A few weeks ago it was National Siblings Day – who even knew that was a thing!! It was on 10th April this year. Its purpose is to celebrate our siblings and our relationship with them. It got me thinking about how my boys sibling experience has been very different to mine.
I have just the one sister, Joan, she is two-and-a-bit 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. As we got older, we’d go swimming together at the local pool or walk to the bakers to buy lunch in the school holidays and come home and watch Crown Court on the TV. She was just always there. As teenagers we grew apart and naturally 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.
My Two Boys
James is 27 years old and has complex needs. He is non-verbal and has a severe learning disability. Harry is 24 years old. Growing up together has been very different for them.
James was three and a half years old when Harry was born. Due to the severity of his 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. When they were very young there were times when they played together and were able to do things together that they both enjoyed.
I remember we had two children’s toy buggies. They would run around the house laughing and chasing each other. My door frames still bear the scars! Harry loved to make things and would stick cardboard boxes and yoghurt pots together to make elaborate drum sets and James would think it hilarious and entertaining when Harry ‘played’ them. Maybe I have Harry to blame for James’ eternal love of drums!!
It wasn’t long before Harry’s abilities surpassed James’ and he wanted to play different games. He loved Thunderbirds and we’d have to set up all kinds of different rescue scenarios for him to play out. What he wanted most of all though was someone to play these games 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.
The Sibling Support Group
For a number of years James attended Naomi House Childrens’ Hospice. Harry was invited to join the sibling support group that they ran. It gave him the opportunity to go on days out with other children in a situation similar to his own. 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 unfortunately 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. Sometimes friends would help up and pick Harry up and drop him off but I could rarely return the favour and so I didn’t like to ask too often. These things may seem inconsequential to other people but to a child ‘fitting in’, being able to do the same things as your peers is important. It’s a horrible feeling for a child to not feel the same as everyone else, to not feel part of the group.
Many years on and the boys are now young men living their own very different lives. James lives in supported accommodation and so they don’t spend nearly as much time together. I’m aware though that Harry keeps a listening ear on what’s happening in James’ world, he has strong opinions and lets us know if he feels something isn’t right or James has been dealt a disservice in some way. He’ll call me from work to check how James is if he knows he is unwell or if we’ve had an appointment somewhere. He’s not involved hands-on in James’ care but he likes to know everything is ok for his brother. James it’s fair to say is indifferent. He often won’t see Harry for a while as he will be at work when James is with us. He didn’t see him for months last year when Harry went to Australia. We spoke of Harry often of course and showed James the pictures Harry was sending. There was no huge happy reunion on Harry’s return, they hugged and James response was as if to say ‘oh ok he’s back then.’ But that’s James all over.
Hi Helen I’m an only child too and maybe I can reassure you by saying it doesn’t bother us as much as you think it does. We don’t know any different. I did have a friend who was a year older and we were like sisters. We didn’t play together constantly we both had other friends but we played together often and she paved the way for me by always doing things a year ahead. I suppose she was my sister substitute. I do have a stepsister who I’m close too but we don’t share a past we only really became close as adults. Luke is an only child too and whilst I thought it would have been lovely for him to have a sibling Tim never agreed and I can see both sides now. Your boys are both their own person and you have done the best you can, none of us can do more.
Hello Shelley. Thank you for your response. I guess I always felt Harry was missing out when I looked at his friends and what they were able to do. I also considered giving Harry another sibling so he had someone else and also so that future responsibilities don’t rest on his shoulders alone in the future but what with the level of care James needed and then Harry would have been a middle child and he may have ended up with even less of my time so we didn’t go down that route. I guess as parents we feel the guilt whatever we do.
Interesting post. Being a sibling of a child who is different is certainly a journey and so glad Naomi House was supportive for Harry. Good to he is also so responsible for the love of dums 😆
Thankyou. Meta. Yes Harry has a lot to answer for 🥁