“Although the world is full of suffering, it is full also of the overcoming of it.” --- Helen Keller
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, 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,
“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.”
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.
A great article for parents when they learn their child has a disability: Not alone
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 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.
Parent to Parent: SibSupportNZ
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.
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. Try not to hold back from doing activities all the family can enjoy - adapt the environment to make all activities as inclusive as possible.
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 email@example.com , or call them on 636 0351. The Disability Support guide is now available in English, Simplified Mandarin, Korean and Arabic.
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