Wednesday, March 14, 2012

2011 vs. 2012

I thought I would do a post comparing last year to this year.

March 2011

  • Struggling through two classes.
  • 3rd-4thth grade math at home
  • Struggled to organize a written assignment.
  • 2 hour fatigue threshold
  • Difficulty following a conversation.
  • Age appropriate for an hour or two.

March 2012

  • Algebra I
  • Better conversation skills
  • 100% in 9th grade English
  • Writing is hugely improved
  • School from 10 am- 2:45pm , 4 classes
  • Riding the bus home from school
  • Age appropriate except when fatigued or sick.

It wasn’t enough just to have Maddi back in school struggling with huge holes in her learning. We wanted to make sure that she regained all of her past knowledge and skills. It has taken a lot of hard work and time to go through all of the curriculum but leaving holes in her learning would just set her up to fail. We want her to return to school full time confident and armed with the skills and tools to learn.

Fatigue is still an issue but her stamina is improving. This is a slow process. To give you an idea of how this works think of how you work with a toddler who has just learned to walk. Just because he or she is walking well doesn’t mean that you throw out the stroller and set out for a 3 mile hike. Most people bring the stroller a long for a while until the toddler refuses to use it for an entire day long outing. Fatigue for Maddi is all about providing very calculated exposure to stretch her abilities while being able to accept when things are not a good fit for her.

These days the pasty white fatigue face is seen mostly at night and after a long involved day. She is able to hang out with friends for hours on end and, for the most part, seems pretty much an average 14 year old. Although,she does much better with a small group rather than the chaos of huge numbers.

I have hesitated to put much of this journey on the blog because there are some truly cruel people in this world that take a lot of pleasure in using this kind of information in very unkind ways. People are quick to judge and decide what we “should” do without any of the context and experience that this particular journey provides.

Traumatic Brain Injury is a game changer!

I am truly grateful for the people (you know who you are!) who have been there every step of the way. These people have listened to our struggles, helped us problem solve, and given encouragement when we couldn’t find it ourselves. They helped us be patient in the newness and they helped us find a kind gentle place to be where the differences were not an issue.

The transition our family has been through has been huge! The shifts in thought, priorities and perspectives have been difficult for each of us personally and as a collective. Traumatic Brain Injury doesn’t go away and the affect doesn’t stop with Maddi.

Our family is still in a serious stage of change,not only from the accident but the stage of life we are at. We, as parents want to circle the wagons to try and rebuild at the exact time most of our children are ready to leave the nest. The combination has been an interesting ride!

Maddi’s memory is amazing considering the severity of her injury but she has needed to rebuild all of those relationships around her, with siblings, friends and other family members. The past memories are there but they don’t translate into “now” memories. It is like her new brain has to verify the authenticity of those memories and relationships with new experiences. I don’t really understand all the reason why but you can imagine the difficulty of that journey in a family.

We have been extremely deliberate about how time is spent and we have been careful to be sure the environment is conducive for POSITIVE interactions. Traumatic Brain Injury often breeds a negative outlook on life, anger, helplessness and depression. Keeping things positive and slowly building the foundation of learning and relationships helps keep the negativity out of her slowly recovering mind.

When Maddi wrote the words in her song; “Having to relearn everything is hard and kind of frustrating.” That was a foreshadowing of her journey. She not only had to relearn academic and functional skills but…………

  • Emotional aptitude and social and familial structures.
  • Conflict resolution
  • The art of negotiation and seeing from an outside perspective
  • To protect herself from the insecurity and meanness found in Jr. High and High School without becoming bitter
  • To gauge if a person is trustworthy and a true friend without losing her belief in the goodness inside each person
  • To deal with disappointments and manipulation and still find a way to take risks and trust that the world is good
  • To delay gratification and that life is about being content with what IS….. Not what should be.

That is a lot to learn at a time when the struggles are invisible and the expectation is that we should just move on. Time is required and having the best long term out come is the target.

Our goal for Maddi is that she will have the skills, confidence and ability to dictate her own life and choose what makes her happy and surround herself with people who love and accept her without reservation regardless of the residual effects of her Traumatic Brain Injury.

Not only has Maddi worked hard but here is a shout to the rest of the team….. brothers, sister, close friends and family. THANKS! It has not been easy and you all need some recognition for your dedications and patience too! You are EXTRAORDINARY, it has been a TEAM EFFORT!

Are we finished yet….No, but it is amazing to see what can happen in a year!