The 4th Federal Interagency Conference on Traumatic Brain Injury (https://interagencyconferencetbi.org/) was held in Washington, DC June 11-13.
This was my first experience writing a proposal. Such a huge endeavor and I was so happy when I clicked "SUBMIT". Quite frankly I was surprised when the proposal was accepted and I compiled a 25-minute presentation. Editing it down to 10-12 minutes was very difficult. I felt that most of the nuts and bolts were sacrificed but I didn't have much choice.
The presentation was Tuesday, June 12th and none of my fears were realized. There were attendees in the room and they asked thought-provoking questions. A copy 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 afterwards.
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.
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 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.
Discharge was December 28, 2001, exactly fourteen days after admission to in-patient 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 Post Concussion Syndrome (PCS). 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 afterwards.
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 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 afterwards the likelihood of further recovery declined significantly. We were devastated at her one year follow up. Her neuropsych 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 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 at 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 A Place To Be's 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 (BIS) and they have provided case management and support for the past 16 years. During a conference early into recovery, I was lucky to meet Anne McDonnell who later became the Executive Director of The Brain Injury Association of Virginia (BIAV) 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 (BIAA) 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.