BARRY’S JOURNEY No. 2
Words and no words.
Words and No Words
I was talking to a woman a while back that teaches children’s literature. She was telling me about a study between the relationship of not being read to and being a bully or bullied. I wish I remember who is doing the study, but she told me if children are not read as children as they grow up they do not the have the vocabulary to express how they are feeling. So they may bully another child or become victims of a bully themselves. They do not have the words to explain how they feel.
I have been very interested in that concept now for a few years. I have worked on some picture book ideas to give children some of words they need even if they are not read to. Tough challenge. This concept also makes me think about people saying the F word. I hear it everywhere now. I was riding my bike one morning last week and I heard a construction guy working on a house said, “That fucking wood is fucking heavy.” I thought to myself. My gosh can’t you think of a different word?
There kids are at the bus stop just down the street. Then I realized maybe he doesn’t have the words? Was he not read to as a child? I have been thinking about this concept of people saying the fuck a lot lately because it is happening in my own home. Barry says Fuck You to me all the time. If I don’t give him money, or when I ask him to go for a walk, or wear a different shirt he says well Fuck You! At the State Fair he walked over to some big bags of ice outside a lemonade stand and started opening a bag to get ice for his water bottle. When I said you can’t do that, he yelled, “Well fuck you” all the way back to the car. It was unnerving and embarrassing. It is also a little bit scary, kind of like you feel when a bully is picking on you. But it is also sad because Barry would never have said those words to me before FTD took over. I realize now he is losing his words! He can’t say I am frustrated,angry or depressed. Barry does not have the words anymore to explain how he feels. So he says fuck you! Those two words can hurt like a bully hitting or teasing you. But I have the words to tell him how I feel and once in awhile he understands, especially when I explain he can’t talk that way in front of our granddaughter Charlotte.
I am not sure what to do with Barry and his swearing. Maybe he needs to read some picture books? Maybe he needs to talk to a counselor about his feelings. But I do know if we can give children lots of words to help them explain how they are feeling maybe we would have less bullies out there or kids being bullied. So read read read to your little ones! Give them all the words you can!
My guess is that what Barry is experiencing is disinhibition. Long way of saying that his brain damage lets him do the first thing that comes to his mind without using the social rules and caution we were all taught. This is sadly a common part of dementia.
Here is an into article on disinhibition http://en.wikipedia.org/wiki/Disinhibition
You have really hit on something here. I think the f word is truly a word in the frustration when at a loss of words and you’re angry as you said. Wow. You amaze me thru this journey. Love you my friend.
Oh, God, Nancy. Thank you for this raw share; even though you know Barry doesn’t REALLY mean it, it’s hard not to let the words sink in. I really hope you can build a bubble around yourself to keep those words from settling into your spirit.
What fascinated me about this post is that I can see how not having the right words impacts our five year old, who has autism, in the same way. He has a hard time quickly coming up with the right words to express himself, and will blurt out something he knows is naughty. It used to be “I hate you,” lately it’s “poopy butt,” and occasionally he just hits. It’s so unnerving and unexpected, because he’s otherwise the sweetest little guy. But his therapists say it’s because he can’t find the words. I hold out hope that he will find them…that as we read to him and teach him about feelings, he will eventually learn to control the angry words and come up with new ones. But I feel so much for you because you’re at the other end of the spectrum, where you know Barry is losing words vs. working on finding them. I just want you to know I can relate in some small way…and that I’m sending light and love to you on this hard, hard journey.
Wow that is some great insight Liv. So true as your guy grows he will find words and I am sure lots of them. Barrys words will soon be gone no matter how hard I try. I am hopping you will like the new book I am working on it is written with a boy with autism. It’s called Armond Goes To A Party.
Its due to be done in a month..hope I can get it done. I will send you a copy when it comes out!I think April!
Take care and thank you for your kind and thoughful WORDS!!!
Nancy
Nancy,
We think about you and Barry often. So sorry your family is struggling with this terrible situation. Please know we are thinking of you. Could you send me your current address.
Love,
Carol
Thanks carol! Our address is 11256 Norht Ceadr Point Drive Mtka mn55305
I hope all is well with you guys! NC
Opps I meant Cedar!
The disease of dementia causes my sisters and me to “forget” when mom says all the mean and nasty things she does. We must continually remind ourselves that it is the disease. My heart goes out to you as you live with your young husband’s disease.