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        The Family      

“Although the world is full of suffering, it is full also of the overcoming of it.” --- Helen Keller

“Keep your face to the sun and you will never see the shadows.” --- Helen Keller

Strategies for Positive Parenting 

 

Being a parent can be both rewarding and challenging, even for parents of children without disabilities. 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 more 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 of life seem too great to overcome and families will experience crisis as they try to survive. It is no surprise then to learn that having a child with a disability can also drive families apart or into a state of chronic stress or crisis. See Caregivers.

But this does not have to be the case. Families can use their circumstances to become a more resilient and healthy family. Strategies for facilitating resilience in families experiencing chronic stress situations include:

  • Opening up channels of communication - communicate with family and/or your co-parent about how you are feeling

  • Seek professional help (counselling)

  • Consider joining a support group with other parents of children with similar disabilities (on - or offline)

  • Make time for each other (spouse and other children) a priority

  • Become an expert on your child’s disability and locate resources and/or programs to assist your child

  • Keep perspective - try to stick with a daily routine and take one moment at a time

  • Develop a support network for practical assistance (Circle of Support)

  • Embrace respite and take extra care of yourself

 

Having a child with a disability is not a catastrophe for a healthy and happy family life and 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 the book One Miracle at a Time: Getting Help for a Child with a Disability, by Irving Dickman, he says,

Professional Help

Counselling can offer comfort in knowing that the emotions, attitudes and feelings of the family members are all 'normal' to have. 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.

Parent Support

A great article for parents when they learn their child has a disability: Not alone

See Caregivers.

Do you need to talk to someone in NZ who can tell you more about first hand experiences with Angelman Syndrome and pass on some advice and support? If you are a parent or family member with a newly diagnosed loved one, you can contact the following mums who will be happy to assist you with any questions, advice or support you may need at this time.

Support Groups

Support groups can be beneficial to the husband-wife team as they meet with other husband-wife groups who have lived their current experience and can provide valuable insights or just listen to what a couple is dealing with. 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 families situations. Listings of support groups can often be found online, or in healthcare settings, i.e. doctor's office, hospital, clinic, counselling facilities, as well as in local schools and churches. Read more...

Develop a Support Network for the Family

Needs Assessment Service Co-ordination: Your first port of call after diagnoses, is to get in touch with your local NASC service (Needs Assessment Service Co-ordination). Read more about what a NASC is, and find your local one here. They will advise you on what funded support might be available. The most valuable resource is the family's personal support network. Family members, medical and helping professionals, friends, volunteers, support groups, trained baby-sitters, support workers, etc… At difficult times this social network can step in to fill the gaps, and to 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 for 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 be a priority also. 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.

 

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 other family members. To access respite supports and services in NZ talk to your local Needs Assessment Service Coordination organisation (NASC). Your local NASC will:

  • check your eligibility for Ministry-funded disability support services

  • work with you to identify what your needs are and what supports or services will best meet them.

The amount of funded respite support available is based on your needs. There are different types of respite supports and services available in your community. Read more about respite supports and services.

See more on Transforming Respite: Disability Support Services Respite Strategy 2017 to 2022

Respite may also be needed by the child with the disability or 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.

 

Play as Therapy

Leisure, recreation and play should be an important component of any child's life, and this should be no different for the child with a disability. Children learn important life skills through play, and play can also be therapy. Parents teach children important lessons in recreation and leisure times. Some may think that due to the nature of the child's disability that their child cannot participate in certain leisure activities. Try not to hold back from doing activities all the family can enjoy - adapt the environment to make all activities as inclusive as possible.

Resources

A person-centred approach for Families in NZ

The Disability Support Guide aims to help families in NZ navigate their way throughout the disability sector, and sheds some light on the roles of the Ministries of Health, Education, Social Development, Work & Income, CYF’s and Non-Government Organisations. To order your free copy of the Disability Support Guide, please email Disability Connect on admin@disabilityconnect.org.nz , or call them on 636 0351. The Disability Support guide is now available in English, Simplified Mandarin, Korean and Arabic.

Angelman Today is our international

Angelman community’s very own online

magazine. Sign up to receive FREE access

to copies of this informative magazine.

Find Angelman Today on Facebook, here

 

 

 

 

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

Printed with permission:written by 

11 year old sibling, Logan Nicole Mark

 “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.”

South Island

  • Jeanne Coker (Christchurch) – Ph 021 406064      

Join our social media groups here...

North Island

  • Sivao Winther (Auckland) 

      09 813-5194

  • Kathryn Cherie (Manawatu)

      06 326-7332 or

      027-224 3924

NZ Support Helpline:

                    021 1382878

NZ Support email

    angelmannetwork@gmail.com

General Inquiries and Fundraising

                   021-1382878

Email

    angelmannetwork@gmail.com 

ANGELMAN TODAY – A GLOBAL PERSPECTIVE ON ANGELMAN SYNDROME

Angelman Today online magazine is the first and only publication of it's kind. Our articles feature information that we hope will revolutionize the current care and standard of practice for the treatment and education of those affected by AS. Angelman Today offers every Angelman Syndrome organisation across the globe the opportunity to submit articles, so that we are all able to benefit from the brilliant minds of those involved in the care, research and treatment of those affected by AS.

We embarked on this project to put the best and brightest from around the world at your finger tips.