It was suggested that I repost this here from someone at the welcome thread.

I have a daughter that acquired a severe enclosed brain injury about 18 months ago from an auto accident. The doctors seem amazed by her recovery. From her initial prognosis to where we are today, I’m astounded. She was diagnosed with a severe diffused axonal injury. The doctors described that she had brain shearing throughout about 80% of her brain. She had two tears in her brain near the brain stem and an indeterminable amount of damage due to low oxygen saturation levels. Aside from the brain injury, her lungs collapsed, she had damaged organs, internal bleeding, and a few broken bones. The fact that she survived the physical injuries was a miracle. I was told around 90% of survivors with her type of brain injury never wake and those that do still had quite a grim prognosis. Looking at my daughter's recover, it's hard to describe her recovery as grim. She is a huge inspiration to me and many others who have shared in her journey. I try to be vigilant about seeking out all the information I can find to help my daughter progress to the best of her abilities.

Currently, she has significant deficits in memory and cognitive abilities, but is doing much better than I ever imagined. I would love to hear from others with a loved one with a severe diffused axonal injury. Since 90% of survivors never wake from their comas, it’s been very difficult to find others with a recovering patients to converse with to share strategies to help my daughter cope and potentially recover even more. She’s still in rehabilitation therapies, but I’m not sure how much longer that will last since her progression has slowed down so much. I look forward to any information that can help us and sharing any information I have that may help someone else!

Angel,

Sorry to hear of your daughter's injury. I have a friend who suffered a similar injury except he was in a coma for three months. It took him two years to learn to talk and walk. That was twenty years ago next month. He is fully ambulatory. Talks with just a bit of a struggle. Is a Master at backgammon. Travels the USA competing in Veterans' Paralympics. His busted body limits his full mobility.

You can likely look forward to a different personality. She is the same inside by will struggle to relate to others in the same way. You desperately need to read Dr Glen Johnson's TBI Survival Guide. It is online at www.tbiguide.com and available for download to print out at http://www.drakecenter.com/file.axd?...vivalGuide.pdf

Most important is to be non-reactive to her struggles. She has enough negative reaction inside her mind. Support her. Accept her as she is now. This is the new her. Help her accept her current condition. Try to treat her like a normal person. Limit the chaos in her life. Loud noises, visual clutter, voices. Too many voices at the same time can be overwhelming to most TBI subjects.

The lower her stress levels, the better her brain can heal. Stressful events can set her back days or weeks. Too many visitors for the holidays or just a get together can be stressful. Try to learn to recognize when she has become or is becoming overwhelmed. You will likely see it in her eyes. Her gaze will start to look vacant. Observe her environment and try to help her avoid such an environment in the future. She may be able to talk with friends for a few minutes but not a half hour. This is normal.

Let us know about her difficulties. We are a diverse group of TBI and mTBI people with many life experiences.


My best to you and your daughter.

Hi Mark,

Thank you so much for suggesting these readings. I will make sure to check into them.

I'm so glad to hear your friend is leading a productive life! It sounds like he's been through some great struggles of his own. My daughter's speech was one of the last things to return. It took a year before she could put an understandable sentence together and it remains her most noticeable problem.

We're very blessed in this my situation because her recovery is phenomenal considering the amount of damage to her brain. I know most in her situation aren't as fortunate as her.

She is very verbal when she is irritated so it's quite easy to tell when people need to back down. I encourage her to speak her mind when people are bothering her. It helps prevent violent outbursts. Before her accident, she was highly intelligent and gifted. She's still incredibly intelligent; it's just hard to make others see that now because of her speech problem and processing issues. She is also bipolar so it's hard to tell what causes outbursts now. I've had years of practice on not overreacting to situations and calming her down. This experience has been very handy over the last year.

I have tried various things to help reduce stress for her and I'm still working on finding things that work for her. She seems stressed a lot and refuses to talk to counselors. All she says to them is...I don't want to talk to you. I've respected that and took her out of counseling. She's 18 now and that is her decision. We talk about things often, but all I can really do is listen because most of my replies don't seem to help. I have to be honest when I speak to her or I'm not treating her normal and she would know if I were trying to sugarcoat things.

We do our best to go on with life as normal. We realize she's an intelligent person and we treat her as such. The hardest thing is getting others to treat her normally. When you look at her, she looks normal so she's okay at first with people. It's their reactions to her when speaks that irritates us. I would love to know how to reduce the negative stigma that is cast towards her when she speaks.

I really appreciate your input and look forward to speaking with you and others in the near future.

Take care,
Angel

Angel,

My friend has similar struggles. I got him hooked up to the internet back in March. He can communicative by email without any symptoms of his injury. Email takes the speaking irregularities out of the way. He volunteers at the YMCA a few times each week and also at the VA hospital. This allows him to have social contacts with people who understand his difficulties.

I met him at a Brain Injury Support group. Have you checked into any Brain Injury Support groups? Ours serves both the injured person and their caregiver. It is very helpful. The caregivers group is very good for my wife. Even though I am likely the highest functioning in the group, my wife can still connect with others who deal with the same personality and cognitive issues.

There is a wide variety of TBI persons in our group. Some are wheel chair bound, others need canes or walkers, some are highly ambulatory but have speech difficulties, and the list goes on. Some live entirely on their own. Others live in a supportive group home or with family. The ability to observe all of the different symptoms, behaviors and personalities is very helpful.

Most are many years post injury. Their positive outlook on life is remarkable. My wife thoroughly enjoys meeting with the other caregivers.

I am sorry if I am babbling. I am trying to endure one of my many headaches while I wait for the Tylenol to take effect. This head ache started last night at 7:00 pm. It has come and gone through out the night and morning. Just another part of TBI or for me, mTBI/multiple concussion syndrome.

My best to you.

Hi again!

I'm sorry to hear your head hurts. That is something my daughter has to deal with occasionally as well.

I live in a very rural area and we haven't found a support group for TBI specifically. For the brief time my daughter returned to public school, I found a group that supports people and families that have teenagers with disabilities. Shelby is still in denial about her condition so we stopped going per her request. I don't feel forcing anything is going to help make her situation better.

Thank you again for the book! I loved that I could read it online and not have pay for it. I read most of it yesterday evening. I bypassed the hospital info since we're past that stage, but I do think it may be simple enough for my daughter to comprehend in small bits. Memory is a significant issue for my daughter so I'm not sure how she'll retain what she reads. We're still working on that.

I hope you feel better soon!

Angel

The download version of Dr Johnson's Survival Guide is free to download. For those that can afford it, he asks for a small donation to help with the costs of maintaining his web site. Web sites are usually charged based on the amount of traffic to the web site. He does a wonderful service to the TBI and mTBI community.

A downloaded copy can be reformatted to make it easier to read for TBI subjects who may have vision/reading p[problems. For example, I struggle if there is too much information or clutter on a printed page. It that case, I will break up the page to make it easier to read without my brain becoming distracted by the clutter.

Has your daughter had a neuro-psych assessment? These can be a good way of helping the patient put their symptoms into real terms. They can also help the patient accept that they are not losing their mind but just living with a mind that does not always work correctly. Understanding and accepting our dysfunctions is the first step toward learning how to work-around or make accommodations for those dysfunctions.

My best to you and your daughter.

My daughter has had two neuropsychology exams, the first May after her accident and then this past May. We're having at least one more next May. I think maybe the next one will resinate more because the improvement won't be near what it was the first year. During her first exam, she couldn't talk, write, or even walk...all that has returned to some extent and her smell completely returned.

In Shelby's mind, she's getting better and this will be over some day. It doesn't really seem to matter what others say. I don't know, maybe she's right. It's that same stubborn determination that has brought her this far!

I am surprised they did a neuropsych exam if she was so disabled. It must have been much different than the one this past May. What did the last one say about her abilities?

The WAIS-II scores and the Wechsler Memory scores will be most indicative of her abilities for school and other life skills.

They can direct her in her effort to be normal. If she fights against the weak areas, she will just get stressed out.

Most of my WAIS-II scores are very high except my processing speed is very low. Most of my Wechsler scores are very low. I have developed many skills for dealing with this condition.

My best to you.

Hi Mark,


At the time of the first exam she was leaving Day rehab from Children's Healthcare of Atlanta. It seemed that all the children that left that facility had an neuropsychology exam before they left. The two exams were definitely approached differently, but they measured the same things.


I don't understand how they measured some of these things on the first exam. For example, they provided a grade level for her reading ability both times. Perhaps this was required in the report for school. Her last exam put her at a 4th grade reading level, but as her teacher, I find that inaccurate. I would say she's easily at an 8th grade level because of her performance.


There's different WASI scores. Overall, the first exam had her below the 1st percentile across all the testing ranges. She fell within the 27th percentile a year later.


The full IQ was 78 the first exam and 105 the second exam. Prior to her accident her IQ was measured for the school's gifted program before middle school and high school, it was 129 when she was 10 and 145 when she was 14.


For her verbal skills, the Boston Naming test was in the 32th percentile and her D-KEFS verbal fluency test was in the 9th percentile. D-KEFS shows her ability to generate the right word. Her delayed recall was well below average. The report mentions she still has aphasia and dysphasia...these are the medical terms used for her speech difficulties.


For her nonverbal skills, all the tests were either less than 1 or at 1 percentile.


For Attention & Executive function, (WASI-IV Working memory index), was in the 4th percentile.


For Fine motor functioning, (WASI-IV Procesing Speed) was in the 2nd percentile.


Processing and memory are significant deficits for her.


Take care,
Angel

Duhhhh, It just dawned on me that she would not be administered the WAIS-II. It is for adults. (Wechsler Adult Intelligence Scale)

I struggle with aphasia, mostly in word finding. I sometimes struggle with comprehension, especially if the speaker has an accent. My brain can either decode the accent or decode the sentence, but not both. One of my work-arounds for word finding is to look around the room. The visual images sometimes trigger my brain into the right word pathway. Otherwise, I often get stuck and can become sort of obsessive in trying to find the word.

You mentioned that you are her teacher. Do you work at her school or do you homeschool her?

I have had to stop a lot of recreational reading. I cannot read fiction. I cannot keep the characters and story line in memory.

I love to read factual information. It is the only reading that I am successful at. I can put the facts together like a jigsaw puzzle. This linear like use of the information allows me to keep the facts in an indexable memory. I may need to read something many times for later recall but at least i can process the reading the first time through.

I read gobs about how the brain works and the latest discoveries, etc.

As I have looked back at my academic life, I have realized that I lost a lot of my verbal skills after my injury at 10 years old. I was never able to score very high on the verbal SAT. My vocabulary recall is problematic. I always did fabulous on the Math portion. In fact, I increased my score from 650 a year after my sophomore year concussion induced struggles to 710 another year later, even though I had not had a math course since my sophomore year.

My friend appears to have trouble with verbal processing. His brain likes to twist words into strange meanings. His visual skills are much better than mine. He is fast as a bullet with backgammon. His math skills are also very strong.

I use my computer to organize my thoughts because I get lost trying to organize them to speak audibly. One of my friends in brain injury support group has severe aphasia but is unapologetic in her attempts to communicate. I sometimes refer back to the old excuse that " I get my merds wixed up." Or, "My tongue got caught around my eye tooth and I couldn't see what I was saying. " This recitations tend to help me get my brain back on track.

It helps to develop a sense of humor about or foibles. If you smile after mixing up your words, others will laugh with you rather than at you. It also helps to tell those close to you about your struggles. Then they can be much more supportive. When others understand, they are not left feeling awkward and embarrassed.

My IQ was measured at 128 to 140+ post injury. I know that it was much better prior to my last concussion. Much of my difficulties are due to a very low digit span. Sometimes, it is only 3 or even 2. On my best days now, it can be as high as 12 or 13. Before, it was probably up near 18 or better. I had a photographic memory. Now, I am either out of film or low on available Flash RAM.

Yet, I am highly functional as are many of my severely injured TBI friends. The next year will likely have as much or more improvement than the last year. As she learns to work with the new brain she has, she will likely find new ways to do the things that she wants to do. Many TBI or mTBi subjects develop a completely new sense of compassion and awareness of the needs of others.

I can see when someone is struggling mentally just by the look in their eyes. Been there, done that, know what it is like from the inside looking out.

As her teacher, I encourage you to throw out the calendar. It only adds undue stress. Then, the accomplishments will appear to pop up out of nowhere. Being anxious for the future tends to dull the value of the future accomplishments. Don't worry about whether her glass is half empty of half full. Choose to use a smaller glass until she can handle a larger glass. It will come in time.

btw, I have a cousin who is a year older than me which would make her 56. She was severely brain damaged from a delayed birth. The doctors said she would never be able to take care of herself. She has been running her group home for the past 20 years. She may have some academic struggles but she also has abilities that outshine the 'normal people.' She has been very productive with her life even though at 15 years old, the specialists said her IQ was equal to a 3 or 4 year old.

Your daughter will accomplish much, just be patient.

My best to you.