Persistence: If At First You Don’t Succeed

Success is the result of perfection, hard work, learning from failure, loyalty, and persistence. –Colin Powell

Persistent would not have been a word to describe me. Since I became a mom 22 years ago (wow, that’s a long time ago) it has defined me.

Recently I learned that persistence can lead to success.

Last August Middle Miss started community college.  During her senior year of high school, we met with the Disability Sevices Office to write her Memorandum of Accommodations (MOA). The MOA is the college version of an Individualized Education Plan (IEP).

A major difference between the two is an IEP is a legal document and therefore has to be followed by all school personnel. An MOA is not a legal document but merely a ‘suggestion’. Most schools claim professors work with students to grant the accommodations but if there is an issue it is the student’s responsibility to alert Disability Services for assistance.

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Photo by Pixabay on Pexels.com

We met with a Disability Counselor 6 months prior to the beginning of the Fall semester.  I was very impressed by the process; it was quick and efficient. We provided the required documentation illustrating how the TBI affects learning new information and accommodations that will assist her. We also presented the current IEP the local school system had in place. The counselor wrote her MOA and included all the accommodations requested with one exception. She did not approve extended time on homework explaining that the school did not permit this particular accommodation.  She did approve extra time on class projects, tests, quizzes, and in classroom work. I explained why this accommodation was needed but she still denied it.

We left the meeting pleased since the other accommodations were readily approved.  I spoke to Middle Miss and told her we would see how it goes and if this became an issue we would pursue it at that time.

The semester got off to a good start except for her one credit mandatory class.  The class was taught at a fast pace as it was only held eight weeks rather than sixteen.  Middle Miss began falling behind a few weeks in and she reached out to the professor explaining that due to her disability she needed extra time to complete her work.  The professor denied this request and suggested she speak with Disability Services.  Middle Miss sent an email, followed up with a phone call, and met with the Disability Services Counselor.  The Counselor denied her request for additional time and went on to tell her that she had more accommodations than any other students and asked if she was autistic.

Following this meeting, I became involved.  The school refused to speak with me unless they first heard Middle Miss’ verbal permission.  This development shocked me as we had Guardianship.  The Court determined we could speak on Olivia’s behalf but the school administration refused to honor this.

Our disagreement with the school pursued and we met with the Acting Director of Disability Services, the Dean of Students, and the Program Director.  They all refused to approve the accommodation AND would not explain the reason for the denial.  I appealed this decision all the way up the administration chain to the President of the school.  Again, another denial.

Soon after the President denial, I left a message for a local consumer advocacy group asking if they would do a story on this event.  A few months passed and the group contacted me stating they would not take this issue because they only represented consumer complaints.  I was a bit surprised by their refusal since I was under the impression that students were consumers.  The message suggested I contact the Governor’s Office since there was someone in his office assigned to deal with these complaints.

Concurrently, we had an appointment with Middle Miss’ neurologist and when the doctor asked how school was Middle Miss told her what happened.  The doctor was appalled and offered to write a letter in support of the accommodation.  I decided to go this route first.  The first letter submitted was denied, AGAIN. I sent an email (through Middle Miss’ account) asking why it was denied and what information was needed.

The Counselor responded and I forwarded it to the doctor’s assistant.  Another letter was submitted that took the information needed directly from the neuropsychological report we had provided fifteen months ago.  Guess what?  It was finally approved. The Disability Office had the information all this time if they had only bothered to read the full report.

There were many times during this battle I considered throwing in the towel.  I am so glad I didn’t give up and kept fighting for what

Middle Miss needed.  She is unable to fully advocate for herself and needs our assistance.

This, as well as many other previous instances, has taught me to fight for what I believe in. I will not always win but I can sleep well knowing I tried.

 

 

 

 

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Back To School Preparation

On a whim, I wrote an article for Thrive Global.  The editors send prompts on a weekly basis.  I usually think about submitting a piece if the subject is relative but other things take precedence or I forget.

This week the prompt was anxiety and going back to school.  The subject could be parent’s anxiety, student’s anxiety, a transition to elementary school, middle school, high school, or beyond.

I immediately started writing since this is a subject I have dealt with for a long time with my children.  Don’t get me wrong, I am definitely not an expert but we have had our share of the back to school jitters.  There is currently some of that anxiety in our home since our schools resume next week.

I put my thoughts down, edited, and submitted.  A day letter I received an email informing me that the piece had published.  Cue happy music.

If you want to read the piece head over here.

Federal Interagency Conference on Traumatic Brain Injury

It has been very quiet here on the blog while my attentions have been diverted elsewhere.  In December I worked on a proposal to present at the Federal Interagency Conference on Traumatic Brain Injury  I had never written a proposal and it was more difficult than I had imagined. I was so happy when it came time to hit SUBMIT.

When the email arrived in February congratulating me that my presentation was allotted a 15-minute session I was quite surprised.  The title is “A View From The Front Lines: A Caregiver and Survivor Perspective”, I planned to show how traumatic brain injury affected the whole family, not just the injured individual. Once I wrapped my head around this new information I got my “ducks in a row” and started writing.  The first pass yielded a presentation of 25 minutes.  The hard work began trying to reduce the presentation.  I felt so many important facts had to be deleted. After many edits, a final document was done.

The talk occurred on Day Two of the conference.  The text of the speech follows:

In 2001 I was living the “dream”.  Married to a wonderful and supportive husband, had two beautiful children and was staying home with them in their formative years.  We built a new house and moved in the second week of November.  The tide turned my husband was laid off a few days afterward. 

Three weeks later, my daughters and I were in a horrific car accident.  Olivia suffered a severe TBI and we were thrust into the new world of doctors, rehabilitation, and advocacy.   

Six days after admission I was told that Olivia needed to be transferred to an inpatient rehabilitation center since there wasn’t anything else they could do medically.  The closest pediatric rehabilitation hospital was 2 hours south or 1.5 hours North.  I was in shock and burst into tears. Among other concerns, what were we going to do about our 5-year-old Daughter? She started kindergarten a few months ago, we were living in a new neighborhood, and Mike was unemployed.   

The medical staffs at both facilities estimated she would be an in-patient for 6-9 months.  We discussed the possibility of moving so we could all be together while Olivia was in rehab or moving closer to Mike’s parents since there was a facility in Pittsburgh but ultimately decided to transfer to Kennedy Krieger.  A week elapsed before the transfer since we insisted on second and third opinions and we toured the two facilities which bought us more time.   

This event became the beginning of our advocacy work on behalf of our daughter. 

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The hospital social worker pulled my husband aside at one point and told him that I was having a nervous breakdown since I was crying repeatedly.  He responded to our daughter was in critical condition and another daughter at home and going back and forth to the hospital in order to ensure a quasi-stable environment for our 5-year-old was rough.  I was irate when he relayed the conversation to me. 

 Our time at Kennedy Krieger was fraught with both positive and negatives.  The physical therapist still remains one of my fondest memories if you can have fond memories of your child’s stay at an inpatient rehabilitation facility.  Olivia LOVED dogs and the movie 101 Dalmatians.  Beth tapped into that and she would encourage Olivia to move her limbs and eventually got Olivia walking by using a pull along dog toy.  Olivia couldn’t wait to go to PT so she could play with the dog and other fun toys Beth rewarded her with.   

Again, Mike and I alternated being at the hospital with Olivia and home with Our daughter.  Add to this, he was looking for a job, the holiday season was upon us, and we had to find attorneys to represent us.  We were constantly asked to retell the story of the accident, which I did not remember, and explaining the seating in the car.     

The discharge was December 28, 2001, exactly fourteen days after admission to inpatient rehab, not the 6-9 months estimate we were given.  This was definitely one of many miracles to occur.  Olivia could walk but nevertheless, her gait was very off and we feared her falling every moment.  Luckily she was still small enough that we could carry her up and down the stairs.   

Once home, I started noticing there was something not quite right with me.  I was sleeping a lot and could not be woken easily.   I also noticed I was having a very difficult time reading.  I would read an article in the newspaper and re-read the same paragraph multiple times and still not understand.  It didn’t get any better and finally, I decided to seek the assistance of a doctor. Luckily, the nurse practitioner knew what was wrong and referred me to a neuropsychologist.  He gave me a diagnosis of the Post-concussion syndrome.  I had no idea what that was so I went home and looked it up.  Let’s just say I was shocked to learn that PCS is another term for mild brain injury.  My first thought was when is this nightmare going to end? 

Olivia was found eligible for special education services in January, just 2 months after our accident.  We had an IEP in place soon afterward.   

Mike found a job in February 2002 and returned to work full time.  Though it was a relief financially I was terrified how I would take care of both girls, get Olivia to the various appointments she needed, and heal myself as well.  So many people have asked over the past 16 years how I did it.  Quite honestly, I don’t have an answer.  All I can say is that when your child needs to help you do whatever it takes to get it.   

Once we were home our daughter began playing school with Olivia.  She would sit down at a table we had in our kitchen and try to teach her all the things she needed to learn.  She would have Olivia recite the alphabet over and over and when Olivia got frustrated, which would often happen a minute into this game, our older daughter would burst into tears or start yelling at her that she needed to know these things.  We soon realized Our daughter was taking it upon herself to “teach” Olivia all the things she lost.  She felt that if she could teach Olivia she would be Ok.   

We found our daughter counseling soon after because we weren’t sure what she witnessed at the scene or what was going on in her mind.  She seemed fine to everyone else but we knew something wasn’t right.  She was diagnosed with Post Traumatic Stress Disorder and dysthymic disorder, a form of low-grade depression.  She went through 2 therapists before we found one who worked.  Of course, none of these appointments were covered by insurance, but we really felt that she needed this in order to heal.     

Imagine this, two young children, one has a TBI and requires OT one time a week, speech therapy once or twice a week, and other therapies at least one time a week and every 6 months add neuropsychic testing and neurologist appointments.  The other child has to attend therapy weekly and the caregiver is having physical and cognitive therapies.  Where does “being a kid” fit into this scenario? 

When Olivia was discharged the doctors told stressed the first two years of recovery were the most vital and afterward the likelihood of further recovery declined significantly. We were devastated at her one year follow up. Her neuro-psych testing results were abysmal and the doctor could not understand why her test results had not improved as they should.  I reached out to Brain Injury Services since she was currently on the waitlist for case management services in search of answers.   When the supervisor asked me if she was receiving any therapies and I listed all the things we had in place her response was, “oh, you are doing so much, there isn’t anything else I can recommend”.  On one hand, this was validation that we were doing all we could but on the other hand what was going on with her? 

Another early lesson for us was to only go to doctors with experience in brain injury.  These doctors and therapists were much more likely to have a positive impact on her recovery.   

Remember, this was 2002 and 2003 and there were very few doctors and therapists with brain injury experience.  Add in a pediatric specialty and the number of practitioners dropped significantly.  Fortunately, we lived close to a metropolitan area where we could access Children’s National Hospital and Kennedy Krieger in Baltimore.  I cannot imagine how a child in rural Virginia would fare.  It was not easy to get to Children’s in DC or Baltimore but we somehow made it work.  We didn’t have much choice.  While working on this speech I looked at the number of neurologists available to patients in Wise County Virginia. Ballad Health Systems, the largest healthcare provider in that area yielded 4 pediatric neurologists all located in Tennessee.  There was not any indication if they had any experience in brain injury.  What is a family in that area to do? 

As time went on we continued to fight for Olivia.  The school system was very difficult to work with at times.  We had to be well versed on what they could offer and made sure all the services were made available to her.     

Once both girls were in school full time, I finally felt that I had the time to devote to my healing.  When your child has been severely injured and you are told the little girl you had prior to that fateful day would never be the same, there is a lot of emotional pain.  These costs weren’t covered by insurance either.   

I was diagnosed with severe carpal tunnel syndrome in both of my wrists and had to undergo separate surgeries to correct the issue.  The surgeon later testified that these were caused by gripping the steering wheel so tightly at the time of impact.  Another setback for healing from this trauma. 

Over the years we added and took away a number of therapies including cranial sacral therapy and therapeutic riding. 

Private OT and speech services were discontinued not because she didn’t need it but trying to fit it in was difficult and there was such a high turnover of therapists that it was no longer beneficial.  During this time, I also learned I was pregnant.   

Olivia began resisting the services she was receiving at school.  She is the poster child for “invisible injury”.  We let some of the services go.   

Middle school was a battlefield.  At this point, it was becoming clearer that her injury was adversely affecting her and the way she interacted with her peers due to her processing issues. She started feeling the effects of bullying and the anger intensified.  At home, she would scream at us, slam doors, throw things.  There was one evening I remember vividly when I was comforting her younger sister who was scared of these outbursts and I suddenly had this feeling that Olivia was capable of hurting herself.  Mike and I decided we needed more help.  I kept thinking something was going on inside her brain but couldn’t pinpoint what it was.  We made an appointment with the neurologist who we hadn’t seen since she was six.  As soon as he heard our explanation and examined Olivia he asked if she felt her brain was exploding at these times.  She said she did.  He explained she couldn’t process all the information and her brain was having misfires.  He prescribed some medication and things got a little better.   

During the first month of high school, she fell off a horse at therapeutic riding and had a concussion.  Another set back which impacted the school.  We were referred to another doctor for testing.  This doctor brought so many things into perspective.  She suggested we have a pediatric neuro-ophthalmologist exam her since one of the bleeds had been at the occipital lobe.  This was news to us. I was shocked to learn that Olivia had lost 50% of her right peripheral vision.  The doctor explained that Olivia compensated all this time. I had so many questions which he graciously answered.  

Simultaneously, we began experiencing difficulties with the school and decided to hire an advocate to represent us at the IEP meeting and we wrote letters to the administration.  Her resulting IEP was written with almost all the services she needed and the school became very cooperative.   

We were and still are looking for different ways to help Olivia and the rest of our family.  After mentioning music therapy as another avenue, she finally agreed to attend a trial lesson.   A year later she was asked to join their stage production and tour local middle and high schools.  The show “Behind The Label” teaches empathy through monologues, songs, and dance.  Participants have disabilities ranging from autism, down syndrome, Tourette’s, OCD, Cerebral palsy and of course TBI, but they are not their label.  The profound change we saw in Olivia was staggering.  She blossomed, her self-esteem grew tremendously and she now had a bit of a social connection.   

She also was the first pediatric panelist during the 2017 Brain Injury Awareness Day on Capitol Hill.  A very proud moment for our entire family. 

We sought many resources during the past 16 years.  We found Brain Injury Services and they have provided case management and support for the past 16 years. During a conference early in recovery, I was lucky to meet Anne McDonnell who later became the Executive Director of The Brain Injury Association of Virginia and she has been invaluable to our family.  She has been a resource of information and I stayed in contact with her, eventually serving on the board of BIAV.  I also joined BIS’ Speakers Bureau and shared our family’s story.  These led me to quite a few wonderful people and other resources which also led me to Brain Injury Association of America and to this conference.   

Our family had been through a horrific trauma and we would never be able to return to our previous lives unscarred. But, we all survived!  There could have been a more devastating outcome so how could we bring some positivity back into our lives?   

At that moment we decided to share our story.  If one family could benefit it would be worth it.  We consistently searched for another positive story to navigate our way through ours and could never find one quite like ours.  We began advocating for Olivia immediately and vowed not to stop; 16 years later we are doing all that and more.  I believe it has made each of us stronger and created a stronger family unit in the process.  From the depths of a tragedy, a resolve was born and continues to grow today.  Don’t give up and serve as role models for others to do the same. 

 I was lucky to have the opportunity to attend the conference along with some of the best researchers in the field of brain injury.  This was a great opportunity and one I will cherish.  I have learned much and met other advocates in the process and reconnected with others.

Overall, this was a great experience.  The end of the second day I headed home so I could be there for Little Miss’ last day of school.  She and I have had such a rough year with her teacher and we needed to savor the end together.

 

 

Brain Injury Awareness Month

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The month of March is Brain Injury Awareness Month.  There are so many brain-related events happening near me and other places and I really wish I could attend all of them.  Maybe if I cloned myself that would be possible but that won’t be happening anytime soon.

Last week, I attended the Brain Injury Association of Virginia’s 35th Anniversary Gala and the following day their conference was held in Richmond, Virginia.  I have been in attendance at quite a few of their conferences since 2006 especially over the past six years as a Board Member.  I always learn something new.  The brain is the most complex organ we have and there is so much we don’t know.  Every conference or event I participate in is a learning experience.  I always walk away with a new idea or something to research.  This weekend’s event was no exception.

Later this month, I will be attending Brain Injury Awareness Day  This is an annual event but I have only attended the past two years.  Prior to that, it was difficult to arrange child care for Little Miss and I was unsure if I should bring Middle Miss fearing the day would be too overwhelming and/or over stimulating.  Those with a brain injury know that noises, bright lights, echo sounds, just to name a few, can cause disruptions for the individual.

Last year Middle Miss was on the panel of speakers.  Read more about it in this post.  It still seems so surreal that she was given the opportunity and did such an amazing job.  I will relish that day for a lifetime.

I will most likely attend the day’s events by myself and meet up with other brain injury advocates on Capitol Hill.  I am in the process of requesting meetings with my representatives to share our story and request their support in any legislation relating to brain injury.  One of the issues I really want to address is Social Security Disability.  I will write more on that in an upcoming post.

There are other events during that week but I do not know if I will be able to attend.  Coordinating the family schedule is always a complicated task and involves a lot of juggling.  I was invited to a reception on the evening prior to Awareness Day but it doesn’t look like I will attend due to another commitment involving Little Miss’ Chorus Group.  I don’t want to miss these important milestones because I know how important they are to my children and I also know these events will not be around forever.  I am really trying to live in the moment and enjoy the times as they come.

 

 

 

 

 

 

Group Dynamics

We all want to be part of some larger ideal.  We are looking for our tribe.  That is why we choose to live in communities or select one particular church to join, or a school.  But what happens when the group we have chosen to call our own is not serving us in the way we envisioned.  Or what if one particular member is not adhering to the group “unwritten rule”?

Great things in business are never done by one person. They're done by a team of people. - Steve Jobs

According to Wikipedia group dynamics is defined as “a system of behaviors and psychological processes occurring within a social group or between social groups”.  I have always felt that groups are made of people who either have a common interest, desire, and/or hobby.  I have belonged to many during my lifetime and some have proven very successful while others have fallen away over time due to lack of communication, lives going into different directions or lack of cohesiveness.

One thing I have always looked for in a group is support.  This support could take on many different shapes such as emotional, encouragement, and helpful.  One thing I have always said that could derail these communities is a form of “backstabbing”.  What do I mean by this?  Well, if one group member has a personal motive and refuses to embrace other ideas or values then this will cause the group to splinter.  If a member talks negatively about others the members will splinter into subgroups.

 

I have always felt that groups are there to support one another through hardships and boast each other during the good times.

So what happens when there is a group member who consistently does not encourage or support another?  How does the group survive?  How should members address the situation?

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I am dealing with this issue right now and am at a loss.  I am not a confrontational person by nature.  I have fought fiercely for my children but when it comes to myself I usually back off.  My instinct is to retreat and not say anything.  Eventually easing out of the group. However, this time it feels different.  I do not like how this group is being splintered especially when we all have a single mission.  I don’t want to talk to others and get them involved since I don’t want to be talking about someone, however, I don’t know how to handle this issue.

How would you handle it?

 

 

 

 

Beamer Learns About Traumatic Brain Injury

Sometimes you never know how your connections will work.  A local author and I had become “facebook friends” since we both knew another family who had experienced the terrible loss of their child.  I followed her and noticed she was continuing to write books in the “Tell Me Town” series she created.  The series was born out of her desire to give back to the community and help others.

Cindy Chambers was serving on the board of a local hospital and while on a tour she noticed the fear on both patient’s and parent’s faces as she walked through the emergency room.  She thought to herself, “Oh, I wish there was a book that could explain what was happening to a child in words they would understand along with characters who were relatable”.

She left that day and soon after the book series was born.  The books feature two main characters Kyle and his dog Beamer.  They live in a fictional town and have learned about the emergency room, fire safety, Cancer diagnosis, Diabetes I and II diagnoses, and Alzheimer’s just to name a few.  Cindy works along with the experts in each field to understand the complexities of each issue and writes a story kids will relate to and understand.

About two years ago I had noticed that she released a book about a friend with special needs. On a whim I sent her a message and asked if she had ever considered writing a book about Traumatic Brain Injury.  She instantly replied that she had been asked before and would love to meet so we could discuss.

We met at a local coffee shop and as I expected she was absolutely delightful.  She listened attentively to our family’s story and had some great ideas.  We planned to meet again soon and to bring Middle Miss into the conversation.

Our next meeting occurred at our home and Middle Miss and Mike were brought into the conversation.  We met a number of times to discuss the story and finally had a book.  Cindy consulted with a local neurologist to understand what goes on in the brain when it experiences such an injury and works with her illustrator to bring the characters and words to life.

Ironically, the book was released the day before our 16th anniversary of the accident.  Neither the publisher or Cindy knew the date so I call it serendipity.  Although, this is not Middle Miss’ full story she contributed a lot of her symptoms and stories to bring the book to life.  She was also able to contribute a statement in the book and Mike and I did as well.

We are so grateful for this opportunity as it gives Middle Miss a way to get part of her story out there.  We also had the opportunity to meet the neurologist who helped on the project and Cindy presented Middle Miss with the most beautiful award.  It was truly a very special day.

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The book is available on Amazon.  If you purchase the book we would love a review and I would love to know what you think.

 

 

 

The Birth of Joy

I worked on this piece for a very long time; it had been in my head for so long and took awhile to refine before feeling comfortable about sharing it with the world.

I took a chance on an online site and was thrilled when it was picked up by one and published (https://medium.com/an-odd-mom-s-world/the-birth-of-joy-65901edc74a4).

I submitted to another publication which has both a digital and print copy circulation and was published in their June 2017 issue (http://tbihopeandinspiration.com/June2017.pdf).

It felt so good to get this piece circulated and out to other readers.  As expected, once I was able to get some successes the writing has increased, though not so much on this blog.  I hope to improve the frequency of writing here over the next few months and look for some upcoming links to a website my husband and I developed after talking about it for years.

Let me know what you think in the comments.