Pediatric Severe Brain Injury Survivor: Future and Ambitions

Pediatric Severe Brain Injury Survivor: Nancy Part Twenty Three 

As I write this, Nancy has graduated from high school as a pediatric severe brain injury survivor. The issue remains what now? I asked her.

What are you going to do after you graduate as a pediatric severe brain injury survivor? 

Well, the Saturday after I’m going to have a graduation party and then I’m going to become a professional singer some day.

Do you sing now? 

Yeah.

You want to sing for us? 

No.

Did you hear the guy singing at lunchtime today?  He’s one of the people who’s part of this project.  (See http://tbivoices.com/jeremiah1.php )

Cool.

We have some videos of him and Sarah that are on that are on part of this project. 

Cool.

Do you play an instrument? 

I do.  I play the piano and the bells.

Did you play the piano before you got hurt? 

I fiddled around with like the keyboard.

When did you start playing the piano? 

After my accident when I was about 16.

Was that hard for you to learn as a pediatric severe brain injury survivor? 

No.  I heard the music and I play the music without having to look at notes.

Can you do it if you have to look at notes? 

No.

Do you play with other people? 

No.

Have you ever performed in front of people?

No.

What’s the most difficult song you can play on the piano?

You are the Music in Me.  It’s from High School Musical II.

Hum it for me?

No.

You’re going to be a professional singer but you won’t hum on camera?

Nope.

What other alternatives are you considering for a career after you graduate from high school as a pediatric severe brain injury survivor? 

A waitress, a bartender.

Dolphin trainer?  

I just wanted that when I was like 5.

Not since then? 

No.

Work with animals?  

Yes.

According to her Dad, Nancy’s musical ambitions as a pediatric severe brain injury survivor are more credible than they might sound.

You heard her say that she wants to be a professional singer.

Yes, she does.

Can she sing?

Oh gosh, yes.  She’s excellent – and I’m not just being biased as a parent.  She is good. She has the talent to do that.  No question about it.  The processes of getting to the point is going to be very difficult for her.

Has she ever performed in front of 20 people?

Oh, she’s performed in front of a lot of people.  It doesn’t bother her one bit.

So she’s not distracted by the noise of the crowds?

No.  She, she has done karaoke in huge places and there’s a couple hundred people there.  It doesn’t bother her one bit.

How is her piano?

She just tinkers around with it.  You know, if she said that she plays I don’t really think that she plays the piano, but she does pick up music quite easily.

Have you considered having her take lessons on the piano?

You know, I have asked her about that.  I wanted to get her guitar lessons and stuff like that but she just – she doesn’t want to do it.

You were saying she had some problems at the talent show.  

Yeah, she was in the talent show and, and everybody likes her to be there.  She won the talent show last year on one of her songs.  But she had a song to sing this year and it was more of an upbeat song and the kids were clapping in the audience with the beat and she kind of forgot, she got into the whole mood so much she forgot her place.

And it was really kind of, it was really cool because then the kids were singing the song along with her and then when she got lost they kind of brought her back to the spot where she was supposed to be and then she finished.  It was really cool.

Does she remember the words? 

Yeah, she does.

Does she remember what she has to play of an instrument in front of people as a pediatric severe brain injury survivor – 

No.  She just sings.

I asked her Mom:

What’s the plan for September now that she has graduated as a pediatric severe brain injury survivor?

We have a nice local college, Nicolet College that’s near us and I would like to try her on a class.

What do you think you need now as your daughter approaches adulthood, to bridge her from her current maturity level as a pediatric severe brain injury survivor to where those of her own age are?

I’d like to see more behavior rehab for her.  If that was something that we were going to put her in that would be the ideal situation for me.  It’s not so much the ifs, and or but on life, it’s how to behave in public, what do you do during these situations.  Almost like scripting again but on a more mature level and repetition, repetition, repetition.

She went from not wetting the bed, to wetting the bed for a huge period of time and then stopping.  It was amazing.  It seemed like things would be okay, something would happen, then they’d jump and get back on the track again.  And even though you see things happen in your child’s life that are not good, you just, you can’t believe that they’re not going to happen again.  It’s just a lot of tough love, love and time.

What do you think she needs as a pediatric severe brain injury survivor, as she starts junior college?

I would like to see a tutor with her.  I think she’s going to need a paraprofessional.  There’s too much time on your hands and that’s her problem.  If it’s not structured and someone isn’t telling her during that non‑structured time, say like a Lab or something, it’s, it’s not going to happen.  But I just want her to know that she’s isn’t done learning.

Even in the world of the relatively more comfortable setting of a community college, we have found that without an aggressive intervention, thriving academically for someone who is a pediatric severe brain injury survivor can be extremely difficult.  Nancy would have the advantage of continuing to live with her parents, meaning much of the challenges of getting to class, staying on top of homework, might be less of an issue for her as a pediatric severe brain injury survivor.  But when the protective shield of a school system that had been intimately involved in her recovery as a pediatric severe brain injury survivor is removed, the disconnect between her academic capacities and her frontal lobe deficiencies could derail learning.  Her caregivers, her treating doctors, her community must continue to structure her next challenges to makes sure “she isn’t done learning.”  The longer structured learning is part of her daily life, the longer and better her recovery will be.

Nancy concludes in Part Twenty Four –  Parting Thoughts for Other’s

By Attorney Gordon Johnson

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