Friday, July 29, 2011

You know those puzzles in a plastic frame you find in goody bags?

We spent Thursday morning together at the Albany Art Museum. Alex went to a mosaic class and Kath and I roamed the museum. Since we were there for Alex's class, an hour before the museum opened, we sat and read books in the closed gift store's outer chairs first. One would think that it would be like a cemetery in a big old museum before the people come, but it's really an energy filled place. But that may have been partially due to my company.

Once we were permitted to roam we scanned some rooms of newer art. Kath surprised me with her perspective. In front of some pieces she stepped away and said, "I don't like that one." I said, "Why not?" "It's broken." And sure enough the picture showed some sad component of life. Hmmm.... Later on that night she plopped down on the couch and said, "When I growed up, I'm gonna be an artist."

How great is it that she sees so many options in her future? (After a class at the science museum she said she wanted to be a science teacher in a museum.) How many 4 year-olds even think of that? How many 40 year olds do?

We saw the sculptures, one of her favorite exhibits. Then the Egyptian section. She. Did. Not. Like. That. Room. She made me hold her as she peered at the two mummies as if she expected them to sit up at any moment.

A snack on the grass in front of the buildings watching Albany traffic pass us by, restored her good humor. Double Stuff Oreos are magic.

Alex made a beautiful tiled mosaic picture (I'll upload a picture). She loves art. She loves making and doing anything creative. Her art teacher at school calls her Georgia (as in Georgia O'Keefe).

On the way back home, so big bro Nick could watch the girls while I ran to the pediatric neurological psychologist for Kath's results, I snapped at Kath. I've been so patient, not that I haven't tried to move her along at times, or that I've allowed her to walk all over me, just that I haven't snapped with impatience/anger. I've been able to slow down this summer and really follow her thinking, if that makes sense, so that I can anticipate issues and try to provide her with some balance and tools so she can better figure out this world and its rapid changes. Not this time. She looked at me as if I betrayed her and she wailed. Not the cry of someone who got caught doing something wrong, not the cry of someone thinking, "Oh, yeah! Make me miserable, I'll make you miserable (and deaf)." No, this was a look and a cry of, "I thought you 'got me' but you're just like the rest." During this past school year there was lots of that, with me going back to teaching full time and her entering preschool, but this summer we've really been able to figure out our rhythm, for the most part. And I believe that has made a huge difference in how far she has come this summer, she's been a sponge.

It broke my heart and stayed with me the rest of the day. But I had to get her home and run back out to the appointment 45 minutes away.

The appointment. According to the doctor her play is the play of someone a year younger than she is, especially because of her cooperative play, he says she doesn't do that. I'm not real sure how that is gauged, perhaps from a school report. However, when Kath is home and playing with her sister the two of them reenact books they've read, movies they've seen and many times they just make up stories. Kath does usually follow Alex's lead, but Alex is the big sister. Although Kath is not the kind to just go along if she doesn't want to (as anyone who has read any of my FB statuses knows!).

She was tested as knowing 6 letters from the alphabet. She of course knows more than that now when they are in order, but since she's been home for the summer she has been sponging all things ABC. We restarted our ABC movie nights. We choose a movie that begins with the letter we are covering that week, then we have food that also starts with that letter. I point out the letter where ever we see it in the real world as well as books we read. Today we watched "Beauty and the Beast" and ate burritos, blueberries, black bean salad, rapsBerries, blueberry juice, bananas. Since another aspect the doctor told us would be difficult for her is her connecting the sound to the letter, we started to work on that this week, too. (B says bbbb)

A few other highlights from my appointment were that there was a huge discrepancy in how the school and in how we scored Kath for her executive brain functions in regards to how she handles transitions/shifting. We both ranked Kath as normal range for inhibition and emotional control, and in the danger zone for working memory and organization/planning, but her school ranked her normal also for transitions.

These scores are not based one question, but a survey of questions (I think there were over 100 questions) that are then scored and ranked to provide the range for each area.

Anyone who has spent an hour with Kath, especially when she has to work at something, knows that she doesn't transition easily/normally. That's actually a huge deal in her learning process. And I find it very concerning that her school would not have remarked that transitions were so tough for her. Although it does help me to understand her level of frustration in regards to school itself the past few months and maybe they just thought she was not behaving.

The doctor and I spent time talking about how lucky we are that Kath is female since girls have a stronger ability to use both sides of their brains even after the stroke impairs one side, unlike boys who are usually more one-sided. Then we had huge important conversations about reading readiness and how, because of where the stroke hit in her brain, she will have to be handled differently with her reading process.

Many of you know (or will) how important reading is for the success of a student in school and then of course in many aspects of critical thinking and life (and how it starts waaaay before the actual reading begins). Kath also has vision issues which can hamper her ability to see and handle reading as well. And yes, I have hopes that my Kath will far exceed the prognosis she got at Boston Children's (where we went for a second opinion) when we were told she might not ever graduate and will have heavy Individual Education Programs for her whole school experience. I am however, expecting she will live a full and complete life, have a career and a family, travel (and take me with her!), write, read, and do whatever she would like.

So. I haven't written because it was exhausting to once again process all and then try to figure out what to do with the information.

I calmly absorbed the information in the office. Like I said, no big surprises other then that the doctor acknowledged that I know my daughter. He said usually the school gets it more right in regard to how the child 'works.' But he acknowledged that I seem to be more on target with who she is and I'm very in-tuned with her.

But once in the car those nervous tears began. "What am I going to do to make sure that Kath gets all that she needs from her schooling when during her first year in, I feel like she didn't? And her evaluation from them also seemed to show some misunderstanding of who she is." (There was another part of the evaluation where the school report was pretty much a polar opposite to what I thought in regards to her attention level. The doctor said sometimes teachers score that side down so doctors won't prescribe meds...really!?) We got a report from the school before the end of the year that the staff didn't know how to deal with Kath when she got frustrated. That disheartened me when I consider that she was in a really small class and she should have been able to find a solid footing of success there. Especially since she was in a special education school. What will happen in a public school?

(I'm not trying to bash her teacher or her school. As a teacher I know full well how overwhelming teaching is. I believe they did the best they could with what they understood about Kath. I'm now worried about Kath going into school at a time when so many education cuts have drastically reduced programs for all students and have overextended teachers to the a dangerous point.)

Then I had a sudden thought. I had brought up with the doctor when he was discussing how she would need a program like Reading Recovery that I had my Master's degree in Reading.

But what I suddenly thought about Master's in Reading certifies me to teach Kindergarten through 12th grade, which is in one of the most important and fundamental areas my daughter is going to need help with. I could teach other people's children in any grade K thru 12, why not mine? And after seeing the special ed teacher's appraisal, maybe I wouldn't be such a bad option afterall. I know her. I know teaching. I know her.

When I chose my Master's Degree I didn't really know what to choose. It was more of a fluke. Sure, I enjoyed reading. Sure, I wanted to be the least expendable crew member by being able to teach all grades...and when I first began my education I DID want to be an elementary teacher...until I actually taught the upper grades and fell in love with that. So now all of this has me wondering if everything has been gearing me towards this.

Whatever 'this' is.

When my boys were younger I wanted to homeschool them. I was talked out of it and I am a bit glad I didn't because I know so much more now. Every year we have considered it with Alex. And now here I am again. Although with Kath it would be so much more intense, what to do with the therapies?

I believe I am on the cusp of so many huge changes, I just feel it, but I feel like I'm one of those puzzles you find in a child's goody bag, where you have to shift the pieces around in the plastic frame to make the picture. I keep getting closer to what I want/to figuring out the Big Picture, but then a piece will be out of place and I will have to readjust and redo a huge chunk of the puzzle, then I get close again....

So, only time will tell what 'this' is. What the Big Picture is. I suppose the only way I could realistically trade in my classroom keys for my house keyed classroom is if somehow money was not an issue.

Like I said, things feel close to pulling together. Wouldn't it be great if this blog morphed yet again into a blog about a writer on the cusp of publishing her first YA book and homeschooling her stroke survivor daughter? :) The opportunities are there. I just need that door to open a little wider so I can get my butt in. :)

Wednesday, July 27, 2011

Kath teaches me. Again. I wish there was a section for this on her neuro psych eval!!

I write this knowing I probably won't publish this until I know the outcome of her testing tomorrow.

Tomorrow I go to the neuro pysch and hear what his evaluation is of how Kath learns. I know from past experiences and from how she did on the test while I sat there, that she won't score well. But I also know that she knows MUCH more than she ever shows at these tests.

She is asked to do many tasks she does every single day...repeat back words, phrases, sentences. When she and Alex play together, Alex will feed her lines. Kath will recite entire sentences. But when asked to repeat in a testing situation "Sleep well" she turns her head to the side and ducks under my arm as if her brain can't handle it.

When she is asked to look at pictures and decide relationships and connections, she again turns away and acts as though she doesn't know what a relationship is.

When asked what objects in a picture are, she crosses her arms, looks away and hides her eyes.

All of this appears to be signs of a girl with very short term memory who cannot recall words, doesn't understand relationships, and so on. Yet this very same girl recites lines from her sister; looks at art work in the gallery and tells me the 'story behind the picture' from clues some adults don't notice; when we visit people's houses she remembers what we ate or some other obscure thing from months ago; or a day or so later she'll ask me a question of understanding the motivation of a character in a movie she saw ('why did that mommy try to sink her daughter?'...from the movie "10th Kingdom." It's not as bad as this sounds.). I love that although she has no idea the word 'drown' exists, she found a word and made it work for understanding. Pretty cool, huh?

Kath learns differently. I used to say the world just needs to slow down so Kath can catch up, but sometimes I think we should all slow down because Kath notices things the rest of us are missing.

This girl with a vision issue, a possible field cut, will see a dandelion, or a wild blue flower (no idea what it is called) and just need to go capture it, show me, pick it. She will stop us in our tracks during a walk through a parking lot to pick up a rock we bypassed and show us its amazing inner beauty.

The girl with CP and a lack of fine motor control will grip the pencil in a most awkward position (believe me I try to make her more comfortable with the 'correct' grip, but now I wonder if I should just shut up and leave her alone) and she will draw pictures that when anyone looks at them, look like an absolute mess of scribbles. But if you request a walk through that picture you see so much thought, originality and feeling. AND if you pick up that picture a week later and ask her to explain it again...she will say the same thing. Because it IS what she said it is. She's not just scribbling.

This girl with CP also loves to dance. When she dances her whole body lights up and smiles. She giggles that joyful laugh of someone absolutely filled with love and joy of what she's doing. She is in love with what her body can do. And her body doesn't even listen to her brain half the time.

This girl has speech issues, but if you could hear the songs she makes up! They vary from beautiful ballads to the worst bathroom humor thrown into a melody. Oy.

My girl's eyes light with impish delight and bold creativity and thirsty intellect. But whenever she takes these tests, or must 'perform' on demand, in a school setting especially, she folds her arms, pulls her heart and soul into her turtle shell and refuses to dance.

This is why I say the world should not judge others who learn differently and tag them as "disabled" or "slow." The world may look at my daughter's skills and think they know her abilities and her limits, they may think her scores say or justify them saying, "Oh, she is special ed and needs to learn more slowly. She needs...."

Yes, my daughter learns differently. Somethings fast. Somethings slow. Just like most children do. But she has shown me that learning is definitely not linear. Kath learns by doing, redoing. Discussing, reading, thinking, acting it out. Sometimes repeating all over again. (I learn best that way too, hmmm, I wonder how many of us do.)

She works harder than many of us ever have to. She knows the world spins the same for the rest of us, but for her a bit faster because she so often falls down (and we don't), so she has to fight that gravity pull every day. She knows the world deals with letters and numbers so she's pushing to get that darn E and F and M and N and V, and W figured out.

But Kath walked into IHOP today and handed the waitress who greeted us with a huge smiley welcome, one of her special shells from her beach trip last week. She did this just because that lady was nice to us. She draws pictures (remember they look like scribbles to most others) and gives them to people she meets who seem nice. (I think she has a stack in the back of the van somewhere and she pulls them out when needed.) She will give people change (she has stolen from me) and she hands it to the next nice person. She will pick a flower, love it (sometimes cut it from my garden...ugh), then hand the dried up wilted thing to the next person she sees and likes.

I have no idea whether or not people really understand the gift she is bestowing. Most of them are so nice and thrilled looking, they must have an inkling.

But this behavior, this type of 'knowledge' of how to be kind, how to treat others, is never tested on these evaluations and these acts show me more about what type of person Kath is, what her cognitive abilities are, than the hours and hours of testing she has gone through to evaluate her cognitive abilities.

So, thank you for reading this post because by writing this out tonight I went from thinking I needed another bowl of stress ice cream as I worried about her results tomorrow to being okay with the Kath who IS NOW and who IS GROWING and learning everyday. (And I will leave my starting sentence as a testimony to how differently I thought this writing entry was going to be.)

Wow, writing again saved my sanity. Although maybe I deserve that bowl of ice cream anyway....

Tuesday, July 26, 2011

What is it about writing, anyway?

When I first started this blog, and so aptly named it 'Attempts at Clarity,' I was trying to document my writing life. It was to be a blog about how I made writing my centre, how I was about to finish my Young Adult story that had been floating in and between my fingers for the previous two years, and well, it was also to be a bit of a sanity break.

I didn't envision it to be useful to anyone other than me. It would force me to be honest and to write. The end.

After that brave announcement I didn't write again for two months. Kath was diagnosed with having survived her massive stroke and the blog morphed into talking about what was going on with my family, especially Kath. I found reading a blog by another mom to be useful so I had a new mission, to perhaps be another mom's 'voice in the dark.'

Over time I sometimes bounced in and out of actually listening to myself and the power of writing and I wrote...the name of this blog came true.

I write to try to clarify what I am living. Sometimes when I live and breathe I feel like I am muddling through the dark murky underwater of an alternative life. I peek up through it and see other people living 'normal lives' and I wonder who I may have killed in a previous life (like I'm living down a past life penance) that makes it seem I ALWAYS have so much going on.

I write to tell the story that is so clear in my mind sometimes that it's like a memory. That is a bit spooky when I go to relay an event/story and realize it's really one I created... :)

I write to remember because my memory seems to be suffering from some kind of ...what was I saying?

I write because if I don't I feel like I am not living. That may sounds weird to some of you, but when I write...I'm calmer, I understand more, I see more. That's probably the same for anyone who has a secret/or-not-so secret passion involving creativity (maybe just any kind of hobby).

My attempts at clarity are my reaching out to the 'normal world' and saying, "Hey, is there room for me?" And sometimes there are voices I hear and sometimes I hear nothing back.

Lately the voices (at least the ones in my head) have been clamoring to be heard (and read). They are tired of being silenced and placed on the 'After I Do Suchandsuch I Will Write' burner in my life. Lately I can almost taste this other life that I feel I need to grab onto...My Writing Life...with the feeling of 'the rest will be taken care of if I trust myself and the plan.' But I still also feel the pull of living in the 'normal world' and having a normal life/career/obligations/pension, so I get scared and go back to playing my part.

But this month I challenged myself to writing 50,000 words. I wanted to see if I really did have a Young Adult novel in me. I'm only a little past half way there with less than a few days of July to go, but I have written the beginning of a pretty decent story (if I do say so myself!). And I have found faith in myself. I will reach at least 50,000 by the end of the summer, but now I KNOW I've got 'it', so arbitrary lines in the sand are not as important to me at this point.

I wrote by hand this month, I carried a blue composition notebook with me everywhere. I wrote just about every day. I even wrote with a pencil (I love my pens), but I learned the differences of pencils--the ones made with REAL wood write much better! :) If I had 10 minutes, I wrote. This, in between visits to NYC, Long Island, the Science Museum, the Art Museum, doctor appointments, graduation parties, and the day to day summer world. Writing by hand somehow allowed my brain the ability to slow the white noise of the outside world and listen to that voice that keeps telling me to WRITE, to have faith in myself, and in my story.

And while doing this, listening to the voices in my head...guess what? I found I am seeing things with clarity. See? Writing works! It helps you make sense of your world, the real one and even the imaginary ones you create.

Join me for the second half of the summer. Pull up a notebook and a pencil. It doesn't have to be a Young Adult novel or a bestseller. It just has to be you writing for clarity, clarity for yourself. And be sure to let me know know how it goes! (What do you have to lose?)

Happy writing!

Tuesday, July 19, 2011

A Quilt of Faith...looong.

I love how different parts of our lives converge and either show us we are on the right path...or we need readjusting, if you believe that sort of thing. When the girls and I visited my son Chris in NYC he told me that I had the craziest idea of religion he had ever seen.

I took that as a compliment.

I've reached this point in my life where I take a lot of different pieces of a lot of different pieces of life and pull them together to make sense for me. Chris noticed I believe in some Catholicism, Law of Attraction, and kidded me about loving tarot cards.

Pretty observant, though he did forget I believe in manifesting and healing touch, too. :)

Since Nick's head trauma and Kath's diagnosis I have gone through many different ways of trying to deal with what life throws at me. When Nick ran into the wall during gym class 5 years ago he had: two seizures; he broke his first right rib; chipped his sternum; broke his left clavicle; punctured his left lung; bled blood and spinal fluid from his ear; and broke irreparable bones in his ear (constant ringing), but we were so relieved he wasn't paralyzed. However, this past year he has been diagnosed with post-concussive syndrome, which brings another whole bag of worms to his 22 year-old table.

Then came Kath's stroke diagnosis. Cerebral palsy. Mirror damage on both sides of her brain. Speech delayed. Vision impaired. Cognitive delays. Tons of therapies, specialists and remapping of our lives.

A week after Kath's diagnosis, Roger flipped his car during a snow storm and ended up with 6 staples in his head, and a totaled car. A few weeks before we had taken the collision coverage off that car to save money. We were already magnificently behind in bills from the past several years of my job sharing, and a few other unfortunate events, so financially we spiraled even faster and deeper.

For a long time I was afraid. There was a metaphorical elephant sitting on my chest. It hurt to breath. I couldn't write. I was stuck in a rut. A serious rut, spinning my wheels and not gaining any ground...even though we had friends who reached down and tried to pull us out...even though I knew that in order to help my kids I would have to pull myself out. I tried to 'fake it' for awhile, but it was exhausting to be afraid every second. I was always waiting for more bad stuff to happen.

One night I found on the internet, a mom who blogged about her daughter who has CP. I was able to follow her story for two years, all in one night. I felt some chest tightness release. I found some hope.

I also found a group of women on a list serve, from all over the world (Children's Hemiplagia And Stroke Association) who helped me to see Kath's future could be pretty terrific. They also showed me the power of women, and their strength, especially when having to find/make a path for their children.

A high school friend (Monika) introduced me to a concept I had previously been exposed to. This time it took. (I didn't have anything to lose.) It is the Law of Attraction. I chose my words carefully, I try to envision what I want, and not what I fear.

Another friend introduced me to Healing Touch (Doris). I saw Kath's reaction to it. It was powerful. Life changing.

One day I found I was able to listen to music again. The radio station said it was "A Positive Alternative." Turned out it is a religious station (Air 1). Somehow it helped me to take bigger breaths and to pray again.

I also found myself surrounded by an amazing group of 'old' students and fellow teachers who grounded me and helped me stay focused on the positives. And who reminded me of what I do right.

I have pulled together all of these pieces of my life and found a way to get through. My faith might seem like a giant stew of Faith, but one of the most important 'bottom lines' was that I had to reopen my heart to friends. For awhile it just took so much energy to stay positive for Kath and Nick, it took so much energy to do research to understand and then also see the possibilities ...that I just could not deal with anything or anyone else.

It took me awhile to pull together this quilt ( I prefer that image rather than stew :)) of Faith that I wrap myself up in. It took me awhile to realize that as Lynne McTaggart said, we have a 'necessity of establishing bond 'pods' - small communities created with our human values restored.' It took me awhile to realize that it was okay that I was using what I needed from a variety of sources. It also took me awhile to realize that it was okay that it was taking me awhile to get back on my feet.

When I felt strong enough to reach out I found the hands of some friends still waited for me, waiting to help me up. Willing to walk with me on this path I found myself on. I found that I couldn't do it by myself, I needed those 'pods' of trusted friends.

Regardless, my patchwork Quilt of Faith has taken me to this point where things are coming together, the writing is flowing more creatively and fluidly (hope you agree too :)), relationships are building and my smile is genuine. It's a summer of re-energizing and faith and reflection.

Here's to believing, leaning, persevering and the friends not afraid to get messy. Hope you have found your own quilt of faith that gets you through too.

Monday, July 18, 2011

July already?

Ok, so I real haven't been too good about getting 'back on track' since I haven't written since May.

The school year ended in a whirlwind. I felt completely drained. Questioned my passion for my job and my ability to continue. My core, my beliefs about teaching are being questioned because of this anti-education shift, the new teacher 'evaluations' and so much more.

I am so glad it is summer so I can try to readjust to what and how I have to approach the new year. Hmmm...notice something? I didn't start with Kath. Although a ton of things have gone on with her, I am finally able to swallow it and live it. Yes, I analyze and try to negotiate the best way to teach her, guide her and at the same time treat her like a kid, but I have gotten into a somewhat comfortable rhythm. It may sound weird but I've figured out how to read her.

We decided that for the summer we would give Kath some time to just be a kid. So she is not going to summer school and she is not having any therapies. She made a comment one day in her effort to be able to stay home, "Anyway, momma. I saw the sign on the door, it says school is closed, I don't have to go!" Think she needed a break. :) Since she has been home she has started to not be so upset when she uses a pencil (she would get overwhelmed and put it down without trying too much), she has done better with going potty, she has put on her own herself!! and much more. We went for a neuro pysch eval and will get the results next week.

This summer we have also gone back to the ENT (ears, nose and throat dr) for Alex. He wasn't ready to take her tonsils out....unless she got one more case of strep during the summer. If she got one case during the summer...when most kids DON'T get strep, that would be a pretty convincing argument of how bad things would get again for her this school year. Three days later she was sick and after the July 4th holiday she was diagnosed with strep again. AND she also has a few oddball side effects. One is that her knee (joints) are tender and that she has a facial tic, she blinks her eyes in an exaggerated manner. We are hoping that if we don't pay too much attention it will go away, but she's been off the medicine for almost a week and she is still tic-ing. She goes in to have her tonsils removed Aug 1st.

A few things we have done this summer:
~ Kath has been working on remembering her ABC's and she has started to try to write them.
~ Alex has been reading chapter books on her own for the family reading contest.
~ The girls have each attended science museum classes
~ and art classes.
~ They each take dance classes.
~ We have a garden trying its hardest not to grow, we each have sections to try to get to grow.
~ We have gone to the movies, girls and I saw Cars. Roger and I saw Harry Potter. And I have gone to the movies a few times with a few friends.
~ The girls and I took Amtrak to the city where we visited Big Bro Chris. We stayed at his apartment, took subways, taxis, a bus and a ferry. We saw the Statue of Liberty (or as Kath called it The Statue of Libya).
~ The girls and I went to Long Island and stayed with Grandma Steiger, visited Grandpa Steiger as well as Uncle Charlie, the Fire Island Lighthouse and the Robert Moses beach and the Lindenhurst docks, where we met a one legged sea gull.
~ Alex and I are up to Book II of the Harry Potter books.

~ And I have made July my Novel Writing month and although I am only at 11,000 (as of the first rough draft of this, and half the month is over, I am totally amazed by how far my story has come and how much writing I've done...especially considering how much traveling the girls and I have done.

~ I am shadowing a teen summer writing camp this week, so I've actually been able to get a lot of writing in.

While we traveled we left Roger to continue with his second job, take care of the animals and to write. He is working on several stories too.

I am working on reworking my blog, and I will be trying to set up new pictures soon too.

Hope this blog finds you all well.

So...that maybe sorta did some kind of catching up...