THE FAMILY/whānau
New Zealand is a small country with many different family types (and cultures), including the traditional 'nuclear' Pākehā family, Māori whānau, extended families, sole-parent families, same-sex parents, and blended families. All of these exist within the NZ Angelman community.
Whānau is a Māori term for extended family, which includes immediate family, wider kin, friends, and community, emphasizing interconnectedness, mutual support, and shared responsibility.
'Circles of support' are similar to whānau, but are intentionally created networks for practical assistance - private arrangements between families and their friends. All family-types can create this wider support network for their child who has Angelman syndrome.
Parent Support
If you are a parent/family member with a newly diagnosed loved one, you can contact Parent to Parent. They will put you in touch with a fellow Angelman-parent who can share advice and support, as their own first-hand experience of AS.
From time-to-time The Angelman Network coordinates family gatherings around the motu. These are also great opportunities to connect with others on the same journey.
'Not alone' is a great article for parents to read when they first learn that their child has a disability. More strategies for parent Caregivers, here.
Support Groups
General support groups can be beneficial to the husband-wife team as you meet with other husband-wife groups living the same shared experience.
Support groups can also be a valuable tool for the single parent or the sibling who needs someone to listen to them and give them emotional support as they deal with their family's situation.
Look out for local disability support groups in your area. Lists of community support groups can usually be found online, on social media, or in your healthcare settings, i.e. doctor's office, hospital, clinic, counselling facilities, as well as in local schools and churches.
Professional Help
Counselling can offer comfort in knowing that the emotions, attitudes and feelings of the family members are all 'normal' to experience in these circumstances.
Counselling can offer family members the opportunity to redirect their emotions into something positive for the family unit and the best interest of the children.
Individual and group counselling can take place with psychiatrists, psychologists, or within a support group of people who have similar experiences.
Check with your GP for a referral.
Strategies for Positive Parenting
“Keep your face to the sun and you will never see the shadows.” --- Helen Keller
Being a parent can be both rewarding and challenging. The extra expense and time it takes to raise a child with a disability means the additional stress can take a toll on parents and cause relationship stress. This can have a negative impact on the family unit at a time when both parents need additional support. Sometimes the everyday demands seem too great, and families can experience crisis as they struggle to cope. But families can also use their unique circumstances as an opportunity to become a more resilient and healthy family unit.
Strategies for facilitating resilience in families experiencing chronic stress situations include:
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Opening up channels of communication - communicate with family and/or your co-parent about how you are feeling
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Seek professional help (counselling)
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Consider joining a support group with other parents of children with similar disabilities (on - or offline)
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Make time for each other (spouse and other children) a priority
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Become an expert on your child’s disability and locate resources and/or programs to assist your child
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Keep perspective - try to stick with a daily routine and take one moment at a time
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Develop a support network for practical assistance (Circles of Support)
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Embrace respite and take extra care of yourself
Having a child with a disability does not have to be devastating for the parents, siblings or child with a disability. With the right mindset, support systems, and a little fun, the family can learn ways to deal with and overcome chronic stress, in order to not only survive, but thrive.
In One Miracle at a Time: Getting Help for a Child with a Disability, Irving Dickman says,
“it is not the child's disability that handicaps and disintegrates families; it is the way they react to it and to each other. Finding a way to deal with the added stresses, minimize them, overcome them – by sharing them – can glue a marriage (and a family) together more firmly than ever.”
Develop a Support Network for the Family
Your first port of call after diagnoses, is to get in touch with your local NASC (Needs Assessment Service Co-ordination). Read more about what a NASC is, and find your local one. They will advise you on what funded supports might be available.
The most valuable resource is the family's personal support network - but this is something you must actively create.
Family members; education, medical & therapy professionals; friends, volunteers, support groups, trained baby-sitters, support workers, etc. - they can all become part of your Circle of Support.
At times of crisis, this social network can be called on to fill the gaps and give the family a break.
Make Time for Partners and Siblings
For a healthy family life and future, “those who play together stay together”. Making time for yourself and each other should be a priority and key for keeping relationships intact and healthy. Go for a walk in the park, go to a movie, set up date-nights, etc.
Making time for the other children should also be a priority. Siblings need to know that they are special, valuable, loved, and don't always come second. Encourage them to embrace their childhood, thank them for all the help they give around the house, and acknowledge their feelings.
Siblings are an important group of individuals. Living with a brother or sister who has a disability can be challenging and very different to what other typical siblings face. There are programes in NZ which are designed to support siblings of special needs children.
Play as Therapy
Leisure, recreation and play should be an important component of any child's life, and this should be the same for the child with a disability.
All children learn important life skills through play, and play can also be therapy. Parents teach children important lessons in recreation and leisure times.
Try not to hold back from doing activities that ALL the family can enjoy! Adapt the environment to make all activities as inclusive as possible. Many families go on overseas trips, boat cruises, camping & tramping trips with their children/child with AS. Have fun and build memeories together.
Angel On Earth
He might not talk he might not walk
But his smile lights up my world
He gives me hugs he gives me love
... and giggles when he's twirled.
Sparkling blue his eyes shine true
Of innocence and pure joy
He has special needs but I don't care
He is my cherished boy.
His name is Maverick he is my brother
My angel here on Earth
Sent by God from heaven above
A blessing since his birth.
Poem by 11 year old sibling, Logan Nicole Mark
Respite
Respite is time away from the disability and/or stress of family life - where individual or group family members can rest and refocus on themselves or on other family members. You will need to get creative and work out when and how to fit in some 'mental-health breaks' during your day. For some it is a power-nap, for others it is a short walk in a forest or on the beach.
To access Respite supports & services, talk to your NASC. Services for facility-based respite options are few and far between. The NASC will:
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check your eligibility for Ministry-funded disability support services
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work with you to identify what your needs are and what supports or services will best meet them.
The amount of funded Respite support you will receive is based on you/your family's needs. There will be different types of Respite supports and services available in your community.
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Auckland region respite options: a ‘respite option’ is any support or service that gives you a break from your caring responsibilities. This can be a break away or a break in your home.
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See more on Transforming Respite: Disability Support Services Respite Strategy 2017 to 2022
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Respite may also be needed by the child with the disability or for the siblings - time away from the family who is so focused on providing for the special needs - a break where the focus is not on disability. See SibSupport NZ
Resources
A person-centred approach for Families in NZ
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Enabling Good Lives (EGL): A new approach to supporting disabled people
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What helps disabled people and families take control - for the National Enabling Good Lives Leadership Group
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The Disability Support Guide - aims to help families navigate their way throughout the NZ disability sector