BECAUSE GRANDPARENTS CARE TOO
Recently I had the pleasure of meeting Anne, a grandparent and the developer of SNUG. She told me about her experiences and what led her to develop SNUG.
Your eagerly awaited Grandchild has been born with a disability, not the news you were expecting. Upon hearing the news myself I can remember feeling frightened and confused. I wanted to burst into tears but I knew that I had to be strong for the sake of my Daughter. Later in the privacy of my home I gave into the tears but I also felt another emotion GUILT.
My Granddaughter was born with an underdeveloped brain, and has Global Developmental Delay there is still no official diagnosis as to why this happened. No one was to blame, so why the guilt?
I felt guilty because I did not know what to say.
I felt guilty because Mums fix things, they make things better. I could not make this better.
I felt guilty because I knew that my own child’s life had now changed forever. This was not the future I wanted for her. I felt as if I had failed her as a Mother.
These feelings did not last but they were very real at the time. The problem is that it is hard for Grandparents to talk to anyone about their own feelings and emotions as, understandably, everyone is concerned about the parents of the disabled child. I also found it difficult to talk to others about my feelings. For a Grandparent to talk about how things are affecting them could be looked upon as selfish by some, especially at a time when all the focus is on helping the Parents. The truth is though that it does affect you and you do need to talk. Grandparents need to be able to talk to other Grandparents who understand what they are going through because they have been there themselves. At the time though I had no idea that other Grandparents might be going through similar feelings.
It was only after a chance meeting with a few other Grandparents at my Granddaughter’s special needs nursery that I learnt that I was not the only one that felt this way. During a short space of time a few of us started up a conversation and one by one we realised that we were not alone. I went home later that day feeling that a weight had been lifted from me. I decided that I needed to do something to help bring Grandparents of Grandchildren with additional needs together so they could help each other through their own experiences.
At first I was only concerned in getting a local meet up group started. My local Council had a lottery funded project called Skillshare and this had been set up to provide training for parents and carers to set up local support networks. I outlined my plans to them and thankfully they agreed that Grandparents were often overlooked when it came to supporting families and yet Grandparents nowadays help with the care of their Grandchildren more than ever. Thanks to Skillshare and Big Lottery Funding I was able to get SNUG (Special Needs United Grandparents) off the ground and we started up a local meeting group for Grandparents of SN Grandchildren where we were able to talk about our feelings and share advice among others who understood. Two years later and that meet up group is still going.
Once the group became better known, I was starting to get calls from Grandparents who still wanted to be in touch with others but were not able to come to the meetings for various reasons. Because of this I decided to put SNUG on Facebook. The group page is closed and is for Grandparents of SN Grandchildren only. This is to offer members a bit more security and the chance to be able to open up without the worry of upsetting any other family members. We started off slowly but over time the numbers have been growing. To date we now have 175 members on our Facebook Group which includes Grandparents from all parts of the world.
At our local group there are Grandparents like myself, who have children like my Granddaughter, who have both physical and mental challenges and are non verbal, but others may have learning difficulties rather than physical. Our group meetings offer Grandparents the opportunity to chat about anything they may be concerned about, to share information and any good news (which is important). They are very informal.
Through Skillshare and Big Lottery Funding we were able to have guest speakers and informative workshops which were extremely useful. We have had workshops on Story Massage, Lego Therapy, Stress Busting and a talk about understanding Autism.
Clearly there is a need for a group like SNUG and I would love to see it continue to develop and grow. One of the ways I would like to see it develop more is by helping others to start up their own local SNUG meetings within their local area. Socal media can be a great help and our Facebook community is full of advice and support, but being able to speak to someone face to face has a lot of advantages too and if they come from within your local community local information can be shared. Not all Grandparents use social media, so to be able to have a network of meet up groups would be an advantage in that respect too. I have recently started something called SNUG Contact, which enables Grandparents to register their contact details and should any other members register from the same area then I would be able to put them in touch with one another.
As the Skillshare Project has now come to an end, I need to start thinking of how SNUG can receive any further help or funding to continue it’s growth, so I am currently looking into the possibility of getting the group charity status.
A couple of years ago I decided I wanted to meet other Grandparents like me who had a Grandchild with additional needs. I had no idea at the time that there were so many others out there who wanted that too. SNUG (Special Needs United Grandparents) was formed because I needed it and still do, but I hope that we can continue to be there in the future for other Grandparents so that when they are told that their Grandchild has been born with additional needs/disability they at least have somewhere they can go for help and support.
If you are such a Grandparent and would like to join SNUG (Special Needs United Grandparents) there are a couple of ways you can become involved.
If you live in Staffordshire (UK) and can get to Stafford Town Centre once a month during term time, we would love to welcome you to our Stafford meet up group.
Just contact me using one of the methods below.
If you would like to know more about the SNUG Contact scheme and would be interested in forming a local SNUG Group in your area then again please get in touch.
If you have a Facebook account and would like to join our closed group on Facebook then search for SNUG (Special Needs United Grandparents) answer the three security questions asked and submit a join request.
If you would like to read informative blogs from other Grandparents, find useful information with regards to additional needs then please visit our website. This is available to all not just Grandparents. https://specialneedsgrandparents.wordpress.com/ You can also follow us on Twitter @SNUGnews
E-mail (preferred) firstname.lastname@example.org
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