The Apple Tree Message

Just so we don’t take life too casually and forget that Angel has dissociative identity disorder, every now and then something happens to snap us back into the realization that Angel has many “parts”, especially an “angry” part and at least 2 other parts that took all of the abuse as an infant and toddler .  The other parts do not know these parts, but they are aware the exist.  Every now and then the angry one does something to remind them, lest they forget the great sacrifice he made so they could generally lead a happy, successful life.  Last night was such a time.  Angel had brought home an artwork on a large poster board.  He had painstakingly drawn a huge apple tree, and cut out apples.  He had a beautiful happy sun in the corner of the picture, and apples representing Marie, Stephen, Francis, Dinora, me and my husband, his dog, and 9 apples to represent himself.  It was a happy picture of our family.  Proud of his artwork, he had it hanging on the wall in his bedroom.  This morning when he woke up, the sun and most of the apples had been “blacked out” with black charcoal, (where did he get THAT?)  The only thing left untouched were 3 of his, representing the 3 parts of which he is not generally aware!  If it weren’t true, it would be unbelievable.

To read more about Angel’s story, and the story of the rest of our amazing family, please purchase The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane from I-Books.  Thanks for the support!

Advertisement

Living with Dissociative Identity Disorder

My 15 year old son, Angel, was diagnosed with ADHD, (inability to pay attention in class, his mind “wandered”, he couldn’t keep on the topic,) Reactive Attachment Disorder, (inability to bond with parents,) OCD (obsessed with certain rituals and items,) Conduct Disorder (uncontrollable behavior at times,) severe Depression, (where he would curl up in a ball in his bed and be unable to do anything,) and Post Traumatic Stress Disorder, (violent reactions to certain memories or thoughts.)  These disorders, and a severe memory impairment, all turned out to be symptoms of another, more insidious disorder, Dissociative Identity Disorder, (previously known as Multiple Personality Disorder.)  All of his diagnosed symptoms were manifestations of different “parts” of his psyche, all developed in early childhood to allow him to survive horrific child abuse.  Angel considers himself a combination of his “parts”, a “we”.  It is normal for him, and we have lived with it every day since he has lived with us at the age of four.  He has received incredible special education services which enable him to spend most days in a regular 10^th grade classroom, but also allow him to spend time in a resource room if he feels the need.  All assignments are written down for him and all homework is done before he leaves school.  (This solves the memory problem.) 

            Angel finds it helpful to write his feelings down sometimes, and I wanted to share with you 2 separate essays he wrote:

 

            “”Wah! Wah! Wah”went the baby as he cried.  People walked by and ignored him.  “Wah! Wah! Wah!” he cried some more.  All he could hear were big, angry footsteps coming closer and closer.  A woman poked her head in the crib.  “SHUT THE HELL UP!”  she screamed at the top of her lungs.  This scared the baby more and he cried more.  The woman started hitting the baby all over.  The crying baby woke up the man who was sleeping nearby.  “Shut that kid up!” he screamed.  The man got up and started to beat the baby.  The baby left consciousness and a stranger took over his brain.  The baby did not remember anything after that.”

 

 

            “Angel is a fifteen year old boy who has a rare disability.  His disability is called Dissociative Identity Disorder, or DID for short.  A lot of times, he does things and does not remember doing them.  Most of the time he has no knowledge of what a certain part did or said.  It is basically like having octuplets  in your head.  People ask the wrong octuplet a question and he doesn’t know the answer, so he has to ask inside to see who knows the answer or who remembers.  This effects him in a lot of ways.  The most important way is with academics.  Most of his parts are smart in different subjects, but the right one has to go to the right class.  If a part goes who doesn’t know the answers, then Angel will flunk the whole test even though one part knows the answers good.  This is the most frustrating thing about living with parts!  Other than that, it is most of the time good because Angel is never lonely in his brain.  He has some funny parts that keep him laughing.  He has a baby part that they all give a lot of love to because he wasn’t loved when he was a baby. He also has an angry part that they don’t know.  This part scares them, so they try to pretend he doesn’t exist.”

             This may seem extraordinary, but it is just an ordinary part of Angel’s life.  No big deal…

The Ups and Downs of Multiple Personality Disorder

Angel developed dissociative identity disorder during his early childhood.  The abuse he endured was so horrific that when he was being abused, a separate personality was born so that he would not have to feel the abuse.  Some are good, some are bad.  Some are female (?), some are male.  Some have aged with him, and at least 2 are still babies.  This is not something I could invent.  I am not making a big deal out of it.  “It” just is a fact of every day life that we try to live with!

Today, Angel was at a friend’s party.  He has one personality that is friendly, game show host upbeat, polite, thoughtful of others and the type of person who others adore.  Andy indicated he used this personality every time he went to a new foster home in the hope that that family would not reject him.  Unfortunately, this personality cannot maintain him for long periods of time, as other, more dangerous, personalities invarianly emerged.  None of the foster families could handle this “quirk”, this change from, dare I even say it, Angel to Devil.  Of course, it had not been diagnosed until he was in 3^rd grade, so none of the families could have know what really caused his “severe mood swings”.

His “game show host personality” (as he calls it) was at the party today.  He lasted 6 hours before he called me to pick him up.  While I was at the party picking him up, 5 different people came over to me to tell me what a joy he is!  That he is the best kid around!  That he is so polite and helpful!  And I thought to myself, “If they only knew…”

Once in the car, Angel’s smile vanished and a look of sheer anger appeared.  He held his head an announced that his “parts” (which is what he calls “them”) were fighting.  He cannot let one part out for so long without the rest fighting, he had explained a few years ago.  It was excruciating for him to be so nice all day, he said.  I knew the anger he displayed could be dangerous, and I encouraged him to come home and take a nap, which he did.  He crawls into a fetal position and falls asleep.  In the middle of the night, the “part” that is so emotionally needy will wake up and scour the kitchen for food.  He will engulf anything edible, trying to feed his heart.  Sometimes when he falls back asleep with his stomach full, he will fall asleep and his infant self will come out.  Sometimes this self is so young that it does not yet know how to use the toilet, or it gags on regular cereal. (As an infant, it can only eat oatmeal.)

Angel knows about 10 of his parts.  He knows there are several “mad” ones that he does not know.  These are the  parts that were abused, and if they become known to Angel, then the memories of the abuse would come flooding back.  So they remain hidden as Angel could not psychologically survive the memories at this age.  Slowly they have become known to him, and some of the angry parts have joined the rest of the parts he knows.  Through them, he remembers foster mothers who left him lying on his back, crying for hours.  (In reality, when he came to live with us at the age of 3 he had a flat back of his head from lying so long.)  He remembers them coming in and yelling at him to shut up and not helping him.  He had 4 foster moms reject him, and it physically damaged his young brain.  The angry parts he does not know do bad things to him.  They resent the fact that he is living a nice life and they had to endure the abuse.  They have done things like destroy his homework, steal his cell phone, laptop computer, Ipod and other precious items.  (We’ve never found these items, and once he is conscious that they are gone, the trash has been taken away, so we had nothing to search.) Once, after his second computer  disappeared, I thought I had outsmarted the angry ones.  I locked his computer on a cord to his bedstand.  “There!” I thought.  Let’s see THAT disappear!”  It stayed fine for a week or two.  Then, one morning I woke up to Angel screaming.  “Someone” had stomped on his computer, breaking the keyboard and snapping the screen off.

Angel has been in therapy since the 4^th grade, and he has made considerable progress.  Previously, he would study for a test in school and I’d test him on the way to school and he would know the material 100%.  A half hour later he would take the test and in handwriting of a 1^st grader, he would flunk it wrong answers.  Through therapy, his parts have learned to cooperate.  Now only the “smart ones” go to school.

Angle has been to Baltimore and counseled by the leading expert in Dissociative Identity Disorder, Dr. Joy Silberg.  He knows the goal of his therapy is integration of all of his parts.  He has indicated he does not want that, that he would be lonely without them to keep him company.  It looks, however, that it will be a long time before he is completely familiar with those angry parts.  They are still protecting him because they are holding the memories of his abuse!

Random Thoughts on Life with Children with Disabilities

Thoughts Regarding Life with Several Children with Disabilities

• When you have several people in your family, (ours has 6 at home,) put names on toothbrushes.  They are only available in so many colors…
• Taking multiple pills is easier if they are placed in a little plastic cup.  Using a hand is not always the safest way to guarantee they will all get into the mouth. (Before I discovered this, I was finding pills here, there and everywhere, especially between the couch cushions.)
• Keep extra pills and a bottle of water in your car in case you are delayed and a child would miss a dose.
• Even though it might be easier, do not schedule doctor’s appointments at the same time for more than one child.  I have learned that there is a direct correlation between the difficulties to be discussed about one child with the doctor and the misbehavior of the other child.  I also usually take the child with the appointment out to eat afterwards for some “quality time”.  This seems to encourage good behavior at the doctor’s.
• Don’t stress out over things that are unimportant in the scheme of things.  I try to clean house, but rarely have time to do a great job.  I don’t care.  I try to have a nice, family meal every night, but only succeed three or four nights a week.  I don’t care.  I try to dress my children nicely for the holidays, but they invariably pull the new clothes off to wear more comfortable ones.  I don’t care.  The house is not filthy and neither are the kids, and the kids are not starving or overweight.  My expectations are low so I am always pleased to meet them.  If I am able to exceed my expectations, I am thrilled beyond belief.
• Find time for yourself and your significant other (if you have one.)  This relationship must be nurtured if he/she is expected to nurture the children.  Stressed out parents affect patience levels.  My children have always had a bedtime of 9:00 pm regardless of age.  They can watch tv, talk on their cell phones, read or do schoolwork, but quiet time in our house is observed at 9:00 pm.  This guarantees quiet time for the parents.
• Take a few days off without the children.  Again, the parental relationship needs to be primary.  The statistics of divorce among families with children with disabilities is staggering.  I work hard at not being that statistic.  Going away without the children takes a great deal of planning, but the reward is a stress free weekend.  With my family, this is also costly because I need to arrange and pay for supervision for 3 separate children.  Again, it is less costly than divorce.
• I make sure the children pick up the dog poop in the backyard BEFORE I rake the leaves.  (I didn’t do this once and boy was I sorry!!!)
• I drive a mini-van with 4 bucket seats and a back bench seats.  This leaves 3 separate bucket seats so the children don’t have to sit directly next to each other and each one has a window seat. Rides have been quieter since I bought this car.
• We try to live within our means financially.  No costly trips to restaurants.  No plays, concerts or other costly entertainment.  I buy clothes at 2^nd hand stores and grocery store brand food. It is stressful enough worrying about the children without adding financial worry.
• You cannot yell at a deaf child.  They will just shut their eyes and they cannot see you signing the angry words!

I find the humor and happiness in life:  watching my daughter  who is deaf in her dance class with a big grin on her face,  joking with my son who has dissociative identity disorder that he needs to check with “his people” before he makes a decision,  watching my 17 year old son with Aspergers when he is holding a wriggling snake and describing everything you’d ever want to know about it, and watching my husband cook supper with my daughter.  She used to be a very picky eater, but now she eats everything she helps cook.  Who knew?

Pain is in the Eye of the Beholder…Part 2

(I apologize in advance for this post not being in my usual upbeat prose, but the topic is a serious one.  Please feel free to click away…)

I mentioned in Part 1 that 2 of my sons have a high pain threshold, for two very different reasons.  Steven does not feel pain because his “electrical wiring” is messed up as he was born to an alcoholic birth mom who also used heroin and cocaine.  He has a severe sensory integration deficit where, basically, light touch hurts and pain doesn’t seem register in his brain.  It has made for an interesting childhood.

Steven has more stitches in him than Frankenstein, and we have been to our local emergency room so often that they have a cubicle reserved for us.  (In the interest of full disclosure, I have to admit that the latter part of that statement is exaggerated!)  An active boy, he would often fall off of his bike and get right back on without any acknowledgement of an injury.  The only way I would know would be when he would come home at night and a portion of his clothes, a sleeve or a pants leg, would be covered in blood.  Upon inspection, I would find the culprit: a long gash requiring stitches. Due to the lateness of the hour, all of the walk-in clinics would be closed, so off we would go to the emergency room.  (His last gash was from under his knee down to his ankle.)  The ironic thing is, because of Steven’s sensory integration deficit whereby light touch hurts, he would scream in agonizing pain when they would put the Novocain needle in.  A few times they allowed him to choose to have the stitches done without Novocain. On occasion, they have had to sedate him in order to put the Novocain in.  Steven has also broken a bone in his foot and his hand, noticed only when he was walking or using his hand oddly. Through his school program, he has volunteered for several years at a reptile education center.  He has been bit several times by the snakes. but would keep on doing his job, wrapping his arm or hand in a towel so the blood wouldn’t get their tanks all dirty.  As a young adult, he has learned to manage this unique quality of his, and he has not been injured in well over a year.  (Knock on wood.)  Of course, he has also become much more sedate…preferring video games and tv over BMX bike jumps! His wild days of adventurous antics are diminishing, along with his injuries.

Angel, who is fifteen years old now, has a very different and complicated reason why he does not feel pain.  He was abused so badly as an infant and toddler that he developed Dissociative Identity Disorder.  When he was being abused, he would develop an alternate personality which would not feel the pain.  Even though he is safe from harm now, the abused personality continues to do his job and protect him from pain.  The best example of this is the fact that Angel has had persistent problems with ear infections, but they could only be diagnosed by a doctor because he would never acknowledge the pain so we didn’t know they were infected.  One morning when I went to wake him up, his pillow was covered with blood.  When he sat up, blood was dripping out of his ear.  I called the ear doctor who saw him immediately.  Although Angel was about ten when this happened, and he  jumped happily up into the exam chair like a toddler, swinging his legs back and forth while he sat.  “Hi, Doc!” he said excitedly.  “Can I play with your thingy there that listens to hearts?” he asked as he reached for the stethoscope.  The doctor explained he needed to use the device to look in his ear. “Cool” Angel said.  “If you look in there can you see all the way to the other side of my head?” he joked, while he giggled.  The doctor looked in his ear and pushed his stool back in amazement.  He informed me that Angel had a fractured ear drum from what looked to be an extremely bad ear infection.  The doctor looked at Angel and back at me.  He said it was unbelievable.  Not only is an ear infection painful, but an ear drum ruptured as much as his was would cause excruciating pain. He said he had grown men crying like babies when they came in with an injury like this. And there was Angel, grinning and swinging his legs back and forth in the examination chair, just like a happy toddler, (one of Angel’s personalities.)  On the way out of the office,  he even asked if he could get a sticker, and he chose the Sesame Street ones!  The doctor just shook his head in amazement!

The major downside to Angel’s situation, besides the obvious problem that it is difficult to determine if he is injured, is that a part of him DOES feel the pain. Because he does not acknowledge it generally, it goes untreated and the part that does feel the pain does so unnecessarily.  This may be very hard to understand, and possibly unbelievable, but the fact is, the part that feels the pain is very resentful that the “others” are safe and seem to lead a happy life.  After many years of counseling and better understanding his condition, Angel and I see the interactions between his “selves”.  The funny part is, his painful self will actually sabotage the other parts if they are doing something good or if they own something of value. Through counseling, he has been able to be very successful in school.  (His “smart parts” attend, and they would get a lot of attention for their good work.) As if jealous, several class projects were found broken in a heap on the floor the morning he was to have turned them in, and research papers would find themselves mysteriously erased from the computer.  Angel also had two laptop computers “stolen” in the middle of the  night from his bedroom. He wouldn’t tell me for a week or so, so I couldn’t search for them.  We could never figure out where they went!  He was sure someone was sneaking into his bedroom at night, but I suspected his part that had been abused was throwing them away.  We were never able to prove it because the garbage had days ago gone for its final journey to the dump.  I finally bought a lock and locked the laptop onto the desk.  A few days later, the laptop wasn’t stolen, but the keyboard was smashed to pieces!  Angel was also the proud owner of an IPhone that kept disappearing.  For days, even weeks, we couldn’t find it.  Then, it would pop up under the base of a living room lamp, in the bottom kitchen drawer under the towels, and once even IN a sock in the BOTTOM of the sock pile. Angel does not remember ever doing anything with his phone of this nature, but he does have a problem with memory lapses.  For a long time, even though he is fully aware that he has “parts”, he has denied the existence of this vengeful part because he could not imagine himself doing anything detrimental to his prized technology.  A few too many times of having his phone disappear, though, has convinced him that this part is lurking in the background…

Pain is In the Eye of the Beholder…Part 1

(Because this post is too long,  I am going to split it into 2 parts, one now and one in a few days. I don’t want anyone out there reading to get bored, you know!  If you want to be sure to read the second part, please click on “E-mail Subscription” on the side of this post and put in your e-mail.  Then, the 2nd part will be delivered right to your front door, like a newspaper!)

I happen to be blessed (?) with two sons who do not feel pain normally.  It took me a while to figure this out.  I  knew when I took them to the playground when they were three, four and five years old, they would run around, fall, trip and bang into things as much as the other kiddos did, but they never came up to me crying, like the others did to their moms.  I actually thought how lucky I was that they weren’t “whiney” like the other little ones, whom I considered to be “wimpy”.  As the boys have aged and accidents have happened, I have learned that the fact that they never came crying to me over little hurts and bruises was a sign that they did not FEEL the little hurts and bruises!

Steven, who was born addicted to heroin and cocaine, has always had “wiring” that is abnormal.  He has had a lot of diagnosis; ADHD, OCD, ODD, BPD, autism, Asperger’s, and sensory integration deficit, but to me it all boils down to the fact that his nervous system/brain developed in the embryonic fog of a drug addicted, alcoholic birth mother.  Like many children diagnosed with autism, he has severe sensory integration deficit.  When he was younger, he would throw himself on the floor, cry and bang his head if there were a tag on his shirt or if the seam in his sock were crooked. Light touch actually HURT him.  I remember taking him in the grocery store with him sitting in the baby seat when he was about 2 years old.  If I absent-mindedly gently rubbed his little arm, he would scream and yell “STOP HURTING ME!” (to which I would slink away hoping no one in the store heard or noticed…)

Steven cannot tolerate being touched gently, but he loves deep, hard hugs, BEAR hugs.  These feel good to him.  This “wiring problem” (as I affectionately call it,) impairs his ability to realize if he is hurt.  The best example of this was one summer day when we were cleaning out the freezer.  It was one of those old fashioned freezers where frost had built up all around the inside.  After I scraped it out, we took the slush outside and thought it would be fun to make snowballs out of it.  There we stood in the front lawn, throwing snowballs at each other in the 80 degree heat!  Steven got hit in the eye with one, but quickly brushed it aside and threw another one back. We had great fun, playing until the “snow” had melted.

The next morning, Steven woke up and his eye was bright red and swollen.  He did not complain of any pain, but I still  I quickly called an eye doctor whisked him off for an exam.  While at the counter registering, the receptionist asked me how it happened.  I told her he got hit in they eye with a snowball.  She stared at me for a long time, so I gave her the cleaning out the fridge story.  Again in the examining room, the assistant asked me how it happened.  Snowball again.  She wrote it in his chart.  “Hit in eye with snowball.”  It was August, and it was pretty funny.  When the doctor examined his eye, he was incredulous that Steven was not shrieking in pain.  It seems that a piece of ice had scratched off pieces of his cornea!  It is supposedly very painful, but did not faze Steven in the least.  He was sent home with cream to put in his eye every several hours and he healed up fine.

Angel, on the other hand, does not feel pain because he has Dissociative Identity Disorder.  In layman’s terms, this disorder developed because he was so badly abused as an infant and toddler that in order to protect himself, his brain split off into “parts”, with one “part” absorbing the pain of the abuse to keep the other “parts” safe. This was a coping mechanism he developed in order to survive.  (Of course, when he was younger, we were unaware of this diagnosis.)  One day, when he was about four years old, I went to pick him up at pre-school.  The teacher told me he had been pushed off the top of the jungle gym by another child and that he may have hurt his hand because he was holding it a little funny.  He was not crying and did not complain of any pain, but I decided to zip him over to the emergency room anyway to have it checked out. He smiled at the doctor who examined him, and seemed to enjoy the attention.  When the doctor examined his hand, it was obvious that the problem was not his hand, it was his entire shoulder and arm.  They did an xray, and we learned he had broken his shoulder!  Again, the doctor questioned how he could possibly not be screaming in paid, and especially how he could have managed to spend the day in preschool!  At the time, I did not know how it was possible either!

These are just 2 instances where Steven and Angel were hurt and did not acknowledge the pain, but I was able to witness this phenomena several more times, episodes which I will share with you in Pain is All Relative, Part 2!