Monday, June 16, 2008

Changing a ‘Pair of Dimes’

The miniscule cells that worked diligently to become a completed little person were zapped with a night of binge drinking.

A night of partying a few days later zapped more
... Kaboom!

And then another night of social drinking
... Kaboom!

And at a business conference
– Kaboom! - another set of brain cells were destroyed.

Alcohol is a ‘teratogen’ (a substance that is toxic to the baby’s developing brain). Since the brain and central nervous system are developing throughout pregnancy, the baby’s brain is vulnerable the whole time and alcohol may damage some parts of the brain while leaving other’s intact. This loss is lifetime brain damage that affects the childhood, adolescent and adulthood of the individual.

Parenting a child with hidden brain damage is complex, but being the person with this lifetime invisible disability places the individual in the position of being a stranger in a strange land. What can we do to help a person we love or care for? A crucial first step is to accept we are parenting a person with a brain that is damaged and realize ‘normal’ behaviors may not be feasible without support, environmental control and special training. By changing our frame of reference, our caregiving strategies will change.

Accept The Whole Child
Prenatal exposure affects more of the child than simply their brains. In our daughter’s case all of her processing systems from the tips of her fingers and toes to her eyes and ears were affected. Her pupils did not dilate properly and she was unable to compensate for changes in lighting. She was a mouth breather and feared closing her mouth because she believed she’d die. She could not feel her fingertips. Her senses were confused and light touch felt painful while a major injury didn’t hurt. Her circulatory system and digestive system didn’t work properly. Her infant reflexes were still engaged at age fourteen and she could not cross her midline. This midline crossing affected her ability to play games, sweep and even chew.
Each of these issues complicated learning at higher levels and we discovered teaching the earliest missing development steps strengthened those later steps she already knew.

Teaching Backwards to Move Forward
A willful looking child may act annoying and steadfastly refuse to participate or try something new. Hurt or fearful, they become defensive. It is easier to be mean or have a tantrum than to say you don’t understand. On the other hand, the child may appear lazy and unmotivated. The child may not know how to begin what is being expected and does not want to fail.
Liz, my 19-year-old daughter explained, “Mom when plans change or I have to learn something new, it is like I am standing on a blank nothing. I don’t have pieces I can use to help me. I need someone to guide me to get me to that new place. I don’t want someone to be condescending to me and treat me like I am not intelligent. I can learn. I just don’t learn like other people. Sometimes it takes more time. Sometimes you have to try different ways. I have to do something many times to get it. It helps to know how I need to finish so I can start.”

Liz’s last sentence gave me a clue of how to help her. When I am teaching Liz a new skill I let her help me finish what I am doing instead of starting from the beginning. For example, in making her favorite Tator Tot hot dish she began by adding the cheese layer to the meat and topping it with the potatoes. I helped her carefully put it into the oven, set the timer, remove it and proudly exclaim she had done it ‘all’ herself. The next time she opened the soup and added it to the fried hamburger and onions. She poured the hamburger mixture over the mixed vegetables and remembered how to finish the hotdish on her own. Building skills backwards provides the joy of completion.

I have learned to change me. I cannot control my daughter’s behavior due to brain injury any more than she can, but I can provide a learning environment to teach her coping skills and adaptations. I can help her learn to become an advocate for herself by learning how her compromised brain and body work so that before she gets into trouble she asks for help.

Frames of Reference
“I am so stupid! Why do I do such stupid things over and over and over again,” Liz shouted. I had wondered the same thing myself. The answer was simple. Until she has enough experience with the same thing, at the same time, with the same people and the same surroundings, she is unable to access information in her brain. This is the difference between real life and a video game.

A video game follows the same path with the same codes for the same results. My daughter can win a video game once she has discovered the order to push the buttons. The repeating game process is a secure learning place for her. Unlike video, my home constantly changes. The dishes may be dirty or clean, the stove off or on, and the refrigerator empty or recently filled. People interrupt with phone calls and doorbells. These normal day-to-day differences that I hardly notice change her frame of reference.

For example, her frame of reference affected her spelling and math. Sitting at our dining room table, with a dog at her feet and mom next to her she aced her homework. She felt confidant carrying her knowledge in her head and her homework in her red folder to school. But her frames of reference change in the classroom. The desk felt different from our table, the young man behind smelled of cologne, and she heard the fluorescent lights buzz. The knowledge gained by hours of homework vanished. She broke her pencil and hit her desk. She knew, she knew it! Where did it go?

Her teachers began emailing me the next week’s lessons. On Sunday night I presented a sneak preview. We translated vocabulary into language she understood. I prepared her for new concepts by saying “I’m going to show you what Mr. Jones will be teaching, if you get frustrated when I am showing you, tell me and I’ll stop.” This gave her permission to gauge the amount of material she could comfortably absorb. She warned me when she felt frustrated and we switched to reviewing similar material she already knew.

As the teachers worked through the week’s lesson, Liz had ideas and stories she was able to contribute. She no longer remained silently shaking her head, appearing to understand while everything flew by.

The Process of Time
“Mom, if plans change it is like I am walking along and I fall into a hole. I don’t know how to get out. I need help to get back on track.” Liz lives from one process to the next. An event is a point of reference in her life much like we use time. If events happen too close together she becomes unable to managed and is stressed. If plans change she has nothing to fall back on.
Care giving a person with brain injury is hard. I have to remind myself often to take care of me so that I can take care of Liz. She resists when she doesn’t understand something. She is mean to those who love her when others have hurt her. We are the safe sentinels. She is drawn into environments of excitement and chaos, where she is hurt and taken advantage of. She makes strangers her friends and treats her friends as strangers. I love her unconditionally. Her growth to adulthood will be long and hard won. I treat her now as a chronological adult, albeit she is still a child in so many ways. I cannot walk in her shoes, but I can walk along side and guide her. I can be there to pick her up with compassion when she falls. I can keep my focus on looking deeper and forever changing my paradigm.