Friday, November 25, 2011

A Year of Progress

It is black Friday, the anniversary of “that day” as Maddi put so beautifully in her graduation song.  For those of you who have been with us from the beginning, thank you for following along and praying for us; and for those just finding this blog enjoy the journey. We are blessed by a loving God…. and amazing family and friends.

There is no way to even begin to describe our feelings today so I won’t even try.

 Grateful……. Blessed………Loved

  A picture is worth a thousand words.

Where we have been:


November 26,2010

  • 3 weeks in the Pediatric Intensive Care Unit at Primary Children’s Hospital
  • 2 weeks in Transitional Care at South Davis
  • 4 weeks in the Neuro-Trauma Unit/ Inpatient Rehab
  • 65 days in the hospital and that was the easy part.

Where we are now:


November 2011

  • Walking, Talking, Thinking, Singing, Laughing
  • Ballroom Dancing
  • Writing, Reading, Learning
  • Continuing to improve!

Looking and Feeling Good,  Our Life is blessed!  Challenging, Yes………….  Impossible, NO!

Life is in the now and the future, not in our past!

Thursday, November 17, 2011

Schooling and Reason

I have had many questions regarding Maddi’s schooling in what she is doing, how she is recovering and why she is only in school part time. I hope my post about her testing cleared up most of those questions but I don’t think it adequately described what school looks like for Maddison. Just be warned that education is my passion and it is multi-faceted without a brain injury. What we are doing now is intrinsically related to what we have done previously.

Before I share, I want to be clear that I firmly believe that each parent is divinely equipped to know and understand the needs of each of their children, disabled or not. Just because we chose this route doesn’t mean that we believe that it is the only way to go. Our choice is just that….. ours. When it comes to home school vs. public school, it seems to bring out the monster in people needing to validate their own choice.

I am or was (I don’t know which) an Educator for 12 years in public school. I believe that education is a very personal choice. As an educator I have a better than average understanding of the complexities of public school and different learning environments. So, if you are from the home school camp…. I love you. If you are from the public school camp…. I love you. Let’s not look for reasons to be divided! Please don’t categorize my explanation as lack of support for the public school system. I am a realist and know what can be done in the public school environment given the available resources.

The following quote sums up very well how important personal perception is for ANY student, not just Maddi.

Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”
Albert Einstein

That being said here is what we are doing with Maddi’s education and our reasons.

Maddi goes to public school for two class periods each day at the Junior High. Last spring Maddison went to school for 4 class periods. Fatigue was her worst enemy then and it still is now. Last year after spending most of her day at school Maddison had very little energy or focus left to do any homework. The amount work coming home was enormous.

Maddi is and always was a high achiever and a dedicated student. We would spend hours studying. She would never give up; she had to complete it all and it had to be correct. Many times the work did nothing to help her retain the information but it was assigned so she would do it. Maddi was able to expertly summarize and analyze the same information both verbally and in an essay. In terms of her recovery, the writing did more for her learning by strengthening her executive function and organizational skills.

She was so tired after being at school and completing the work load that there was little time l to continue working on the remediation we had to do at home. She actually ended up with pneumonia during the last 2 weeks of school and I am certain that the illness was a result of pushing her too hard and too fast.

During the summer Maddi continued working on her math and reading skills. She did amazing! She went from 4th grade math curriculum to 7th grade math curriculum in those few short months. It took a lot of work and dedication on Maddi’s part. While everyone else was taking it easy, Maddi was hard at work for three hours each day.As summer was coming to a close we spoke to Maddi about how she felt and what her goals were and what she thought she could handle.  We were willing to support her decision.  She had a really good handle on her own learning and she was able to articulate the stress of going to public school in regards to her brain injury.  We decided a couple of elective classes would be enough to foster and maintain friendships and for her that was the only perk of public school.

The conflict between being Maddison’s mother and her teacher is a little crazy but it works out fairly well. Luckily, Maddi is extremely driven to improve and is not afraid of hard work.  Thank heaven I have a Bachelor’s degree and almost enough graduate credits for a master’s degree in Education. My graduate credits have been specific to language, learning and brain research which comes in pretty handy if I do say so myself. I have the skills to target specifically the areas that Maddison needs to develop and use data to determine the next steps. We can move as quickly or  as slowly as necessary. I have always been more concerned with retention than a letter grade; mastery of the skills is the only grade that counts.

Maddison gets one-on-one feedback in real time when she is making errors and she can correct them on the spot. It is so much more effective than doing an entire assignment incorrectly only to get the feedback several days later when she can’t recall the cause of the errors at all.  Maddi’s struggles in her math are based in her impulse control, sequencing and procedural or executive function skills. Her writing is slow to start but with the correct pre-writing organization to provide the right structure she does amazing. Learning new and connecting old information is going well but still takes dedication on her part.

At home, we are focusing on Math, Science, History and Writing. We spend an hour doing each of the first three topics and then use writing as an accountability and critical thinking piece for Science and History. Writing essays, comparisons, analysis and summaries based in the content taught in those two subjects provides plenty of information and ideas for writing. Providing her learning in this way also increases her retention and understanding as well.

It is difficult to definitively determine where the holes are in her memory so we started with basic Science with the plan to move into biology. In History we are doing Ancient World history based on the Utah State Core Curriculum for 9th grade students.

It has been great fun for me to learn the ancient world stuff because I have absolutely no recollection of learning about it in school but that could be related to age. It has been almost 30 years since I was in 9th grade.

It takes a bit of preparation on my part to have read the information and come up with a plan before I teach Maddi. Our debates, conversations and essay topics are appropriate to the history as it has been presented not just from my own perspective.

Maddi is able to read and understand more complicated information than her actual grade level. She is a slower reader than she was by a huge measure but the fluency rate or speed doesn’t change with less complicated text. She reads at the same pace regardless if she is reading Junie B. Jones or Homer’s Odyssey. Her understanding is amazing and not impaired at all.

We are using textbooks that my other children used in their AP history class at the high school. I chose that route mainly because the book was already available and as I was researching textbooks, the common consensus among educators and textbook reviewers was; going slower through a well written, concise upper level text is better than cruising through the watered down versions used in Junior High and High School especially if the reader has advanced reading skills which Maddi has.

This is what Maddi’s day looks like:

  • 7:30- 8:45 Get Ready, Breakfast, Journal, Reading
  • 9:00-11:30 Public School
  • 11:30- 12:15 Lunch and Break
  • 12:15-3:15 Science, History, Math and Writing at home

Of course there are cognitive breaks planned throughout that time to prevent cognitive fatigue from setting in.

Reasons for Home School

  1. One on one specific instruction
  2. Reduced stimulation and distraction
  3. Automatic feedback (extremely important)
  4. Individual pacing
  5. Breaks can planned without missing any instruction
  6. Less fatigue, more time, extra- curricular activities, more time with friends
  7. No need for accommodations by teachers at public school, they have their hands full already!

The biggest factors used to help us decide on Maddi’s schooling were:

  • Effectiveness of the learning during public school time. 
  • Could the school provide the opportunities to rewire and strengthen newly developing pathways.
  • Available appropriate and socially subtle supervision to prevent incorrect pathways from being developed.

I know that seems really technical but practicing a new skill over and over again incorrectly is less than desirable for a regular kid but for student with a brain injury, you run the risk of never being successful in teaching the skill correctly.

The other main reason for doing the majority of Maddi’s school at home came from Maddi’s preference. Prior to the accident she always liked school. Maddi couldn’t wait to go back after returning home from the hospital but she quickly recognized the reality of the discrepancy between what she needed and what was available at the public school. She still loved going to school but she is an advanced student and they love to learn. I suspect the discrepancy will continue to lessen over time but this recovery time cannot be squandered in an ineffective way.

For the math buffs out there here it is; which is greater 50% or 90-100%?

Public School Setting and Pace

50% retention and understanding= unacceptable! If that was all Maddi could do, I would be fine with that but she is capable of far more.

Maddi understands and retains 50% of presented grade level (improved from 30%) material at the given pace at school.

50/100 = a less than educated student.

She required extensive re-teaching to filter through superfluous material and to rectify the confusion created from too much information in one setting and cognitive fatigue.

Home Setting and Pace

90-100% retention and understanding= exemplary

Using the same curriculum Maddi understands and retains 90-100% of grade level material as presented over a 2 day period.

Even 90/100 is a well-educated student.

I know that other children struggle in school and the classrooms are filled with kids getting less than 100%. I also know that the schools are doing an amazing job for most students. Maddi’s situation doesn’t fall into any general category. Her injury requires specialized instruction that even Special Ed. is ill equipped to provide. Teaching her two or three years below her grade level won’t ever help her develop the skills to perform on level, which she is capable of. Boredom and apathy would be the result. Deleting half of the requirements to accommodate her pacing would only leave her lacking. That just leads to more holes in her learning and it sets her up to be ill prepared for the next classes she is required to take.

I am dedicated to long term outcomes not just the temporary ones. From the time I saw Maddi laying on that hospital bed with a machine keeping her alive, I had a long term perspective. I knew that if God granted us a miracle that this journey would not be easy. We would  be required to make decisions that would not make sense to people who didn’t understand and there are no short cuts. We were looking at a road less traveled.

Robert Frost’s most famous poem illustrates beautifully our decisions for Maddi. I had no desire to travel the road we are on but we “diverged in the yellow wood” that day. I know the choices we make right now will…… “make all the difference”.


The Road not Taken

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

Ultimately, I knew we were in God’s hands and with our hands cooperating with HIS we could do anything. We recognize the great blessing we have been given and we know that it comes from a Heavenly Father who loves us and “ He wants her to succeed”.

There is a reason Maddi returned, supporting her recovery to help her reach her full potential, brain injury aside, is our God given charge………regardless of the condition of the road.