Intervener training from California DeafBlind Services

On Monday, I went to a workshop on what an intervener does, taught by California DeafBlind Services. They were kind enough to travel all the way up to my hometown to teach us what an intervener is and how an intervener works with a deafblind student. All of Queen Teen's education team was there, as well as another mom with a deafblind child (who is now 20 and in the middle of the transition process) and her team of therapists and social workers. Education teams from two other counties, Marin and Contra Costa, also came and I got to meet a mom who's child is 3 and just entering the school system. So between all of us, there were perspectives from a pre-schooler, a teenager, and an adult, which made for great dialogue.

The workshop focused on explaining what an intervener is and how she/he works within the IEP team, not on training us to be interveners, which is a huge job and would require hundreds of hours of training. In fact, two universities, Utah State University and East Carolina University have distance-ed programs to train interveners. California DeafBlind Services is part of a national movement to formalize intervener training in the US because right now training is limited and sporadic. As you can imagine, there are a lot of road-blocks and hoops to jump through to set up a new profession and a new training regimen, and they are still discussing the impact all of this formal training will have on school districts being able to afford an intervener at all (can you imagine a highly skilled, one-on-one aid with a degree in DeafBlind intervention working for $10.00? Me either). I'm excited by the prospect of formalized training and standards for interveners, though. Having trained and supported staff should help deafblind students reach their goals with more ease and create a more harmonious experience for everyone.

The range of duties an intervener is supposed to know and do is overwhelming. An intervener must:

• attend trainings on effective educational strategies for children who are deafblind.
• know the vision and hearing losses of the student, as well as the functional implications of both.
• be familiar with the student's likes and dislikes.
• establish a bond and develop a trusting relationship with the student.
• know and use the student's communication style/method/system (sign language. tactile, signals, cues, assistive devices...)
• be a bridge, not a barrier; model and demonstrate for others how to interact and communicate with the student.
• provide motivation for the student to participate in activities and routines.
• provide support for the student's use of the other senses to enhance learning.
• provide opportunities for repetition and practice.
• adjust the pace of instruction to the student's abilities.
• provide direct learning experiences that are functional and meaningful
• include student participation in all steps of activities.
• view what appears to be negative behavior as communicative and work with the team to understand and address the student's needs.
• participate in program planning with the teacher and the team.
• create instructional materials.
• collect data on student.
• assist in assessments.
• provide input to the IEP team.
• recognize that the supervising teacher has the ultimate responsibility for instruction and classroom management.
• understand the IEP and team goals and how to help achieve those goals.
• act as a bridge in facilitating and supporting teachers and related service providers.
• serve as a resource on issues related to deafblindness.

... and on and on the list goes. This is just a few of the duties of an intervener. By the time we read  and discussed this information, I was worried that we'd completely overwhelmed Queen Teen's intervener who was sitting across the aisle from me. I know I wouldn't want this job.

Wait a minute, I do have this job. I've been Queen Teen's interverner for the last four years, longer if you count when she was "just" blind.

By the end of the workshop I was no longer feeling overwhelmed though, because rather than scaring everyone into deciding intervention with deafblind children is too hard, the room was excited and talkative, sharing ideas and problem solving how to implement some of the things on this list. Queen Teen's O and M instructor came up with two ideas while talking to me over lunch.


At one point in the workshop, the idea of control came up, specifically how deafblind children often have very little sense of control in their lives. This made me think of Queen Teen and her current battle with me and her teachers over what she will and will not do. I  need to think of more ways Queen Teen can have the control over what happens to her, like when we all decided she didn't have to wear her glasses any more. What other decisions can I give her to decide for herself?

It was a great workshop. Thank you Mendocino County SELPA for hosting it, and a big thanks to everyone who attended.

A very important question

This morning while Queen Teen and I waited for her bus, she looked up at me and asked, "Are there enough grown-ups in the world?"

I waited a moment, thinking about what she said to make sure I understood. "Yes, there are."

She smiled. "Good. I was just making sure." Then she looked back out the front door to watch for the bus.

You know, sometimes I wonder the very same thing.

Vaccinations, sunshine withdrawals, and Laurie Berkner

"Rain, rain, rain! Why is it always raining?" Queen Teen shouts. She has said this every morning and several times throughout the day for a week. I can't really blame her. I love the rain but even for me this weather is a bit excessive. 7.25" in only three days, and it's still pouring. Occasionally it hails and the wind blows so hard from the south there has been rain-water pushed under my front door, making the entry damp and slippery. Queen Teen is a sunshine girl;she needs sunlight to make her smile. When it's gray and cold for more than a couple of days her spirit matches the weather: she gets gloomy.

And then to make the week extra fun, she got vaccinated.

We were finally able to get Queen Teen the H1N1 shot. She's been on the waiting list at the pediatrician's office for two months, and although there have been open clinics via the health department in our area, there was no way Queen Teen was going to stand in line for two hours waiting for a shot. Going to the doctor to get one and waiting 35 minutes was bad enough. She screamed and cried and hit. Luckily her dad came with us to help hold her down while I shoved up her sleeve, held her arm out to the frightened nurse, and said, "Now!"

I hate doing this but it's the only way to get her vaccinated, or her blood drawn. But I know every time we do this it just adds to her trauma and PTSD. I'm surprised she doesn't break into hives just at the word "doctor." By the time she's grown-up and able to make her own medical decisions, she's going to need daily therapy just to walk into a doctor's office for a check-up. That's why I only force this on her when it's really, really, really, really, really, really, really important. The H1N1 virus made this year's flu shot extra important.

Queen Teen was so upset she didn't even want to go to Starbucks. She wanted home: now! Then she hid in her room and rubbed her arm where she was injected. I keep trying to tell her that if she relaxes it won't hurt so much, but in the throes of panic she can't hear me. I gave her tylenol and juice and left her alone to sulk.

After a few minutes she came to find me. I supposed I was forgiven. She came into my room where I was surfing the internet and I suddenly had a brilliant idea.

"Come here, doll." I pulled her toward me and sat her on my lap, then clicked on Laurie Berkner's website. Together, Queen Teen and I watched a few of Laurie's webcasts. It was like the sun had broken through the rain clouds. Queen Teen was laughing and singing along to the songs. She grinned and then hugged me tight, and then we sang, "The Goodnight Song."

"I'm a little frog and my daddy loves me.
I'm a little frog and my mommy loves me.
And when they tuck me in to sleep at night,
they say Ribbet Ribbet Ribbet, good night.

Goodnight. Goodnight. Goodnight little froggy goodnight..."

No matter how bad things might get in Queen Teen's world, Laurie Berkner always makes her feel better.

The night I almost killed someone's child

It has been pouring rain here. Pouring isn't the right word; gushing rain is a better description. On Tuesday night I was driving back from an appointment in the middle of the storm. Visibility was terrible. Between the darkness, the heavy rain, and a jackass with his high-beams on I could hardly see the road. I slowed my speed to 15, squinting to see what was beyond my headlights while my wipers tried in vain to clear my windshield, when suddenly, a boy in a dark hoody and jeans ran across the road right in front of me!

I slammed on my brakes."Holy Sh**!" My van missed him by a couple of feet, but he just kept running, dashing toward the Aikido building, probably only thinking about getting to class and out of the rain. Did he even notice he almost got himself killed?

Oh my God, what if I'd been traveling faster? What if I didn't have new tires? What if he'd run into the street a few seconds later? What if I had hit him.

Then I got angry. It was a good thing he kept running or I might have gotten out of this car, grabbed him by the hair and screamed the fear of death into him. "You do not run into the street, you little sh**! I don't care if it's raining! What the hell are you doing out here anyway? Where the f*** are your parents?"

He was unhurt and now gone, so I drove home, shaking and cursing the idiocy of children. It took a good hour before I calmed down enough to stop visualizing that child lying in the street after I murdered him with my car.

Then I went into my daughter's room and hugged her tight. There's one blessing to her needing to use a walker to get around: she can't run into the street.

Everything I need

While cleaning and organizing my home I made a momentous discovery: I have everything I need. Not everything I want of course (a Wii and an IPhone are top of the list), but I actually do have everything I need. My winter boots are good, my rain coat keeps me dry, my car is running strong and my roof doesn't leak. My child has a cozy bedroom with a warm bed and plenty of toys. There's food in the pantry, a stack of books to read near my bed, and a lap top that allows me to stay creative. I have enough money in the bank right now (although lets forget for the moment that cash is a student loan), the bills are paid, and we can pay the mortgage for the next few months without worry. I have enough blue jeans and socks and two new, comfy sweaters that look good and keep me warm. There are enough forks and bowls and linens and plastic storage containers. My can opener works. My plants are healthy. I honestly can't think of one more thing that I need.

How often in our lives do we reach this point of equilibrium, when nothing is broken or worn out? It seems that I'm always fighting to keep something working, or trying to make do with what I already have. Sure, there's plenty that I want... a car made in this century would be nice, and I'm still longing to see Europe, or at least Burning Man. And I'd like another tattoo. But I don't need any of that. Not really.

And for the time being, my daughter has everything she needs at school. The new intervener is learning quickly and really seems to get what type of support Queen Teen needs. Her classroom teacher has found ways to adapt Queen Teen's curriculum so that QT is actually learning, not just doodling. Physical therapy is continuing and we got OT back. Her hearing aids are still a challenge, but we have an audiologist who is dedicated to finding the right kind of system for Queen Teen. The geneticist may not have a diagnosis, but he does have ideas to help stabilize QT's ataxia. My daughter has everything she needs right now, including counceling. The rest is up to her.

I think I'm content. It's an odd feeling. I've never felt this kind of security before and I'm not used to it. In the back of my mind are little voices saying things like, "that money in the bank will have to paid back someday, with interest." "Your car has a lot of miles on it. How long do you think it will keep going?" "You may have the mortgage now, but what about in a couple of months?" "Sure hope Queen Teen doesn't get sick."

Like I said, I'm not used to having everything I need. I grew up poor, so I'm used to wanting. My feet would hurt before my parents could afford new shoes. Today, I have over five pairs of shoes, all of them in decent shape, that fit me and feel good on my feet. My daughter has enough pairs of shoes as well. There isn't a think I need to buy today.

I'm going to sink into this contentment and try it out for a while, see if I can get used to it.

How to Help in Haiti

The blog, The Pursuit of Harpyness, posted links to lists of organizations who are accepting aid for Haiti. One of those lists is on MSNBC.


And the American Red Cross is raising funds right now for Haiti via cell phone charges. Here's the info from The US Dept of State's official blog: For those interested in helping immediately, simply text "HAITI" to "90999" and a donation of $10 will be given automatically to the Red Cross to help with relief efforts, charged to your cell phone bill.

We can't all go to Haiti to help, but we can send money to support those who can.

As you can see, I got my blog working again (thank you for the advice today). If only helping those in Haiti was so easy.

Dang! I messed up my blog

Hey everyone. I've been experimenting with blogger templates and trying to make my blog more "fancy," but instead all I've done is ruin what I had. I've lost all my favorites, the blogs and websites I love to read, plus my "friends" and "members," my photos and links, EVERYTHING. So if you wouldn't mind, please leave me a comment so I can find you again. Some of you I "follow," so that will help.

I did save my template before I started playing with the code, but when I tried to put it back it's all messed up. Sigh...

That's what I get for messing with something that looks "easy."

What templates do you like to use? I've seen a few of your sites that look really nice. Do you program yourself?

Getting ready for school - my dream

The bus will arrive at 7:00 am to carry my sleeping daughter to school, so at 6:30 I hit the snooze button on my alarm. When it goes off again at 6:45, I roll out of bed, walk down the hall and switch on her bedroom light. My daughter, slightly startled by the light, sits up in bed, blinks a few time, then pushes her covers off and jumps out of bed. She walks across her room to her closet where her clothes are waiting and steps inside. The closet doors close and suddenly happy music by Laurie Berkner begins to play. My daughter giggles as bright lights dance inside the closet where she is being cleaned, dressed, fed and combed by a gentle Kid Prepare machine. This machine fits neatly into any sized closet and does all the preparation automatically, including telling silly jokes to the child so the child emerges from the machine not only ready for school, but in a good mood. In less than five minutes Queen Teen is transformed from a grumpy, sleepy teenager to a neat and cheerful teenager eager to go to school. At 6:55 she is standing at the front door in her rain coat and boots, hearing aids in, and with her school bag ready. The bus arrives on time at 7:00 and by 7:05 she and her equipment are loaded. She waves cheerfully and I blow her a kiss as the bus drives away.

At 7:10 I go back to bed and sleep until 9:30. Hey, if you're gonna dream, dream big.

The Challenge of 2010: Don't Freak Out

I am an expert at panicking. Give me a headline that reads "Schwarzenegger to call for deep spending cuts", and I feel my heart rate jump. Then I hyperventilate when I read the article: The governor will call for $8 billion in aid from Washington. If the funds don't come through, he will propose the wholesale elimination of CalWorks, the state's main welfare program, as well as a program that provides in-home care to the elderly and disabled.

Last year, the California budget crisis was so bad it seemed like every single program to protect people with disabilities was being decimated. There were demonstrations and lawsuits to fight for the services that keep the elderly and disabled safely in their own homes, and with adequate medical care. School budgets were cut so badly thousands of teachers were laid off across the State. All of the supports my child needs to grow and thrive were threatened. By the end of the fiscal year I lost dental care, but she still had hearing aids, so I didn't mind. As long as she's cared for, who needs teeth?

Here we are again. It's a new year and the shouts of "fiscal crisis" are echoing through the State capitol, making every person with a disability and every person who loves them start preparing for battle. The weakest are already being thrown to the wolves. And from what I've been reading, it appears that the budget cuts are going to be even worse than last year's.

But I will not freak out. Last year I spent five months panicking, waiting for the ax to fall and the State to take my child's medical care away. What good did it do? The cuts came, we survived, and all I got for my efforts was an ulcer. Does freaking out really help anything?

I'm not saying we should bury our heads under our covers and just hope for the best. Far from it. Write letters, protest, shout and scream, but do not panic. Keep your head on straight, plan for the worst, and fight for the best.

Right....

We already know how terrible I am at keeping my head on straight. Just look how I reacted thinking about school. I was on the edge of a mental breakdown before the news started reporting on the California budget crisis. Now it's all I can do not to burst into tears and run around the house yelling "fire!"

That's what I did last year. This year, I won't give in. I am determined to control my fear. I haven't quite figured it out yet, but it seems the age-old mantra of one day at a time is a good place to start. I've been practicing mindfulness for several years now, so I understand it conceptually, and have even had some (brief) success at staying in the moment, especially around my daughter's disability. Focusing on today helps me focus on my child, rather than on her problems. Now it's time to take it to the next level.

The budget crisis frightens me because it feels like my child is under attack. She is a "burden on California," a burden the State can't afford anymore. So they want to cut her, and the thousands of people like her, in the hope that maybe she'll just go away and stop draining money from the rest of us. It infuriates me how easily the "weak" are tossed aside to fend for themselves while the "strong" circle their wagons to protect their own needs.

I'm sure the situation isn't that simplistic, but as the parent of a child with disabilities who depends on all those services they want to do away with, that's exactly how it feels.

I will not freak out this year. I will stay clear headed and informed. I will not give in to fear which only weakens me. I will navigate this year of hard work and uncertainty with clear purpose and calm. I am that strong.

At the very least, I will get through each day without screaming at the radio every time they interview that mutha-f... I mean our governer.

Or maybe doing that will make me feel better?

Nothing like a little Battlestar Galactica to make me forget my cold

As soon as I take a break, I get sick. Does that happen to anyone else? I can go on full speed for weeks, and then the moment I've accomplished all that work and tell myself it's okay to slow down and put up my feet, I catch a cold. When I was an actress, I remember performing for weeks, and then two days after the show would close I'd be bedridden with the flu. And I wasn't the only one; most of the cast would also be coughing up a lung. No, we weren't all snogging back stage. It seemed that as long as we stayed busy, our immune systems stayed strong, putting germs in deep storage until the day we slowed down and rested. Then, all those germs locked away were set free, our immune systems saying, "Now you have time to get sick."

It has to be a short period of activity, though. Long term stress will make me really sick, but short term stress appears to be good for my immune system. Have you experienced the same thing?

So instead of continuing the great New Year's purge, I'm watching classic Battlestar Galactica on Hulu, the 1978 version, which was my favorite show when I was 11. I was crazy about Captain Apollo, and I gotta admit, I still am. When other girls in the the 7th grade were hanging pictures of Leif Garrett and Scott Baio, my locker was covered with pictures of Richard Hatch.

I like the new Galactica (especially since Richard Hatch is in it), but the old, campy, late 70's version is still my favorite.