Dead Presidents

Queen Teen has been learning about presidents in school. This is what she told me.

"A long time ago, black kids and white kids couldn't go to the same school. They had to go to different schools. But George Washington made them go to the same school, and then they were friends."

She also told me she likes how there are faces of presidents on money.

Um, okay...

So here's the question: does she know what a president is? I think she gets the idea that a president is a leader, but does she understand that all those dead presidents she's been studying were actual living people who ruled our country a long time ago? Does she have a clue who our president is now, or where he lives, or what he does?

Her intervener at school has been struggling this whole school year with concepts around presidents, and I know she's as frustrated as I. Every time Queen Teen brings me her homework I groan.

Write one fact about President Harrison. 


Who? (okay, I admit I'm a little rusty on presidential history.)

I believe it's important for students to learn about our presidents and the decisions they made through history which impacted our country. History is important, and I wish Queen Teen could grasp that concept. But history to Queen Teen is what happened when she was little, or what happened when I was little. The past is amorphous and the long ago past meaningless. If that's the case, why spend so much time teaching her the name of a dead president?

Queen Teen can be as mysterious as history; you think you "get it", then you'll discover another gap in understanding. She'll rattle off random info about birds, or show you San Francisco on a map, but be unable to tell you anything about recycling, even though she's part of the recycling program at school. She won't remember what she did last week, but tell you in detail what happened the day she got the doll she named "Sara" ten years ago (when she was 6). Queen Teen is very smart, but getting information through the maze of deafness and blindness and mobility problems can make her seem dense. You can try pounding a subject into her brain for months, trying different techniques to help her understand, until you're both frustrated and finally give up. Then two months later, she'll spontaneously tell you all about what you were trying to teach her but swore she couldn't understand.

What should you teach her? And how?

What is the ultimate goal?

Everyone,  her teachers, therapists, aids and myself, struggle with those questions. And those questions have to be addressed within the framework of an educational program in high school with State standards that must be met. It can feel like an impossible task.

But as frustrated as we all get, it's only a third of how Queen Teen must feel. People keep shoving information at her and she's supposed to learn it, whether she "gets it" or not.

She hands me another sheet about another mysterious dead president. "I just don't get the point!" she yells.

"I know, Honey. Me either. But let's figure it out together."

Last Week of my Internship!!!!!!

Only 11 more hours of interning to fulfill the requirements for my certification and credential in Orientation and Mobility. 11 more hours...

... and I have the flu.

Yep, I'm in the home stretch and I have a fever, sore throat and runny nose. I ache and sneeze and wish I could sleep for the next 48 hours (at a minimum. more would probably be good).

Queen Teen came down with it last Sunday and missed an entire week of school. And of course it was the same week Rick started a big project for one of his computer clients which didn't go as smoothly as it should have. That meant I missed two days last week, but I was grateful for the time he squeezed in to stay home so I could get a few hours of work in. He was planning to go to MacWorld with me, but instead I went alone while he stayed home with our sick girl. By Saturday, Queen Teen was pretty much back to her smiling, cheerful, energetic self. By Saturday, I had a fever.

It always happens like this. She gets sick, I take care of her, then just as she starts to get better I catch it. Not as bad as she, but still sick. It would be a lot more convenient if we had it together, but I suppose catching it in stages means I don't have to get up to wipe her snotty nose when I feel like ass.

So tomorrow, which should be my last Fort Bragg trip with Laura where I teach my final cane lesson to my high school student, I'll stay home and watch movies until Queen Teen comes home from school. Then I'll PRAY that I'm well enough to go back to work on Tuesday. 11 more hours. That's all I need. Two more days and then I'm done!!!!!!

Everyone, send me strong healing energy. I must get healthy fast!!!!

First Day of High School

This morning, Queen Teen started High School. She was a little nervous yesterday, and very sleepy this morning (why does school start so frickin early?!), but by the time she was dressed and in the car, she was smiling. Driving her to school, I remembered her first day of preschool when she was a tiny three year old. I helped her out of the car and then walked with her to the group of preschoolers standing together in front of the school building with their parents and the teacher. She held my hand tightly, but grinned when she saw the other kids. Once all the kids were gathered, the teacher took Queen Teen's hand to help her walk (this was back when QT could walk on her own without a walker, but on uneven ground she needed a hand to keep her balance) and all of the children followed in a line, holding each other's hands. Most of them were crying and a few had refused to let go of their moms, but Queen Teen looked back at me, smiled, waved with her free hand, and said, "Bye Mom." Then she happily went to class with her teacher.

I went back to my car and burst into tears.

And now here we are, 12 years and 24 inches later, on the first day of High School. Dressed in a Tinker Bell t-shirt and light-blue skirt, Queen Teen looked confident. When we got to school, she grabbed the arms of her walker and walked to the front door, grinning when she recognized her aid from the 8th grade who had followed QT to 9th grade. I helped Queen Teen find her desk and explained to the aid why QT wasn't wearing her hearing aids (eczema is still a major problem). At last, it was time to go. Kneeling beside Queen Teen, I said, "Bye sweety. Have a good day at school."

She smiled at me and said, "Bye Mom."

And then I went back to my car and cried.

8th grade graduation: what's the big deal?

Today is Queen Teen's last day of Jr High. Tonight is graduation and a celebration here at the house with family and many of the people who have helped her get this far: teachers, therapists, advocates and friends. She has a new, pink and white polka dot dress (so pretty!) and a new white crochet bolero sweater. Family from far away have been sending cards, cash and good wishes. I'm cleaning the house and baking quiche for the party. Only one problem...

Queen Teen doesn't know what the hell is going on.

I've been trying to explain what "8th grade graduation" is for a month.

"Graduation is a ceremony where are all the kids who are in the 8th grade are honored for all their hard work. You get an award and all your family and friends will be there and we'll cheer."

She looked at me slack jawed and blinked.

"Um... we're going to have a party here at the house to celebrate all the hard work you've done. Then we'll go to the high school with the other 8th graders and you'll get your award."

Again, she stared at me, this time scrunching her eyebrows.

"It will be fun. You'll see. Your cousin is coming..."

She smiled at that.

"... and Nana and Uncle Chris and Aunt Margie and Grandpa Bear..."

She giggled.

"We'll all be there to cheer when you get your award for finishing Jr. High."

"Why?"

"Why will we be there?"

"Why do I get a award?"

"Because you worked very hard and are now ready to go to High School."

She sighed. "I don't understand anything."

I've tried this conversation several times. I've looked for books about graduation and found one with Clifford, but it didn't arrive in time. I've looked for movies, but didn't find any she would understand. The problem is that the concept of a graduation is completely foreign to her. We went to her cousin's 8th grade graduation two years ago but we had to leave early because she had a panic attack.

She really doesn't care about all this fuss. What Queen Teen wants is for her days to be normal again. Early release, assemblies, parties and field days at school are annoying. Why all the excitement? All the fuss and rushing around. Everything just needs to be "normal." Then she'll be happy.

Later this morning I'll meet Queen Teen and her O and M teacher, Laura, to check out the location of the graduation and figure out how to get Queen Teen on the platform to accept her certificate. Wheelchair or Walker? One of her classmates, a strong boy who has become a good friend, will help her. But as we're sorting out the details of where she will sit and how she will get her diploma, I'm beginning to have doubts about the whole thing. The ceremony takes place on the football field, just as her cousin's graduation did. Will Queen Teen have a panic attack like she did at her cousin's graduation? Will she be able to sit through the almost 2 hours of speeches and band performances?

Who is this graduation for? Queen Teen, or me?

If it was up to Queen Teen she'd skip the whole thing.

But I want her to experience what a graduation is and accept her certificate, be acknowledged for all her hard work, and soak up some of the accolades that she misses out on.

Again, is that for her, or me?

If it's for me, is that so bad?

Back to school for mom

I haven't been writing in my blog for a while, or checking in with any of my blog friends, because...

...school started.

Last Friday was my first day back to class, followed by a very hectic Saturday, during which we started our very first Low Vision functional vision assessment while wandering around West Portal in San Francisco. We jumped right back in to the "Saturday pace," trying to cram in too much knowledge in a single day, racing from one task to the next, not eating lunch until late in the afternoon and then leaving class after 4:30 with a spinning mind and exhausted body.

Yep, this is gonna be fun.

I love school... or more accurately, I love what I'm learning. But I have to admit I'm a bit overwhelmed by the volume of information I'm supposed to cram into my brain in only one semester. Today I did homework for over three hours and I'm only half way done. I have a paper due in three weeks and an assessment report due in two. I have to do two observations of Orientation and Mobility specialists in two different sites, plus I'm supposed to keep practicing and teaching the cane skills I learned last year.

Like I said, I love school. I love my teachers and my classmates and am so excited about my future in this profession. It is going to be great when I'm done!

When I'm done. For now, I'm just slogging through while trying not to lose my brain. I'm doing all of this while raising my depressed and ornery teen-aged daughter and publishing another book.

My press? After I finish this one book I'll be shutting down publishing for a while. I'll put my energy into marketing the books I've published, but I can't take on any more books for a while, for obvious reason. It bums me out, but I've chosen to go to school, therefore I need to devote my full attention to my classes, or at least the attention not directed at helping my child survive a bumpy adolescence.

Forgive me blog friends if I'm not leaving as many comments on your blogs or updating mine as regularly. School is going at full speed and I'm hanging on for dear life.

(I should explain the picture. On our last day of class last semester we created 3D models of our classroom. Teachers use 3D models to help explain mapping to children. The photo is a shot of the interior of our box, complete with little people, taken by a classmate (thanks, Jim!) Can you read what's written on the chalk board?)

The Good News... Queen Teen is back in school

The bad news... the alarm goes off at 5:30 am. So I've traded sleep for free-time.

Queen Teen was so excited about school starting she sang all day long on Sunday. Then on Monday she practically popped out of bed (I did the opposite. Dang I wish I still drank coffee). She wore the new dress she bought on our shopping trip to Santa Rosa and bright red leggings. Her bangs had been neatly trimmed by Nana and her black Mary Jane's were spotless. The bus arrived at 7:05 and once we sorted out a disagreement about the hat she was wearing (I voted for blue, she insisted on the green one she's been wearing all summer. She won), she happily hopped on board and with a grin waved goodbye.

I should have been allowed to go back to bed, or celebrate the fact I was finally getting a break after two months of 24/7 childcare, but nooooooooo. Remember when I had my interview with Social Security to prove Queen Teen still needed SSI? Well, on Friday I got a letter saying they were stopping her SSI payments, and in fact I OWED them money. SSI counted my school money as assets, so I got to spend my morning at Social Security straightening out a paperwork mess. Monday morning, I got dressed and drove to the Social Security Office where I handed the front desk person proof that I was in school and had received a student loan to do so. Now I wait to see how it all works out. I really hope they fix it soon because not only did she lose her financial benefits but she lost her medical care, too.

At 2:10 the bus brought Queen Teen home from school. She was tired, but smiled as she told me all about her new teacher (who I really like!) and the new students in her class. She was also excited about being an 8th grader this year, because "I'm a big kid so I can help the new kids 'cause I know where everything is."

At 8:00 pm she passed out and I was right behind her. Have I mentioned that I'm not a morning person?

I.E.P's make me Grump.I.E

Help! I'm trapped in IEP hell!

Recently, Queen Teen's teachers and I met for her annual IEP. For those who don't know what an IEP is, it is basically a contract between the school district and myself (the representative of Queen Teen) which spells out what services the school will provide to ensure that Queen Teen gets an appropriate and accessible education. The document should be clear, concise, and complete, with specific, future educational goals and assessments of her current functioning. All future planning should be based on those assessments and reports. Each specialist writes goals and reports and then the Special Education teacher puts them all together to create the IEP.

I sat at a table with 8 educational specialists (physical therapist, mobility specialist, teacher of the visually impaired, her Special Education teacher, to name a few). The "working" IEP was handed to me and I tried to quickly look it over (I prefer to get it the day before the IEP meeting so I have a chance to read it and make notes!), but while I was reading I heard from some of the specialists that there were missing pages and "mistakes." Great, I thought. It's going to be one of THOSE IEP's.

Queen Teen is very complicated. She has multiple disabilities, including deaf/blindness, and yet she is intelligent and capable of learning. She should be a braille reader but her hands tremble from ataxia too much for braille to be an option. Neither are audio books a good choice because of her deafness. So helping her become literate is incredibly difficult, and yet, somehow, she has managed to learn some sight words, memorized all of her books verbatim, and is learning sign language much faster than I. It takes imagination, cooperation, and collaboration to create an educational plan for her. And it also takes a lot of organization.

The IEP was a complete disorganized mess.

I'll spare you all the specifics and instead simply say that after two hours of fumbling and miscommunication, the meeting ended without me signing the IEP document. Two reports were missing (and still are missing), and I need more clarification on how the intervener works within Queen Teen's program. Supposedly those pieces are in the works, but I'm a little nervous because the last day of school is this Thursday.

Did you hear that, people? School ends on Thursday and Queen Teen doesn't have an IEP document. And I will not sign it if it isn't complete.

I am not an unreasonable parent. I understand we are in the middle of an economic mess in California and schools are on the brink of shutting down. I'm not asking for the impossible, or even the moon. I just want clarity and actual written reports that are based on assessments so that her future goals and the recommendations in the IEP are backed up by those assessments. Don't make decisions without written reports. Tell me what you want to do, why you want to do it, and how you'll do it. See, simple.

So if the IEP still doesn't answer those simple questions, I can't sign it. I don't know what will happen if she goes into the 8th grade without an official IEP.

I hope we don't find out.

Day Number Four of Jr. High

Today is Thursday, day number four of Jr. High, and so far, so... interesting.

First, WHY does school start at 7:30 am! Come on! Hasn't anyone read the study that showed Teenagers are sleep deprived and any classes before 10:00 am are a complete waste of time? Plus, I am NOT a morning person, so dragging myself out of bed before 6:00 am and slapping a pleasant smile on my face while getting my daughter ready for school is against my religion!

Second, Queen Teen loves her new teacher, Gayle, but isn't too pleased that she's supposed to go from class to class for different subjects with different teachers. To her, it is a stupid idea and a waste of her time. She wants her equipment (Intellikeys, CCTV, and computer) in ONE room, all set up at HER station, the way she WANTS, without all this moving around. I have to say I kind of agree with her, especially since I believe the way Jr High is run in the USA is diametrically opposed to the way children should be educated (don't get me started!). However, this is the way Jr High IS and we want Queen Teen to learn how to live in the world and cope with change. Therefore, she is required to spend three periods in other classrooms with the remaining four in the Resource room with her beloved Gayle. In time I believe Queen Teen will get the hang of it. If not, we'll adjust as needed.

Third, Queen Teen has decided there's no way in hell she's wearing her hearing aids, she don't care how much they're supposed to help her or what kind of bribes we offer, forget it, we ain't getting those things in her ears EVER AGAIN. This could be a problem.

Fourth, lucky for her, the hearing aids broke and are now on their way back to the audiologist for repair.

Fifth, at the last minute her school found a full-time aid for her, thank goodness! I really didn't want to have to start that battle.

Sixth, Queen Teen has to use her wheelchair more than she would like because the ground of her new school is so bumpy and uneven it isn't safe for her to use her walker much. This makes her very angry.

Seventh, she has a huge smile on her face when I pick her up from school and she tells me she loves it. Whew!