Tuesday, June 9, 2015

Good news and more pushing



We met with advisors at Libby's college of choice today to get Libby's schedule, accommodations, and classes figured out.   She has her school ID!  She has a schedule!  She has a degree plan!  We have a plan that involves lots of hard work and her following her dream of studying and furthering her love of art. We decided on an Associates Degree which means that she will be pushed in math classes, as it is easier to back off into a certificate program than to step up into an Associates Degree. My worries have not been as much about in class, but more about if she would be safe in between classes.   Wow. Today changed so much. 

This process began last May with some accommodation requests for a test and has continued.    Libby requires a great deal of creative thinking, latitude, and accommodations. 

Some of you who are reading don't know the difference, as many don't, between accommodations and modifications.   Think of going to a hotel and asking for a room on a lower floor because it makes it easier to get your dog out to walk in the mornings.  That is an accommodation as nothing about the room or the hotel rules and regulations have been altered.  Asking for a doggy door to be added or taken away from your hotel room is a modification. 

In education, we can accommodate students who learn differently by giving them access to the books, lectures, and/or notes as a recording.  We can accommodate by allowing a scribe, Braille, an ASL interpreter, and a seat away from distractions.  In English classes I may assign three essays over a span of many weeks.  Each essay may consist of the culmination of mini and major lessons on thesis statements, supporting details, and embedding quotations. An accommodation would be to assign and work through one essay with a student who struggles, while making sure that each part of the essay was there.   A modification would mean that the entire focus would change and the student would only write using one of the three components that the other students were required to write.   
Accommodations make learning more accessible and modifications usually mean that a change is made in the curriculum.  

Every person learns differently.   If you think back to your education there are probably classes and subjects you just didn't get. Maybe with a little ingenuity you would have been more successful? 
This is what it means to me to differentiate instruction.    This is the No Excuses part of my belief.  It is up to the educator to reach the student and students generally rise above expectation. 

Apparently, Liberty and her needs may be outside of adult education.  Colleges are held to the same standard as every school when it comes to allowable accommodation and modifications.  Every school is different and private schools, those without any federal funding, do not have to accommodate. The content of the course cannot be fundamentally altered.   Altered is modified curriculum multipled.
 
In a meeting, in front of Libby, it was strongly implied that she would not be able to understand or do the work.  "This is not high school and we do not make courses easier.  She would be expected to learn and do the work".   

As a teacher, I would never say things like this in front of a child.  All of this was said in front of Libby as if she were deaf.  Libby remembers and hears more than anyone wants to know.  Rachael removed Libby from the room until our meeting was over.    

Libby already knows what she can't do. She has heard it from doctors and from us.  She can't move out and get married. She can't go on real dates- right now. She is beautiful and vulnerable and brilliant. And as I said  while they were  out of the room, she has done everything she was supposed to.  She did her work. She kept her attendance up, despite doctor appointments, treatments and surgeries. She has listened and read every book assigned, on our dime, and discussed it as much as her vocalization allowed.   She can tell you what she's learned, draw it for you, type it (slowly), and turn it in.   She does her math by being given an question and choosing formulas or solutions.  She will work it out in her head and choose an answer. 

When she creates art it happens in a beautiful variety of ways.  Art means to create meaning using a variety of methods. Her methods may be different, but they are hers.  Her art represents her, and it seems, that she may be kept from her art because she does not fit in a definable box that is easily recognized by others. 

Her hands, arms, legs, and mouth may not work but her brain does.  She has scholarships that were awarded based on her accomplishments, not on who she is.     Does each kid deserve a chance? 

After this head against a brick wall meeting we headed over to drop off other paperwork and give her the campus tour she didn't get to take.   She didn't even want to pick out a t-shirt. She didn't want to discuss college this evening.  Not even before our prayers.   She refused a picture with her first college shirt.

It would be easier to get her SSDI and let her sit at home all day. She has dreams and possibilities.  I can't let this one hurdle of inviting a group of people to join our learning curve stop us.  

Nothing comes easy. We don't have the support of so many relatives that giving up on her means everything- just as those whose support means everything else.   

At the end of this journey we have to be able to say that we did what was right and did it with all our might.  
When we as educators give up hope is the moment our students completely stop trying. 

Rachael's note: perhaps I may be a bit too blunt, but I cannot sit by and allow anyone to speak as if Liberty were not present in the room. As an educator, I also believe that we should never, never point out what a person can't do. We already fight our own images of self worth without anyone else adding to it. Never, for one moment doubt that I don't know the battle that we fight every day, but don't look at my child and judge what you think you might know. Don't tell me that "we just don't know because we have never faced something like this before." You cannot be the head of disability services and not be willing to try and think outside of the box. I know first hand that education is based on the factory model of education where we are just trying to produce the mass model worker, but when we do that, we forget the individuals that sit in our classrooms--the individuals that we meet every day. And Ileana tells me to say that we continue to believe that people act with the best of intentions until they know how to better. We do and will always assume best of intent because that is how we live our lives. 

Our battle is against our own fears of her abilities/non-abilities and against society just as much as the enigmatic progressive degenerative disease that continues to attack her.

We have a college course schedule and an Id.     We have another leg of the marathon completed. 


Saturday, June 6, 2015

Sacrificing versus Giving

Usually I write about being a parent and sometimes about being a teacher, this is more about being a person. 

When I talk about sacrificing, I am not taking about simply letting go or giving something up.  There is a higher thought to this giving, it involves letting go of something for the benefit of someone or something, knowing that the sacrifice will cost you.  Further it means that you give with an open heart and clear conscience. 

Giving means to give without expecting anything back.  Giving of yourself: your talents, love, pain, joy, and time is risky.   You are the most precious thing, not the stuff or the things.  

I have made many sacrifices willingly, knowing what they would cost. I give of myself willingly, often ignoring the pieces of myself I have given away.    Recently I have made many sacrifices. I have made changes in our family plans, routines, and goals.    The key here is that these adjustments were made with prayer and an honest heart.   Knowing we would give up a lot and had the possibility of losing relationships.   I believe that if you do things for the right reason things will work out in the end.   

  With that being said changing yourself to make people happy or to fit their needs or their expectations is not okay. This is especially important for me to remember that I am not the person I was yesterday and that I am more than the mistakes I have made.   I truly do strive to be better everyday. 

I am not who I was twenty, ten, or five years ago. I also do and will not hang on to past pains and wrong doings.   I let them go.  I forgive.   I say I am sorry and I mean it. Pain from the past is heavy and I have other things to carry.   There are many in my life who are killing their present by holding onto the past.   This makes growth impossible.  Your roots become tangled and you will become diseased. 

Some of what we have done aside from getting Libby through graduation, arranging surgery on both legs, doctor visit to Ft. Worth to adjust her battery charges, new Occupational and Physical therapy evaluations, visit with services at Libby's college of choice, got her class
schedule for this Fall, and next we have meetings with DARS for further testing has been to ensure that we have and will be able to do what is the best for our family.  And add in a five hour trip to the lake, some side yard swimming, a little zoo action in Ft. Worth, and a little sleep.   We have much more to come as I am trying to get a bunch of summer in before Libby is stuck in double leg casts.  Have I mentioned that there is a tendon release surgery available for her hands as well?   That is a very possibility in her near future as well. 

There are terrible things that people do when they are hurting.  I can say honestly that I am sorry for your pain, I apologize for any pain I've caused, punish myself, react with anger, offer and then give forgiveness and then try to thrive.   I cannot make myself smaller or to make others feel like they've punished us enough.   I have lives depending on me.  We have a beautiful life and love should be shared and multiplied.   We cannot control how others treat us, but we can control how we respond to others.   I willingly sacrifice to give as much as I can to those who need our love and help. 




Thursday, June 4, 2015

Betweens

One of the things that is a bother is the between times.   The moments between doctors' calls, consults, research, appointments, and the waiting. The waiting for the return call, to get in to the room, for the doctor, for the information, for the insurance clearance, for the prep for the procedure, for them to take her away- the in betweens.  It is always these moments that are the heaviest to carry.  These moments when there is only waiting to be done.   Sometimes you have a bag of clothes and items that represent your child which you hold on to until whatever is done. Today we are sitting with the empty chair and waiting.  
Today, we know our waiting will come to a positive end and our daughter will return to us and her chair will be filled. Too many times and for so many others, the between times are terrifying steps toward the unknown.  But for us, on the day, we are having Botox throughout her upper body,under anesthesia, so it is not a long nor a scary wait.  But it is still a waiting. Then we wait for her to wake up and head for the actual doctor's visit.   Then we wait for the next referral to a surgeon who can do the similar surgery to Liberty's upcoming Achilles' tendon release, except this surgeon may save her hands from complete retraction. 

Instead of ever allowing the "what if's" to camp out in my heart, in between times I focus my heart on the many children and adults who I love and who may need special thoughts.   I let my mind wander to who has caused me pain or has been in pain themselves.   The past nine months have cost me several friendships and the loss of family members.  Not to mention the emptiness left from the many family deaths in the past year.   For these losses I pray in between for there to be peace and acceptance.

My belief is that those who hurt others are hurting.  Those who hurt- hurt.  To these I send my hope and prayers.   To these I send bits of joy and peace.   This lightens the waiting. 

I always carry thank you and bless you notes in my bag and it is interesting to whom I find myself writing.   Some notes don't get sent because they don't, but most do.   Because in between I have lots to be grateful for.  

In between, when worry, fear, and grief could creep in, I send out positivity and hope. I can't ask that my child be blessed if I am not blessing others. 

Tuesday, June 2, 2015

Moving on


We are still processing the fact that Miss Liberty did graduate.    It seems so unreal and sublime.  The moment she did her walk to get her diploma and then made it safely back to her chair I felt as if a million pounds had been lifted from me.  Her goals when she agreed to have the Deep Brain Stimulator's implanted were to dance at her senior prom and walk the stage. And heck yes she did both.   We had the amazing support of every senior at Caprock cheering her on every step of the way.   We also had the amazing support of the staff and administrators who totally get the belief that 100% means 100%. Every kid matters.   Could not be prouder of this astounding group of people! Grandma Linda, Jennifer, Xavier, and Jasmin,  Mariah and Tyson, Jeff, Thomas, and Kim Davis, and Beth Garza were at her graduation showing their never ending love and support. We would not be able to function without the endless strength and love from Rachael. So much has happened in the last five months that I didn't know if we would make it to graduation.   This post is about one of our battle fronts.

One of the forces we have been waging against is the contraction of the muscles in her legs and feet.  She has had AFO leg braces for four years and been getting Botox injections every three months for 18 months.  She has continued with therapy in school and walked as much as possible.  Still, her Achilles contracture has increased.    

The therapists through school did not want Libby in her AFO's because her muscles were pushing so hard against the form of the braces that she was getting skin breakdown and bruising. On April 15 we were told that Libby should not wear the braces unless we were transitioning between sitting positions:  from chair to potty to chair to car and so on.  A few surgical options were offered, but mostly Libby was to be sentenced to a wheelchair full time.  That was a week before her Prom. 

We broke the rules and she continued to work on walking with her braces and somewhat without.   Often her left foot is supinated to a point that she could walk on her ankle bone.  Her left foot also drags.  

She reached her goals and danced at her prom and walked the stage. 

"Wake me up"

I will not give up until every avenue has been scouted and every tried. 

We met with a local Bone and Joint Specialist, that was Senior Day, May 15,  who scheduled us to see the surgeon he works with. We met with the surgeon yesterday and Libby will be having Bi-lateral Achilles' tendon release surgery in a few weeks. This will happen here in Amarillo. This is a day surgery and will be relatively non-invasive. Except the little fact that I skipped right over.  
Libby
Will
Be 
Sporting a 
Calf 
Length 
Cast on
BOTH
Legs for up to 
SIX weeks. Yep.  Skipped right over how we are  to move her around since she shouldn't be involved in any weight bearing movements. Yep.  We are looking into how to transfer her safely and how that will work.  

Libby's only question was if she could have a different color cast for each leg. Mine was if I can still shower her if I keep the casts dry.   No thinking at all about how we would be getting her into and out of the shower- or anywhere.      

Logistics aside she will get some relief and hopefully we can keep her active and upright for as long as possible.  Today we began intake with a new therapy place and tomorrow we head to Ft. Worth to get her Botox and her battery charges adjusted.  

Please know we are immensely grateful for all of your cards, calls, texts, emails, thoughts, prayers, nods, and general kindness.  We are truly blessed and will begin "Operation Lift Libby" practice sessions soon. Funny videos to come...


Well, maybe we inadvertently already began our training.  Be blessed.  

Move onward toward college goals, art exhibits, and more life!!



Sunday, April 5, 2015

Renewals

Jasmin carefully decorating...

The last week was short and stressfilled. Most weeks this time of year are a bit over loaded with long lists of to-dos and gotta do-too.   We had EOC testing and that meant altered schedules and early mornings and shorter lessons.   My AP students are very close, 22 school days, from their AP exam.  And that alone is a bit nerve wracking.  As a teacher, we can only do what we know how and keep learning for and with our students.    

There are other hard and heavy hearted decisions that we are making for the benefit of those we love. No matter what, we will do what is right and best for all involved. 
Libby did her best at her extra walking and I am very proud of all of her brave efforts. She is very excited about her prom and she still doesn't know about being nominated for Queen.  I told her about the Prom King nominees and she said "all nice, cute and all my boys".  There ya go.  To her every one in the senior class is her friend and she is already starting to realize that after graduation she won't see some of the them again.  

She has a picture of her prom date that one of her art teachers gave her, she calls him "sweet".  I asked if she meant her sweetie, she know "no, just sweet boy". Yes Libby, yes he is. 
Xavier needed a little space and no I did not turn it on.  He's such a little turkey man! (I did have a talk with him about hiding places and safety. Dryers, although appealing, not safe hiding spots.) 

This Friday we were going to celebrate Jasmin and Xavier's Adoption Day by fake camping on our property. Camper is cleaned and tent ready, then a cold front came in.  We had a movie and some food.   Things change. We did get to spend some quality time with Mariah and Tyson as they came down Friday night for the festivities as well. It was great getting to see and spend some much needed time with them. 
Libby and Jasmin chillin'.
Notice Sparkles, the incredible bear, photo bombing is! 
Last night we dyed the eggs and it was a egg-ceptionally funny. 
Dye-ing is lots of fun and scary. 
Libby was very spastic and a little scary with things that stain. 
Xavier is very serious.
There's that smile.
Easter came a long bringing more family and lots of future hopes. 
Libby wasn't moving very well, so we watched the kids. 
The long promised s'mores...
Xavier is not a fan of the fire. 
Libby dozing off.
Time to put the fire out means a few of us got wet...
http://www.youtube.com/watch?v=35OGKtmDth4

Jasmin is almost as long as I am!  

I know this is a lot of family pictures, but it is in these little acts that we carry on. Knowing that we have a fake camp attempt coming up means a lot.  The weather is only getting better.   I know there are huge, painful and what could be overwhelming decisions coming ahead of me.  But I don't operate from a state of fear. I'll have to let hope continue to drive.  
**13 days until the prom** 

Friday, March 27, 2015

Goals and Gifts

After the shock of Libby's 18th birthday and the amount of work to be done in order to get her into college, I asked Libby what her goal was for the rest of the year.  (This is after the challenges of SSDI, modifications, and accessibility hit me like a circus train full of elephants.) She responded that she wanted to dance at her prom and walk the stage at graduation.  So, we have been pushing her more and more to strengthen her legs and trunk. The ability to walk more and correct her body positions more has been enhanced since the DBS increase and the Botox at the start of March.  

We pushed her goal over Spring Break and starting this week I left her wheel chair at school and walked her to the car.  The next morning she walked to her class.  And repeat.   Tonight she walked, always with assistance, into Walmart. We have to push her because she still gets no therapy outside of school; I hope that this will change over the summer.  It's a challenge for my body as well as hers, but her goals match mine for her and I know it will be worth it. Moving her and stretching her more it is.   I'll add some Tylenol.  

An amazing young man, Jake, has asked Libby to go to prom.   He is smart, sweet and truly one of the kindest people I've met. 
His mom, Eliza, has been an ASL
Interpreter in my classes for many years. She, and her family, have known Libby since before the Lyme disease changed our lives.  
She thinks he's very handsome and squeals every time he is mentioned.  She is beyond excited to go to prom, show off her dress, dance, and have a date.  
 
**Disclaimer-- I have loved this school for over 13 years.  Since I first stepped foot on the campus.  We have made choices and sacrifices so that I can work at this school 35 miles away from the home I also love.**

Unknown to me a group of seniors started an Instagram and Twitter campaign to nominate and elect Libby as Prom Queen   Uhmmmmmm, what?  Totally unexpected and something I would never even say outloud that would be thought of, much less dreamt of.   Today was the voting, ironically through English classes, and I was humbled throughout the day. 
Since I heard about this whole Queen thing I've been afraid. I didn't want my precious pearl to become a joke or to be used period.   So afraid and protective that I haven't even told her that she has been nominated.  Talking to my students I have been even more humbled and amazed by them than ever.   I was told about how Libby always shares her smile, sings, and laughs with her peers.   They have lived through the last four years watching her walk into Caprock as a Freshmen and then become almost chair bound.  They have lived through her tests, scary surgeries, and the painfilled progression of this terrible disease. Libby is theirs and she claims them.  When a kid waves at her she always tells me "my friend" and then fills me in on what class she has with them.   I have learned to love all of these kids through her eyes and heard from Libby when a student was upset and failing, or excited and thriving.   

Because of these amazing students, Libby has been able to try many things knowing that she had their support.  Even when her body shuts down and her speech leaves her, she still has other kids who don't give up. Because of these scholars and future leaders she has been given an amazing gift- acceptance of her regardless of her abilities or disabilities.   Whether she is elected or not, Libby will be filled with joy simply hearing her name called out at her senior prom.  

This day, this chance that before her body was attacked wasn't guaranteed and I would have taken her prom for granted.  I am so full of awe and gratitude that I cannot even process what these kids have chosen to do.   

This school is a high poverty school with a high percentage of students of color and these are the ones who have chosen to allow two who would be generally overlooked to shine.   One of the boys nominated also has some challenges and is well known as one of the kindest and funniest people on campus.   They have chosen to give these kids a chance.  Admiration and appreciation don't cover it. Already such an amazing gift.  I love my children, biological and claimed.  They are all mine and Lord knows they have my heart.  

Meanwhile, there are several weeks of high stakes tests and lesson plans and life until the prom.   Lots of planning to be done!   Never underestimate the kindness of people. Simply amazed. What a gift it is to do what I love with such amazing students. 

Tuesday, March 3, 2015

Choosing, adding, and a bit of the everything else

It seems as if the balancing between mothering my children, other children, broken adults, and my four-legged children is a heavier struggle as of late.  I have to hope and believe that my biological children, and all others, know that I love and support them. Being kids of a teacher means that you share your mom with many.  I try to think that it isn't an act of choosing between, but is an act of adding to. Thinking along these lines I adore all my kids and I hope they know that I love them and expect greatness in return.  One of amazing students painted this for my classroom.  I am so blessed! 

Last Wednesday we drove to Ft.Worth for a Botox treatment and DBS programming.  The weather was interesting, as a snow storm followed us all the way down.  
Because Dr.A was adding injections into Libby's feet, the soles, she was sedated for the Botox injections. Trying to relax so that her Parkinson's toe walk will be more like a flat footed strut. He also treated the huge knot on her neck as holding her head upright remains challenging. We have been battling some skin breakdown on various places on her head and neck because of her head constantly  laying to the side. Along with neck injections comes the chance of swallowing  issues which we are facing now.  Monitoring every bite and thickening her drinks to make sure she doesn't aspirate. It's a balancing act of medications, DBS changes, and Botox. He did increase the power going through her DBS and we have seen a larger range of motion already.   I really wish we had her in more physical therapy, but too late to change the schedule now.

We also grabbed her prom dress while in Ft. Worth.  We are keeping the dress under wraps until the prom. Her goals are to dance at her prom and walk the stage at graduation. 

We made it home on Friday, March 6 and Saturday Libby had art competition and I had AP scoring training.  It was a lot to push for after a doctor trip, but Libby insisted in staying through until the awards ceremony.  

Here is her art displayed, not the one with the mask, the three dimensional piece titled "Life, Liberty and the Pursuit of Art". 
Here's a better shot of it. 
This one is titled "Hope".  I love that both of her art teachers have found ways to help Libby make her own marks on the page. Grateful.  Oh, and she got two gold medals.  She's may have glowed for several days. 

On Sunday morning, our beloved cat, Jar Jar Binx passed away. He had waited until we made it back.  He is missed by his two and four legged family. 
Now it is Spring Break and I think we all need this time so desperately.  I haven't been able to fully process everything has happened and need to work through some grief of various kinds.   

Missing my Grandmother and unable to find a way to get my mom into a safe and healthy environment.  I will take all the blame if she would just let us get her into a safe place.   So many painful decisions have to be made very soon. 

We are also making the appointments to get Libby into college and figuring out how that will work. She has goals and dreams that we will support as best as we can.  The paperwork and obstacles are full of learning opportunities (pardon the bit of sarcasm). 

This weekend we are focussing on eating and sleeping, and a little ride in the country.  Time to recharge. 

I'll not be choosing but will continue to add to.  My heart grows bigger and makes more and more room for so much love and gratitude.   There is still so much to do and I know that with a little rest we will be ready.