Special care baby family support
GPV member Victoria Maynard writes about her experiences with her special care daughter, and her supportive playgroup for children and parents held every Thursday term time at the Slade Children's Centre.
"We received our baby’s diagnosis while she was still in intensive care. Like many other families we were told “this doesn’t happen often” and “you child is very rare”. This left us feeling isolated and alone, but it doesn’t need to be the case.
In every thousand babies born in the UK 3-4 will suffer from a lack of oxygen to the brain before, during or shortly after labour like our daughter. Approximately 70 babies will be born prematurely, with 7 of these having a permanent disability. 1 baby will have Down’s Syndrome and 1 will have a rare genetic condition leading to disability or ill-health. These numbers may seem small, but collectively this is a significant number of families facing very similar challenges.
Firstly, there’s worrying about their child’s diagnosis, and what this means for their future. Then they’ll need to attend frequent appointments and fill in endless forms, while dealing with numerous health professionals and learning completely new skills and terminology. Families are likely to face challenges finding appropriate childcare or schooling, and the demands of caring and appointments may mean that one or both parents may be unable to return to work. Unsurprisingly, parents under this kind of pressure are likely to feel isolated, anxious or depressed, while the likelihood of parental separation also climbs rapidly in the first years of the life of a disabled child.
Fear of facing our future alone led me to search for other families in the same situation when my daughter was just six weeks old. I quickly joined online support groups which later led to meeting local families in person. In the early days we attended baby massage, rhyme time and more at our local children’s centre. But as other children started crawling, walking and talking we began to realise there was nothing there which suited our needs.
I explained our problem to Home-Start Greenwich (who run our local children’s centres) and they helped me to set up a playgroup specifically for babies and young children with additional needs. We decided it should be for all kinds of disabilities and conditions – even babies and children too young to have a formal diagnosis – and that it should be parent-led, supportive, and adapt to the needs of each child. The Slade Children’s Centre offered us a lovely room to play in and we’ve been meeting there every Thursday morning since January 2017.
We’ve met many amazing children, parents and carers over the past two and a half years. Some children have gone on to nursery or school, but many families keep in touch through our facebook group, and come back and visit us in school holidays, or at our new football club on Saturday afternoons. Playgroup has made a massive difference to the families who’ve attended – especially those just coming to terms with a new diagnosis. It’s also been a big help to our family, as we are now part of an incredible network of families who learn from, support and inspire each other every day.
If you are a parent or carer of a baby or young child with additional needs please do come and join us on Thursday mornings. We would love to meet you and share in your journey. You really don’t have to be alone."