
Raising a child with a rare disability is an experience that generally isn’t planned and can become a challenging journey for primary caregivers.
While the internet can provide some answers and supportive ideas, no child is the same, and family dynamics differ too. The internet is best used to help you locate local support groups where you can connect and find other families who might be facing similar challenges.
Our website lists helpful links to articles, websites, YouTube posts, blogs, resources and Facebook groups that can provide support networks 24/7. Being in contact with other caregivers can be extremely healing and helpful for families; a place to feel understood and supported. You may find answers and practical solutions as well as a sense of community, understanding, and friendship.
Being a good parent is hard, and being a good parent to a child with extra needs, can be extra hard. In order to be the best caregiver you can be, take the time to check out some of the resources on this page.
The Angelman Network is affiliated to the Carers Alliance. Take time to check out the information and resources on this website: Carers NZ
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 with it differently. It is noted that 'perpetual grief' is different to the usual grief cycle. Here are some excellent articles 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, do not hesitate to 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 serious crisis and are struggling to cope, please contact Lifeline or the Police/emergency services (phone 111).
To be a good caregiver means that self-care needs to become a serious priority. You need to 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 by every now and then, or treating yourself to a pedicure, a date night, a massage, or whatever else you enjoy doing. Whatever makes you feel special and taken care of, take the time to enjoy it.
Every day you manage situations that a regular parent would think are impossible. You are a therapist, nurse, doctor, friend and confidante. You are no regular parent. Make time to play, laugh, be silly and just enjoy your child and your family. Make good memories regardless of the challenges you face.
Embrace respite for you/your child and don’t feel pressured to get as much done as you can during your breaks. Book yourself in for a retreat. Make a concerted effort to rest, relax and have some down time to recharge your own batteries. Your body and your soul needs it!
Basic Coping strategies
Try to stay positive. You are stronger than you think you are. There is always someone out there facing a bigger challenge than you are. When in crisis, don’t hesitate to reach out for help - you can also 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/hippotherapy, etc.
Don’t lose yourself. Being the parent to a child with special needs is only part of your identity; it is not all of your identity. When you focus all of your life, your contacts, and all of yourself around your child and their needs, you 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. Make time for your marriage, friends and family.
Take breaks. This journey is like a marathon so take breaks when necessary. Be kind to yourself. 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.
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.
It is advisable to look at some sort of ‘out-of-home’ respite for your child once they are a bit older and you feel comfortable about them staying somewhere else. Having this option well set up is important so that you have peace of mind while taking a well-earned break. It is also a good time for your child to build some confidence and develop a sense of independence from you.
The location of the respite should be safe and suitable for your child but also a place they will feel welcomed and will really enjoy spending time. Respite breaks are invaluable for caregivers to fully relax and unwind. If you have 'IF with Respite' funding, there are many creative ways to use the funds to ensure you get a break from your duties as a carer - and your child will get a fun break from you too.
The Needs Assessment
When you have your child's Needs Assessment meeting with the NASC, you must be brutally honest about your child’s needs and how they affect the family. Though parents can be staunch optimists and might also play down the difficulties you face when having to share 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 your grief reaction. It is a good idea to have a support person with you who cares about you and understands the situations you face on a daily basis.
Finding Carers/Support Workers
How you source carers, depends on the funding package you are receiving.
Service Providers: If you use a service provider such as Spectrum Care or Idea Services, the provider will source suitable trained carers for you. However there will be very little flexibility around carer's work hours as their availability will be based on a set timetable.
Individualised funding: 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 carers gives you more flexibility.
MyCare is the national matching service which you can join for free. It will match up your profile/job description with potential workers close to your location. It is a free service for NZ Angelman families.
The Angelman Network recommends these NZ support organisations
It is advisable for all New Zealanders caring for a person who has AS, to join the Complex Care Group. They are a support and information network run for carers by carers who look after their own children with complex needs. While largely focused on providing up-to-date information and support to carers to navigate the many challenges they face, they are also responsible for communicating to Ministry of Health, funders and other providers, the needs of this group. Their website is a mine of information directly relevant to 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.
Disability Connect is the new trading name of Parent and Family Resource Centre Inc. Sign up on their website for an e-bulletin and notifications about free seminars and workshops. Check out their resources.
This is a New Zealand-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 diagnoses of your loved one, they will usually be referred to a range of therapists such as speech-language, physio, and occupational therapists, as well as medical specialists (such as a paediatrician, neurologist, and nutritionist) and education professionals. Gather a good network of
professionals around you who will get to know your child well. Take advantage of everything that you think will help your child, your family, and yourself. If any input is too overwhelming or invasive
and causes your child/you/your family more stress than benefits, you have the choice to cut back visits or programmes, to something more manageable.
Professionals are fantastic resources but if you feel like you’re not being heard or that your child’s needs are not being met, it’s OK to question or even get a second opinion. Ultimately, YOU are the expert on your child so try not to feel intimidated. Always trust your instincts and never hold back from expressing your ideas and thoughts regarding your child and their needs
Practical ways to manage your role
Keep your child’s NHI number near the phone/computer. It will often be needed when discussing his/her matters with others in the medical/disability sector.
The Health and Disability Commissioner is working with hospitals around the country to introduce the Health Passport. It can be hard to let health workers know what your child with AS needs, especially if they have very complex needs. A Health Passport is a booklet you can fill out and take along to hospital or when you use other health and disability services, such as your GP or a new carer. It contains the information you want professionals/carers to know about Angelman syndrome and your child’s specific impairments, so that they can understand how best to support you and your child.
Set up a good filing system
Keep a notebook with names and contact details of all the professionals/therapists/disability-sector personnel you deal with.
Learn to move/lift/handle people: Moving and Handling People Guidelines
Get to know the system: The NZ government is divided into specific Ministries. Those relevant to caring for someone with a disability are:
Ministry of Social Development (MSD) - Services for Disabled
Parent Help: Free Parenting Helpline 0800 568 856
ONLINE SUPPORT GROUPS
The Angelman Network has an official Facebook Page as well as several closed Groups on Facebook:
'Like and follow' our official FB Page: The Angelman Network
You are welcome to join the following groups:
The Angelman Network - our international FB group (closed group)
NZ-Angel mums - If you are in NZ and the primary carer/guardian (closed group)
You will also find numerous 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.
If you live in 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 specific AS - related 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.
Sivao Winther (Auckland)
Kathryn Cherie (Manawatu)
06 326-7332 or 027-224 3924
Jeanne Coker (Christchurch)
021 406064 or 03-358 5083