I don’t think that I’m alone when I say that I think that parents of children with special needs are scared a lot of the time.
We fear our children being rejected.
We fear those looks that people give. The vile words that are said, often thoughtlessly and flippantly. But those words hurt like hell. They cut us to the core. We are left with a decision – do we challenge people about their choice words or looks, or do we hold our heads high externally, whilst internally dying a little.
What would you do, if someone called your child retarded or stared at them in the street, saying “she’s a Down’s”? Would you challenge them? Or would you scurry away with your child, hoping that they didn’t hear? Would you be so angry that you couldn’t vocalise how it made you feel? Then you go home and think about everything that you should say. And feel terrible guilt that you didn’t.
We fear puberty (there I’ve said one of my biggest fears) – and now I’ll bury my head back in the sand until another time.
We fear the common cold – stupid you think? Nope – to what is to you a common cold, can knock a child with special needs and health issues for six; they can end up in hospital fighting for their lives.
We fear the brown envelopes that fall through the door. The forms that ask for a character assassination of our children. The appointments that we have to attend so regularly.
We fear that we aren’t doing the best for our children. That we should be doing more. That we don’t spend enough time with our children doing therapy. That we don’t spend enough time having fun.
We fear that we are letting them down.
We fear that one time, we won’t be there in time to stop them running out into the street, to stop them choking, to stop their seizures.
We fear that we push people away as we are scared of telling family and friends what it can be really like, how lonely we can be.
We fear that when we do tell people how we feel, that it will make no difference. That nothing changes. That people will neither care nor understand.
We fear letting professionals through our door, for fear of judgement that we aren’t doing enough, that our children are just another number. A health professional once told me that she was considering doing a referral to social services as our house was too clean. Evie at the time was a few weeks old, our first child. She slept and I cleaned then. Yet I was expected to look like a wreck with a tip of a house. Things like that undermine professional relationships from day one and breed mistrust.
We fear relying on people; professionals, friends, family – for them to let us down. This happens to us all.
We fear the future and what it holds.
We fear our children dying.
We fear dying before them and then who will look after them.
We fear that when our children grow up, we may not be able to protect them as much as we want to. That we can’t give them the life that they deserve.
We fear what our children’s siblings will make of it all. We don’t want to fail them either.
We fear asking for help. Are we weak to admit that we need help? Are we going to be frowned upon and judged? Are we poor parents to ask for help?
Fear is underlying most of everyone’s days. We try not to let it rule, but there are some days where it leaps to the fore. It makes you question yourself over and over. Makes you critique your life and what you could do to make it better.
Perhaps if people can just understand a bit more, then maybe parents won’t feel like this (as much). If the comments and judgements would stop, the acceptance would come and SN parents would feel more at ease, their fears would reduce.
So how do we cope – for me, I found that decent family and friends, research and study, work and this little blog help – and NOT forgetting to have FUN – that’s the most important thing of all!
If you keep a fear hidden inside, it eats you up, it gets bigger and bigger. If you share that fear, it’s still there but becomes manageable. Work gives me, me back. I get to meet people, do something that I find fun and feel part of a useful work community. Research and study empowers me. I’m able to make active decisions rather than flowing from one thing to another and feel able to challenge when I need to.
This blog allows me to put down whatever I want on paper. It’s whatever I’m thinking at that particular moment. And when is on paper, it’s done.
Friends and the family that care allow me to vent and discuss whatever is worrying me.
These fears will always be there, it’s learning to deal with them that matters.