Some days I’m sick and tired of having to be a demanding parent. Just for once I want to get what we need without having to ask or argue.
The nature of special needs means that accommodations for our kids are never provided automatically. They have to be specifically requested, over and over, with endless proof and justification. The systems set up to provide for these needs are overwhelmed and overwhelming, which wears thin on the patience of both parents and providers until it feels like the world around us is just one big fat resounding NO.
Asking for help in this way doesn’t come easy to most of us. After all, the skills needed to fight for your kids’ rights don’t get handed to you with a diagnosis. Contrary to popular belief, parents of kids with disabilities aren’t tougher or more resilient than everyone else and we certainly don’t enjoy or need the conflict. In fact, a lot of the time we might just want to hide under the bed and not have to deal with any of it ever again.
As advocates for our kids we need to battle a system that often feels like it was designed to stop us from getting the things they need rather than provide us with help and support. This can understandably leave us feeling frustrated, bitter, impotent, resentful and exhausted. Meanwhile the people from whom we seek help are doing difficult jobs with little resources and excessive demand, all while dealing with a lot of frustrated, exhausted and emotionally spent parents.
They’re worried that you will be an angry parent, you’re worried that they will make you one. Everybody’s on the defensive, and that’s not a position from which you can successfully advocate.
So how can you put all that emotion to one side and become an advocate rather than an adversary? Here are some of the things that have worked for me.
Build a relationship
If possible, I try to make contact with the people who can help at times when I’m not asking for their help – volunteering in the classroom, attending conferences or open days, anything where we can make small talk and get to know each other as people rather than a case number or ‘the person who’s about to make my day harder’.
Defuse the threat
Right from the start I do whatever I can to be the kind of parent they want to work with and not one of the difficult people that they’ve had to deal with in the past. I make it clear that I’m asking for help not special treatment, and that I’m interested in working together to find solutions rather than blame. This includes keeping a close eye on my body language, like making a conscious effort not to sit with my arms defensively folded across my chest.
Keeping careful records is a really boring and time-consuming part of managing a disability, but it’s a key ingredient to staying in control. Before any meeting I make sure I’ve done enough research to know exactly what kind of help is available to us, and practice explaining what we need so that it’s clear. At the meeting I ask lots of questions and (try to) take copious notes.
Leave my attitude at the door
This is especially important for meetings I’ve been dreading all year, like IEPs. My frustration and anger might have been brewing for months, and by the time the meeting rolls around I’m really punchy. But knowing that it’s impossible to advocate when everyone’s defensive, I work hard to put those emotions aside and stay calm so that I can start the meeting with a clear slate. Sometimes that’s incredibly hard work, but the angrier I get the less rational I can be and the less likely I am to get a good outcome.
Make it about now
When I find myself getting angry, I take a moment to decide whether my reaction is to the current situation or scars from previous battles. The person sitting in front of me doesn’t represent every single request that has ever been denied. Likewise, this discussion probably isn’t about my kids’ entire future (even though it sure feels like it sometimes).
Choose my words carefully
I get much better results when I avoid trigger words like “angry” and “you must”, swapping them for things like “really disappointed” or “is it possible”.
Be persistent, not pushy
There’s a big difference between calmly, consistently asking for help and demanding it. Persistence is exhausting and calls for patience that can be hard to find (especially when our needs are urgent), but being pushy is a surefire way to grind everything to a halt.
Regroup when things go badly
I’d be lying if I said that these tips work for me all of the time. They don’t. Advocacy is a long, hard and often brutal road with more disappointment and frustration than success. But if I want to be a good advocate for my kids then I can’t allow the bad outcomes to fuel the anger and disillusionment that hurt my chances of getting them what they need.
So when things don’t work out I give myself a little time to freak out then focus on starting over, to take stock and figure out if there’s another path to take. Is there anything to learn from this experience? Were there things I could have done differently? How can I make sure this doesn’t happen again?
It’s almost never easy, but if it means that my kids might get the help they need then it’s worth the effort to learn how to advocate without anger. And when all else fails… well that’s what they make punching bags for, right?
About the Author
Bec Oakley is a special needs advocate, writer, blogger, and a parent of two boys with autism in Australia. Autism is part of what makes her and her kids who they are, so she’s passionate about helping people understand what it’s all about. Check out her excellent blog, Snagglebox.com.