Tag Archives: kinship care

My experience as a grandparent of a disabled child

Vicky Harris is Face 2 Face Co-ordinator for our befriending service at Liverpool’s Alder Hey Children’s Hospital. She believes that grandparents of disabled children, as well as parents, need access to emotional support. Here Vicky shares a very personal experience of disability in her family.  

I have been blessed in my life to have three children and three grandchildren, but I feel there may be more grandchildren to come in time! My eldest child, who’s nearly 30 was born with a very rare physical disability which at times has been emotionally challenging. She has grown into a beautiful adult who I’m very proud of.

Nearly eight years ago my second grandchild Jack was born to my daughter Sammie who was 20 at the time. I remember being so
excited as I had a granddaughter who was two years old, and I was now lucky to have a grandson too. The first time I saw him, he looked so beautiful but I knew something was wrong. Within a wBaby Jack asleep in a blue cardigan and hateek we received the news that Jack had catastrophic brain damage. I have to say I felt devastated. Devastated for my daughter and her partner, and devastated for Jack.

I loved him so much, part of me hoped the doctors had made a mistake but I knew they were right. I was trying to find light in what was a very dark time. We spoke to the consultant and then came crashing down again when we were told he might not live beyond eight years old. He would be completely reliant on my daughter for all his needs. My daughter hurt so much, I wanted to take her pain away and make her feel better but I knew I couldn’t.

As a family, we rallied round. I remember Jack started drinking from the bottle, which the professionals had feared he may not do. This offered us hope, but sadly it didn’t last and he had to be peg fed to help him thrive. We were always looking for hope, then hopes were dashed along the way. Picking ourselves up, loving each other, caring, scared the day we were dreading would come.

As a grandparent I felt almost useless, sitting back and watching the journey unfold, knowing the outcome one day would be having to say goodbye to Jack. I know my daughter hurt, she was a wonderful mother to him. I know she loved him with all her heart, and I wondered if she’d be able to let him go when that time came.

I wanted to fix the situation, change it, make it better. Watching Jack have many fits, hospital visits, but also trying to live this normal life. Enjoying every day, loving him every day, always mindful of how precious his life was. As a family we’d already experienced disability. We knew in the grand scheme of life that disability is not the end of the world. Yes, it can seem a different world at times, but none the less a good life can be lived. With Jack it seemed so final, and we just hopeJack at three years old strapped into his pushchair, wearing a shirt and smart waistcoatd he would stay strong for as long as possible.

My granddaughter Jess loved him so much, she would pretend she was reading him a book and then poke crayons in his ears! She seemed to understand he was special, her bond with him was so beautiful to see.

Sadly, the day we had dreaded arrived all too soon. Jack had pneumonia and was on life support for 10 days when it was agreed it should be withdrawn. My heart broke watching my daughter be so brave in letting him go. When we said goodbye, Jack was only three years old.

I have such immense pride in my daughter, I wanted to spare her the pain, spare her the hurt but no one could have loved him more than she did. We were all blessed to have Jack in our lives, and we’ll never forget him.

Vicky will be starting a grandparents drop-in group in Liverpool next year. Would any of you grandparents of disabled children be interested in attending something like this, where you can meet other grandparents, talk about your experiences, and gain support? Please let us know. 

We are fortunate to have Grandparents Plus on our online community this week, talking about some of the issues Vicky has raised here, and answering your questions.

“I’m caring because the alternative was unthinkable”

Ann is one of an estimated 25,000 carers over the age of 65 who are bringing up grandchildren or other family members, because their own parents are unable to look after them. Here, she describes the impact this has had on her life.

My story began over 22 years ago when my eldest daughter was in her first year of Art College and had a psychotic episode. She never recovered and, after 22 years of being in hospitals and various hostels, she still suffers from mental ill health. This was a devastating experience for all the family.

17 years ago my daughter had a child – my granddaughter – and I became a double carer. My husband and I were still supporting our daughter and, as she was taken into hospital six days after the birth, we took on the responsibility of the new baby. My granddaughter was put on the ‘at risk register’ at birth as a consequence of my daughter’s mental health condition. She was assigned two social workers, one before the birth and another after the birth.

We were advised by the second social worker to take out a residence order to safeguard the welfare of our grandchild. We were not told it meant there would be no support whatsoever after this, as the child would then be our responsibility. The legal procedure cost us about a £1000 and a lot of emotional heartache, knowing we were taking on a role that should have been our daughter’s. We also felt a lot of pressure from the social worker as the alternative was to take our grandchild into care.

Meanwhile my husband and I were juggling caring for our granddaughter, working, caring for our younger daughter, visiting our eldest daughter in hospital daily and supporting her relationship with her own daughter with as many visits as we could. When my granddaughter was two, my husband of 33 years, left us. He said he wanted a new life which is hardly surprising given the life we had.

The last 22 years have had a huge impact on my life, physically, emotionally and financially. However despite the hardships my granddaughter has just finished secondary school and achieved 10 GSE’s plus a distinction in a BTEC music course. She plays football and was selected to be part of a centre of excellence. She has survived her difficult beginnings and is now thriving with an exciting future ahead of her.

The role of kinship carer

Kinship Care, Family and Friends Care or Connected Carers are all terms used by the social services to describe what I and many thousands of grandparent, siblings, aunts and uncles or even very close family friends are doing on a daily basis. We look after the children because we love them and know that the alternative of putting them into care is unthinkable.

It has been estimated there are about 300,000 children being cared for by other family members because the parents are unable to look after their children for a variety of reasons. The majority of those carers are, like myself, retired and living on pensions.

Once a residence order or a special guardianship order has been awarded, which are issued through the courts, we then take on the parental responsibility and more. Some grandparents are caring for four grandchildren, some have children who are disabled or who have been traumatised by their earlier experiences, and we even have great grandparents caring in their 80’s. It is estimated that around 25,000 family and friends carers are over 65 but this figure is probably greater than the estimation.

We meet the daily needs of the child, we keep them safe, we nurture them, we provide stability and love and give them a sense of still belonging to the family. We coordinate contact between parent and child where appropriate, and this can be a very difficult role especially when we are suffering the pain of knowing our own child has such overwhelming problems.

Statistically, children who are cared for within the family do much better than those in care. They may have experienced the same multiple adversities as children in care, but the benefits of remaining with their family help them overcome those traumas.

Sadly the role of kinship carers is often hidden and unrecognised. It has been estimated that kinship carers save the taxpayer £12 billion a year in care costs (if the children we look after were put into foster care). We campaign constantly for better support and recognition and some of our pleas are heard but there is still a long way to go to secure a better future for our children.

However despite all the problems and difficulties I would not change a thing. It has been a joy and a privilege to bring up my granddaughter and I would do it again a hundred times over.

We are fortunate to have Grandparents Plus on our online community this week, talking about some of the issues Ann has raised here, and answering your questions. Please join us!