A reader recently asked me how I keep going in the face of the exhaustion and frustration of dealing with people who stand in the way of your child receiving adequate support and services. Her question had other facets to it too – ones that I will deal with in other posts – but for now I want to share my own views and tactics when dealing with an ignorant and indifferent bureaucracy.
Whether the people, organisations, or settings you are trying to deal with are teachers, IEPs, government service or funding providers or other people with the power to make it hard to get support, I find the following approach has served me quite well. I hope it may help others, or perhaps you could share what works for you.
First, knowledge. You need to empower yourself with both what you know and with the confidence that comes along with that knowledge. You need to know how the administration works: become familiar with the positions within the organisation, and the legislation that upholds it. You may find you quickly come to have a better understanding of how an organisation runs that the people who work as cogs within that machine – don’t assume that the front-line person you are dealing with is correct when they tell you something just can’t be done or a matter can’t be taken any further or appealed. So too, you need to know the hierarchy you are dealing with: Are you facing the ultimate decision-maker or can you appeal their decision, could you even request to have the difficult person swapped out by asking for someone else to be responsible for your child’s case.
Know your rights and what you and your child are entitled to. A good way to learn this when it’s not spelled out for you in documents you can access, is getting involved with other local parents who can tell you what their child receives – you may be surprised what one family can access simply because they have someone different working on their child’s case. The importance of networking in this way will come up again later in this post.
Feel free to give ignorant people information about the condition they don’t understand when that lack of understanding is affecting you getting the right care for your child. Give them pamphlets, books, send them links to articles, posts, whatever you think they need to know that they’re currently lacking. Send them invitations to local speakers and training sessions if you think that will help. The worst they can do is ignore the information, but even then they would have received the message that they are dealing with a passionate well-informed individual. At the best they may even read or go where you send them, and some of that ignorance might sloth off.
When it comes to actual meetings, I suggest preparing well in advance. Make notes of the key points you want to cover and of what you are after, be prepared to perhaps hand over the notes if they ask for them to record the information (in my experience they often do want the notes, so I’ve learnt to type them out instead of taking in hand-scrawled information). Appear confident and like you’re holding it together well (even when you’re neither) – give them the impression of someone who has the time and energy to fight for their child to the bitter end.
Be calm, assertive, polite, but unmovable when it comes to the important stuff – don’t let them think that just because a meeting has ended that everything is sorted until the next meeting. Expect them to take action, and make sure any actions that need to be done are actually assigned so at the next meeting people can’t say “oh I thought X was taking care of that.” Take notes during the meeting of anything said that is crucial – don’t trust the “official record” to be accurate (in my experience, it frequently isn’t and you wonder if the person who recorded the meeting was even in the same room).
And after these meetings, these phone calls, these interactions? When no one is watching, let yourself fall apart for the rest of the day in you need to (I often do). You’ll probably feel drained and not feel like doing much the rest of that day if it’s been a typical meeting where you’re fighting for your child, so give yourself permission to do nothing. Cry, shout, rock in the corner, see a movie, dance, talk to a friend – whatever it takes to just let those emotions go, because you’ve done your best and it’s OK to be human again now. It’s OK that you’re not superwoman (or superman), and that you’re not as confident and knowledgeable as you tried to appear to be. You’ll be OK, just give yourself permission to breathe.
And if it’s all gone to hell? If you tried everything, you’ve exhausted your appeals, or the legislation itself stands in the way of what your child needs? Then you lobby, you write, you protest, you work the system from the outside when working from the inside has failed you. You rock that damn boat til you get noticed. Remember that laws and funding decisions are only made by human beings just like you, they are not immovable, you are. Be a nuisance, make them want to make you go away by giving you and your child what you need. Be the squeaky wheel until they show up with the oil.
And on that road to change – a road that may not end with the change you need and want – network like crazy. Meet other people who have the same values and beliefs and needs as you do, you’ll be stronger for the support and in larger numbers. And learn, learn what’s wrong with the system and how it could be made better, look overseas for how other countries do it better, remind yourself that just because this is the way things are here and now doesn’t mean it has to stay that way. And by the end of your campaigning, if you get nowhere, you will still have made new friends and gained new valuable knowledge along the way – it is never for nothing.
You can take up the fight again another day if your energy disappears, it’s OK to not succeed in everything you do, especially when that everything includes trying to change people and to change the world. Don’t let yourself feel like a failure, don’t beat yourself up for not having enough energy or money or time to push it all the way yet. You know you did the best you could, and by not draining yourself to the point of a break-down, you will live to fight another day. Do not push yourself to burn-out, burn-out is very hard to come back from and can take years (if not decades) to recover from. Remind yourself that you need to stay mentally and physically and emotionally healthy for the sake of your child, because this is all for them, so it’s in that child’s best interests that you survive intact.
You are a survivor, you are a fighter, you are a parent who loves their child. And on the days you just can’t fight anymore, remind yourself you are only human too, and being human is OK. Breathe in, breathe out. Survive, and know this: you are not alone.