A Day in the Life - Brain Injury Association of Canada

A Day in the Life
Of the family after a TBI
BIAC Annual Conference 2010
Jeannette Holman-Price C.A.N.D.O.
Peter Luc Holman-Price 4 ½ year veteran
Brain injury is the number one
killer and disabler of Canadians
under the age of 44
17 Fractures
1.
2.
3.
Pelvis
Hip
Shoulder
The print of the truck remains.
It runs from his temple to his chin.
With only three breaks identified,
the rest are in his head.
Sometime after midnight – the scare has just past
The effects begin to show
Straight away
we see the
changes in
∆ Memory
∆ Clock
∆ Manners
Questions
Survival is the only objective in the
First moments, Will he live? Not...
How will he live? The broken bones
will all heal, the bruises will fade.
Isn’t he lucky to have survived?
TBI
Responses
Typical for an adolescent
Doesn’t seem different
A.B.L.E.
C.A.N.D.O.
Lots of kids are like that
We want to believe!
How lucky to have survived
UNSCATHED
Focus on Physical Rehab
Psychology looks at trauma
No-one accepts what
Mom can see – He’s different!
Are you looking too deep
Why do you want it to be more?
Still too early to be sure
Three Types of Dreams
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Fantasy
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Memories
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A world of pets, family, ice cream and happy times.
These come from time to time
The morning begins with a smile.
Reliving the trauma, the horror, the pain, the senses
These are ever present – his body moves in anguish
He is exhausted when morning comes.
Terrors
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Fantasy with a twist - real stories with new players
This confuses the diagnosis – “Separation Anxiety”
These also come in daylight hours
Nightmares interrupt sleep
A Family Affair
Mom’s experience
• Memories seem
fabricated
• Thoughts are scattered,
fragmented, vague
• Lethargic, confused,
unmotivated
Other point of view
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Sometimes reality is
difficult to accept
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Hyperactive, hormones
kicking in, he’s a boy
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This should be expected
at this age
Mom’s thoughts remain “The print of the truck remained on his head for two weeks”, but aren’t we
lucky – he doesn’t have a brain injury?” hmm...the experts can’t all be wrong...”it must be me!”
Everyone is tired
Reassurances Abound
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He survived
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Behaviour
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The bones are inoperable
Healing has begun
Reaction to severe pain
Need understanding he’s been through a lot
Recovery
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Mustn’t make excuses
Sleep can be induced
Routine must be restored
• Memory, manners, clock
Daylight will come soon
Nobody understand the question
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Why me?
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Nobody understands
Can I ....?
I don’t get what you mean?
That’s not what you said.
We need to get answers.
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Who can we speak to?
What can we read?
Where can we go for help?
When will we see the pre-injury person?
Why can’t others see what I see?
Not yet alert
Experts are following the progress
X rays show more
Orthopedics
The bones are healing
..within normal range…
But No more skiing!
Audiology next
Psychology 2/week
Psychology
Dismisses all symptoms as
learned behaviours
Suggests Mom exaggerating
Separation Anxiety
General Medicine
Pleased with recovery
Rehab will be necessary
Routinely checks hearing
and eyesight
Blood in ears
Squinting & focus
The professionals are in
Referred to CP Clinic
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Multi-discipline approach
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Psychology
Neurology
Occupational Therapy
Speech
Physiotherapy
Audiology
Ophthalmology
Do you think they know?
He doesn’t have Cerebral Palsy
“I guess they haven’t seen these
symptoms on other children who were
hit in the head by a 12 wheel truck.
Aren’t we lucky he doesn’t have a
traumatic brain injury?”
New areas for observation
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Temporomandibular joint
Osteochondritis dissecans (OCD)
Scoliosis effect
Ready to get started
A step back in time
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The bones are healing
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The doctors look at his x-rays
Now there’s 19 breaks
Again they check his hearing & eyesight
They found another break on the pelvis
Still no surgery required
Physical recovery is expected within normal range
No signs of Brain Injury
Memory
Irritability
Physical
Disorganized
Emotional
Unreasonable
It seems we’ve been here before
What’s that I smell?
My child had a healthy energetic lifestyle. Food was
always a big part of our life and he would make wise
choices. A balanced meal would outweigh a trip to a
burger joint. A family of foodies, healthy choices.
Was it because he wasn’t active?
Was it because he was depressed?
Was it because he wanted to defy?
Why does he need extreme flavours?
Food needs to be scheduled
Looking for a thrill?
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Throwing head back to watch mom jump!
Dropping back off the stair rail – just missed the step!
Spinning the office chair – mom’s losing patience!
All children do this right? I did that once, didn’t you?
Again a hole in the knee of your jeans?
I can’t afford to keep you in clothes!
The morning is almost over
12 o’clock
The morning is finally finished
Now the afternoon must begin
How will that look tomorrow??
Brain Injury Association of Canada
Finally we found some answers
All part of a bigger community
Slide 15
We started to get a response
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Neuropsych Assessment
(The results matched perfectly the child we see)
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Work with other agencies to educate
(Much of the information we obtained out of province)
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Search for appropriate skill set
(Our dream team are all non-traditional roles)
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Community liaisons
(school and community need education)
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With a larger community of ABI survivors
(work closely with B.I.A.C.)
A group where we’re welcome
Our dream team approach is
working
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We are getting more answers than
questions
The symptoms are being mapped
We are meeting other survivors
Research is becoming more public
Doctors are looking at the individual
The Community at Large is Blind
to this Invisible Disorder
Slide 18
Tim Feeney said it best.
Family
School
Rehab
Slide 19
Relearning
Review
Goal
Do
Plan
Predict
Slide 20
Our life today
Behaviour Management Personnel
Repeat behaviours – mindful experiences
Occupational Therapy
Examining Vestibular stimulus
Easter Seals
Swim coach
Community Health
Social Worker – life coach
Brain Gym
Stimulating both sides of the brain
Psychology
No adolescent neuropsychologist in the province
Slide 21
Children & Adolescents with
Neurological Disability Organization
Giving young survivors a voice
through advocacy, information
and education while sharing
common goals and experiences
Support Meetings
Group Resources
Shared experiences
Open Discussions
Referrals
Guest Speakers
Injury Prevention
Brain Day Programming
Slide 22
Who we are?
After being left our own devices to fend for a son with a moderate
brain injury in a community where little was known or understood
about the unique abilities of our brain to retrain, we began to
search for information and support. We turned to the medical
profession who constantly referred us to a local group but this
group had nothing to offer to children. Over the three years we
were forced to advocate and research without support, we thought
our experiences and those of others we’ve met along this journey
should be shared. With this sharing in mind, we created a group
called C.A.N.D.O.. Rather than subject our children to adolescent
banter by saying “I attend a group for people with brain injury”,
we know they are part of a group of hard working achievers.
When it comes to our children, We’ve learned the best response is
“t h e y C A N D O ! ”.
Slide 23
Monthly Support Group Meetings
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Speakers from the health and rehabilitation
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Hope for the future
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Based on trust, respect, listening, understanding of needs
Education
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Meeting at a wheelchair accessible facility first Wednesday of the month
Relationships
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We often gain a new perspective when we meet others who’ve already
travelled this path
Open to families and caregivers of young BI Survivors
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Community specialists are invited to speak to topics which affect survivors
Identification and resources are necessary and misunderstood
Sharing
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Members share stories, relate experiences, identify resources
“Working Together is Working Smarter”
Slide 24
It’s not easy being me