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Posts Tagged ‘IEP’

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  — my nominee for patron saint of special needs parents.

When it comes to raising kids with special needs, there are a lot of gatekeepers who get to be on our “team”– insurance company reps, city officials, special ed departments, healthcare providers, state agency eligibility screeners.

Cultivating trusting relationships with these folks is essential to me; not just because I believe in the old adage about catching more flies with sugar than with vinegar, but because treating people with respect and compassion and humanity is important to my integrity. Confrontation is so draining. Besides, it’s a great opportunity to pay off some old bad karma!

Though from time to time an impasse occurs and it is tempting to lose my temper in anger or fear. Often what’s going through my mind is those situations are questions like: “How can they expect my child to make progress with so little?” or “How dare they tell me what’s best for my child?” or even “This person seems to like my child a lot and they have a lot of expertise, but why doesn’t what they’re proposing feel right to me?”

Blurting out these questions, especially in a tone of mistrust, anger or rage can damage these relationships. In my experience, even calm-headed, straight-out debating — trying to convince the person whose opinion differs from mine why their position is “wrong” — doesn’t often work either. They often shut down, get defensive, dig their heels in deeper. It’s useful in these situations to have a go-to strategy that keeps the conversation productive.

In their popular and helpful book Wrightslaw: From Emotions to Advocacy – The Special Education Survival Guide, authors and advocates Pam and Pete Wright propose what they call “The Columbo Strategy”:

“Tell the School Staff that you are confused. You want to ask a stupid question.”

Remember Columbo? With his trademark cigar and his hand to his forehead, he’d give his suspects plenty of rope with which to hang themselves in the form of one “stupid question” (usually when his hand was on the door and he was about to leave). Always friendly, never confrontational, he’d play the seeming fool before tripping them up in their own lies.

Employing the Columbo Strategy, you can sometimes bring the team around without having a head-on confrontation. Telling educators and other helpful people that you have a stupid question usually brings out their desire to help and mentor. I must admit I’ve used this technique successfully in meetings to illicit an increase in resources without having to ask for it directly.

The problem for me with this technique is that it feels duplicitous and can make people feel “handled.” The key is to keep a curious, neutral tone and to actively listen to their answer.

In Zen Buddhism, this state of openness and curiosity is referred to as Beginner’s Mind. In this space, one has no preconceived answers, only an eagerness to learn. While this might seem like a powerless posture to assume in a negotiation for something as important as your own child’s needs, it can be exactly the opposite. It doesn’t create defensiveness in others because it is at its heart an open, inclusive, team-oriented state.

Beginner’s Mind can reveal a lot of illogical holes in systems. Asking “why?” over and over again, when it leads to responses like “Because that’s the way we always do it,” or “Because we don’t have a budget to do any more,” is an extremely effective tool, especially when you simply let such answers hang in the air.

There are no guarantees of course. Each situation calls for its own approach, but having a sincere beginner’s mind is never a bad starting place, in my experience.

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INT. AT A BREAKFAST TABLE – MID-MORNING

The table is set for four although only two people sit at the table — an energetic seven-year-old DAUGHTER and a slightly groggy and disheveled woman, her MOTHER. At the two other place settings, a full but untouched bowl and a cup of obviously cold coffee sit opposite a rather messy, half-eaten dish of food.

Off-camera, a boy and a man are heard upstairs in the bathroom, where Week 8 of an Intensive Potty Training Siege is under way. Strains of Angry Birds and Thomas the Tank Engine spill down the stairs.

DAUGHTER

(With a maturity completely out of character, perhaps intending to distract her mother from the fact that she has covered her oatmeal in a vast quantity of brown sugar.)

So, Mother, what are you studying these days when you go to Children’s Hospital? (Takes more coconut flakes. And some raisins.) Like, are you studying to be a physical therapist, or an assistant doctor?

MOTHER

(voiceover, as she chews a bite excessively thoroughly)

Oh crap, oh crap, oh crap. Teachable moment approaching at 100 mph. Do I take it? WTF, why not. We saw the movie “A Dolphin’s Tale” this week and I think I did a good job teaching her about physical disabilities. I think I can handle taking this to the next level. Let’s do this!

(Aloud in a deceptively unaffected voice.)

Well, I’m actually studying kids who have something called developmental disabilities. Do you know what that is?

DAUGHTER

Oh, you’re studying Brother? Are you learning how to take care of him?

MOTHER

(Voiceover, completely freaking out but managing to act cool.)

What? How does she know? I’ve barely been able to refer to him as having a developmental disability to myself. I don’t even think I’ve ever used that term in front her her. Damn kids, they repeat everything. Shit, I have to stop cursing. OK, calm down. This is it! You’re going to have The Talk! Stay cool. What did the books say to do? Oh yeah, I never found those books.

 (aloud)

Well, actually, I’m studying in a class of people who are doctors and nurses and physical therapists and people like that who want to learn how to take care of kids like him. They’ve invited me to study with them because they want to hear what it’s like to be a parent of a kid with a developmental disability….They ask me about you, too. They want to know what it’s like for brothers and sisters of kids with developmental disabilities. Maybe you could come to class with me some day and they could talk to you. (Pause.) What would you tell them?

DAUGHTER

(Without hesitation)

That’s it’s hard to get my parents’ attention because they’re so busy with Brother.

 (She glances to get reassurance from her mom as she realizes that she might be saying something that’s not good.)

MOTHER

(Sips her coffee, nodding in agreement. Voiceover)

Oh crap, she noticed. OK, just acknowledge her reality, don’t try to fix it. Let her talk.

DAUGHTER

Because he needs a lot of help doing things, and he’s active and moves around a lot. And I help him, too.

(Though she has been speaking at a rapid clip, it’s clear she feels she has crossed a line and somehow betrayed her brother to the imaginary group she is talking to and begins to backpedal.)

I mean, he helps me and I help him. We teach each other stuff. I teach him things he needs to learn, like the alphabet and counting.

 MOTHER

What does he teach you?

 DAUGHTER

He teaches me that he’s been learning things at school. It makes me feel good to know that he’s learning things and growing.

(With a certain amount of surprised realization)

 Being a sister of a person with a developmental disability actually makes you feel pretty special.

MOTHER turns her head to hide her smile and watery eyes. She wants to cheer and hug her daughter; she realizes that the conversation went so well that if it was scripted it would seem fake. But she is acutely aware of the danger in praising her too much at this moment; she fears that she will condition her daughter to be self-sacrificing and ultimately resentful, which she desperately wants to avoid.

DAUGHTER too decides that that’s about all she can handle, and asks if she can have more coconut flakes on her oatmeal. Her day continues as if this conversation has never happened.

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