As you enter the Special Needs Jungle, you will come across many different types of people; the ones who will help, the ones who will hinder; the ones who make you smile, the ones who make you cry; the ones who inspire you and the ones who make you feel like giving up.
I have met some amazing people since entering the Jungle but I have also met some really nasty, soul-destroying, insecure, negative people who have made me cry, made me angry and made me wonder why I bother even getting out of bed on a morning.
As it's Learning Disability Week this week, let's raise awareness about the negative people we often encounter and look at ways you can learn to deal with them.
I call them "KNICKERs". What? Yes, that's right, KNICKERs! Why?
K is for KNOW IT ALLS. These are those lovely people who think it is fine to share their opinion with you, whether you ask for it or not. The ones who tell you that your child doesn't really have autism or your child could probably walk further if you just encouraged them. The people who tell you that your child's challenging behaviour is due to their diet and/or lack of discipline. They know all of this because they've read a book (Curious Incident), or watched a film (Rain Man) or perhaps they have read an article in a newspaper (and we all know which newspaper I am talking about)! These are the people who make you feel judged and leave you feeling definitely lacking in almost every department.
N is for NOT AS BAD AS. These people arrive in two forms. The One-Uppers. "Oh you think that's bad, it's Not as bad as......". The ones who tell you just how hard it is for them, the ones who tell you that their own issues are so much worse than your own. "At least you don't have to deal with....., be grateful."
Then we have the ones who tell you how hard it is for someone else. "I know you think this is hard, but do you know Joan? Lives down the road? Well, she has no sleep - ever, no husband, no family, kids are out of school, they're about to lose their home and they are at the hospital - every single day"
Do you know what? I know that there are many many families out there who have much more to deal with than we do but do you know what? When I am struggling with what is happening in my life, I just don't care! I really don't. Call me self-centred or call me surviving but sometimes what is happening in my life is enough to think about without having to feel guilty that others have more to deal with.
I is for INHALERs. These are the people who drain you, the people who demand your time and attention, the people who text you but only when they need help. These are the people who take your ideas and present them as their own. These are the people who also know how to make you feel like you owe them, time and time again. These are the people who walk behind you pushing you forward to do the work for them.
These are the people who are never there when you need help, advice or a shoulder to cry on.
C is for COMMISERATORs. These are the people who only know how to deal with you when you are in negative emotion mode. The people who say "oh I don't know how you do it", the ones who say "it must be so hard for you, you poor thing", "you shouldn't worry about your "weight/house keeping", you have enough on your plate - I'd "not eat/eat too much/not tidy up" too if I was in your shoes". These are the people who expect you to feel sorry for yourself, the ones who encourage you to wallow and instead of trying to help you move forward to a better place, allow you to stay in self-pity mode.
K is for KNOCKERs. These are the people who laugh when you try something new with your child - they tried it once and it didn't work, therefore it is a waste of time; the people who belittle your feelings; the people who believe that claiming benefits is just for scroungers; the people who like to see you get knocked down a peg or two and the ones who actively knock you down. These are the people who would rather you fail so they can say "I told you so".
E is for EMBARRASSED. These are the people who are embarrassed when your child has a melt down in public, the ones who are embarrassed when they hear you tell a doctor he's wrong, the ones who would rather your child didn't wear the "Autism" t-shirt because it draws attention to them (because obviously they don't draw attention otherwise), the ones who cringe when your 10 year old son waltzes out of the bathroom with his trousers off.
R is for RECKLESS. These are the people who encourage you to battle constantly and I don't mean fighting for your rights, I mean the ones who actively promote you being angry and/or abusive. The people who make you feel bad if you don't have absolutely every single thing your child is entitled to, whether they need it or not. The people who advise you to pretend a room in your home is just for therapy so you can claim council tax discounts, the people who encourage you to act recklessly and sometime fraudulently. We all have to fight for our children, sadly, but walking into a meeting in angry and argumentative mode won't always get you better results. We had to wait over a year for CAMHS to see one of my children and believe me, I was beyond furious. However, I needed the relationship between CAMHS and our family to be a productive one, so I had to leave my anger and frustration at the door when we were eventually seen and we have reaped the benefits.
So there you have them, the KNICKERs, in all their glory. How many do you recognise? How do you deal with these people?
How do I deal with KNICKERs?
Firstly, I have to accept that I have no control over these people and the way they act. I can however, control how I react or respond to them.
I have gone through a variety of responses - anger, impatience, shock, horror, disbelief, pity and even amusement. I find my reaction changes depending on where I am emotionally.
If I am having a good day, if I have had more than 4 hours sleep or maybe I've just been given access to a new service, then I am calm and recognise them for who and what they are.
If they get me on a bad day, if I've had no sleep or just been refused access to a service because we don't tick the relevant boxes, I now have a voice in my head shouting "Knickers, Knickers and Knickers" and as I walk away from a negative comment, an "I told you so", a "sorry but I'm too busy" or a "did you really have to say that", I raise my head high and think "well, Knickers to you". Not the most mature response but it works for me.
What works for you? Feel free to use my mature approach if it helps you.
P.S. I have just realised that I have managed to talk about "Knickers and Knockers" in one post - my children (and my "raised with TV shows from the 70's" alter-ego) would find this very amusing.