A Day in the Life - Brain Injury Association of Canada
Transcription
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 • Fantasy • • • • Memories • • • • 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 • • • 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 • Sometimes reality is difficult to accept • Hyperactive, hormones kicking in, he’s a boy • 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 • He survived • • • Behaviour • • • The bones are inoperable Healing has begun Reaction to severe pain Need understanding he’s been through a lot Recovery • • • Mustn’t make excuses Sleep can be induced Routine must be restored • Memory, manners, clock Daylight will come soon Nobody understand the question • Why me? • • • • • Nobody understands Can I ....? I don’t get what you mean? That’s not what you said. We need to get answers. • • • • • 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 • Multi-discipline approach • • • • • • • • 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 • • • Temporomandibular joint Osteochondritis dissecans (OCD) Scoliosis effect Ready to get started A step back in time • The bones are healing • • • • • • • 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? • • • • 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 • Neuropsych Assessment (The results matched perfectly the child we see) • Work with other agencies to educate (Much of the information we obtained out of province) • Search for appropriate skill set (Our dream team are all non-traditional roles) • Community liaisons (school and community need education) • 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 • • • • • 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 • Speakers from the health and rehabilitation • • Hope for the future • • Based on trust, respect, listening, understanding of needs Education • • Meeting at a wheelchair accessible facility first Wednesday of the month Relationships • • 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 • • Community specialists are invited to speak to topics which affect survivors Identification and resources are necessary and misunderstood Sharing • Members share stories, relate experiences, identify resources “Working Together is Working Smarter” Slide 24 It’s not easy being me