Brain Injured Children: Parting Thoughts To Others

Brain Injured Children: Nancy Part Twenty Four 

As with most of my interviews, I ended with Nancy and her Mom asking them to share their thoughts to help others who were struggling with what they have been through with brain injured children. First, with Mom:

You have given us a lot of wonderful information and I’m sure that any, any mom or wife who’s new to this dealing with brain injured children is, is delighted to hear what you have to say, get your perspective.  But, you put a lot of effort into this. What is it you really want those who are in your situation dealing with brain injured children, what do you want to say to them, to help them get through that first 30 days of waiting and the first six months of coming home  with brain injured children?

Educate yourself as much as possible and you are the caregiver.  You’re the one that knows your child the best.  You are going to be her biggest advocate and you are going to explain things or demand things or want things from the physician, from the school districts from whatever, that you think is appropriate for your daughter because you have that knowledge.  And, that traumatic brain injury websites, anything you can get on chat rooms for traumatic brain injury, chat rooms, through the state and other websites that will help you understand what’s going on with other people’s cases which can help you piece together what you’ve got.

And unfortunately, with us, I wished our neuropsych would have been on board from the time she was around the discharge – is where they thought that that piece would fit in.  We never saw anybody.  They would have helped you as a parent understand so much with a child that can’t explain herself and why she was doing the things she was doing.

What would you like to see as far as neuropsychological input for brain injured children?

Even if it’s just to tell them, this is what’s happened to your child,  this is what this looks like.  This is how things reconnect.  These are some of the things we can probably predict that’s going to happen down the line.  This is some reading information for you, some textbook cases that are going to be identical to what you’re going through.  And, just so you, you aren’t being upset at your child for something they have nothing that they can help.

Now, it’s interesting that your description of what you would like to see from a neuropsychologist at acute discharge of brain injured children is in fact the model based on the exceptional neuropsychologist that you had later, is that correct?

Right, right.

Talk to me about that.

When we came on board he was very surprised that we hadn’t had an assessment done.  He also had a different approach to discharging or exposing that patient to the family again via videos, conversations.  We did have a phone tree that happened.  The kids called Maria every night between 6:00 and 7:00.  They were given a phone card.  Kids would go home and call Nancy and chat with her on the phone so that she could get used to their voices again.

Dr. Theye wanted updates visually.  Visual and voice recognition to go along with that.  Also with  the family members as well, he wanted to make sure that these kids were being educated and understanding why she was maybe a delay on the telephone.  I would have to tell her what to say on the telephone a lot of the times.  She just couldn’t carry on a conversation.  It wasn’t clicking yet.

And just for everybody to understand and he explained it perfectly.  It’s like a wire cut in half with the ends frayed.  Those ends are trying to find their connection point or another relay area for the connection to happen.  For that impulse to go through some neuron somewhere else that’ll all connect.  And it’s trying to heal itself but it doesn’t know how yet.

And for every parent to know not to give up.  I saw miraculous things happen, wonderful things happen and now that it’s down the road a little bit, it’s taken longer.

I asked Nancy about her advice to others with brain injured children:

What is it you want to tell people, other people with brain injuries, other kids who are trying to get through this, get through high school, figure out what to do what their life.  What do you want to tell them from what you’ve been through as to what might help them?

If you make a mistake don’t blame it on your brain injury.  It’s not your brain injury’s fault that you did something wrong.  You forget, if you forget something and you’ve got short term memory loss, you can blame it on short term memory loss, but just say I forgot, oops.

And why is it important not to blame it, blame it on your brain injury?

Because it’s like using your brain injury as a crutch.

Do you feel like you’re moving forward, that you’re getting better and you’re growing?

Yeah.

Why do you say that?

Because I’m 18.  I’m a lot older than I was when I got in my accident and I can, when I got in my accident I forgot how to speak.  I forgot how to swallow.  I forgot how to do everything that you learn when you’re really, really little.  I had to learn again when I was 9 years old, because I forgot everything.

Do you remember having to relearn those things as being one of the brain injured children ?

No.  My mom told me that when they gave me a spoon to eat with I’d just tap it on a table.

Okay, anything else you want to add?

When I was in surgery they saw my fingers doing this because I was doing math in my head.  I think it was really weird because now I hate math.

After she has listened to both my interview of Nancy and of her husband, Nancy’s Mom had a final thought regarding brain injured children:

You were saying about what role a father should play with brain injured children versus what too often happens.

I’m going to be like Tom Selleck on the commercial where he says that fathers have to be present in their children’s lives.  And even though the mother seems to take over the role as caregiver, that father is still present and needs to be just as much.  And there, I mean there’s times when I just look at Otto and say, you know, and he’s, he’s right there and he takes over.  Or he knows when things are getting maybe a little stressful for me or vice versa.  And we just take over for each other and calm it down.

Dr. Theye did mention to us to us that families don’t stay together very often when their children have traumatic brain injuries.  Whether it’s blame on the other parent or whatever the situation is, but I think by sticking by each other like we do and trying to help each other out as much as we can in this situations, that that’s, that’s really what keeps us together.  I think I would have a difficult time if I was the sole caregiver.  So you have to give 100 percent apiece.

I started TBI Voices with the goal of making a contribution to neuroscience.  Yet I recognized in my first words in this project, that this would be a non-statistically significant contribution, a subjective description.  It was my hope that when enough subjective descriptions started to show similarities, that perhaps an objective pattern of survival from brain injury might appear.

But clearly as I reflect on the interviews and stories I have written so far, one thing is clear: My stories do not contain a representative sample of family dynamics after brain injury.

All of my interviewees have come from Brain Injury Association sponsored support groups, where caregivers play an important role.  I am seeing far better family dynamics than might exist on average.  I have no doubt in my mind that such committed families have resulted in far better and longer recovery than the representative sample of the brain injury population.

Thus, in gauging the cross section of the TBI Voices participants, one must see them more as the prototype for maximizing recovery, than as the typical survivor.  Family, support groups, continuing educational and community integration opportunities are the key to recovery for the brain injured especially the brain injured children.

To the degree that your story, your brain injury does not mimic the characteristics of our participants, use our TBI Voice as an inspiration to believe in what too many have too easily said wasn’t possible: recovery for the brain injured children and all the brain injured.

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