Another Mom Lends A Hand To TCB

19 Sep

As The Concussion Blog enters into its second year of existence many have given their opinion of our work here; some negative but a great majority has been positive.  Along with the critiques (always welcome) has come an urge for people to write and share experiences.  This has mainly been accomplished in the comment section of the posts, but others like Michelle Trenum have given time to write and send information. 

Today I would like to introduce another Parent Advocate, Tracey Mayer.  She will be offering up her writings to The Concussion Blog as a resource to the readers, especially the parents out there.  As time allows she (and possibly her son Drew) will be submitting posts for you to read.  I truly hope that everyone gets a chance to read about concussions from yet another perspective.  Thank you Tracey!

TRACEY MAYER — Thursday, September 14, was the three-year mark from the date my son, Drew, sustained a concussion during a freshman high school football game.  My heart was heavy that day, as it is to some extent every day, but I also felt energized on the anniversary; based upon all that has been accomplished in the areas of concussion awareness, education and research since his injury.

Drew attended a day of training for a leadership program at his high school on the anniversary.  One of the topics the students will be presenting to underclassmen is depression.  The leadership group was looking to find someone for an interview, and Drew volunteered because he suffered from depression after his concussion. I find this admirable because re-visiting those emotions is not an easy thing to do.

The Fall and football season is particularly hard for Drew because he misses playing so much.  It breaks my heart when I read his text messages during the football games telling me how tough it is for him to be there and not be able to play, but I know how strong he is and that he has chosen to persevere.  He has found other ways of providing enjoyment to him and others, in doing so; he serves as a role model for not giving up, a very powerful example.

Drew has been completing his college applications over the past couple of weeks.  For some time, he was giving thought to how he would address the shift in his academic performance; dealing with his grades dropping substantially after his injury.  Granted, he went from numerous C’s as a freshman and sophomore to making the “A Honor Roll” second semester junior year, the C’s affected his grade point a great deal.  Think about it – there is no way for the colleges to know why his grades were what they were without Drew explaining it to them.  The only chance he gets to do that is through his personal statement or essay—and then he has to hope that someone actually reads it.  That is a frightening thought, not only for him but me as well.

Drew is on a 504 plan at school, which allows him 50% more time on exams.   Once he decides which college he will attend, we will have to pursue accommodations for him.  I am not looking forward to that because it took two years of fighting to get academic accommodations for him in high school, and three separate requests for additional time on the ACT test before he was approved.  As much of a battle as it was with the ACT, I am thrilled to know that they finally recognized his injury as a disability, that is huge.  I will say, however, that I am still shocked that I had to write the letter for his neurologist to submit to the ACT supporting his case, and her nurse copied and pasted it on their letterhead because the doctor did not know what to write.  That is CRAZY, and begs the question – How many other students have been denied accommodations because their parents were not able to get the support they needed?  What if I wasn’t capable of writing that letter for his doctor?  He would not have been approved for extended time on the ACT.  Many doctors are educating themselves about concussions and are taking an active role in developing procedures and policies, but a great number of doctors are still flying blind.

Drew is a senior this year, and, once again I had to approach each of his teachers at the beginning of the school year and explain what he has gone through and the cognitive issues he still struggles with.  I should not be the one having these conversations with his teachers and in most cases, the teachers have little or no knowledge about the consequences of concussions.  I would love to see a training module for teachers so they can be educated about concussions and the implications when returning to the classroom.

As a mom I am very concerned about the college curriculum because the majority of a students’ grade is based on exams.  Drew still struggles with exams, as they provoke migraines – particularly in math and science.  For comparison, in high school his grades are based on: homework, class participation, projects and exam.  So, if he performs poorly on an exam there are plenty of other opportunities for him to make up for it.  That won’t be the case in college.  Another consequence Drew has had to deal with going forward to college; he had intended to apply to the college of business, but knowing that he will struggle with high-level math he has decided to go in another direction.  He does not know which direction yet, but he will no longer be able to be a business major.

I emailed the school board president and superintendent of our school district a few days ago, sharing with them the new return-to-play and academic recovery policies that have been implemented in Prince William County, Virginia.  Although our administration has return-to-play procedures in place, we need to do more, particularly in the area of academic recovery because there is NO academic recovery policy at all– NOTHING.   I am going to keep screaming until someone listens!

So we battle on…..we keep fighting for Drew and for others, with the hope that other students and families will not have to endure what we have.   I keep telling myself it is a process…..one step at a time.  Drew’s last line on his college personal statement was “My mom and dad tell me that when one door closes another one opens, and I know great things are in my future.”  That warms my heart :)

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12 Responses to “Another Mom Lends A Hand To TCB”

  1. Michele Simpko September 19, 2011 at 22:04 #

    Dear Tracy Mayer,
    I feel that your concerns for Drew’s education is very commendable. I was wondering if you had given any thought to an online education. He can get the support any student would need begining his or her college experience. I know we want our children to experience college in a traditional environment; however, online is an alternative for some of the problems he may face. Whatever decision Drew may make I wish him all the best. He sounds like an extrordinary young man.
    Sincerely,
    Michele Simpko

    • Tracey Mayer September 20, 2011 at 16:39 #

      Hi, Michele

      Thank you for your thoughts. Since his injury, Drew has always wanted to remain as “normal” as possible in school. He truly enjoys being in that environment. He has such an outgoing personality, and he has wonderful relationships with his teachers. Kind of known as the class clown, in a respectful way, and enjoys entertaining everyone :) I would expect this will continue in college. I also know he wants to be part of the Greek system and follow in the footsteps of his older brother by joining his fraternity.

      Although part of me is uneasy about the whole college process, I know he will find his way. He has many gifts, as all children do, and I believe he will find the best use for his.

      Thanks once again for your kind words – it means a lot.

      Warm Regards,
      Tracey

  2. Don Brady, PhD, PsyD, NCSP, September 20, 2011 at 02:53 #

    Thank you Ms. Mayer for speaking candidly re the impact of a sport-related concussion on the often forgotten and ignored student component of the student-athlete.

    Based on some of the concerns that you have raised, I wish to call your attention to an article that my wife, Flo, and I authored and was published by NASP (National Association of School Psychologists) this past June. In this article we discuss suggestions for returning to play, school, home, and socializing for the suffering athlete with hopes that the family and school system considers and utilizes these suggestions and legally required services to best meet the multiple needs of the injured student. When convenient, your feedback regarding this article would be appreciated.

    In addition, witin this NASP article the importance for implementing individual student accommodations such as a 504 plan and personalized counseling formats are discussed along with recognizing the 3 essential areas of necessary brain rest: physical, cognitive and emotional.

    The article is entitled Sport Related Concussions and may be found by Googling “Don and Flo Brady, NASP, sport related concussions”. (Dustin…if appropriate…could you provide a link to the NASP article?).

    Finally, I look forward to reading you and your son’s input on this Blog.

    I will leave you with this experience to reiterate the importance of your writings on this neglected area.

    When discussing sport-related concussions with 2 special education directors…one encouraged a further development of aiding the student component of the student -athlete while the other very matter-of-fact stated…”What does sport-related concussions have to do with the provision of special education services.”

    Again….life is sometimes stranger than fiction !

  3. Dustin Fink September 20, 2011 at 07:13 #

    Post forthcoming regarding your comments Don.

  4. Tracey Mayer September 20, 2011 at 19:58 #

    Dear, Mr. Brady

    I’m still wiping away the tears after reading your article. It’s such a raw reminder of all that we have been through. I remember standing on Michigan Avenue in downtown Chicago shortly after Drew was injured. I had just come out of a council meeting with our Mayor, and my phone rang. I stood there in my professional attire and answered the call. It was Drew’s neurologist’s office – the first of 3 that he has seen – returning my call. I was asking for documentation to substantiate Drew’s injury because, up to that point, the school had nothing on record to legitimize his injury. The nurse told me she would not be able to give me anything because they “just don’t do things like that.” Interesting how we can easily get a note from the doc to excuse our kids from gym for practically a hang nail, but I could not get anything from his doctor to support his concussed condition. I know my voice got louder because people around me were staring (kind of), and I’m sure I was trembling. By the end of our conversation she agreed to send me something, but made it very clear that this was not protocol. The letter I received was one sentence long –

    “Andrew Fernandez is currently being seen in our office for post concussion syndrome.”

    Geez, thanks.

    I copied the paragraph below from your article:

    A negative MRI or CAT scan finding does not mean an athlete did not sustain a concussion or have any brain injury. Neuroimaging techniques, neuropsychological testing, and computerized neurocognitive screenings are not always sensitive to detecting subtle brain injury. Thus, a false negative finding may be obtained due to the lack of sensitivity of the instrumentation employed. In order to avoid false negative findings, continued efforts need to be sustained for developing more sensitive and precise neurocognitive evaluative instrumentation and medical techniques to assist with this process.

    Drew had neuropsychological testing about 10 weeks post injury, which means up until that point NOTHING was being done to help him academically. He and I explained to his doctor before his testing that his main complaint at that point was forgetting what he learned in the classroom by the time he arrived home, and studying in the evening only to forget everything by the next day. He would come home from school and have to re-learn what he learned in the classroom that day. He would study for hours at night and draw blanks the next day during an exam. Despite knowing that he was mainly struggling with longer-term memory, his doctor tested him primarily in a question/immediate answer format. I told her the testing was not consistent with his complaints, but that fell on deaf ears. Consequently, his test results came back showing no significant deficiencies, and he was not granted any academic accommodations.

    I became the liaison between Drew and his teachers, trying my best to educate them about his injury. He looked fine, and let’s face it, having a parent make excuses for a child flunking exams can definitely be an eye roller. If I was Drew’s teacher, I’m not sure what I would have thought. Fortunately, all of his teachers worked with us, and they allowed him to take his exams in sections, as well as repeat the ones he failed. Somehow, by the grace of God, he got through that year with nothing lower than C’s, although we knew that if his teachers had not granted him that flexibility he would have failed.

    Despite his poor performance and my constant contact with school, Drew more or less went through the same stuff sophomore year. At the one year point, he repeated the neuropsych tests, and the results were more or less the same, with a bit of improvement. So, once again, no accommodations. When I was applying for ACT accommodations for Drew, I asked this doctor if she would put something in writing stating that the testing Drew received was not necessarily consistent with his complaints, therefore the results could be misleading. She refused.

    During this whole process I learned that there is no existing neuropsychological tests specifically written for concussed patients. I also learned that some of the neuropsych docs are lazy and do not want to deal with having patients test on multiple days because it’s a pain in the butt, so they don’t do it.

    This was the year (sophomore) that one of Drew’s teachers said something that still makes me sick when I think about it. She was a substitute for a semester because Drew’s teacher was on maternity leave, and his teacher did not inform the sub about Drew’s condition. He put his head down on his desk during class for a moment one day because he was up late the night before studying. His teacher asked him why his head was down, and he answered her. She didn’t hear him so she asked him to repeat what he said. He replied saying he couldn’t remember to which she replied “There are doctors who can help you with problems like that.” She took him out in the hallway and demeaned him some more. Well, you can imagine the conversation I had with her the next morning.

    I understand that it is disrespectful to put your head down on your desk during a class, and she had every right to question him, however if she had been aware of his condition she most likely would not have, and she certainly would not have made the comment she did in front of the entire class. Keep in mind that our school ranks #6 in the state academically, so we are not talking about a less than average school.

    In the spring of sophomore year Drew began having migraines, which were provoked by intense focusing. Math and science (chemistry) were torturous for him. It was at this time that his counselor and the school psychologist allowed us to apply for a 504 plan. It was approved for his junior year, and now he is allowed 50% more time on exams. Although this can be helpful, it certainly is not a fix-all. He still suffers from migraines, although not as often (thank God).

    I copied the paragraph below from your article:

    Unfortunately, at the present time, functional recovery from a concussion typically focuses on when an athlete is resuming participation in sports, ignoring how well the student part of the student-athlete is able to adequately function within the classroom, home, or social setting.

    AMEN. Seriously, how can it be that nearly all of the attention is on return-to-play, with little or no attention to academic recovery? The Prince William County, Virginia, school policies I referred to in my original post include an academic recovery policy. I know that their school board has been contacted by many school districts nationwide who want to know more, and that is wonderful!

    I think your article is fabulous, and I have already shared it with several people, including the Sports Legacy Institute. I am also going to send it to our school district Superintendent. He’s going to get so sick of seeing my name in his inbox……oh well :)

    Thanks for sharing…..

    • Don Brady, PhD, PsyD, NCSP, Licensed Psychologist and Nationally Certified School Psychologist September 22, 2011 at 11:54 #

      Dear Ms. Mayer,

      Flo and I appreciate your kind and sensitive response re the SRC article and also the sharing of more of your and Drew’s story. God’s blessing along with our educational and experiential learning allowed for the creation of this article. We are grateful too for NASP and the editor who provided his guidance preparing this article.

      We are also pleased that this information is filling a very practical need for both the suffering concussed student, family members and others who know and are involved personally or professionally with a person who is suffering from the many adverse faces of a concussion.

      • Tracey Mayer October 14, 2011 at 12:38 #

        Dear, Dr. Brady

        My apologies for the delayed response. I’ve been traveling a lot. Your article definitely serves as a helpful tool from a different point-of-view, and I will continue to pass it along whenever I can.

        Drew was accepted to his first choice college, so he (we) are thrilled. Now, we start the battle of getting accommodations for him in college. Making my first call this afternoon, and I will be posting more over the weekend.

        Thanks once again to you and Flo.

        Warm Regards,
        Tracey

    • Liz Olson February 5, 2012 at 14:24 #

      Thank you for sharing your experience. It has brought tears to me eyes as I hear the words of another mom walking this path. My son experienced a concussion a little more than a year ago as a freshman ont he wrestling team. After six weeks of only being able to attend school part time and agreeing to a “pass/fail” for his classes that trimester, the academic battle began. We started with a school district “health plan” that was largely ignored. Teachers did not facilitate the accommodations, did not return e-mails, and did nothing to keep my son from falling through the cracks in spite of our efforts as his parents. And the most sickening part is that his father is a teacher at this school. The school has made no effort to help with the child of their own colleague! We had hope the summer would give him much needed brain rest to fully recover before another school year began. By August, it was clear that this was not the case. The children’s neurotrauma clinic that was monitoring his progress began strongly recommending a 504 plan. They made sure we were fully armed with doctor’s recommendations and a neuropsychologist’s report BEFORE school started so we could get the 504 in place. At first the school, ignored us. Who cared if a former honors A/B student was now getting C’s in non-honors classes? We were told that he needed to be performing significantly lower than the most average students in his entire class of 800 students. With some persistence they finally agreed to proceed with a 504 hearing in October. A Large part of that would include the recommendation of his teachers who had only known him for one month. Seriously????? I did extensive reading about the intricacies of the 504 law. The more recent amendment that forced them to consider his condition without the aid of medication (he takes daily medication to ward off headaches and confusion as well as medication to sleep at night) seemed to be the one thing I could use to force their hand. And it worked! Unfortunately they granted him the 504 based on the fact that he does not sleep well (without medication). It does reference that he is recovering from a concussion but does not list that as the primary factor in granting the 504. Finally, by the beginning of November (and after an entire trimester of waiting), we had a 504 in place. And what good has it done us? NOTHING! we e-mail teachers to get spotty responses. I attend conferences to be told by teachers that “I don’t accept late assignments”. At which point I have to “remind” the teacher that his 504 guarantees him extended time on assignments. When I checked his grades online this weekend, I discovered that in the last two weeks he has about 20 missing assignments in four different classes. Have we received any communication from any teachers regarding this? NO! Our conversation with our son regarding this was yet another difficult one. His first response is confusion because he does not know how he got this point (again, I might add). Then it turns to frustration and anger. It’s a pattern we repeat over and over again. And each time it breaks my heart a little more.

      I intend to arm myself with copies of your blog when I insist on yet another meeting with administration. Maybe they can see that I am not the only mom who is fighting for her child. Maybe they will see that my son is not flunking because he is lazy or stupid. Maybe they will care enough to finally give him the support he needs to feel understood, supported, and important. Please keep sharing your experiences and your fight because there are those of us moms that desperately need to know we are not alone!

  5. Michael Hopper September 20, 2011 at 21:01 #

    Tracey, don’t let that deter you! Keeping sending them. You know what they always say,” squeaking wheel gets the grease!”

    Dustin does an excellent job with this blog and we as athletic trainers can try to educate all day long, but it’s people like you who make a huge difference. Ones who have been there and understand what it’s like to suffer through these things..

    Keep up the fight!

  6. tracey mayer September 21, 2011 at 13:22 #

    Thanks, Michael!

    Don’t worry…..I am a fighter, and I won’t give up! Fortunately, I have a rather large circle of contacts, and I fully intend on tapping into them to help spread the message.

    Personal stories are very powerful……. if we can help make a difference it’s well worth the fight :)

    Tracey

  7. Tracy September 29, 2011 at 19:34 #

    Dear Tracey,

    Thank you for your work! You and the others here are paving the way for us “new concussions moms.” I am already a few steps ahead because of your help!

    Thanks,
    the other Tracy

    • Tracey Mayer October 14, 2011 at 12:32 #

      Hi, Tracy
      It is my pleasure. Please call if there is anything more I can do to help you :)

      Warm Regards,
      Tracey

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