Wednesday, April 20, 2011

Bite Your Tongue

When people are pregnant they take birthing classes of some sort and to adopt domestically you take adoption classes. This is all to prepare you as much as possible for your upcoming role. I get it that no class can teach everything there is to know about the upcoming journey in either of these situations. But you get a little more prepared, you find out how to get more information later if you need it, you hide under your covers at home and hyperventilate about what you learned in class and wonder why everyone else seems so freakin calm. 

What they need to offer people who have a child with a disability (or special need, or challenge or whatever you politically/philosophically wish to call it) are mediation classes. We need to learn how to become expert negotiators - how to be firm but calm, clear in our expectations but finding a way to make the people sitting across the table from think the whole thing is THEIR idea. We need to be skilled negotiators, special education lawyers, poker players, skilled salespeople. We need to be able to get the other party to "yes", all the while maintaining our dignity and the relationship - without the relationship with the other party(ies) we have very little hope (I'm stubborn, I will never say NO hope)

What no one tells is that even though it is our child we are discussing and everyone goes into meetings knowing that it is natural for us to be emotional and sensitive during these talks, the truth is we have to live up to an almost impossible expectation. Other people will be allowed to deliver their criticisms of us and our child, they will be allowed to give their opinion loud and clear, they will be allowed to get defensive and perhaps even mess up and be offensive. However. Us parents?? Don't even think about it.

Try not to cry - they will take it as a sign of weakness and dismiss you
Do not yell - they will stop listening to anything you say EVER
Do not personally attack - they will be affronted and everyone around them will close ranks and hold it against you
Do not state your opinions too strongly - they will all go on the defensive and that wall will be up faster than you can shut your mouth closed.

Apparently no one has told them not to do this to us, the parents. Apparently it is a free for all and if you complain you run the risk of just getting labelled as a trouble maker.

You hold yourself accountable, follow all the "rules", you remain calm in every instance and put your heart and soul into trying to make a very difficult situation work and still . . . .

They decide that you don't know what you are talking about, they dismiss you as "impossible to make happy" and they stoop to levels that are mindboggling.

But you hold your tongue and you calmly tell them that you are taken aback and deeply offended. You force them to finish having a civilized conversation while the person you brought to the meeting for emotional support writes everything down and yet they still keep saying reprehensible things. You don't just sit back and take it - you respond and ask questions but you do it in an eerily calm way. You leave the meeting shaking but in a way relieved they have showed their hand so clearly. You are thankful that even though they made the tactical error of taking off their gloves and fighting dirty that you had the presence of mind to keep yours on. You battled gallantly (and their blows certainly hurt) and hopefully one day they will look back and feel ashamed of themselves.

You know that you did what was necessary, that stooping to their level would not have helped. It would have done irreparable harm and would have taken years, if ever, to build back up to just the levels you were at before the meeting. Retaliation is not the answer. You did the right thing.

But man it sucks.

It is tiring being the only one in a room that has to hold themselves to such a high standard. Having to share and expose your family to "professional" after "professional" and most not even of your own choosing. It is horrible to know what your child needs but to be at the mercy of others to make it happen. It is horrible to know that you must strategize relentlessly about your child's life. I said a long time ago I don't want to fight.

Why can't we do things just because they are the right thing to do?????


  1. In addition to having a child who needs some accomodation, I am an education administrator. I learned a lot from a woman I know whose son is autistic. In fact, she was/is a master. For one thing, she is unfailingly positive and upbeat - full of positive acclamations and, of course, thanks for every little thing. FULL of information and print-outs and suggestions....but SO nice, SO supportive, SO grateful. When she comes to a meeting, she'll bring me a latte or a sweet role. She is ever-ready to send a thank you note, to praise you to others, to write letters of commendation to your superiors when you've "come through" for her.

    Even when you feel she is WAY out of line (she actually got me to plan a class specifically for her son - based on his needs - and try to recruit other students to be in it!) she is so energetically appreciative, encouraging and full of information that you just have to be brought along.

    On one hand I dread to see her coming, on the other I can't help but like her. She is amazing, and I have learned from her that complaints, negativity and "concern" are far less powerful than enthusiastic "ideas" and suggestions.... She's always ready to suppport me, too, and to volunteer. She is an amazing package. I'd like to be able to do as much for my daughter - it is just that, unlike her, I really don't know what needs to be done.

  2. Annie - thank you for your comment! What you are saying is very much the point I am trying to get accross. I am a mom who bakes for teachers and principals and Spec Ed people. I write letters of appreciation (and make sure that I do that at least 3 times as much as I write a letter that is not as positive - note I don't say letter of complaint). At EVERY single meeting I verbalize our appreciation of what everyone does for our son. I help at the school and fundraising activities where possible and we give gifts several times a year. Those are all genuine things, but they also take a great deal of time and energy.

    I have never once lost my cool and yelled or even become adversarial with the school. Everything I have done has been calm and collected and almost always with a smile.

    Is that what we want the bar to be??? Is that what it should take for parents to just be able to get the bare minimum of what their child needs??? It is exhausting and educators need to know that parents can be overwhelmingly appreciative of what they do in the class day in and day out and YET we might still have questions or concerns. And we need educators to also understand what we are going through at home.
    Good luck in advocating for your daughter.

  3. I recently attended a workshop on how to communicate with the school board, put on by a local school principal at a special education school. I was greatly bothered by the way this discourse is framed. It could have been retitled, "How To Make My Life Easier: A Guide to Never Calling Us Out On How This System Fails Your Child."

    My son starts Kindergarten in the fall. I've run the gamut of early intervention (with two children) now and really don't know if I can do it again with the school system.

    I thank. I appreciate. I make a point of looking people in the eye and connecting when there is a sincere and authentic reason to express gratitude. But I refuse to pander.

    It is enough to put my stomach in knots. Cos I don't bake! And I don't take kindly to operating under a power imbalance when the legal and financial reality does not match: my kids have a *right* to public education and the school will receive significant funding to accommodate them.

    So why do I still feel like I'm going to give myself a coronary with worry?

  4. A. - thank you for posting. I agree I hate to pander, I try not to but there have been times where I can see that the only way to get what my kid needs is to play to the ego of an educator. It hasn't happened often and usually we meet very well intentioned individuals and it is not hard to focus on their positive attributes.
    Funny thing is, the incidents that culminated in this post, didn't have anything to do with my son's school (for once).
    Its all a very intricate dance and I am not a dancer by nature. My feet are tired and I don't want to dance anymore. The fact that I know I have to keep dancing is, I think, what is frustrating me the most.

  5. Anonymous12:54 AM

    This tactic is not for everyone, but I decided to hire an advocate. Best decision I ever made. I got to sit back and be nice and let her do the dirty work. It preserved our relationship with the school district, and accomplished more than I possibly could have on my own.

    "this isn't me speaking, after all, it's this ferocious warrior. And how was I to know just how hard she would fight you? I mean aside from knowing she'd lost only 4 cases in 30 years..."