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.

close up of apple on top of books

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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Word of the Year

As most of you have probably heard over and over since December one of the trends is to designate a word of the year.  I originally didn’t have a plan to do this but after giving it a lot of thought and reading how other’s word of the year guided them through the past I decided to consider what word I would use.

Since I am trying to focus a lot of my time on finishing a draft of our book (read more here) my first thought was “NO”.  The reasoning behind this was a valid reason to say no to any further commitments.  If I said that was my word then I had the perfect excuse to not commit to anything new.  It all sounded great to me until I read other’s words.  I know, I know, I shouldn’t be worrying about what anyone else is doing or worry what others will think, etc… but, I still can’t stop thinking that way.  I think “no” sounds negative and would that come off to others as a “Debbie Downer” attitude, etc.  It wouldn’t be intended as a negative but that is what I perceived others would think.  Again, I know I shouldn’t worry what is inside someone else’s head but that is my genetic makeup.

So, after much thought and guesswork, I came up with another word that I thought would help me yet not sound so negative.  I am hoping it will help steer me in the right direction and give me a reason to not accept every request I receive to help out with this or volunteer here, etc.

My word for 2018 is PRIORITIZE.  

I am giving myself permission to PRIORITIZE what is important to me and my family.  It will not help me or my family to volunteer to run a committee for the school.  In fact, if anything it will only hurt my goals and probably the well being of my family because I will be too stressed.  I can say no to the lunch date since I need to use that time to write. The more I think about this word the more I have embraced it.   I consulted Wikipedia and the definition is the action that arranges items or activities in order of importance.  

A perfect fit for me!  I will try and update how my word of 2018 is working for me.  I am hoping it will give me enough permission to do the things that are most important to me and the ones I love.

Do you have a word for 2018?  If so, I would love to hear how you came up with yours and how it is working out.

 

 

 

 

 

 

 

 

 

EXCITING NEWS?

pexels-photo-46274.jpegHappy New Year to all of you!  Yes, I know I am a week late.  Sounds like the story of my life.

Mike and I have been trying to put together a book for quite some time.  Some of it came out of trying to keep a record or journal of our family’s story and survival through the abyss known as Traumatic Brain Injury.  Whenever I would speak at events for either Brain Injury Services, Inc. or the Trauma Survivors Network  I would be approached by audience members who kept commenting that I should write a book.  Apparently, a story about a mom and daughter both have brain injuries from the same incident isn’t very common.  Go Figure!

Anyway, we have put the bare bones together and I was getting inpatient wondering if we had something publishable so I contacted a hybrid publisher.  At the time I didn’t realize what a hybrid publisher was but it is between a traditional publishing house such as Random House and self-publishing.  A hybrid asks for some money upfront from the author but the work is still owned by the author and the company helps with editing, typesetting, printing, marketing, and distribution.

I was very surprised when we were offered a contract to go ahead.  We have decided to spend a little more time refining the book over the next few months before going ahead.  There are so many things to still figure out such as how the 3 misses will take the news.  This will especially affect Middle Miss!  We want to lay out the story as honestly as we can and some of the things we have to share she may not like.  I guess we can cross that bridge when we need.

If anyone has any experience publishing a book I would love to hear about it; both the good and bad.  I am a big believer in the more you know the better the decision.

 

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.

 

 

 

 

I Have A Life

I am a late follower to the podcast, “Serial”(https://serialpodcast.org/season-one) and while listening to the first season I heard a great quote, “I have a life.  It may not be the life I envisioned for myself but it is a life”.  

For those of you who have never listened to this podcast, the quote was said by the main character in the first season’s crime, Adnan Syed.  He was convicted by a jury of his peers in the death of his former girlfriend.  

Adnan was arrested at the age of 17 and has never left the correctional system since that fateful day in 1999.  He turned 18 while incarcerated and has spent his entire adult life in a prison; only leaving to attend court.  The podcast chronicles the crime and the conviction of Sayed while trying to determine if he if was mistakenly convicted.  Sayed has claimed innocence from the beginning of the story.

Here is someone who is serving a life term in prison with all of his freedoms stripped away and yet he claims that he does have a life.  He has embraced his religion, taken his imprisonment seriously, and tried to be a role model for other prisoners.  If he can attest to the life he has made for himself then I must learn to accept the life I have been handed.

Too many times, I get frustrated by the uncertainties being the mom to a special needs child.  It is difficult at this time of year to be on facebook looking at all her peers getting excited to graduate high school and getting all kinds of accolades including multiple college acceptances.  I am happy for all these kids but I can’t help feeling envious.  We never knew what her potential was since it was stolen from us that fateful day.  

lifetitleI remind myself quite frankly that she is alive, healthy, and striving.  It may not be the life I envisioned for her or for myself 18 years ago when she was born a healthy baby but we have made the best of what we were handed.  We will continue to strive forward and reach whatever goals we can and live a great life.  

Thank you, Sayed, for reminding me what life is really all about.

 

A LITTLE POSITVITY CAN GO A LONG WAY

500_f_66251322_xsgw73bmx0qkw6prt205dcuhuma7ks88Our society is drowning in negativity.  Everything we hear in the news is filled with despair, sickness, fear, and so forth.  No wonder so many of us walk around day in and day out feeling like we have a big black cloud hovering over us.  Couple that with the weather we have been having on the east coast and it is no wonder that we feel so blah!!

My children have all, at times, come home to me pouring out the horrible moments of their day.  As a school counselor once told me about Middle Miss, “she walks around school with this bright cheery smile on her face and will never let any school employee know how she truly feels.  But once she steps off that school bus and sees her Mom all the despair of the day comes tumbling out as she can no longer contain it.”  When I heard this 9 years ago I finally felt validated.  I had been telling the school how miserable she was but they didn’t believe me since she never showed any signs of distress while she was there.

It got so bad that I would have to mentally prepare myself for her arrival so that I did not drown in all her negativity.  It still happens at times and I try to get her refocused.  Yesterday, I realized that I need to institute “positives” in our family.  Little Miss has been coming home for the past few weeks telling me how awful her day has been.  I knew the last 2 months of school would be challenging for her since her teacher, who she adores, is on maternity leave but I didn’t think it would be this bad.  She is having a hard time at since the class is misbehaving more due to a substitute teacher, the environment is loud and the routine is different.  She, like my other two and my husband, likes routine and consistency.  When the routine is off for more that a day or two her balance is shaken.

When Big Miss and Middle Miss were younger we instituted a “game” at the dinner table where we all had to say the worst thing that happened during the day and then follow it with the best thing that happened.  What a difference it made!  We all had an opportunity to blow off steam a bit but then immediately follow it with a positive which helped all of us end on a happy note.  Somewhere along the way we stopped doing this but yesterday I decided we have to to reinstate this “game”.

I don’t know about other parents but I get hung up in my children’s moods.  If they are happy it makes me happy but if they are sad or upset I can also take on their feelings which does not help me at all and I am sure it doesn’t help them either.  I am learning that when I am sad I need to stay with the feeling and let it run it’s course so I can then move forward.  My old way was to stifle it and bury it with a project but it kept resurfacing again and again.  I am now trying to feel it so I can move forward and be done with it.

I will let you know how this works for our family and if you try this let me know how it goes for you.

 

 

Silver Linings

Sometimes while in the throes of trauma we don’t have the ability to notice the silver linings in the clouds. I learned this in the aftermath of our accident; the realization that we had so many wonderful people who came out in support of our family.  We received cards from friends and families, pictures from children we knew as well as children who heard our story and wanted to do something.  Soon Middle Miss’s hospital room was decorated in vibrant colors and images.  While in a coma the doctors recommended that we play soft music that Middle Miss enjoyed listening to as a way to reach her and hopefully stimulate her brain.   A truly wonderful friend found a CD that included songs with her name in it. What a truly wonderful gift.

Former neighbors came by and dropped off bags full of snacks for both Mike and I because they knew from experience when a child is in the hospital parents do not want to leave to get something to eat in fear that something will happen when they are not “on watch”.  Home cooked meals were delivered to our home for Big Miss and her Grandmother who was helping out and to the hospital for us so we didn’t forget to take care of ourselves.  Friends and neighbors were offering to help take care of Big Miss so her routine could be as close to normal as possible.  They understood that a 5 year old still needs a steady routine no matter what.

Our advocacy for Middle Miss began on day one in the hospital.  Prior to this, I was not very assertive.  I wasn’t a pushover but I didn’t always speak up when I should.  Well, having your child in a coma will definitely bring all that out.  Mike and I started advocating for her immediately.  We questioned the doctors, demanded answers when our questions were ignored, fought her transfer to another unit until she was off the ventilator, demanded second opinions, and the list goes on and on.  Through this I learned how to become an advocate and little did I know that I would become such a huge advocate for her and others suffering from brain injury.  Prior to our accident we didn’t know anything about brain injury and became quick studies to ensure she received the help she needed and deserved.

During the 10 long days Middle Miss was in the hospital and prior to entering inpatient rehabilitation so many people approached and told me how strong I was.  I thanked them but thought deep down that I had them fooled.  I later realized how accurate they were. Friends and strangers saw something in me that I was unable to recognize.  I don’t know if I would have ever known my strength had I never been through a crisis like this.

Along with learning to advocate, I became a public speaker which shocks me to this day.  I never enjoyed speaking up in class and anytime we had a project that included a presentation I would rush through it just to get out of the spotlight.  The first time I was asked to tell my story I jumped at the chance.  I was nervous but confident in the information I had to pass on and each time I told the story it got easier and easier. There are times that I broke down, and it continues to happen today 14 years later, but I know my story is powerful and use it as a tool.  I am educating my audience about brain injury, the long term effects for both the injured and her family, the special education system, and many other aspects of this ordeal.

Marriages can be very fragile or they can be as tough as nails. Luckily, we were able to see that our marriage was tough and became stronger because of this as we worked as a team to get Middle Miss the proper care and help.  She made incredible progress once we entered the rehabilitation center and those around us thought it was due to the strong family unit we had.  Eventhough we chose to go to one that was in another state and further from our home we made sure that one of us was with her at all times.  We never left her side and continually pushed all the therapists and doctors to give her as much treatment as physically possible.  My heart breaks for all the children who don’t have this support.

I don’t talk about my religious beliefs or spirituality very much but during this time I also learned about the power of prayer and forgiveness.  A great number of people mentioned that we were in their prayers or their religious institution had put us in their prayer circle. For many years afterwards I would meet someone and once they heard our story they would confide that they prayed for us.  How awesome is that?

A few years after our accident I was sitting in church listening to a sermon about when all of a sudden I felt this rush of forgiveness for the man who caused the accident.  It was the most liberating feeling.   I was still sad.  I was still angry.  But I no longer felt revenge and the forgiveness allowed me to move on and be the best mom, wife and woman I could be.

Of course, I wish this tragic event never happened but I can’t take it away.  Instead I choose to move forward and help others navigate through their own stories.