The GPS is Set to Home

I don’t write much about my son, Angel, who has dissociative identity disorder. It seems to be such a sensationalized topic in the media that I don’t want to trot him out to add to the scrutiny. The fact is, he leads a pretty normal life.

After years of counseling, (which continues) he understands his issues with his “peeps” very well. He is appreciative of the mechanism of their development because he has only minimal memories of the severe, prolonged abuse he suffered as an infant and toddler. (Who can DO such things to babies????) He had worked with a psychiatrist who wanted to meld the 12 personalities, but Angel was not in agreement with this treatment. To him, it seemed like abortion because each of his peeps was valuable to him.

11 of his personalities live contently together. He can sometimes be seen staring off into space with a slight smile on his face. When I ask him what’s going on, he says his peeps are having a tea party in his brain and he starts to laugh. He has told me many times that he appreciates having peeps because life is exciting and he is never lonely or bored.

The 12th personality, the “asshole”, used to appear uncontrollably when Angel got angry. Angel learned through therapy to accept this personality because this is the personality who endured most of the abuse. (He does not know this personality well, because to know him would be to remember his abuse.) In order to temper any damage that could be done by the asshole, his peeps have learned to work together to nurture and control him so he is no longer dangerous. Quite a feat for a brainful of peeps!

Angel works as a security guard in the evening, sometimes through the night. He loves this job because it can be done by most of his peeps, so there is no fighting over who gets to come out. He has a nice circle of friends who understand his issues, and he feels comfortable in social situations with them. They know that if he suddenly starts to dance wildly and strut his stuff, his “diva” personality has the floor. (She loves pink boas and nail polish.) Or if he becomes the center of attention, leading the activities like a pro, his “game show host” personality comes out. Or if he just sits in the corner, withdrawn, his baby personality comes out, too frightened of the world to interact. This peep will need to be driven home by one of his many friends.

Driving is the biggest issue because one peep might be driving somewhere and another peep might take over and not know where they are going. He has learned to accommodate for this problem the way he has accommodated for all issues that have come up in his short life. He now keeps his GPS set to home so they can all find their way home!

With all of these personalities, he is just Angel. Accepted by his friends and family in his amazingly normal life.

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

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Under the “Dome of Silence”

I am really dating myself, but my favorite tv show to watch when I was a child was “Get Smart”, a spy spoof where Maxwell Smart comedically played an agent who always “got his man”, even when he didn’t know how he did it! I relate so well to Maxwell Smart and his “methods”, because my life is been pretty much the same!
But their infamous concept, the “Dome of Silence” flittered through my mind recently in an unpleasant way, a way that made me change my thoughts in a major way.
My daughter, Marie, who is deaf, has been hospitalized again. For parents of children with severe psychiatric disorders, y’all know that hospitalizations are a recurrent theme, no matter how well a child seems to be doing. Life with such a child is full of peaks and valleys, and sometimes the valleys need a tune up. As conscientious parents, we probably all play the same game…do we visit every day? Do we bring food and drinks? Games? Puzzles? In other words, do we turn each hospitalization into a reward for being there?
My brother’s schizophrenia emerged when he was just emerging himself into young adulthood at the age of 18. This was a surprise disability on top of his already existing developmental, vision and hearing disabilities. As my parents aged, he eventually lived in a wonderful group home, but HE also needed “tune ups” in a psychiatric hospital, generally after an incident where the aliens told him to walk ten miles to the train station, or throw himself against the wall as punishment for some unknown offense. These hospitalizations were regular, and each and every time my mom would visit every day, bringing with her his favorite desserts, or a milk shake or ice cream sundae. Her heart ached to see him in the hospital so often, so she would sit there for hours with him, holding his hand or rubbing his back. It made her feel better to visit with him, and it made him feel better also. In fact, it made him feel so much better that the frequency of his “tune ups” increased. I learned as a young adult that being in a psychiatric hospital should not be rewarded with food and puzzles, or even with visitation every day.
I have tempered my need to mother my daughter with the need not to make inpatient hospitalizations seem better than the residential school in which she lives. Following my own instincts, which were reinforced by Marie’s social worker and psychiatrist, I have limited my visits. Yesterday, however, I changed my mind.
The hospitals have all been wonderful at providing ASL interpreters for at least 12 hours a day, which facilitates her conversations with nurses, social workers, unit workers and her psychiatrist. Marie does not, however, want to utilize the interpreter in conversations with other children. She tries to fit in with them, but does not understand what they are saying or laughing at. Being somewhat paranoid, (aren’t all teenagers?) she suspects they are laughing at her. She tries to join in, and they may include her for a few minutes, but soon the conversation continues over her head, and the children are once again laughing and joking and not including her. As I was leaving yesterday I witnessed this happening, saw the look of sadness in Marie’s eyes and noticed that she was holding back tears so as not to further embarrass herself in front of the other children. She looked so alone, and in reality she was. The other children were under a “Dome of Silence”. She could see them talking, gesturing and laughing, but could not hear or understand what they were saying. I don’t know why this obscure reference came to mind, but it did, and the visualization of it has changed my way of thinking. I realized that her isolation from others trumps the need not to reward her for being in the hospital. Nothing in the hospital could be a reward for her, as she is not part of the community as she is in her school. If anything, one would think she would be so adverse to being in the hospital that she would do anything in her power not to be hospitalized. Ah, the irony of that nostalgic “Dome of Silence.” I think I will visit for a few hours today and bring her a milkshake. We will sit there and “talk” in ASL and I will hold her hand like my mother did with my brother. She will no longer be sad and isolated, at least not during my visit…

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To read more about our life, here is a link to my book:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

THE ABCs of ADHD

I’ve read the articles and books on ADHD.  I know the discipline methods, rewards and time outs, the methods of Ross Green (from The Explosive Child) and the medications that work best.  But I also know the realities of ADHD, having 2 children with ADHD and 2 with ADD.  In real life terms, the ABCs of ADHD/ADD are:

Attention! Always on alert for dangerous situations due to impulsive behaviors, such as running across streets without looking, grabbing a butcher knife to cut the end off a banana, running up the down escalator, and grabbing the dog or any other animal roughly and the dog (or other animal) retaliating by biting (or scratching.)

“Be careful!  Be careful!  Be careful” is the parent mantra.

Climbing climbing climbing:  out of the crib at age 15 months, out of the bedroom window when a teenager, on rock walls and curbstones and couches.

Don’t touch that!  Don’t do that! Don’t hit her!  Don’t pull that!  Don’t eat that! Don’t hurt it!  Don’t break it!

Exhausted parents trying their best to keep up.

Friendships are difficult.

Go!  Go!  Go! They’re always on the go!

Helpless parents, unable to control their child’s behavior, especially embarrassing in the grocery store under the staring eyes of others, judging them.

If only he’d…    If only she’d….  Parents dream for a different lifestyle.

Jumping Bean:  he goes here and there from friend to friend to friend, never staying long enough to establish a real friendship.

Kitchen walls are written on, bathroom doors have holes kicked in, curtains are ripped, bedrooms are messy.

LOVE.  Parents give unconditional love, but the behavior doesn’t change because the  ADHD remains…

MEDICATION!  MEDICATION!  MEDICATION! Alleluia when it works!!!!

Not paying attention in school so schoolwork suffers: not paying attention for homework, so it’s a nightly fight: not paying attention to other’s feelings, so no friendships are formed.

Overload happens easily and tantrums result. Keep it quiet.  Keep it simple.  Keep it under stimulated for peace.

Psychiatrists are our best friends!

Questions!  Questions from them all the time! Especially hard to escape when you are stuck riding in the car together.

Rewards for good behaviors; stickers, ice cream, Playstation, tv.

Self-esteem is low, parent  and teacher patience is limited so he’s always the troublemaker and never measures up.

Time-outs in the seat till we’re blue in the face.  All the time spent in time-outs would add up to a year in the life.

Understanding is needed from parents, family, friends and teachers; understanding is often in short supply.

Very draining on all, child and adults.

Whining, whining, whining until their parent’s ears hurt.

X-rays, CAT Scans and emergency room visits:  active behavior results in injuries.

YIKES! What has he done NOW?!?!

Zest for life would be a polite way of putting it…