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Posts Tagged ‘special education’

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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Not too long ago I ran into an acquaintance. We were getting caught up on things and I told him how I had sold my business a year ago so that I could focus on my child’s needs full-time. “But doesn’t he go to school all day?” he asked. “What do you do all day?” he wanted to know. Resisting the urge to punch him in the nose, I put on my best smile and said, “Oh, you know, this and that. It’s a full-time job.” I knew he’d never get it, so I let it drop.

Last Thursday, September 29, 2011, I decided to keep track of my activities and tasks related to having a child with special needs. These are only the things related to the “special needs” part of our lives; I didn’t include the time I spent with my daughter, or grocery shopping, or dropping off a carload of stuff at Goodwill. I squeezed those things into the blank spaces between the stuff below. I think I was too busy to capture every single thing but in general here’s what made it onto the list:

6:30 Wake my son. Hand-over-hand assistance getting him dressed, bringing him to the bathroom, giving meds, bringing him downstairs for breakfast.

7:00 Eat breakfast, physically or verbally prompting him about every 30 seconds to sit down, use his spoon or napkin, take a bite, clear his plate, interspersed with a request to sit on the potty; assist hand-over-hand with brushing teeth, putting on shoes/coat/backpack.

7:40 Wait outside for school bus. After five minutes scramble to get husband to walk daughter to school, because she will be late.

8:00 Call School Transportation to find out why bus is late. “She’ll be there in five minutes.”

8:15 Bus arrives. Smile at bus driver and commiserate on traffic while wondering silently what I would have done if I’d had to get to work.

8:20-9:45 Desk time. As “case coordinator” for my son’s healthcare, services and schooling, the day begins with a perusal of a variety of list serves that help me stay aware of upcoming training opportunities, recreation programs, etc. Today prompts me to email my state senator and representative regarding an upcoming bill and hearing on special education legal issues. Then it’s on to Whack-a-Mole of calls and emails: Five emails and a phone call regarding finding a physiatrist, two calls to talk to a potential guest speaker at our city’s special ed parents meeting, send out an email to same group for an upcoming event, obligatory confirmation call for tomorrow’s endocrinologist appointment, phone call to geneticist office to request blood work orders be put through in time for tomorrow’s visit at hospital, email with son’s school for next week’s home visit.

11:30-12:45 Meeting at pediatrician’s practice. Because of my experience as a parent of a child with special healthcare needs, I’ve been invited to participate in a medical home transformation process. These meetings are weekly and also include a few overnight conferences over the next two and a half years. While I’m not really being compensated for this work, it feels important and meaningful.

2:00 Walk to pick up daughter, while making phone calls for delivery of diapers and shipment of specialty meds. While I am waiting for her to be dismissed, I read a few pages in a book written by other parents of children with special needs.

4:00 Son arrives home and luckily he has an amazing PCA who helps him for 90 minutes each afternoon so that I can get dinner ready and do laundry. This used to be the hardest part of the day.

5:30-5:45 Dinner, with same level of re-directing as at breakfast. Never as relaxing as I expect it to be.

5:45-8:30 Sitting on a stool next to my boy in the bathroom. He’s in a critical phase of potty training: he has figured out how to hold his pee, but not how to go. He has not peed since he woke up in the morning and is rocking and shaking because he needs to go badly. My husband and I take turns sitting with him until finally he declares that he is tired and we put him in a diaper and put him to bed. He asks to get up to go to the potty three more times with no luck, then pees so much within minutes of falling asleep that we have to change him and his bedding.

8:30 More laundry, then get my bag together for tomorrow’s developmental disability fellowship classes. Too tired to do more than toss some dishes into the dishwasher and veg out in front of the TV.

So there, that’s what I did all day. Despite the effort, the to-do list remains long–write a will, special needs financial planning, fill out dreaded re-authorization paperwork for supplemental health insurance, talk to husband about the implications of this new genetic testing; the list is always there.

I would like there to be a more inspiring or insightful closing paragraph for this post; it reads as whiny, self-righteous and needy. On some level, it is — I do find myself often wondering if anyone really understands how much work this is. I can’t even begin to address the issue of the privilege I have in being able to “stay home” to do these things. But there’s more to my life than this, yet alas the blogging time slot on today’s calendar is coming to a close and I don’t have enough time to figure out what exactly that is. Gotta go…I have too much to do today.

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Less than an hour ago, I stood on the sidewalk waving good-bye to my little guy as his bus pulled away from our curb. He’s on his way to his new out-of-district special education school. He started yesterday, settling in so easily as to almost hurt my feelings, but today was the first day of sending him off on the bus.

It’s been a busy and difficult couple of days watching him say good-bye to his beloved friends and teachers and getting him settled into this new place and a new routine. Coming back into the empty house, I rushed to my desk to catch up on the paperwork and emails that have collected as my mind and body have been elsewhere, buying flowers, filling out forms, meeting new therapists and new parents, worrying about how these changes were affect my child.

It’s been a busy year actually. As I mentioned in an earlier post, I’ve spent the last year exploring this whole topic of my son’s educational progress more closely, working together with an education consultant, a neuropsychologist and a lawyer, as well as our school district’s special education staff and my child’s school team. I’ve spent thousands of dollars and countless hours reading reports, meeting with the team, and learning what it really means to advocate – to see clearly what the situation is, to find out if more is needed, to educate the gatekeepers about what those needs are, and to wait gracefully while they catch up and while trusting the Universe that they will. To wait and trust, to wait and trust, and to wait and trust some more, while months go by with little progress, while being assured that “we must follow the process,” while the grooves of the neural pathways that are traveling to unproductive places in my son’s brain dig deeper and deeper.

This morning, after attacking the backlog for a few minutes, a wave came over me of what I can only assume is a feeling of relief. I say I assume that this is relief, because as feelings go, this one is has been a stranger. It’s presence in my body – the release of my clenched jaw, the easing of the tightness in my neck and shoulders, the deepening of my breath – is actually the first indication that it’s been lacking for so long. Like the drone of a cicada that goes unnoticed until it stops, I could hear this glorious silence in the house, in my entire body and most gratefully, in my mind. I sat absolutely still for several minutes.

So. Hello, Relief. It’s nice to see you again. How’ve you been?

I’m not foolish enough to think that with this single change everything has been fixed. “We’ve got a long way to go and a short time to get there,” Jerry Reed delightfully sang in my childhood. But mercifully, those thoughts are staying away for now while I enjoy the silence. For today – or at least for these few moments – peace abides.

P.S. In case you’ve never experienced the thrill, the chill and the shrill of the cicada, or if you just want to experience what my relief feels like, here’s a video.

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