As a parent, I want my children to be children, not mini adults. As a disabled person, I need help with some things. This conflict does not sit easily in my heart. I have three kind, helpful and caring children who each have to contribute to our family in ways that other children their age would not even have to contemplate. They help me in many ways, often by fetching things or picking up dropped items. My 5 year old helps me dress. My 2 year old climbs into her highchair and carseat unaided by me. My 14 year old helps me cook our evening meals most days. They all have things to do to help us get through.
There is a balance to be found here. I strongly believe that children should be encouraged and indeed expected to contribute to family life. This is how we teach them how to look after their own family when the time comes. At the very least, I want my children to be able to be self sufficient by the time they leave our family home; I want them to be able to cook and maintain their homes, to know how to keep clean and healthy. Although there is every likelihood they will follow in the footsteps of the millions of junk-food eating students before them, I want to know they can choose a night off from potnoodles and monster munch and actually be able to cook a simple meal. There is also the need to allow them space and time to be kids. To do the things they need to do to grow into healthy adults. To investigate the garden, to play imaginary games, to build dens and do painting. These things can still happen, even if they have to do some other things as well.
I think my biggest struggle comes when I compare the lives my children lead with the ones I want them to have. I want to do so much more with them than I’m able to do. I feel they miss out on trips to the park and local farm. They don’t get to feed the ducks and walk along the canal spotting bugs and generally investigating things around them. Instead they get to help me pick up things I can’t reach, cook meals, or do jobs around the house. Yes, this does look different to some of their friends’ lives, and certainly different from my expectations. However, have you ever met a parent who can honestly say everything is perfect? All families make compromises. For some it’s because of work, money or other commitments. Some families are restricted by location or family circumstances such as divorce. Our compromises just happen to come from my disability.
We have some support in place, thanks to the local young carers service. They have groups to give kids chance to socialize and play away from home. My son is young still and very nervous of being away from me, especially since I’ve been ill. They have been working on building a relationship with him so that he is able to engage in active and social activities he does not get chance to do with me. While I would dearly love to do these things with him myself, at least this way he gets to do them.
I am sad to say that the young carers have not had an entirely positive impact on our family, despite some sterling efforts recently. Two years ago, when my problems were at a particularly bad point, the young carers came to evaluate my eldest daughter’s position. They identified many things she does above and beyond what she should reasonable be expected to do. It was a very difficult meeting. There is nothing more heartbreaking than having to admit the pressure your child is under because of you, albeit not by your choice. We answered their questions and filled in their forms, then never heard another word. The promised support failed to materialize and my attempts to chase it up for her were met with disinterested people who claimed not to be responsible, but they would pass it on to ‘X’, who subsequently failed to make any contact with us at all. We gave up. Struggling and dejected we concluded that we had to find our own way through. And we did. We still do. When my condition worsened again recently, my daughter refused to be part of a new assessment. She didn’t want more broken promises. She also didn’t want to be reminded of how her life is ‘dysfunctional’ according to their criteria. She has come to terms with what our lives look like now in that respect and is content with that. Services like these can be helpful, other times not. I am glad we have given them another chance now though as this time around things do seem to be happening.
There are things I try to do to keep them feeling like I’m their mum. I go to parents evenings and information meetings as often as I can manage. To be fair, I’m there more often than some of the other parents, either because they work or because they forget to go (there’s that comparison again – would it really be that different if I was healthy?). I try to take them and collect them from school as often as I’m able, even though that really means I go along with whoever is getting them as I can’t go myself. I nag them about their homework and help them when they get stuck. I make the decisions, even if I need help to physically carry them out. I’m in charge and they never have to feel responsible for thinking for me.
I guess the most important thing about keeping them feeling like kids is trying to keep things going as normally as possible. Letting them get away with things to compensate for my guilt over not being able to do some things is never going to help them in the long term. Of course I am compassionate and give them space at times, but most of the time? Things go on as they always have. I’ve learned that my children look to me to know when to worry and when everything is ok. As long as I stay in control most of the time (I challenge anyone to say they have never lost control at some point, especially when the boy has just peed all over the toilet floor or the toddler has broken the record with a marathon tantrum) they adapt to everything else. As long as I continue to reprimand and cuddle at the right times, the rest doesn’t really matter. We will get through this like we do everything else: together.
paininthemum 