October in Teacherville

Yesterday, I left campus at 6:15 to go to my night job of teaching. A wreck happened right in front of me.  The carnage barely missed me. I managed to back up, barely. The car that was hit stopped inches away from my front bumper. Glass was everywhere. The ironic part is that before this happened I was already a shaky mess.  Why?  Not Libby. Not Mariah. Not my Mom. Not my loves. It's school. 

In that split second when I thought I would be hit, I didn't think about my daughters, my mom, my loves.  I thought of the grades I needed, and if I had sent that email, and when do posters go out, and, I have to finish the data analysis, and, and, and...

The month of October is where the normal wear and tear on our teacher tires start getting thin and running rough.  We wear out. The numerous levels of stress becomes overwhelming. Layers of paperwork and grading to get through, searching for some kind of glimpse into the mind of our students. 

I cannot tell you how important this is.  Teaching is a marathon, not a race, thank you, Terri Morgan. There are going to be days that you feel like quitting and "going home because Walmart will always hire me", but you don't because you are "never so alive" as when you are teaching-Rachael Collins. "Focus on your passion" and keep going- Lisa Mote. 

There are still days when I wish I could do enough, just something right,  and could reach that one kid.  There are still days when I wish I understood why one child will do the work and another won't. When one child will destroy sticky notes because all they know is destruction and I can't fix them. When another child needs help, or encouragement, or simply to be heard.

Then there are the politics which come with working with other people. The damage we do to one another  with technology is truly sad.  Teaching is a profession where we create all other professions.  

 Then add the massive weight of increasing testing rigor and expectations, not to mention the incredible amount of student loans, money out of my check for the classroom, fear of failing these kids,  and you will find me empty. 

It is late October and I am

Empty. 

I just want to teach.   I believe in the ability of people to learn. I believe in kids.  I believe in teachers. I believe in accountability on all parts. I believe in doing everything humanly possible to make sure each child/person more educated, but many teachers aren't humans. 

Hug and support your new teachers.  Maybe share a snack and cry a little. Continue to admit that you  "don't know" and then help them find the answer. 

To me, real teaching is hard. It is to give pieces of yourself to other people and recognize that giving. To me, I don't know something until I've taught it. So, by my understanding, I come to the classroom ready to give.  And give relentlessly. And be empty- for tomorrow. I know the students and restore my hope- because I give them my hope.

All people involved in the wreck yesterday were okay. 

Be blessed and be a blessing.

http://www.npr.org/sections/ed/2015/10/22/450575463/it-s-okay-to-cry-in-your-car-fighting-disillusionment-as-a-first-year-teacher?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=2047

Juggling Princess Pincushion

Hello from the land of Mom of two kids who are both in college.  Everyday we are trading out books, bags, hand and leg braces, meals, pills, potty times and homework.  

She is loving her classes and has even admitted to having "fun" in her new math class. Her reading class is interesting.  She reads lists of short passages and then answers questions over the text.  This is online work and either one of her scribes, Jennifer, or Mariah record her answers.   Her graphic design and beginning drawing courses are exciting.  She has really been turning out amazing work. 

The top is the model, the bottom is hers.

Ball and cone to work on shading.  I can't really attest to what all she is drawing because she is producing so much in her classes. 

Of course, her portrait of Her beloved Bryce just kills me. This is mixed torn paper. 

It's feels like we have adapted to college fairly well.  The longer class periods and the many hours of homework just make this juggling act more interesting. 

Liberty hasn't had Botox since June 3. Scheduling around all of the school schedules and her doctor's schedule was difficult.   We've had this appointment since early August; it was the first time we could get in.  

Dr. Acosta was happy with her feet and how well she is holding her ability to have 90 degree flexion. 

Libby has been fighting us over not wanting to eat very much, and we are not sure if it's more of her jaw hurting or because she worries about getting too big.  She has also fought over taking her pills, especially the relief pills.  They make her foggy and she can't draw as well after having them.  So, she's willing to be a shakey locked up mess over foggy brained. When she's locked up she can't really use her arms, so not taking her pills is a lose-lose situation.  Stubborn!

She took Botox all over her body and didn't complain much. She even got some in the bottom of her feet. She may whine to us, but she really is tough. Because her neck has been extremely tight, she is struggling to keep it up in class and to do her computer lab hours, lots of Botox was focussed on her jaw and neck.  

I hate seeing her hurt and locked up; it is only because she gets relief after these treatments that we continue.  So many sticks with so many needles.  We have thickening agents on order, just in case swallowing becomes an issue.

While the DBS Nurse Practioner was checking her batteries she noticed that one, her right side battery, wasn't working at full charge. I had to step out of the room.  Instantly I am nauseous and can't breathe. Her left side had been tightening, but I really thought it was the lack of Botox and the immense strain college has been on her body.  I missed the fact that one of her batteries are low and that's my job. 

http://www.medtronic.com/patients/essential-tremor/therapy/dbs-therapy/activa-rc/

She will have to have her battery replaced and there are now a rechargeable version available.  Instead of two batteries, one for each side she will have only one that charges both sides.  She have to wear a charger for an hour everyday. Apparently they don't have a solar charged battery, yet.  Then I could just sit her out in the sunshine. 

We wait to hear from the Neuro Surgeon about the date. We will try to get it after the semester ends.  It is a day surgery, which makes me less fearful of missing school. Her next Botox is in February.

Gotta smile at the Libby nest made for napping. 

Princess Pincussion is hungry and fussy. Typical day with college kid. 

Yes, those are Libby's legs hanging out of the bathtub at our hotel. When we travel, it has become safer to just sit her down into the water, sideways and bathe her.  She doesn't hate it, so that's a plus.  *No teens were embarrassed during this photo shoot.

Perfectly abnormal normalcy

Two weeks ago Liberty started college. My baby, who was struck by a horrible illness years ago, was starting college. She was not going to be in the same campus and within very safe bounds. 

Now, now after the tons of hoops, tests, meetings, and paperwork- she is going. She is two weeks into her first semester of college. She is all over everywhere as she has twelve full hours plus some lab time.  She couldn't do this without Mariah and Libby's Aunt Jennifer.   So, very grateful. 

Jennifer and Libby chilling in the Art Museum. 

My baby is out there. She has pictures and stuff posted about her that I have no idea of.   She has a desire to skip her math class and nap.   She hates the extra long classes.  She wants a phone and a van to drive her in.  SHE wants to join Match.com. She wants to join clubs and stuff. She sees boys she likes and tells them.  She is surrounded by people who I don't know and who don't realize how important and precious she is to all of us!  

Here you see Mariah pushing Liberty away and toward both of their futures. Both sides of my heart going forward toward their dreams. It's a fuzzy picture, may have been crying. 

This morning it hit me while we worked on HER homework on a Saturday morning- this is normal. Liberty is in amazing hands, but she is my baby. My baby is off to college without my safe parameters. She isn't at Caprock where I can check in: physically, medically, and emotionally all day.  That's what happens when they become a legal adult and choose college.   My umbilical is double wound and stretched.

    We planned and prepared for everything: pill schedules, easily accessible potty places and times, hand braces, dealing with leg braces, feeding places and schedules, lab times, homework times, and even individual schedules for all of us around her.  I didn't plan for extra long classes and keeping Liberty's learning engagement that long. 

Libby is taking math, reading, and two art classes. There are study sessions in the computer lab as well.   She is learning to complain about things that really do hurt, her leg braces, and do it so loudly so that she can get out of class. This is also a normal. She's enjoying herself.

The top row is the model form, the bottom row is Liberty's. 

This one is cone and ball with shading.  Shading is hard because with her new art brace she has to change the angle of her hand, but she's doing it!

Three hours on homework this morning, guess I'll have to consider adding that to our routine.   So normal. And beautiful and blessed. 

*DARS services can begin, testing and vocational training, at the age of 18.  Waiting until your child with a disability is 18 May be too late. 

http://www2.ed.gov/about/offices/list/osers/rsa/wioa-reauthorization.html  these workforce programs can begin at 14. Visually impaired students can begin receiving services at 14 years old. 

*Section 504 recipients and those with physical and intellectual disabilities can receive accommodations in post secondary educable environments. 

*Modifications, changing the course material is not allowed in most campuses. Accommodating the material and environment to be more conducive for that students learning is. 

*It's important to start asking about your options before your child graduates.  

Be blessed.

New Loves

I

   If I said that teaching was easy and that I always felt successful at making my students successful, I would be lying. Every period, day, year, and especially every student is different.  Last year I came very near to giving up.  I felt as if my heart couldn't keep going. 

  Getting Libby through her senior year following Deep Brain Stimulator implants, Grandmother falling and moving to a nursing home, my Mom not dealing with Grandmother being gone at all, new teaching position for me, and more stressors that I can't list made the last school year a challenging one- to put it lightly.

 

  I lost both of my Grandmothers within a six month period, moved my mom into a house of her own, the complete detachment of family members, loss of friendships due to work stuff- too much loss. 

  But what I gained was a chance to be schooled by an amazing group of students.   Every year I learn so much, this past year I was changed.   This year I was schooled.  This group of students had been with Liberty since her freshman year.  They made her their Queen and changed many other lives in the process. 

  

   Liberty has now completed her first week of college and everyone survived. 

  At our first Pep Rally on Thursday, I realized that the new group of students  I have are mine and will continue to teach me, as I will try to teach them. 

  

  So, I took down the Hall of Fame pictures from last year. I took them down because they are moving on. They have their wings and need to go forward. Their pictures will live with all of my other past loves.   

  I can't ever close a door to a student, it's my job to help them open many.   Much love and belief to Class of 2015- go and be extraordinary! 

Joy and promise to Class of 2016! 

Gettin' schooled

The time is almost here. In just a few too short days school will be back in session.  I am ready to meet my new loves. Ready for the chance that every teacher gets to start over.  Ready to make a difference. 

Despite all the calls and appointments there is still so much in the air for Liberty. Her transportation, her attendant care agencies, and her newest doctor.  I wanted everything ready before her college years begin.  No such luck.   Letting other people take her, even though they are amazing and loved?  Ughhhh.  Isn't this the same issue that all parents face when it comes to sending an adult child into the world? 

Deep breath.

This morning we met with a Urologist.   There are a few things that we keep very close when it comes to Liberty's struggle.  We have tried to keep her dignity and  "princessness".  The inability to potty as needed and predictably, one and two, has been an issue for a long while.  We have a potty schedule and try to get as much fluid down as possible, but remember that she doesn't swallow well so drinking is difficult. That means that her fluids are thickened by additives which cause other issues. Frequency and unpredictability added to her constant fear of falling, especially in new bathrooms makes for greater challenges.  So, we have been waiting to see this new doctor since June.   

<http://www.pdf.org/en/spring07_gastrointestinal_and_urinary_dysfunction_in_pd>

Libby will be going through several tests in September and we will go from there.  Our goal is to keep her basic body functions working so that she has as much of a normal experience as is possible.  

Jennifer, Mariah and Grandma Linda have done an amazing job practicing to take full care of the Princess of Enigma. I am grateful and I wish I had more money to pay you what it is worth.   And Mariah, I have tried very hard to keep you active in Liberty's life while not having you be your "sisters' keeper". Yet, I am grateful that the schedule between your classes and Libby's will work out. Jennifer and Linda, it amazes me how your schedules and willingness coincide with times when Liberty needs help. 

I am allowing  myself a little more time to be on edge and worry.   My kid wanted to be in a dorm, she wanted to "go off to college" with her friends, and be independent. That is not our reality. 

 I have to keep in mind the blessing that Libby is here and has a chance to go to college.  She has a chance and I will make sure that she gets where she needs to be.  

I know that as long as we are doing what we should everything will work out; I'd just like a few more ducks in a row and more of a coherent plan in place.  We are trying.   We are damn sure trying. 

Meanwhile, I'm just a mom of an incoming freshman who is starting college and I'm supposed to let go.   (For this picture I endured a lot of whining and had to implement some bribery.) 

Picking up bricks

I'm at I have been privileged to spend three days in Austin surrounded by brilliant minds representing many content areas.  Having conversations with and listening to speakers who offer vast amounts of knowledge has been inspiring and always humbling.   In attendance at the National Conference I encountered people with many varying degrees of physical abilities.  I can see in other people that there is always a way. People of all degrees of ability are able to be accommodated and their gifts are able to be shared.  I want the same chances for my kids, pretty much a universal Mom thing, but we were never supposed to be in this position. Who really is?

This is the state capital building and this feels like our life.   The building is accessible, but the ramp is way off to the side and many more steps in hot, humid Austin.   Parking Libby there and realizing that we are spending everyday going over, around, under, and sometimes bulldozing our way through the systems. It's like my habit of picking up rocks from anywhere or bricks during our travels, I have to carry more.  More over, around, under and sometimes through brick walls.  Yea, I have a brick from 6th Street.

There are some amazing people who work to serve people with different abilities; Libby just generally doesn't fit into any of their service plans.   Here's what I've heard in the last six months: "she doesn't qualify", "she would have qualified if you applied before 18",  "why haven't you tried....", "call this number and start a case or make an appointment",  "but aren't you on...", and my favorite "what do you really think she'll be able to do..."!  More bricks.

Today we had our meeting with DARS to discuss Libby's test results for their vocational program.  These results will help us get her SSDI started and open other doors. I am glad we went through the testing, although now I have on paper what I don't want to know.   I don't want to know how much Liberty we have lost, how much of her cognitive and motor skills are gone, or her IQ.  I don't want to know and yet I have to in order to move forward.  

The caseworkers were very careful about how they gave us the needed information from Libby's tests.  I am most grateful. 

Libby was found to be unemployable/, not ready for any vocational training. A new label on new paperwork. Even though this is what we thought might be their verdict, it was still hard to hear.  My heart hurts and I think that's okay.   I am a realist and I am on the front lines for this kid; I know her limitations.  

I wish there was a way for Liberty to return to her pre-Lyme self.  Since that won't happen, we will keep moving 

one 

brick 

at a time. 

We went to the store on the way home and I had to cry through a few aisles. All the school supplies and so many little kids.  All I could see was the Libby from before. Before. Rachael took Libby and I maneuvered my sad way around.  (We were out of just about everything!) At the checkout the sweet lady in line behind me asked if Libby had CP.  I told her that she has Lyme which has wrecked her Neuro systems.  Her daughter had CP. She asked how old she is and after I said 18, she told me that they lost her daughter at 16.    My reality just got checked.   We had a beautiful conversation and I wanted to keep talking.   I thanked her and she just smiled.  She said to "just keep going".  Yes ma'am.  This has been hard, but we are still going. 

Libby is not a test score.  She is not a label.  No person is.  We will take these new labels and scores and use them to open a few doors.  Libby is beautiful and creative and truly gifted at wooing people. 

We don't know where this path of stolen bricks will lead is. I just know we will keep

going.  Monday we meet with the local college about the accommodations Liberty will need. I pray that this will be a positive step.  

Heartfelt thanks to our DARS people for trying to help and for being gentle on This Mommy. 

Perspective and tenacity

Rachael had planned a two night get away to Albuquerque several months ago.  We hadn't been able to go, just for fun, just for us, just to take care of a little business, and just smile in many years.   I have been so afraid of being that far away from medical coverage, our doctors, and our comfort that I didn't want to risk a frivolous trip.   

For over ten years we had been saving our change, with no specific purpose in mind, just saving it for some "rainy day".  This trip was our rainy day. We had enough to cover the hotel room and a meal or two. 

This drive up to Sandia Crest is one of the most beautiful places I've ever seen.  Tears flowed without reason as I was so happy to return. I definitely have a connection to this place.  

Libby was different while we were there.   She just soaked it in and kept saying that she "need to paint".  We asked her what she needed to paint and why and she finally shared something about "colors" and "inspired".   Okay.  So we will be painting.    She was so in love with the many murals and graffiti she saw all over the place. 

This picture was taken at the beautiful Civic Plaza where amazing things happen.  

I needed this time, though it was short and hard; I needed it.  Traveling with Libby is always difficult.  Traveling with her in two casts and heat made it extra trying.  She did try to be a trooper and then Princess Spoiled Butt would reappear.     

Never afraid to cross a bridge...

We have seen the mountain top and it was amazing! 

That view though...

My reflection is that objects in the rear view are closer and larger than they appear. The fear of taking steps forward, toward love and acceptance, has to be set aside.  Living life with fear guiding is not okay.  Not okay to me any longer. 

  The last five years and Liberty's illness was has changed me.  I am much less of a risk taker and have felt more fear.

We are dealing with completely new issues that are not related to her casts-that are breaking me.  Life isn't fair and having another part of her body under attack as we begin moving into adult life and college sucks.   It just sucks.  And it's not fair.    We don't ask for fair. We ask for ways around and a plan.

Can't go wrong with this kind of smile. 

Regardless of troubles and triumphs the sun still comes up tomorrow.   We, all parents, have to enjoy what we have  and keep moving forward.  Perspectives change, but tenacity doesn't. Tenacity I have. 

Leaping forward...toward regeneration