Author: aforrest

Texas Brain Injury Alliance Conference, Thursday Oct. 18, Austin TX

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I wanted to get the word out about the Texas Brain Injury Alliance Conference here in Austin next week, on Thursday the 18th.

Its from 9:30 to 3:30 at the University of Texas’s Pickle Center.

Dr Cindy Ivanhoe from Houston’s TIRR Memorial Hermann Hospital will give the keynote.

She’s amazing.  She has been working in Brain Injury, TBI and Stroke for well over a decade.

For those who are not familiar with Houston’s TIRR Memorial Hermann Hospital, its one of the Hospitals that conduct federally-sponsored research on TBIs.   Its a Model Systems Hospital.  These hospitals are at the forefront of best treatment.  They use evidence-based treatments.  And they contribute to improving treatment as well as collecting data to improve treatment and outcomes.  For a long time, TIRR was the only Model Systems Hospital in Texas.    (Now we have one in Dallas/North Texas area too.)

Many people with concussion do not realize that hospitals like TIRR will now treat them for concussion and traumatic brain injury:

–even if the patient was not diagnosed immediately after the injury happened,

or

–even if they were not diagnosed with concussion or traumatic brain injury in the ER or by their primary care doctor.

Its very exciting to see this BIG BIG improvement in the treatment of concussion to get people well!

I have learned that its most cost-effective for patients to be treated directly after the concussion happens.  Its most cost-effective because one gets attention and best -treatments immediately to take advantage of positive neuroplasticity.

However, its much better to be treated than not-treated if the patient is continuing to experience symptoms.   What I am seeing is that more of the institutions that know how to get people better are offering their services to get people back to their lives and their work after concussion, even if the person doesn’t get to the right resources immediately.   This is a huge improvement for those of us like me who had to fight hard to find services after concussion even though I couldn’t lead my life or work after my injury and needed healthcare and support services to get me to the place where I can function well again.

Also I am seeing that Brain Health is being recognized as being so important to living and working.

Fortunately, more and more medical professionals are realizing that getting the diagnosis for concussion correct and treating persistent symptoms after concussions appropriately is in everyone’s best interest.

And, some doctors go even further and believe that treating for concussion appropriately will reduce the possibilities of any long term increased degenerative issues such as other brain injuries, or brain illnesses like CTE.

But I digress.

Here’s more information about the other presentations at the Conference.

This year its much easier to register online.

Even with my concussion-related technology issues, I was able to register online!

See you there!

#traumaticbraininjury #TBI #concussion #stroke #TexasBrainInjuryAlliance #USBIA #BrainInjuryAssociationofAustin #BrainInjuryAssociationofAmerica #DellMedicalSchool #UniversityofTexas

2018 Brain Injury Conference

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2nd Annual Pediatric Conference on Brain Injury in Austin, Sept 8

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2nd Annual Pediatric Brain Injury Resource Fair & Conference – 9/8/18

TeamLuke/Hope4Minds and the Brain Injury Alliance of Texas have teamed up again to host a 2nd Annual Pediatric Conference in Austin this year.    I am so bummed that I will be out of town and cannot be there.

I attended the one last year and learned a great deal from the Speakers as well as from the many knowledgeable and caring providers of a variety of support services.  It was hosted at Dell Children’s Hospital yesterday and a huge introduction to the caliber of the thinking about the best for Children.  I still recall Dr Clarke’s admonition to “always take a “mild” neurological injury seriously”.  Especially Traumatic Brain Injury.  Traumatic Brain Injury includes concussion.  His phrase was such a powerful opposite to what most people think about concussion since they often infer like I did that a “mild” TBI means its not serious and will go away soon.   That does happen for many, but better to take it seriously and see if taking it seriously leads to full recovery with the help of good doctors and providers, than vice versa.  I wish my path to recovery had included an informed team from the beginning how could help me learn and also reinforce this message to me and those around me.  But I digress.

Here’s the link for the Conference.   I wasn’t sure if my new learning about how to get a link on my blog, but yahoo, I got it!   https://www.hope4minds.org/2nd-annual-pediatric-brain-injury-conference-9-8-18/

Look at all the different sponsors of pediatric brain injury services.   Also, look at the providers who are talking about positive neuroplasticity and how to encourage it in a growing brain.    If a doctor tells you there’s nothing we can do after concussion, or just rest and return to activity and you are noticing that your child still has symptoms–doing homework is different, they are more emotional or oppostitional than they were the day before, they cannot find things they normally do, or their eating is off, or just something is different, then find someone who can give you guidance.

I have more than a passing interest in children’s concussion.   I have taken a deep dive in to trying to get recovery for a concussion in my adult life.  I have succeeded in this journey but its taken a lot longer than I expected because finding knowledgeable doctors who know how to get you to the right services is not always easy with concussion.  You don’t know what you don’t know, and then because of the concussion, my communication and awareness skills weren’t working in my favor.   So I have a lot of history and knowledge about how not to take “no” for an answer.

And what I have learned about kids concussion, is that its not nearly the easier path that I expected!  Even given what I knew, I have still found it tough to navigate my son’s journey.    At the time of his first diagnosed concussion at age 6, there was little research for that age.   And yet, if a concussion isn’t resolved for the young children, then one faces the increased risk of another concussion and a snowball effect from there.

And don’t get me wrong, separating out what part of any change in behavior a child behavior is because of a concussion versus all the other things that a child goes through as a normal part of life is not easy. After my son’s concussion in the 24 hr period he was being watched for, he threw up.   Was it the fast food or the hit on the head?   With the doctor, Dr Bell, we concluded fast food.   After the second concussion, was it that he was acting out because he was mad at me or the doctor, or was he acting out because that was a symptom of the concussion?  With the Nurse Practioner at Sports Safe, Emily Woodward, we concluded symptom.

Fortunately, I have found knowledgeable and caring doctors for him and overall we have learned so much more about concussion through research that the best doctors knowledge has moved forward considerably.   We are still on our journey with him however so its a work in progress.

I am pleased to have heard yesterday that the Centers for Disease Control and Prevention have released guidelines on children’s Concussion in last couple of days based on a huge research effort.  You can take these guidelines to your doctor.

https://www.cdc.gov/traumaticbraininjury/PediatricmTBIGuideline.htmlhttps://www.cdc.gov/traumaticbraininjury/PediatricmTBIGuideline.html

When my son had his first concussion, there were no U.S. guidelines.  The first thing I did after getting home from the Doctors office was to look at the Children’s guidelines from the Ontario Neurotrauma Foundation.      Experts there recommended a 48 watch period rather than the 24 hours period my Doctor had suggested.   So I chose to be more cautious.     http://onf.org/documents/guidelines-diagnosing-and-managing-pediatric-concussionhttp://onf.org/documents/guidelines-diagnosing-and-managing-pediatric-concussion

 

One last thing.  I was able to get the Conference in our elementary school bulletin.  And my school nurse sent it out to her boss who sent it out to all elementary school nurses in Austin.  Increasing awareness one step at a time!  Yahoo.

 

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4th Federal Interagency Conference on #TBI #Concussion is next week!

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Excitement is Growing about the Federal Interagency Conference next week in DC.  And its growing on Twitter!

I am going and presenting.  I am so looking forward to seeing other presentations and meeting old friends and colleagues (professionals and survivors and those who love them).

Its been my Twitter feed that has really engaged me about the conference these past couple of weeks.

Why Twitter helps me

From my Austin Tech Accessibility Community, I have learned to use Twitter to reach my audience.

My Twitter handle is @aplasticbrain.

I will be tweeting at the Conference as will many others.

Please connect with me!

I love Twitter because I can connect easily with others interested in recovery after concussion, traumatic brain injury, acquired brain injury, stroke, professionals, clinicians, state and national brain injury organizations and friends and families.   I get inspired by others tweets.   I can connect people easily through their handle.

Using Twitter also doesn’t fatigue me, overwhelm me or disorient me like some of the other social media.

According to one of my many tech mentors here in Austin, Sharron Rush, at @Knowbility, Twitter is accessible on the backend to people using screen readers and other assistive technology.  Using twitter is an opportunity for me to use most accessible social media to TRY to reach others like me who have difficulties using technology after the injury.

Sharron’s insight into what Social Media was best for me with a cognitive disability has literally changed my life.

It opened up a new world for me.

With my own cognitive disability, however, I have to admit I have learned I am a very slow learner on some accessible technology features of Twitter.  But that’s another whole blog post.

The other thing about Twitter that I like is that it forces me (in a good way) to learn how to say something quickly, focus on the topic sentence, think about what’s most important to my audience and overall learn more brevity every time I use it.

Since I originally lost the ability to find the topic sentence in a paragraph after my injury, and have regained that ability slowly but surely with both rehab and practice, practice and practice, using twitter has been a good way to continually practice skills I learned in rehabilitation when I eventually got it for my concussion.

 

A Brief Introduction to the Federal Interagency Conference

 

I know how much I have gotten out of my experiences at the last two Federal Interagency Conferences.   As Doug Katz, MD and Former President of the American Congress of Rehabilitation Medicine says, the Conference is one of the best Brain injury Conferences in the World.

 

That’s a lot coming from someone of his stature who attends the caliber of conferences he attends worldwide as well as his involvement in Rehabilitation Medicine research, publications, clinical practice and his support for people with brain injury.  Twitter : @dokatz

 

The Conference brings together professionals, clinicians, researchers, brain injury organizations like the Brain Injury Association of America (BIAA), the U.S. Brain Injury Alliance (USBIA), Brain Trauma Foundation, other Foundations like the Ontario Neurotrauma Foundation (Canada), and OneMind and, of course, researchers, policymakers, grant administrators and others from all of the Federal Agencies to showcase their work.     I could go on and on about others who attend, but want to just give a flavor.   (I had my wonderful person who’s been helping me with tech put the link in for me at the end of the blog, since I am still learning how to do links in WordPress.

 

 

The Conference happens every 5-6 years, so it brings together work that has been done or built on during that period.

 

I have been lucky enough to attend the 2nd and the 3rd.   By the time I attended the 2nd one, I knew many of the presenters because of my volunteer work at BIAA, attending Brain Injury Awareness Day on Capitol Hill (with BIAA), my own speaking, my work with WETA Brainline through another amazing advocate and mentor, Theresa Rankin (@ruralmilitary), and because I knew of the incredibly helpful work that members of the American Congress of Rehabilitation Medicine (ACRM) did (thanks to BIAA, WETA, Theresa (@ruralmilitary), Dr Bigler, Drs Robin Green (Toronto Rehab, Toronto, Canada) and Margaret Weiser (Parkwood Hospital, Ontario, Canada @DrMWeiser), the Ontario Neurotrauma Foundation and many, many others.

 

I have a lot more to say about what I got out of the previous Federal Interagency Conferences.

 

But for now, let’s just say that I got so much out of the 2nd one, that I made an effort to attend the 3rd one right before we moved from DC to come to Austin in 2011.

 

I literally stopped packing for 2-3 days because it was so important to me to attend the Conference before I left DC.

 

At the 3rd Interagency Conference, I still remember Patricia Dorn, PhD stopping me to tell me how important knowing my story was to help her in her research.   It meant so much.

I have tried to reconnect with Dr Dorn when I first found her card, after our move back to Austin turned my world upside down.

I was unsuccessful as her email bounced back.

I really appreciated her telling me the value of my lived experience and my advocacy to her research.  It’s always good to hear that my hard work and hard fought learned lessons makes a differences in other lives.  It was also such a meaningful comment since I did research pre-injury and now was anecdotal evidence to frame and inform research.  And its comments like these that keep me going when the going gets tough!

Come to find out in preparing for the upcoming Conference, that Dr Dorn is now in a more important role at the Veterans Administration.   In preparing for the Conference, I found her card and suddenly this memory of the 2nd Interagency Conference when she first pulled me aside appeared plain as day.

And then, once that memory was reconnected in my brain,  I was able to connect more dots to the present.   Yahoo!

She had been at my table at the ACRM Annual Conference in Atlanta and when we spoke she told me she knew who I was.

I am so glad to consolidate that memory now.  Once the right cue helps locate it, the wires connect and fond memories connect too of all those professionals and colleagues and friends and sometimes, family, who, like her, are supportive of the new learnings that come from lived experience    Yahoo!

Excitement is Growing

Last week, several people who attended Brain Injury Awareness Day were tweeting and retweeting about the Conference.   It got me really really excited about the my world opening up further at the Conference.

Others from BIAAs Advisory Council that I work on were tweeting:

@momof3missess (Kelly Lang), @amyzellmer (Amy Zellmer), @Cavinb and @pboswo1

 

And folks from awareness day who I met for the first time in person and who’s handle I think I have committed to memory or I can easily find:

@alcolvin (military) @pinkconcussions (Katherine Snedaker) and @seeclearlyLTSC

 

And I just found BIAAs Advisory Council Member, Catherine Brubaker’s handle @CLB1AZ and need to get her handle in to front of mind (a memory issue I am trying to overcome)

I am looking forward to meeting Catherine B. for first time!

 

Twitter for the Conference this week

 

Here are some other Twitter Handles of organizers, sponsors and attendees of the Conference that you might want to follow on Twitter about the Conference:

 

@TBIConferenceIA   (for the TBI Conference)

@ACRMretweets (for American Congress of Rehab Medicine)

@biaamerica (for Brain Injury Association of America)

@OntNeurotrauma (Ontario Neurotrauma Foundation, Onatario Canada)

 

Here are links to the Conference, links to Kelly Lang’s talk, Amy Zellmers talk and my talk on Behalf of our Advisory Council at BIAA.

Link to the conference page

Link to Kelly Lang’s talk

Link to Amy Zellmer’s talk

Link to Anne Forrest PhD Talk

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Moms Connecting Moms

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Two Advocates for Brain Injury Awareness Day under an Umbrella on A Rainy Day on Capitol Hill
Two Advocates for Brain Injury Awareness Day on a rainy day on Capitol Hill

 

This is one of my favorite pictures from Brain Injury Awareness Day.   Its a picture of Stephanie Freeman and myself, Anne Forrest, with the U.S. Capitol in the background.

Amy Zellmer, Stephanie Freeman and I were trudging in the rain from the Senate Office Buildings to the House Office Buildings on the other side of the Capitol.  It was cold, rainy and windy.

Amy Zellmer and Stehanie thought to stop to get a picture.  Amy is the creative person behind the camera.

The three of us had started the morning attending Coffee with Senator Ted Cruz with a fellow amazing advocate, Cherl Kempf.

Cheryl and I are from Texas and Amy and Stephanie came to support us.

Then the 3 of us went to Senator Cornyn’s Office to connect with them and drop off information.

Stephanie is a advocate as an adult for brain health for Children in Georgia.     She had a Traumatic Brain Injury as a child, and feels called to raise awareness for children to give them the awareness and education that she with she had.

She and I have a special bond for several important reasons:

–She invited me to come back to Brain Injury Awareness Day in 2017.     I had organized and been of Awareness Day for 5 or 6 years since about 2005 perhaps.   I had spoken on the Congressional Panel in 2011.  However, when my husband and I moved back to Austin, Texas with my then 2 year old, I needed to take time to be a Mom.  That being said, I continued my leadership of the Brain Injury Advisory Council and thus maintained my phone connection with other national advocates.   As much as I loved being part of Awareness Day,  I did not have time, energy or funds to get there.   I encouraged staff at the Brain Injury Association of America (BIAA) to put up pictures and information and use social media to reach out to those of us outside the beltway and to connect to advocates who were advocating in their States.

–She invited me back in 2016 with an insistent voice, so she gave me a year to get it on my calendar and she followed up with me gently to remind me she wanted to meet me there.   She wanted more than just a phone connection through our Advocacy group.   She wanted the connection that comes with meeting and getting to know someone in person.

–She has always asked about how my son is doing.  She has a son herself.   And she has extra strong sensibility and empathy for the experiences of a child’s life.    This is truly a gift and a calling that comes from her experience own experience as a child with lingering effects from a brain injury that most people did not understand or did not recognize.

–Stephanie follows up with me in a friendly way on how my son is doing.  And, 2 years ago, my son had his first diagnosed concussion with lingering effects.   It was devastating for me when it happened.   My husband and I have used our awareness and knowledge finding appropriate treatment for lingering symptoms after my concussion to help him find the resources he needs to read, do math word problems, and reach his potential at school and on the playing field.   And I always knew I could reach out to Stephanie when I needed support, which I did!

–In October last year, I was invited to tell my story as well as my son’s story to CDC staff who have been studying pediatric concussion as background for their required Report to Congress.

–I was honored to tell my story and then my son’s story to staff at CDC to put our faces on our concussion journey and share our experiences.

–Anne Glang PhD, who was an author of the Report to Congress, was also visiting that day.   She used my son’s story and his recovery to generalize issues from the Report.

–As a pre-injury researcher, I know how important it is for researchers to have faces to connect what they learn from the literature to people’s experiences.

–I also know that in concussion in particular, anecdotal evidence is so important.     This is especially true when measuring the number of people with concussion with confidence has been so difficult.

–I believe the CDC report is an important document and that the work that CDC and other researchers have done to inform this document will influence how we think about and measure adult concussion.

–I am so glad that the CDC Report is out.   I brought back copies from the CDC booth at the Awareness Day Fair to make sure people in Austin had.

Here‘s the newly released Report to Congress on The Management of TBI (and Concussion) in Children from the Centers of Disease Control and Prevention:

https://www.cdc.gov/traumaticbraininjury/pdf/reportstocongress/managementoftbiinchildren/TBIRTCExecutiveSummary.pdf

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Congressional Brain Injury Task Force

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I will be in Washington, D.C on Tuesday, March 20, 2018, for Brain Injury Awareness Day organized by the Congressional Brain Injury Task Force. This is a bipartisan group of Congressional leaders from both the House of Representatives and the Senate. Representative Bill Pascrell, Jr. (D-NJ) and Representative Tom Rooney (R-Fla.) are chairing this task force.

I spoke on the Congressional Briefing Panel on the value of rehabilitation. Some may remember this was the year that Representative Gabby Giffords was shot. Other panel members were Military leaders and the wife of Captain Patrick Horan, who was recovering from a bullet to the brain. Captain Horan is now inspiring me by running races and building homes for over 1,000 veterans. Here is a picture from this day with Representative Bill Pascrell, Jr. (D-NJ):

I started attending Brain Injury Awareness Day in 2003. By that time, I was volunteering for the Brain Injury Association of America (BIAA). I wanted to be with other brain injury advocates and tell my Congressional Members the difficulty I was having getting help after my brain injury. Eventually, with the BIAA, I organized others with brain injuries and those who love them. Thank you to Texas Representatives Lloyd Doggett (D-TX), Sheila Jackson-Lee (D-TX), Gene Green (D-TX), Pete Sessions (R-TX), and Beto O’Rourke (D-TX).

It is the goal of the bipartisan task force to increase its membership. A few fellow advocates, Sheryl and Megan Kemf and Amy Zellmer, and I will be having Tuesday Coffee with Cruz (R-TX).

I will also be advocating with the offices of Representative Rodger Williams (R-TX) and Senator John Cornyn (R-TX) to hopefully influence them to join the task force.

 

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Concussion and Cognitive Accessible Design Meet Up @ SXSW2018

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I organized a meetup at SXSW 2018 to bring together people interested in concussion or cognitive accessible design or both.

Glenda Sims, at Deque, started the conversation by describing all the changes she has seen from her first time meeting me 16 years ago. She attended my first speech after my injury. I spoke on accessibility of the internet for people like me with cognitive disabilities. The class was taught by John Slatin, PhD, then director of The University of Texas Center for Technology and Learning.

My speech language therapist, Liz Joiner at St. David’s Rehabilitation Hospital, identified that speaking was my pre-injury skill that I could still do post injury. She encouraged me to write a speech about what my brain injury was like for me at that time. During my rehabilitation, many practitioners and friends helped me both write and practice that speech. I practiced, practiced, practiced!

Back then, I had to read the speech and I didn’t know what I was saying unless I was reading it. Look at me now!

We had in attendance people with brain injuries from military events, sports injuries, accidents, and heath conditions, those that love and support them, medical professionals, government officials, Texas Brain Injury Alliance and Brain Injury Association of America representatives, The University of Texas faculty and students, and researchers, all from both the US and Canada.

Thank you to Sharron Rush with Knowbility for sponsoring food and beverages, thank you to Glenda Sims with Deque for emceeing, and thank you to Hiram Kuykendall with MicroAssist for recording and closed captioning this video!

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Virtual Panel How Persons with Brain Injuries Use the Web

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On December 1st, 2017, I participated in a virtual panel on how people with brain injuries utilize the web.

I am honored to be part of a panel of world wide experts.

These are the three things I found most interesting about this experience.

  1.  David Fazio and I are both leaders who have had a traumatic brain injury (TBI). David is CEO of Helix Opportunity, Inc. and incredibly successful, even after having endured a TBI as a teen. He figured out how to work around his deficits. He’s got a lot to teach me!
  2. Neither David nor I identify as having a disability, even though we both are indeed disabled.
  3. Other experts on the panel, a person with autism, persons with blindness, and persons with other conditions, articulated many commonalities with David and me, even though we had very different disabilities.

Many thanks to Deque and particularly Laura Goslin who moderated the panel.

Here is Laura’s summary and a link to the virtual panel. Enjoy!

Virtual Panel How Persons with Brain Injury Use the Web

Virtual Panel: How Persons with Disabilities Use the Web

To commemorate International Persons with Disabilities Day, our panelists discussed how they use the web as a person with a disability.

Summary

This webinar was intended to create awareness around web accessibility, or how persons with disabilities use the web. This webinar is a great introduction for people who are new to accessibility but want to learn more. Our panelists went over the various scenarios they encounter while using the internet. Millions of people have disabilities that affect their use of the web. Currently, most websites and software have accessibility barriers that make it difficult or impossible for many people with disabilities to use the web.

The theme for this year’s International Persons With Disabilities Day (IDPD) was “Transformation towards sustainable and resilient society for all.” In the era of digitalization, technology provides a means to such innovation. It is essential that the Web be accessible in order to provide equal access and equal opportunity to people with disabilities. Too often, adaptation and dissemination to technological innovations widen the gap towards equal access for persons with disabilities.

Panelists:

  • Anne Forrest, Ph.D., has been recognized as one of the nation’s leading patient advocates for people with traumatic brain injury. She lives with persistent symptoms from a mild TBI that she received during a June 1997 car accident and continues to recover.
  • David Fazio is the founder and president of Helix Opportunity, a business and organizational development consulting firm that facilitates inclusion the $8 trillion consumers with disabilities demographic in commerce. David survived a softball sized hemorrhagic stroke, from a brain aneurysm on August 2, 1996. He has been active in many disability organizations and initiatives ever since.
  • Jamie Knight is a Senior Accessibility Specialist at BBC. Jamie enjoys mountain biking and is never seen far from his plush sidekick, Lion. Jamie’s areas of expertise include accessibility, JavaScript, HTML, CSS and Autism.
  • Tim Harshbarger is an Accessibility Consultant at State Farm Insurance Companies. Tim has been visually impaired since a young age, he is very passionate about accessibility and believes it should be a part of the web development process.
  • Jeanine Lineback is a Senior Accessibility Consultant at Deque. The crossroad between people and technology is Jeanine’s passion, she is highly involved in the community and is visually impaired.
  • Sandeep Tirumangalam is an Accessibility Consultant at Deque. Sandeep has been working in the field of accessibility since 2013 and is a person with low vision.
  • Birkir Gunnarsson is a senior UX and Digital Accessibility Expert at BB&T. Birkir was born and raised in Iceland, attended Yale University, and has been blind since the age of 5.

Virtual Panel How Persons with Brain Injury Use the Web

 

 

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Austin TX Elementary School Resources For Concussion

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I am excited about National Concussion Awareness Day, Sept.15.
I am excited about it because we have needed a day that draws awareness to concussion.
I am also excited about it because it was created by a high school girl, Brooke Mills, and her mom. They saw the need for grassroots awareness.
This day is now endorsed by the Brain Injury Association of America (BIAA) who is partnering with Brooke.
With all the talk about concussion in organized sports, you might think that there is already a day to raise concussion awareness nationally.
But, you’d be wrong!
And, parents with children who don’t have a concussion through organized sports often have an even more difficult time finding resources despite the increased sports awareness of concussion in sports. Or, they don’t think sports-related doctors or resources can apply to them.
These issues have big implications for “Return to Learn”, for example.
A recent University of Pittsburgh Medical school poll shows many shortcomings in basic awareness and understanding about concussion in the U.S.
Austin Independant School District (AISD) has been putting into place to help bridge that gap for students.
Namely, AISD has been working to educate parents and thus their children about concussion in the schools.
I am most familiar with the work that its being done at the Elementary school level this year because of my son’s concussion two years ago. And their have been improvements in the resources for parents since then.
It goes without saying that its tremendously important that our children are treated for concussion so that they can get well quickly and return to their lives and learn. Not to mention that appropriate treatment also reduces the chances of more concussions when a concussion is unaddressed. According to (adult) Sports Medicine Doctor, Dr Pyron MD, the chances of having another concussion go up exponentially with each concussion when a concussion is not treated.
You might wonder why our school district is only recently rolling out elementary school resource. I was told that AISD rolled out resources for middle and high school students FIRST. They did this before doing so in the elementary schools, because organized sports traditionally have happened at older ages.
My Journey into Pediatric Concussion Recovery with my son.
Like I said, my own journey into finding resources for pediatric concussion recovery started two years ago.
My then-6 year-old son took a face plant on concrete two years ago during an informal soccer game at school.
At that time, the School Nurse knew to call his parents to pick him up to get him into to see his MD quickly.
But it was not very calming to my dear husband when he took the call from the School Nurse. My son had hit his head on concrete. It was terrifying to know that much. Its a call that is hard to get and raises any parent’s anxiety, no matter what.
My husband and I knew that our MD, Dr Anna Bell, had spoken at my son’s preschool about pre-school concussion when we asked her to, so we knew she would know what to do next. Dr Bell had also done work at Dell Children’s Hospital, and was an expert on pediatric concussion.
When my son did not get well quickly, I needed more resources. Because of my own injury, recovery journey and advocacy skills, I knew something about what to report, what to ask for and how to talk with him about his symptoms as well as how to advocate for what he needed when his symptoms did not go away as rapidly as we were hopeful that they would.
Through my journey getting to the best resources for him when his symptoms did not go away quickly, I have learned that there are big differences in pediatric concussion recovery versus adults.
The pediatric concussion field is changing rapidly. In some cases, what I thought I knew about kids recovery was completely opposite of what research is showing now and good knowledgeable Doctors are practicing.
It’s good news that AISD now has more and better resources for parents in 2017.
This year’s concussion education sheet from AISD is even more helpful than the one they had last year. Its got the 10 symptoms of concussion and what to do if you observe them, as well as Dell Children’s Logo with AISD’s logo.
Its very calming to know Dell Children’s Hospital is involved as they have a great reputation on children’s concussion.
In addition, this sheet is an important resource to empower parents to be involved in getting their child to the right medical attention and watching them since parents know best what changes their child is showing, if any. Often times, because parents know what’s normal for their own kids, they can bring to a MDs attention useful information about changes in behavior.
I am passionate about getting children and adults with concussion to the right resources so that they can get the help they need.
Based on my own experiences and more recent experiences helping others here in Austin, again, getting the help one needs is often not as easy as one might think even in 2017!

Resources and events in Austin this Fall for Adults:

 

  1. An organization to help children with concussion and acquired brain injury in Austin. (Acquired brain injury means means the injury happened after birth),

https://www.hope4minds.org/

They runs a resource and support group and a larger Vision for more support groups.

2. Pediatric Conference on Oct. 14 sponsored by Hope4Minds with the Brain Injury Alliance of Texas

Making Connections: A Pediatric Brain Injury Resource Fair & Conference

Register for Pediatric Conference now!

 

3. Brain Injury Alliance of Texas conference Dec 2 (info is not yet on website).

Last year there were several panels on concussion/TBI.

4. Concussion Health Conference upcoming in July 27-29.

https://www.concussionhealth.com/2018-summit-home.html

I will write another post about resources in Austin I have used and gotten benefit from.
A disclaimer: I am trying to get this post out today and I am having a difficult time with using the computer, myself. If you are having a difficult time with my links and accessibility features, I will update as soon as I can to address these issues!
Lastly,
Here are the resources that Austin Elementary Schools are giving to parents in English and in Spanish.

Head Injury Eng-Spn(1)

Read More - Austin TX Elementary School Resources For Concussion

Carole Starr speaking on Resilience

BIAA Webinar on Resilience with Speaker and Advocate Carole Starr

aforrest 1 Comment

Tomorrow, Carole Starr will be speaking on Resilience after Brain Injury on BIAA’s Butch Alterman Webinar.

The Webinar will be on Wednesday, Sept. 13 at 3 ET.   Its FREE, but you must register.

The BIAA Webinar showcases leaders with brain injury.

Carole will be talking about Resilience.    Resilience is an important life skill, especially after brain injury.

After 2 devastating hurricanes in Texas and Florida, this is a timely topic.

Myany people are talking about and learning what it means to be resilient in the face of very challenging situations right now.

Carole speaks about what she’s learned about resilience through her own life experiences after her concussion/brain injury.   She has keynoted several State Brain Injury Association Conferences on this topic.  She’s led a group of others with brain injury at an organization called Brain Injury Voices of Maine.   And she’s just published a book on the topic called “To Root and To Rise”.

I am very fortunate to get to know her through her work this past couple of years on the Brain Injury Advisory Council at BIAA.   I have learned tremendously from her forceful advocacy.   She is an amazing and compassionate leaders.   She is really good at putting her finger on an issue, and then is able to articulate it well.  Her great problem solving skills flow from there.

Directions of how to register are here:

http://www.biausa.org/education/altermanwebinars

The Webinair lasts about an hour with Question and Answer.

Once Registered, you can go back and listen to the webinar again.

 

 

Read More - BIAA Webinar on Resilience with Speaker and Advocate Carole Starr