Years ago I would read “inspirational” stories of carers and be in awe of how much of themselves they devoted to another person.
I would read of their struggles, the hospital stays, the sleepless nights, the physical and emotional strain and the total willingness with which they did everything and know that I was not reading a story about caring, but about love.
And that is my story.
My story is one of love.
I have heard people say “I couldn’t do what you do” and, whilst I know they mean that kindly, it is a comment which stings, because all I do is love my son. And he is easy to love.
Loving my son is easy.
Caring for him is often physically and emotionally exhausting but loving him is oh so easy.
Many carers will tell you the same. The struggles are not from caring, they are from the endless feeling that you have to plead, beg and argue for what little support you can get.
We couldn’t get our son’s need for a lightweight manual wheelchair met, so we found one ourselves. Likewise, when he needed a powered wheelchair to meet my health needs as well as his, we were left fundraising. Without the kindness of others we might still be housebound.
The school experience was not great so we home educate. It really is better for Adam and, even though it is not what we planned, we will continue with it because it is the best way to meet Adam’s needs. But we get zero support in this.
When he was at school the local authority funded two staff members at all times, just for him, because it was recognised that his care and learning needs required a very high level of support. This was in addition to the class teacher who was still responsible for his learning. The provision of two staff was also meant to protect the carers – the risk of injury to them was high without two people working together. At home? Just me! Because I am apparently fine and it doesn’t matter if I get injured.
Therapy services are stretched well beyond what they can reasonably do. We are fortunate enough to have had some excellent physiotherapists and occupational therapists working with Adam over the years but they are stretched too far to provide the kind of service which I know they would like to offer. With physically complex children their allotted time is often spent arranging or altering equipment instead of working on new skills. A long time ago someone was going to work on self feeding skills with my son, but it didn’t happen. I do all I can, but there is a reason therapists have done all that training.
Physiotherapy exercises are shown to a parent but, when you have a complex child, quite often it takes two people. At school, his two staff were there to follow any programmes. It was classed as an educational need and met, as it should be.
Even when my back injury left me barely able to move, there was no practical help from any services. Despite the social care team knowing that the primary carer of a child who needs everything doing for them was struggling to move. I am very fortunate to have friends and family who did what they could to help but feeling dependent on others was not nice. And that hurts even more, because it gave me a sense of how my son might feel.
I have asked for an Education and Health Care Plan (the updated version of Statements for Special Educational Needs) and these plans are supposed to encompass ALL the needs of a young person. However, the first draft arrived and doesn’t even mention that Adam is a full time wheelchair user nor that he requires hoisting for all transfers.
Do I have the energy to battle for a document which will detail the support he needs when I know that they will do all they can to find ways to not actually give it?
Sometimes I drop a ball. Sometimes I forget to do things. Recently I even forgot that we had an appointment! Luckily it was at our home and with an excellent therapist who really does care and who actually understands the reality of our often complicated life and I know that she did not judge me for it. She knows that we are doing our best.
I can’t even attend a forthcoming meeting with a councillor about improving services for disabled children. It is in a café and children are welcome to come along, so it sounds very accessible…
Except there are no toilets that Adam can use at that café. So we can’t even be part of a consultation to help improve things for disabled children. Without a hoist and bench in the toilet, we can’t “go”.
And these things all make life so much harder than it needs to be.
And this is the difference between carers and services.
Some days I do struggle to meet all of his needs but I keep trying because I want to be the best I can be for him, so that he can be the best he can be.
Whilst those responsible for the processes which could help seem to struggle to care at all.