Dylan's Hobbies:

Reading, exercising, hiking, listening to music, spending time with friends and family

Their Story:

"At nine months old Dylan fell down a flight of stairs and suffered a skull fracture and a sub-dermal hematoma. He has very difficult behavioral problems which affect his functioning in all areas and I must be with him virtually 24/7.  I have not been able to work since he had the TBI which has put a major strain on our lives, ...  There is no child care available for a child with his needs and the public school system isn’t equipped either. 

Dylan has needed so much care, that for many years I had no time to take care of myself, I got virtually no sleep because he didn’t sleep through the night and I was constantly running to appointments and spending hours  keeping him safe holding him when his behavior was out of control.  I had to carry him until he was around 2 ½ yrs old when we had to go any distance because walking was tough for him.  There is no compensation in money for a parent in my position." Brandi

What do you want people to know about TBI?

I would like people to take it seriously.  It is not just an excuse for behavior and it really exists and affects things long-term.  I have even had doctors literally write it off as being insignificant.  It can show itself in all kinds of ways and it is unpredictable and people need to have compassion and patience with someone who has had a TBI.

If you could create one service or program to help TBI survivors, what would it be?

Educating both physicians and the general public to what TBI is and how to treat people with TBI with respect and not act like they have the plague or some reason to avoid them.

Joe's Hobbies:

Joe loves to collect, listen to and discuss music.  He loves animals and movies.  He also loves a party.  Because it is difficult for him to get around, we help get people to him.

Joe's Story:

Joe was age 14 when he suffered a TBI.  He has been recovering for 41/2 years. Although Joe does not formally attend a support group, he has friends and families that are survivors and Joe mixes with the survivors usually in the context of get-togethers of all kinds of folks.

What do you want people to know about TBI?

In Joe's own words: "It sucks...you can't do a lot of the things you used to be able to do, or not do it as well....like run, think, talk, walk.  I had a lot going for me before I got injured, running competitively and an A student.  I had lots of friends. I was much more independent.  Now I have to start all over again from age 14....Make sure you don't have TBI because a lot of people have it and don't know they have it.  Or they won't ask for help."

If you could create one service or program to help TBI survivors, what would it be?

"Help TBI survivors do things they want to do; anything they want to do, within the limits of the law and their health...to help them with their judgment, having sound judgement...the ultimate brain injury rehabilitation, job placement, help with everyday life, but not so much that it is encroaching on their independence....I hate that...It could be a place to go or a service to be provided.  Everyone with a brain injury; it could for all."

Allen with his wife "R" outside the cottage they built housing Arlene's office

Allen's Hobbies:

Photography; work in the garden and around the house.  Current daily activities: Taking care of (fixing things) around the house, going places with R, helping R with school and her kids (school kids), reading books to improve myself, watching movies with R at night, walking my dogs. When my son visits, we play chess and I play scrabble with R in the winter.

Their Story:

Four years ago, when Allen was 64, he suffered a TBI.  Now, at 68, Allen and his wife, Arlene, co-facilitate a TBI support group they started.  Allen says that "Its an incident that changes your life and family forever.  It takes a long time to return to feeling somewhat like your old self (normal?) again and even then you really never feel the way you used to feel about yourself.  For me, I feel less productive and not as joyful about life.  I sometimes hardly recognize who I am."

Arlene says that one of her messages to others is that a brain injury does not mean mental illness, retardation, or stupidity and that no one should ever talk down to a TBI survivor.  It may take time for the survivor to process or recall information, but it is an opportunity for those engaging to "listen" at a slower pace, offering a great opportunity for awareness of others and themselves.

What do you want people to know about TBI?

Arlene says:

• In all likelihood, human nature being what it is, (like any other illness) unless you are living through TBI it is highly unlikely that one will understand the impact and the devastation TBI has on a family and the survivor.
• There is not ONE survivor but TWO which includes the family unit and/or caregiver.
• Never tell a survivor “I would never know you have a brain injury”. It forces the TBI survivor to try and live up to expectations he/she cannot live up to.
• Remember that a TBI survivor may not always have the “brakes” to prevent anger or inappropriate behavior or language.

If you could create one service or program to help TBI survivors, what would it be?

Allen says: "A support group, more vocational and add vocational programs.  I believe the thing that helped me most was having someone there that I knew before the accident that I loved and trusted and that I could ask questions of (about me before and after the accident) and know that I would get an honest, truthful answer.  I received that from my wife, R."