Support for Grandparents
SOFT UK has a Facebook group for grandparents to connect with each other and receive support. To join this group, please visit: https://www.facebook.com/groups/1033908643820773/
Other possible sources of support and information are listed below.
General Guidance
Contact’s Guide for Grandparents
Contact has put together a Guide for Grandparents to help grandparents to understand how they can support their children with raising a child with additional needs. This includes helpful advice, signposting to support and information about taking on full-time care. They also have a helpline if you need further advice.
https://contact.org.uk/wp-content/uploads/2021/03/Grandparents.pdf
Down Syndrome Association of Central California
Although this guide has been written for grandparents of people with Down Syndrome, there are many sections which may be helpful to grandparents of children with trisomies 13 and 18. For example, ‘What it means to be a Grandparent’ (p11), ‘How Grandparents Can Help’ (p12-13), ‘Feelings and Emotions’ (p17) and ‘People First Language’ (p18)
https://www.dsacc.org/wp-content/uploads/2019/12/agrandparentsguide.pdf
Every Star Is Different
This blog post has some suggestions about how to support your son or daughter when they have a child with additional needs. It also offers some advice about forming a relationship with your grandchild.
https://www.everystarisdifferent.com/2014/03/to-grandparents-of-special-needs.html
Supporting Your Grandchild’s Siblings
Sibs
Sibs have written a webpage offering grandparents advice about how to support their other grandchildren, including helping them to talk about their sibling, providing support when their sibling is in hospital, and treating grandchildren fairly.
Supporting Your Grandchild Financially
Setting up or contributing to trusts
If you are thinking about supporting your grandchild financially, or are planning to leave them money in your will, it may be a good idea to talk to their parents about the best way to do this. For some children with trisomies 13 or 18, it may be more appropriate to pay money into a trust fund rather than paying the money into a bank account. We recommend that you and your family seek financial advice to help you make the most appropriate decision for your grandchild.
You can read more about trust funds in SOFT UK’s ‘Planning for the Future’ guide, which you can download here: https://www.soft.org.uk/planning-for-the-future
Bereavement Support
Child Bereavement UK
Child Bereavement UK has a webpage with some guidance for grandparents who have been bereaved. It talks about how grandparents’ grief is unique, and the different emotions that you may feel after the loss of a grandchild. It also offers some suggestions for how to support your child and your grandchild’s siblings following bereavement. Child Bereavement UK also has a helpline if you need advice or support.
https://www.childbereavementuk.org/when-a-grandchild-has-died
Sands
Sands is a stillbirth and neonatal death charity. They have written a booklet with information for bereaved grandparents to help you to understand people’s reactions of grief, what your child and their partner may be experiencing, options for mementoes and keepsakes, and how to support your child.
https://www.sands.org.uk/sites/default/files/SANDS-GRANDPARENTS-BOOKLET.pdf
