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Being a Caregiver 

Strategies for the primary Caregiver

Raising a child with a rare disability is an experience that generally isn’t planned. It can be a challenging journey for primary caregivers.

While the web can provide some answers and supportive ideas, most websites tend to list worst-case scenarios. In reality, no child is the same and family dynamics differ too. The web is best used to help you locate some local support groups and perhaps help you 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. You may find answers and practical solutions as well as a sense of community, understanding, and friendship.

Being in contact with other caregivers can be extremely healing and helpful for families; where you can feel understood and supported. Being a good parent is hard, and being a good parent to a child with extra needs, is 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.

Read:

The Caregiving Journey: From Isolation to Building Bridges

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).

Self-Care

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. 

Embrace Respite

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. Read more...

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.

A free national matching service to help you find the right support workers in your community - with helpful blogs. 

 

Online Support Groups

 

Get Organized: Create a Network of Specialists 

for your child, your family and yourself

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 and 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:

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 Angelman Network Parent Support Contacts are just a phone call away:

 

North Island: 

  • Sivao Winther (Auckland)  

      09 813-5194

  • Kathryn Cherie (Manawatu)  

     06 326-7332 or 027-224 3924

 

South Island: 

  • Jeanne Coker (Christchurch)  

      021 406064  or  03-358 5083

 

These mums will be happy to assist you with any questions, advice or support you may need. 

The Angelman Network has an official Facebook Page as well as several closed Groups on Facebook:
 

  • 'Like and follow' our official FB PageThe Angelman Network 

  • You are welcome to join the following groups:

       our international FB group (closed group): The Angelman Network 

       If you are a Kiwi/in NZ and the primary carer (closed group): NZ-Angel mums 

       A closed group for NZ families: Angelman Syndrome NZ

       The largest international FB group for Angelman syndrome is: Angelman Connections

       For newly diagnosed families, world-wide, join: Manual for AS Beginners

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. See Social Media.