Additional Needs
I don’t want the care. I need it.
by Sharon F
on 29th April, 2024
National Siblings Day
There is a day to celebrate our siblings and our relationship with them. This year it is 10th April. I have just one sibling. A sister. Two years older than me as I frequently like to remind her.
As I imagine is the case with most siblings, we don’t always agree on everything, we are our own people and have different views. When I reflect on my childhood though, I remember always having my sister to play with whether it be with our Pippa dolls on the lounge floor or going to the local park together.
As we got older, we’d go swimming or walk to the bakers to buy lunch in the school holidays. She was always there.
As teenagers we grew apart and had our own friends and boyfriends. As adults our lives took us on different paths and for some years my sister lived further away. We were in contact but each busy with our own lives.
Many years later and now in our (late!!) fifties we live barely a mile apart and whilst our lives are still quite different, we are probably closer than we have ever been.
I Have Two Sons.
My eldest James is 27 years old and has complex needs. He is non-verbal and has a severe learning disability. Harry is 24 years old. Their sibling experience has been very different from mine.
James was three and a half years old when Harry was born. Due to the severity of James’ developmental delay, Harry didn’t have a sibling to play with in the same way as I had. James wasn’t always able to do the things that Harry wanted to. There were some times when they were able to do things together that they both enjoyed.
I remember we had two child toy buggies. They would run around the house laughing and chasing each other. My door frames still bear the scars! Harry would stick cardboard boxes and yoghurt pots together to make instruments and James would think it hilarious and entertaining when Harry ‘played’ them.
It wasn’t long before Harry’s abilities surpassed James’ and he wanted to play different games. What he wanted most was someone to play them with. We played with him of course when time allowed but it wasn’t the same as having playmates his own age.
When Harry started nursery and then infant school he loved to play with the other children. Such was his enthusiasm I think he often came over a little over zealous, even bossy and boisterous when in reality he was just desperate for them to play with him.
Once at secondary school, having friends back to our house could be difficult for Harry. James would go up to them and kiss them or sit on their laps. As a teenage boy Harry sometimes found this embarrassing then there was James’ meltdowns to contend with too, especially difficult for Harry when out in public.
Harry later joined a sibling support group at the hospice we attended with James.
This gave him the opportunity to go on days out with other children in his situation. Whilst he enjoyed them, I don’t think they really spoke much about the impact having a disabled brother or sister had on them. When James was 18 years old he could no longer attend the hospice so that finished for Harry too.
At times I felt sorry for Harry, conscious that his mates had their siblings to go and kick a ball about with or play their computer games whilst he had no one. The amount of time I spent looking after James severely impacted Harry. I wasn’t always able to take Harry to scouts or to a party because James was asleep in bed on his feeding pump. They may seem little things to other people but to a child they’re important when you don’t feel part of your peer group and the same as everyone else.
Many years on and the boys are now young men. James lives in supported accommodation. They don’t spend nearly as much time together. Harry keeps a listening ear on what’s happening in James’ world though, he has strong opinions and lets me know if he feels something isn’t right or James has been dealt a disservice. He will call me from work to check how James is if he is unwell or had an appointment. He’s not involved hands on in James’ care but he likes to know everything is ok for his brother.
