One of the great things about having Special Needs Jungle for me, is getting to meet other women who also happen to have children with special needs.
One such laydee is Jenny Smith, a woman of dry wit, a penchant for zoo visiting and a gift for photography. I met Jenny first in person at Mumsnet Blogfest 13, where I was speaking on a panel about campaigning for change (in other words, having a big gob and not being afraid to use it). We met again when she rather wonderfully came to see me when I was in rehab for my Ehlers Danlos syndrome*. Jenny knows all about EDS because she and her children are also affected.
Jenny has her own blog at Cheetahs in my shoes where she writes about her family, photography and life with a painful rare condition.
Jenny's written for us today about how, when there is so much that it's possible to complain about, she feels that for her, it's important to try to accentuate the positive and remember that pleasantries can make all the difference.
“I don’t know why you bother with that teacher," I heard this morning… “She’s rubbish – no good for anything.”
I kept walking – rather keen not to get into the discussion, but with thoughts streaming around in my head (well, as much as they stream when you’ve got some form of evil virus on top of your usual symptoms).
The teacher that was being referred to, in my opinion, is excellent. My son adores her, she ‘gets’ him and he is making excellent progress in her care. I happen to know what roles she’s held in other schools, have worked with her at length and love how she inspires whichever class she’s teaching.
I am frequently told that people don’t understand why I go to my GP practice – it’s huge, can seem impersonal and their phone system is currently awful (but they know that and they’re working on it). Apparently their receptionists are rude and unhelpful and the GP’s dismissive, ‘always’ making incorrect diagnoses and reluctant to help.
I’ve been a patient at that practice, (bar my time at University and a brief spell in London) since birth – so as close as it gets to 40 years. There are some receptionists who I wouldn’t choose to socialise with, a couple of locum GPs who’ve made me roll my eyes but overall, everyone who I speak to there is polite, helpful, understanding and have, on occasion, gone completely out their way to help me. The reception team say hello to me in Sainsbury’s, others just book me the urgent appointment without the cross examination – knowing that in general, I will only be coming to the surgery if I really have to because I have more than enough on my plate. Those who I have cried on (sorry ladies) have been supportive and at least one GP has moved her CPD studies over to look at Ehlers Danlos Syndrome based on my diagnosis.
We spent a night last week in the Patient Hotel at Great Ormond Street Hospital where the shared kitchen throws together parents of children with complex medical needs who all have the common need of a brew. As we bribed our children with the breakfast of their choice in order to get to clinic on time, we discussed the relationships we form with the medical and education professionals with whom we, unexpectedly, now share our lives.
The conclusion we came to was that, for the benefit of ourselves and our children, those relationships have to be formed in a positive way. You have to be nice. You have to be grateful and you have to appreciate that, no matter which political party is in power, nobody in the health or education sector has an easy job. Everyone has ‘off’ days, everyone has to work with other teams and sometimes things that cannot be changed conspire against us. It’s still no reason to launch into a tirade of abuse about that particular person.
As I work my way around various Facebook “support” groups, I feel increasingly saddened by the number of posts that criticise and complain about various schools, teachers and medical professionals. I find it draining that it is suggested that these teams are deliberately refusing to help, support or communicate with us. Yes, there are varying levels of knowledge, yes, there are varying levels of funding and yes, there are some stories that seem to be utterly hideous – but are any of these professionals acting with malice? A deliberate attempt to make our children’s lives miserable?
It’s incredibly easy to forget the good bits, the progress made, the steps taken and the fact that our children are in school and supported. It’s also incredibly easy to take it all very, very personally as the mama tiger takes over – all we want is the best for our child. There are an awful lot of mama tigers out there and that means those who we work with are constantly juggling.
There are two sides to every story, I think sometimes as special needs parents we forget that – immersed in the complex, exhausting and overwhelming world that we live in. It is all too easy to only focus on the negatives, forgetting there are another 29 children in the class (how many others have needs you don’t know about?), 20 other patients overbooked into that particular clinic, it’s taken two hours to do a 20 minute journey or that someone has arrived at the surgery and let rip with a rage of drunken abuse over nothing in particular.
Opening your request with, “Thank you for…” or, “Xyz has gone really well and now can we….” or just “How can I help you make things easier for x in school…” can really change the way your relationships work with those professionals we rely on.
I have had far better responses to emails by starting them with “I understand that ….has happened, am sure there’s another side – will leave it with you” than going in and stating what I believe to be facts – only to find that one version of events doesn’t match the other and getting those people I am relying on annoyed and upset in the process.
There will be the point where mama tiger has to bare her teeth – but going into the situation growling first doesn’t necessarily help. Tears of utter frustration and exhaustion aren’t an everyday solution either, although I believe they have their place when there is no other option!
Finally, I genuinely don’t believe that ranting all over social media about how bad schools or medical professionals are helps. Yes, it can be cathartic but not positive. It is not going to bring about changes for the better and at worst can be utterly destructive. Social media does not ‘do’ tone of voice or ‘tongue in cheek’, it doesn’t offer the opportunity for a raised eyebrow or the other side of the story.
I could rant about missing notes, overdosing, underdosing and a complete lack of understanding but that wouldn’t tell you about the exemplary care, the compassion and the changes that have been made to accommodate the needs of my children.
Will posting about exemplary care make professionals complacent, or will they go home proud and wanting to make it even better? I would suggest that there are few professionals who won’t go home without even a slightly warm glow when they’ve been complimented on what they’ve done.
Will posting about the disasters engage more readers? Probably yes. Is this a good thing? Unless you’re the Daily Mail in which case it will be deemed an utter success, No.
In order to support each other we need to remember the good bits, because the more good bits we recognise, I suspect the more will follow.
* It's Rare Disease Day at the end of February. Why not Support their social media Thunderclap?