I’ve Never Been So Happy to be Sick!!!!

Just like everyone else’s, my life sucks from time to time! This past month has been one catastrophe after another. Marie, my daughter who is deaf, had again been hospitalized due to a dangerous PTSD episode. When in a dissociative state, she downed staples in an effort to kill herself. Ever the optimist, I was hoping against hope that her memories of severe abuse would begin to soften, maybe even heal. Alas, not yet…this will be a lifelong battle.

My son Angel, who had just begun to drive, was involved in a rear end collision. While slowing down for a red light, KAPOWEE! another car hit him in the rear, pushing him into the truck in front of him. He was briefly hospitalized for whiplash, but the emotional impact was even worse. Sleeping is a luxury he no longer enjoys; wild fears and thoughts flood his already befuddled mind. He has stopped doing the things he used to do, clearly depressed that his means of freedom no longer sits in the driveway. Through no fault of his own, his major pride and joy, his ability to drive around and help others all day, has been destroyed. The car, safe and well running, was bought new in 2008. The insurance company only paid the Blue Book value of $4200. Because we do not have additional financial means, trying to find a car for such a small amount of money has been a real challenge, and every day that goes by without a car for Angel pushes him further and further into depression.

Marie’s recent birthday party was ruined when Steven “acted up”…having a full fledge outburst. (He has a severe sensory deficit with which he can not tolerate crowds or things not in his regular schedule. I should have had the foresight to arrange for him to be elsewhere.) Steven punched a hole in the wall and swore obscene obscene obscenities, (I know most obscene obscenities, but he came up with a few that were even more hard core.) As he stormed off down the street to settle himself down, the damage had already been done. Mortified at this behavior that most of our guests had never seen, everyone left, making a bee line for their cars, children in tow. Marie, who in her deafness had not heard the commotion, had been fishing on the dock behind our house. When she turned around, everyone was gone! She was quizzical at first, but not being a real “people person”, she took it in stride, especially because everyone had left their gifts for her!

My own work has been more difficult. The agency has hired a public relations person, and suddenly referrals have been flooding in. With an exponentially increased workload, putting in 50 hours a week has not been uncommon. What HAS been uncommon is the wrenching ache that developed in the pit of my stomach. Food would spew out of my stomach a half hour after I’d eaten. I felt awful, but I trekked on, saltine crackers and ginger ale bottle in tow. All my life, stress did not bother me. I could handle anything! No problem! Que sera sera! A little stress was not going to deter me from my job duties! (Like a mailman, neither ran, nor snow nor dark of night would keep me from my mission.) But as the stomach ache dragged on, my enthusiasm waned. I actually became depressed! My life, as I knew it, was over… or so I thought…..

After two weeks of eating nothing but chicken rice soup and saltines, I dragged my depressed little body to the walk in clinic. Taking one look at me, they sent me to the hospital emergency room where an intravenous was started to alleviate my dehydration. Laying there, I watched several bags of liquid force fed into the little vein in my hand. They did many tests, some to which I may have objected but I was too weak to stand my ground. Lo and behold, I was really sick! It wasn’t stress! It was salmonella poisoning from an egg breakfast at a local diner two weeks previously! Although I lay there on the gurney still feeling ill, happiness filled my heart. I was sick, not stressed! Life would return to “normal”, including all of the small tragedies and heartbreaks and problems associated with having five children with disabilities. But I could handle it! Life would go on!

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The Baptism from HELL

I don’t mean to be blasphemes, but I am sure that all you parents out there with “difficult” children can understand what kind of hell we live with from time to time.  Most of the time raising children is heavenly, or at least like purgatory. However,sometimes there are those moments when it is just plain hell!

Our son, Steven, was adopted at the age of 3 after living with us since birth.  He was born addicted to heroin and cocaine, to a mom who was an alcoholic and, (GASP) cigarette smoker.  Although we loved his cute little face very much, the rest of him left much to be desired.  He was hypersensitive to sound, touch, smell, noise and any little thing that altered the peace in his little world.  Even as a 6 month old he would bang his head on the highchair if he was “stressed”.  He needed a strictly consistent schedule with no tags in his shirts and no loud noise from the tv.  We altered our life to fit his needs and things were fine, for the most part.

Then came his Baptism day.  First off, it was a change in his schedule, something his 3 year old body did NOT appreciate.  THEN, he had to get dressed up.  I remember thinking he’d never wear a suit and tie, or even a tie for that matter, so I managed to buy a nice pants/sweater outfit.  Unaccustomed to wearing sweaters, his body squirmed in this outfit.  Our church had arranged for a private ceremony, understanding Steven would not be able to be baptized during a regular church service.  We used the little chapel so as to cut down on the anxiety he would feel in the huge church.  His dad carried him to the altar with Steven’s head buried in his chest.  My husband, myself, our older son Francis and daughter Dinora stood by with Pastor Lorraine to begin the baptism.  Steven looked up and saw the baptismal water.  “OOOOOOOH NO!!!!!!”  he screeched.  “You’re not going to put that water on ME!!!!!!”  (He also had a fear of water I’d forgotten to mention…)  He jumped down from my husband’s arms, crawled on the ground, and crawled into the first dark, quiet place he could find…under Pastor Lorraine’s vestments!  There he was, under her vestments which were over her dress…I was MORTIFIED, (thus the “HELL” part!)  She, however, as the parent of three rambunctious kids, thought it was funny.  (God bless her!!)  She felt down for where his head was and she calmly proceeded with the baptism.  (Fortunately, you could see his head clearly outlined in her vestments.)  She did the whole ceremony with him completely covered.  I had a camera to document this momentous occasion, but was at loss of what to take a picture of!  When is it over, his dad gently dragged him out and home we went.  For any other child, a celebration would have been in order, but for Steven, it was home to his usual routine.  Same day as any other day.

PS.  I obviously didn’t learn from this experience as we attempted first communion for him.  At the age of 12, he met with our pastor for one-on-one communion classes as he was unable to participate in the standard classes.   He was then to join the other children on “First Communion Day”.  When the pastor called out his name, he promptly crawled underneath the pew, and curled into a tight little ball, where he stayed for the rest of the service…

Stress Busters…

Thoughts on things I do to reduce stress and remain sane while raising 5 children with disabilities:

Ø    I buy each person in my family their own brand of socks.  That way, matching them and giving them to the proper person is easy. Also, if the dryer eats a sock, there is always another one to match the spare.

Ø    My children have always had a 9:00 pm bedtime.  They don’t need to actually go to bed, but they need to stay in their rooms and read, watch television, chat on their cell phones or whatever.  This gives my husband and me a couple of hours of “quiet time” and also calms the children down before they fall asleep.

Ø    Every evening, during this time, I try to take a bubble bath.  I have a nice, icy glass of Diet Coke, read a magazine, (I have to much going on in my brain to read a book and remember it from night to night,) and wash with strongly scented body wash.  The scent really cheers me up!  If I feel really decadent, I will light scented candles.

Ø    I work.  I love my job. I get to talk to adults about current events and it gives me a solid foundation to “carry on” otherwise.

Ø    I schedule doctor, dentist and counseling appointments in the late afternoon, evening or on a Saturday so I do not have to take time out of work.   There are plenty of doctors, dentists and counselors who have evening and weekend hours.

Ø    I find places to take the kids where they can have fun, but that fun is contained.  They love the local dog park where they can cuddle and play with neighborhood dogs.  We go to a small local beach where they pick shells, catch sand crabs, and sometimes even go in the water.  We often go to movies such as “Shrek”, “Ice Age”, “Madagascar”  “Up” and so forth.  There is plenty of adult humor in these movies and I am generally the one laughing the loudest.  We go to a clay studio where the children get to make and paint a piece of clay. (My daughter has done so many wonderful dishes that she will have a whole collection for when she sets up housekeeping!)  We regularly visit the neighborhood pool where the children love to swim and the ice rink where they love to skate.  These are both great self-contained areas where the children can be as active as they want and I can sit on the sidelines and wave.

Ø    I find places to eat where the kids can play and I can visit with a friend.  I do not have much extra time for a social life, so meeting friends for dinner is important.  We regularly eat at a restaurant that has a pool table and air hockey for the kids to play while I get to sit and chat.  Being with friends regenerates my batteries.

Ø    As I am often in the emergency room with one or other of my children, I have a “hospital bag” packed, not unlike the bag packed by expectant mothers.  In it I have several magazines for myself and my child,  several dollars in change for the soda machine, and a deck of playing cards to play with my child during the long waits for treatment.  I also bring an extra dose of any medication they are on.  Heaven help everyone if his/her Ritalin or Concerta  wears off while waiting in the hospital. I learned to do this after several hospital rooms were in danger of being destroyed and my child was placed in restraints because they could not control themselves.  (I, too, think the oxygen hoses, the emergency buttons and the many containers of medical supplies are interesting, but I am physically able to refrain from playing with them and throwing them around the examining room! My children not so much…)

Ø    I get plenty of sleep.  If I don’t get enough sleep I am too crabby to face the day!  I am also “low maintenance” in that I dress comfortably not stylishly, I wear minimal make-up, and I have an easy hairstyle.  I may not be the most elegant mom around, but I can get ready for anything in ten minutes!

Ø    I am a “relaxed housekeeper”, to put it mildly.  My house is generally picked up, but heavier housework is not “my thing”.  I would much rather be off at the dog park with my children than sitting home washing the floor.  I do not think that when I die I will say “Oh, I wish I’d kept a cleaner house.”

O I listen to books on CD in the car.  It takes my mind off of things and I can be entertained.

O     I eat.  Yes, eating is bad for you, but I eat things like Cheerios and string cheese. They keep my mouth and hands busy and satisfies my craving to stuff something in my mouth!

O I do not take things too seriously.  Shit happens.  Move on.

Ø    I write this blog.  Writing has always been an interest of mine, and by writing this blog, I am able to take some of life’s daily stressors and bang them out on the poor computer keyboard.  Thanks for reading this and giving me an excuse to write!!!!!

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!

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!

The Turtle was TTTTTHHHHHHIIIIIIISSSSSSS Big! (Another Fish Story)

My son, Steven, has autism, later diagnosed as Asperger’s syndrome.  He has always had accompanying obsessive compulsive disorder, attention deficit hyperactivity disorder and sensory integration deficit.  Our house is on a little lake, and one of Steven’s quirks is that he will not touch the water.  This is very ironic because his Asperger’s obsession is with reptiles, turtles and fish.  He often spends the entire day in our backyard catching fish and turtles.  Often, he takes the canoe out and paddle around, trolling for fish as he goes. He will never step in the water, though.

Our family has many get-togethers in our backyard.  With a paddleboat, canoe, kayak, rowboat, sailboat and raft, there is always plenty for the children to do.  While Steven likes to play on the raft with his friends, he always paddles out there in the kayak, again never putting a toe in the water.  He would often scare his friends, siblings and cousins with tales of HUGE turtles which lurk under the surface.

One afternoon a few years ago, while I was taking a nap, (one of my favorite activities,) I heard Steven screaming at the top of his lungs.  I’d never heard him scream like that before.  (I’d only heard tantrum screaming, nothing like this blood curdling sound.)  I leapt up out of bed and ran outside to see what I assumed would be a tragedy awaiting me.  There was Steven, in the canoe, holding his very large fish net which he often used to catch fish.  In the bottom of the canoe were 2 of the largest turtles I have ever seen anywhere!!!  They were more than 2 1/2 feet across!  He was standing on the seat screaming and I started screaming also.  I learned that he had caught them in his net while they were “stuck together” (ie mating.)  I’m looking at these 2 huge snapping turtles thinking there is no way they belong in our little lake…they should be in a zoo somewhere!  While I am thinking, one of the turtles casually climbs over the side of the canoe and falls back into the water!  After much wariness, but a sense of what would be the right thing to do, I suggest Steven flip the other one back into the water with the oar.  As he tries to do so, the turtle snaps at the oar breaking it, but not before gaining enough momentum to slip over the side of the canoe into the water.  Steven looked at me and said “I  TOLD you there were big turtles in the lake!”  This sighting definitely put a crimp on swimming for the rest of the summer…

As a follow up to this story, last summer one of the huge turtles was found dead on our beach.  Its legs and head were bloated and it looked awful.  I called the city’s animal rescue league and asked them to come get the dead turtle.  The woman who answered the phone obviously thought I was demented.  “Just THROW it back into the LAKE, ” she said several times.  I told her several times it was too BIG to just throw back into the lake, and she reluctantly agreed to send “someone” out to take a look.   The gentleman came in a city pick=up truck.  He ambled out of the truck in our front yard, put on gloves, and swaggered into our backyard, anxious to see this “huge turtle.”  As he got closer, he let out a loud “HOLY SH*T!”  Then he called for back-up. It took 2 men to carry this thing and plop it in the back of the pick-up truck!

Ever since first finding the turtles, for some odd reason, the children are not so anxious to go swimming…

I Smell a Skunk

When Francis was three years old, his teacher in pre-school told the story about how her dog had been sprayed by a skunk and they had to give it a bath in tomato juice.  Francis thought this was the worst thing ever because he HATED tomato juice.

With both a severe vision impairment (legally blind) and obsessive compulsive disorder, Francis began to worry about getting sprayed by a skunk.  Obviously, taking a bath in tomato juice would be the most horrible thing ever.  He refused to go outside to play in our backyard because he was so afraid he would step on a skunk which he couldn’t see. We put up a chicken wire fence to keep the skunks out.  (Up until this point, we had never seen a skunk in our yard, but Francis was sure there was a skunk out there just waiting to rush up to him to spray him!)  He was still leery about going out and had a few more questions.

“What happens if the skunk jumps over the fence?” he asked, and we reassured him that skunks don’t jump that high.  (I don’t know if this is a fact, but it served the purpose of reassuring him a skunk would jump.)

“What happens if a skunk digs under the fence” he asked, and again we reassured him that skunks don’t dig under fences. (?)  It would have to be one motivated skunk to go through all of that work just to spray Francis!

His next question sealed his fate.  “What happens if the skunk sprays me THROUGH THE HOLES IN THE FENCE?”  I had no answer except to say that that was absurd, which would not do anything to allay his fears!  I gave up.  He didn’t go outside to play for the rest of the summer!

Stay Away from Me With That Umbrella

It happened again this morning.  It was pouring rain out.  I have to walk about 4 blocks from the parking garage to where I work.  It had been raining a LOT lately.  I had on boots and my jacket with a hood pulled over my hair to keep it from getting wet.  Several people walking near me kindly offered to share their umbrellas with me.  I politely declined.  You see, I have a real phobia about umbrellas.  Not much in this world scares me, (I have 5 kids after all.)  I was not afraid of sharks after seeing Jaws.  I was not afraid of snakes after seeing Anaconda and Snakes on a Plane. But put an umbrella near me and my knees begin to shake and I go pale. (I hate the video of Gene Kelly in Singing in the Rain!)

This fear dates back to my childhood.  I don’t know how or why, but I got the fear that I was going to be poked in the eye with one of those little knobby things on the spokes at the end of the umbrella.  Getting wet in the harshest downpour could not compare to the fear of getting poked in the eye, so I would never use an umbrella.  Of course, as I grew, I have realized that this fear is slightly irrational.

When my son, Francis, was going to Cambridge University in England, he took my mother and me on a guided tour of London.  Being London, it was raining of course.  Francis and my mom had umbrellas, I chose to get wet.  No big deal.  What’s a little water?  Anyway, we were in front of Buckingham Palace and Francis wanted to get a picture of my mom and me.  She and I put our arms around each other and smiled for the picture.  He took the picture JUST as SHE POKED ME IN THE EYE with her UMBRELLA!  It is incredible to have my worst fear captured in a picture.  The good news is, my eye stayed intact in my eye socket and didn’t really get poked out. The bad news is, I still have my fear of umbrellas….