This is a post for all the people surrounding those with any sort of additional need, whether it be a physical disability, mental health, or SEN. The immediate and extended family, the supportive friends and those who work in the profession. Even those strangers who help without realising.
YOU ARE DOING AN AMAZING JOB.
This is something that is not said enough, or if it is said, it’s said without truly appreciating what you do. I think it’s fair enough to say that the support for all these people in the UK is not consistently available from government services, and so it is just down to you. It’s your patience, dedication and ability to see the positive in a whole lot of negative that makes you truly incredible, and a real asset to the lives of those you support.
Again, we have a bit of an annoying habit as a society where we don’t know what to say if a family, for example, is struggling with the care needs of someone they love, especially if they have additional needs. Because we don’t know what to say, we revert to the pity of the person with whatever need, saying things like “Aww, bless them!” when we’ve just been told a story from a parent about how their struggling with their disabled child. This immediately sends a tide of guilty feelings, as they’re made to feel horrendous for ever thinking negatively of the person they’re caring for. That also completely misses the point of the story.
This is not fair. If the person you care for in your family was typically developing, you would be able to express how they’ve really wound you up. It’s a fact of life – children can sometimes be irritating, siblings are expected to argue with each other, and parents sometimes get to the end of their tether with everyone. It’s a completely normal part of the family unit to wind each other up, say things you don’t mean and just get really frustrated. This should not change if the people involved have some sort of additional need. They have developed their own personality just like everyone else and this does mean they may develop traits that are unbelievably tiresome. It happens. You are allowed to point this out.
Instead of us pitying the individual, we should be praising the family/group of friends/support network even more highly. They have to work arguably twice as hard to ensure that the person they care for is happy and healthy, and do far more to ensure that they stay calm than they maybe would for someone who is typically developing. They appreciate all the extra steps they have to take to accommodate for whatever need the person may have, all whilst trying to maintain positive. It’s like being a member of staff at Disneyland, except from your only relief is when you’re asleep.
They’re work is relentless and often without thanks, and because they do it so well, it seems that external services don’t seem to recognise how tough it is. So I wanted to take the opportunity to thank all these people, because these carers are just incredible. Sometimes that smile of yours might not be truthful, but it shows how much work you put in and how well you’re coping, and you truly are doing an amazing job. Thank you.