Sunday, June 12, 2016

Stop talking down to me

One of the things I find the very most frustrating as a parent of a child with special needs is the way professionals talk down to me. It's bothered me since the very first thing I had to take Finleigh to as an infant, but has begun to irk me more and more the longer I'm in the system and understand how things work.

Now, don't get me wrong. The vast majority of people that I work with for Finleigh are wonderful. And do you notice I said "work with"? Yes. Work with. They help us out, they provide services that they are paid for. But I'm working too, albeit unpaid. That aside, my point is that they are wonderful. They are like friends. They treat me like their equal, something I appreciate a great deal.

But often when I start working with new people, they get this certain tone in their voice. It's a slightly slower pace, where vowels are drawn out slightly, and I'm being talked to like I'm a child. A stupid child. I don't believe these people are trying to be condescending, but they are. As if they assume that, just because I have a child that didn't develop normally, I didn't develop normally?

They sit there and explain things to me that I already know. My kid is 9 after all. And they say it slowly to make sure I understand. And then proceed to explain to me how Finleigh must be feeling or why she's acting the way she is. As if I don't know. And you know what? They're almost always wrong. Their textbook answers don't fit Finleigh. Their textbook answers are not answers, but pieces of information that are accepted as general wisdom. Which is general and doesn't always work. So I smile and nod and if they're around long enough they change their tune, every single time. If they would just listen first to what I have to say... and I mean really listen... before going off into their little spiel, they would save us both a great deal of time. And save me from becoming a little rude.

I bring this up now because since I've been away from home during our evacuation, I've run into this two times (once in person, once on the phone). I've sought out help twice since we've been away and twice I've been talked to like I'm a child. A slow child who, despite having raised my daughter for nine years, doesn't understand how the system works or how she works.

But I do understand how the system works. I know many people who work in the system - inside and outside of my relationship with Finleigh - and have had many discussion about things. I understand the divisions and the hierarchy and largely how money is divided. I understand how SMS works and that it sucks and is inconsistent and hard to stay on top of. I understand that for my emotional and relational health, I need a break sometimes from cleaning up pee and being stuck in my house and dealing with meltdowns. And I dare anyone who talks to me in this way to step into my shoes for a few days.

So now, we are looking at three more weeks without respite. And while Brian and I are both home and can tag team and cut the work in half, we are both going crazy. Every time we try to go out as a family, we end up turning back. She does ok one on one, but we'd dearly love to spend some time as a family or as a couple. Watch a movie without having to pause it 12 times? Read a book without having to stop to clean up a mess? It doesn't seem possible these days with SMS. I could call the Calgary government system and likely be passed around from condescending person to condescending person. And then we'd have to put Finleigh in the hands of yet another stranger, who will likely be awesome, but it gets old after awhile and makes me feel selfish. So at this point I think we'll forgo the government funding that is in our contract (except it's not because staffing issues have put the department months and months behind and so we actually don't have a contract right now) and deal.

It's beautiful here. The mountains and the trees take my breath away. We're in a house that is beautiful (a blessing and a curse). These things help. But they don't erase the yelling and the crying and the chaos.

But I've gone off topic.

Please. Please, please, PLEASE. If you work with special needs families, don't talk down to us. We're not stupid and, in fact, it's possible we know more about certain subjects than you because this is our life and we spend hours upon hours researching how to make our lives and the lives of our children liveable.

So really... from this tired mom... who might just explode one day... please...

Stop talking down to me.

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