Our Journey with Josiah
By: Raven McGee
I’M PREGNANT!
THE EVENT!
UP TO HIS FIRST BIRTHDAY
The Beginning
ONE TO TWO YEARS OLD
Instability
TWO TO THREE YEARS OLD - Self inflicted harm
THREE TO FOUR YEARS OLD
Outside influences
Rage
Bad Parenting
Order
FOUR TO FIVE YEARS OLD
Insomnia
Hope
The First Stimulant
Side Effects
FIVE TO SIX YEARS OLD
Ritalin and New Beginnings
Another Medication Trial
Failed Attempts
School
SIX TO SEVEN YEARS OLD
A New Respect
On the Right Track
Revelation
Experiences
Summary of Discharge Summary
Getting it all Back Together Again
SEVEN YEARS OLD TO PRESENT
And Here We Are
I’M PREGNANT!
The news came as a shock to me. 20 years old and planning a wedding to a 20 year old serviceman I had met six months prior, I was overwhelmed immediately. At first, I blamed the positive reading on the test itself. I thought that it was just an old test that had been on the grocery store shelf for too long. I had no symptoms other than a missed period. The second test gave the same positive result. Then I believed.
I sat on my mother’s front porch that evening sobbing and waiting for her
to get home from work. I’ll never forget the warmth, compassion,
and love I felt when I told her my news. She embraced me and we sat
and talked about how I felt, and what to do. She made sure I understood
that I had options and that she would be there with me no matter what I
decided to do. In those moments, I found a new love for my mother,
for not one unkind word did she speak to me. I realize now that she
was just as scared as I was. When at last I said a definite NO to
abortion, I felt, rather than saw Mother let out the long deep breath she
had been holding. Without words, she made me feel that she was proud
of me, that she loved me, and that we would get through this.
My wedding came and went and by January, my husband was sent to Korea for an 18-month term. Alone again, my journey began…..
The hardest part about being pregnant was being alone. All of my friends had turned 21 and were out partying and having fun. Between missing my husband, being jealous of their fun, and being just plain too tired to even be their designated driver, depression soon set in. I never once resented the precious gift growing inside of me, but I was at a loss at what to do with myself. I spent my days with my Granny, and my nights drinking chocolate milk and doing jigsaw puzzles.
Choosing a name for my upcoming new arrival was a fun. My mother and I read baby books, used our imagination, and finally settled on two names to choose from, both from the Bible. We decided we’d wait until my little one arrived before we made the final decision.
THE EVENT!
He came into the world on June 22, 1992 at 9:22 in the morning. After 14 hours of labor, he developed fetal distress and was delivered by cesarean section. He was a small baby, weighing in at 5 pounds, 10 ounces, had a touch of jaundice, but overall he was healthy.
Because of the cesarean section birth, I was put to sleep. Therefore, Mother was the first person to see and to hold him. She named him Josiah. I have a photo of the first time I held him and I think to myself “I wonder what I was thinking then”. The morphine drip affected my memory, and I often regret not being coherent enough to remember all the little details.
On the second day in the hospital, I received my first clue, though unrealized until years later. The nurses in the maternity ward told me that Josiah wasn’t sleeping very well. According to them, he was going through nicotine withdrawal. Yes, this immature young mother failed to put down her cigarettes during pregnancy, another regret. So, they held him a lot, rocked him a lot, and fell in love with him.
After three days cooped up a hospital bed, we were cleared for
‘take off’ and headed home. Family and friends were at my house waiting
for us when we arrived. Everyone cooed and fretted over the baby,
as people do when a new baby is introduced. When everyone had gone
home, and I was left alone with my little bundle of joy, our bonding began.
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UP TO HIS FIRST BIRTHDAY
The first five months of Josiah’s life was, except for numerous ear infections,
normal. There were no obvious signs of what was to come. He
was an alert baby, always sitting quietly looking around. I often
referred to him as my “little spy” because when he would wake up after
a nap, he was so quiet I’d look at him and find him lying there in his
portable crib just looking around. It was almost as if he was listening
to what was being said. Just soaking it all up.
Josiah’s first hospital stay came about when he was six months old. He had developed bronchitis and needed to be hospitalized for mild dehydration. In that three day stay, he learned to sit up, to crawl and to pull himself up. He was a VERY strong child even then. I stayed with him in the hospital (as any mother would do), but every time I would walk out of the room to eat, to smoke, or whatever, I would always come back to find him screaming and crying, the door would be closed and light turned off. I would get so angry with the nurses because I always checked with them, told them where I was going, and that I’d be right back. I made sure that Josiah was asleep before I left. Needless to say, the nurses and I did not get along.
The next few months were filled with all of the joy and happiness
that comes with the learning associated with moving around the house freely,
and trying new and exciting things. He walked at 9 months and was
learning to talk. The sleeping pattern also developed during this
time. We went to bed early every evening, and we woke up early every
morning. I had always gotten up early anywhere from 4:30 am to 5:30
am was normal for me. Josiah fell into this pattern as well.
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When Josiah was 10 months old, I knew something was not right. I had been around babies at that age, so temper tantrums were no surprise. However, the actions Josiah took during his temper tantrums scared the hell out of me. I had never seen a baby bang his head on the floor.
When I would pick him up off the floor (to prevent a concussion) he would rear back in my arms. Again, the strength this child had was surprising, so it took fast responses to keep him from rearing OUT of my arms.
I spoke to Josiah’s pediatrician about these “fits” and he said it was just a phase that he would outgrow, if he knocks himself out, bring him in. So, being inexperienced at motherhood and dealing with doctors, I did what he said. I watched him and when he started banging his head, I’d slip a pillow between him and the floor to keep him from hurting himself.
I talked to family members about this bizarre behavior and they
all said the same thing, “he’ll grow out of it”. I remember once
time specifically when all of the family was gathered at my Granny’s house
and Josiah became upset. Rather than bang his head on the soft grass,
he deliberately went over to the sidewalk and did it. One of my aunts
exclaimed “I would not have believed that had I not seen it with my very
own eyes”.
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ONE TO TWO YEARS OLD
In May of 1993, I divorced my husband and went to work. Josiah was turning one in June, so in an effort to get him around other children, I placed him in a home daycare with a loving woman who later became his God Mother. I never worried about his care with her because she was such a good mother to her own children.
One day while I was at work, I received a call from her to come quickly. When I arrived, I found Josiah with a Band-Aid across his forehead. Josiah had become angry over a toy that another child had, so he banged his head. Unfortunately, he banged his head on the track to the sliding glass door. Luckily he did not require stitches. He still bears the scare of that episode.
Again we went back to the pediatrician and the news this time
was “well he’s hitting the terrible two’s early”. My confidence was
fading fast. But what was I to do? I didn’t know anything about
bi-polar, adhd, or anything of the sort. Apparently neither did the
doctor.
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In September of 1993, tragedy hit my family, and I fell apart. My best friend (my mother’s youngest sister who was my age) had been murdered. Over the next few weeks, I found it very hard to cope. I packed our things and we moved to a house in the next nearest town.
The house itself was near a meat packing plant and the smell bothered
me a lot, so we packed up and moved in with my parents. I went back
to work then, and tried to get on with life. It was not an easy thing
to do. Josiah was still banging his head, getting into everything,
and biting other children.
The stress of it all became overwhelming, so we moved again. Back to the next nearest town but into an apartment this time. Again we went on with life, but after a couple of months, I decided I’d had enough. I called Josiah’s father who was now living in Colorado, we packed up and moved to Colorado.
The drive itself was horrible. Whether it was Josiah’s sensing my own fear and confusion at the time, or just car sickness itself I don’t know, but he vomited all the way to Colorado. We arrived, moved our things in, and tried once again for a normal life. It was not to be.
The night terrors began about a week after we moved in. Those horrible night time fits where he would not be conscious enough to know what he was doing. The screams, the body movements, it was terrifying. Sometimes they would last only a few minutes then he would sleep the rest of the night through. Other times, the screams would go on for an hour or more. All we could do was make sure he didn’t fall out of the bed.
The “rages” came soon after the night terrors began. Those severe temper tantrums that nothing and no one could stop. They consisted of head banging, screaming, kicking, rolling on the floor, and hitting anything within arm reach. I compared these episodes to Josiah fighting an unknown foe. Whatever it was that upset him so, he would fight and fight until he’d wear himself out and fall asleep. When he awoke, he would not remember the episode.
After four months in Colorado, the tension between his father
and me increased, so again we packed up and moved back to Texas and into
my parent’s home.
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TWO TO THREE YEARS OLD
A friend of mine had a house and was looking for a roommate to share it with, so we moved once again. It was during this time that the rages intensified. One evening, Josiah went into a rage so severe, that he began biting his own arms and hands. I could not stop him, my roommate could not stop him.
I called a close friend of mine and asked for help. She came at once and helped out. We both worked for an ICF MR facility so I knew she would know how to help me. She immediately told me to leave the room. Josiah was upset with me, so I needed to be out of the picture so that he could calm down. It took about an hour to get him fully under control again.
The next day, I took him to a different doctor for help. He looked Josiah over and wanted him examined by a Pediatric Neurologist for Autism. So, off we went to the hospital to be evaluated.
The evaluation itself lasted approximately 15 minutes. The neurologist explained that Josiah did not have Autism. He asked how I punished Josiah for wrongdoing and for bad behavior and I told him I spanked him. He said that spanking was good for children as long is it was on the buttocks. He made the comment that “He acts this way because there is no father figure, no man in the house”. (Just what I needed, another slap in the face, come on, make me feel even worse why don’t you!) He told me to stay consistent with the rules and sent us home.
We were back at square one. Now, during all of this time, I had virtually no help from my mother, or any other family members. No one could believe such an intelligent and sweet little boy could reek so much havoc. Though no one came right out and said “you’re lying”, they all thought it. I begged for help, but received none. By now, finding a baby-sitter was near impossible.
I came to the realization that perhaps these happening were due to our surroundings, so I found an apartment for us and we moved once again. Things settled down a little bit after we got settled in and we had a pretty much normal life for about six months.
Josiah had a fascination with trains, so when he turned three, my mother gave us train tickets on the “Hill Country Flyer”. It was a 30-mile trip through the country from Austin to Burnet. We arrived at the train station in Austin full of excitement. Mother had her video camera and was set to meet the train at every road crossing to video our ride.
We found our seats and were ready to roll… I thought. Before the train even left the station, Josiah went into a rage. “GET ME OFF THIS TRAIN!” he yelled. The screaming went on and on. We were stuck. We couldn’t get off the train, all I could do was hold him and comfort him until the train started rolling. He cried most of the way. I was never so glad in my life to get out of a situation as I was when we arrived in Burnet and got off of that train.
Everything got back to normal for a while, then THE NEIGHBOR moved
in.
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THREE TO FOUR YEARS OLD
I’ll never understand what makes some people just plain mean.
I don’t get how a grown up can find pleasure in tormenting a child.
I never expected to deal with such a person first hand either. I
myself had never been prone to violence, until then.
The apartment complex was set up in a three-sided square.
Each apartment had two big flower boxes on the ground in front of the units.
One of these boxes I planted flowers in. The other was dirt for Josiah
to play with his cars and trucks in.
One Sunday evening, returning home from a weekend with my cousin in San Antonio, Josiah went out to play in his dirt box. As always, I opened the window and sat on the couch, one eye on the tv, the other on Josiah. He had not been out there but five minutes when I heard this woman’s voice yelling at him “Get out of my f---ing tomatoes!” I immediately ran outside to see what was going on.
There, standing on the porch of the apartment next to ours, was this six-foot tall woman, hands on her hips scowling at Josiah. He was still playing with his toys, not realizing she was yelling at him. I walked over and asked her “What is your problem lady?” She went into this song and dance about how her husband was a police officer, and they had just moved in over the weekend and had planted tomatoes in the dirt box. Completely taken aback I stared at her like she was crazy. I said to her “I’m sorry lady, but this dirt box is in front of our apartment and my little boy plays with his toys in it.” “Well I didn’t plant tomatoes in it for some brat to ruin!” she yelled.
To prevent any further confrontations, I dug up all the flowers I had planted in the other box and moved Josiah’s toys to it. I explained to Josiah that he must not play in the other box any more and to stay away from that lady.
A week later, Josiah was playing in the courtyard in front of our apartment with another little boy who lived across the way. I kept watch through the windows as I cleaned house. I heard shouting and went out to see who was yelling and why. The other little boy’s mother was fit to be tied and she and all of her 5 feet was in a stance that looked as if she was about to hit the 6 foot woman. I brought the boys in our apartment and went back out to see what was going on. According to 5 foot, 6 foot went out and was cussing at the boys because they were too loud and were going to wake up her baby. They shouted at one another for 10 minutes or more, then went their separate ways, the last words coming from 5 foot “If you ever go near those boys again, you’ll deal with me, and I don’t care if your husband is a cop!”
So on and on it went, the sneaky 6 footer would deliberately walk
down the sidewalk just close enough to the boys that only they could hear
what she would say. The boys would run crying to get away from her.
She would say things like “you’re stupid”, or “get out of here you little
bastard” and so on. Fed up by now, I called the apartment manager.
Nothing could be done. Everyone just keep away from each other.
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Soon thereafter, the rages began intensifying once more. Day after day, she would say something mean, and it would send Josiah into a flying fit. Finally, I said that’s enough and called the police on her.
“I’m sorry ma’am, there’s nothing we can do, she hasn’t broken any laws.” “Okay then” I said, “I’ll take care of it myself”. However, before I could “take care of it myself”, she took care of me.
I had been going to computer school during the day in an effort to find a better paying job. One evening, I returned home to find a card stuck in my door from Child Protective Services. I called the number and asked what was going on. The caseworker explained that she needed to talk to me and would be there the next day.
The other tenants in the apartment complex were aware of the trouble the lady had been causing me and Josiah, and one by one, they came to me with information about how the lady had asked them if they would back her up if she called CPS on me. When it was all said and done, 6 foot got a visit from CPS for making a false report.
However, that didn’t help Josiah’s situation any. By that time he was too scared to even go outside. We had gone from few rages per week, rages several times per day. Not only were the rages more frequent, they became more violent. His target was not himself anymore. Whether it was toys, or teeth, his aim was for me. The night terrors returned as well. It was a hard time, but nothing compared to what was in store.
I figured out pretty quick, that he needed to be restrained somehow. I cannot put into words the amount of strength this kid had when he would rage. Out of trial and error, I found the best way to restrain him was to sit on the floor, put him between my legs, cross my legs over his, and hold his arms out away from his body. After a couple bloody noses from being head butted in the face, I kept a pillow nearby to place between his head and my face.
A neighbor in the complex, who was also a nurse at the local clinic approached me one day and said that she had talked to the doctor about Josiah. She asked me to bring him in to see the doctor.
This doctor prescribed Ritalin and Imipramine for Josiah.
I do not recall the dose of Ritalin given at that time, but I do know it
was liquid and he literally bounced off the walls on it. After three
days, I said forget it and went about life as best I could.
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During this time, dealing with the frustrations of being a single
parent along with Josiah’s weird behaviors, I let everything go.
If I spanked him, he hit me back, so I didn’t spank at all. Discipline
of any form was non existent in our home. Whatever made him happy
is what we did. I was just too wore out to realize that what I was
doing was giving him full control over me. I knew something was wrong
with him, but rather than take the time to sort out what was this “unknown
illness”, and what was just plain bad behavior, I let it all go.
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I had noticed that he started becoming fixated on order. His cereal had to be fixed a certain way, his “blankee” had to be just right, little things of that nature. I rearranged the living room one-day and his response was very violent. I changed it back and he was fine.
I soon realized that I had to get him back on track. So, I began enforcing discipline. I made him sit in time-out for bad behavior, though actually, I sat holding him in time-out until he understood how it was done. In some cases, I took favorites toys away. Honestly, that worked better than anything I’ve ever tried.
Then, on top of everything else, Josiah started complaining of stomachaches. He would run fever for a couple of days and be sick to his stomach, then he would be fine for a few days, then it would start all over again. The doctor I took him to could not find anything wrong with him and so referred him to a Gasterinologist (sp). Through tests we found that Josiah had Ebstein Bar Syndrom. Nothing to do but let it runs its course.
Day after day I did whatever it took to get through another day,
and night after night I was on my knees praying to God for healing for
Josiah, and someone to love for me.
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FOUR TO FIVE YEARS OLD
In April
of 1996, I found a job in the Classifieds Department of a nearby newspaper
office. That was our turning point. I walked in for the interview
and came face to face with my now second husband. For those of you
who do not believe in love at first sight, you should, because it happens.
I was honest with him from the beginning about Josiah.
I told him the problems he had and that we were working on finding out
what was wrong with him. He asked me to marry him anyway. We
moved in with Eddie a month later.
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Josiah had always had his own room, but would come in and get in my bed at night where he would sleep until morning. That was not bothersome to me as his mother, but when my relationship with Eddie grew, I no longer allowed Josiah to get in bed with me. Looking back, I clearly see that that change was too abrupt for him. We averaged two to three hours sleep per night and he began wetting the bed. PULL UPS helped with the wetting, but nothing I tried would keep him from waking up. Then, my mother made a suggestion that helped tremendously.
We put a cot in our bedroom and kept it made up for Josiah. We taught him to fall asleep in his room but told him should he wake up and need me, then he could come in and get in the cot. He could wake me up only if he was sick. It worked! Most mornings I would wake up to find the cot scooted over next to my side of the bed and my little angel sound asleep in that cot. That problem solved for a little while at least.
Then, the day care issues started popping up. We went through 4 day cares that year. Two of them just couldn’t handle him. I would get a call at work, and off I’d go leaving everything (including customers) to go and restrain and calm my child.
There was a supervision problem at the third day care. During a “potty break” another child decided to stick his finger in Josiah’s rear end. I didn’t know about it until we had gotten home that evening and a trip to the bathroom for a bowel movement produced blood. I asked Josiah if his bottom was hurting or anything thinking he may have a hemorrhoid or something. That’s when he told me about what happened. Shocked and dismayed, I called my mother and told her what he had just told me.
In this society of ours some things are just passed off and that is
exactly how this situation was handled with the local police department.
“We’ve determined that this was just a case of childhood curiosity,” the
detective said. I never took Josiah back to that daycare and
I ignored the bills that came from them. I took the stance that why
should I pay you for NOT supervising my child?
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Thankfully, the last daycare was where we gained strength. It is no coincidence that the daycare itself was part of a church. The pre-school teacher was a certified Kindergarten teacher who did not agree with public school practices, so she made her way instead in pre-K teaching.
This woman was great! She implemented a “happy face” chart for Josiah for his behavior and worked with him like no one had. She had noticed his problems with noises and the increased hyperactivity during weather changes. We had not yet found the right doctor for Josiah, so he was still “non medicated”. However, she and my mother helped us find help in the form of a newly opened clinic for ADHD children.
There, we met another astonishing woman. She was a counselor and the very first things she had us do was fill out the Attention Deficit Evaluation Scale for Home and School forms. ADHD became our focus.
From that point, we began our search and found a doctor who specialized
in ADHD and soon, Josiah was placed on Dexidrine .5mg 1/2 morning and noon.
He also gave us the idea of Melatonin at night to help with the sleep disturbance.
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Dexidrine opened up a whole new world for Josiah and for me. It was a relief, though short lived. He was so compliant and seemed so very happy. Then disaster struck.
I thought that I had been through the worst possible rage imagined, until one day while driving home from work, Josiah started screaming and hitting the window, kicking and trying to get out of the car. He yelled over and over “Stop the car!” Well given the traffic, I could not stop the car right then. I drove up the road a ways and pulled over at the first spot I could find, but that only made things worse.
He wanted to “go back” to that spot where he originally wanted me to pull over. Well, I couldn’t do that so I tried unsuccessfully to calm him. It was time for my own judgment, so I cautiously drove all the way home, all the while he was in the back seat carrying on. When we pulled into the drive, I went around to get him out of the car. I opened the door, and out he came, full of anger, frustration, and pure rage.
He ran right out in the middle of the road raging all the way. “I’m running away!” he yelled. I finally gave up trying to coax him out of the road verbally and instead went to the car, started it, and said, “Come on, let’s go back.” My husband came out and helped me get him into the car and strapped in. Down the road I drove until I came to a field. There, I stopped the car, got out and let him out. He immediately started to run again, but I caught him and held on to him so that he wouldn’t get run over. He turned pale in the face and immediately started gagging and yelling “I’m sick, I’m sick”. He bent over and tried to throw up. At this point he clung to me and started crying.
I helped him back into he car and drove back home. When we got there, he had to be carried into the house. He was sobbing by then saying over and over “I’m sorry”. He fell asleep shortly after we arrived and didn’t remember the incident when he awoke.
The one thing I noticed, as he was raging in the middle of the road was his face. That face haunts my dreams to this day. That face is the face I see when I know I’ve lost him to that uncontrollable rage. The blank expression, and dark voided eyes, the turmoil boiling just under the skin. It reminded me somewhat of a scared rabbit, running for his life from an unseen predator. I know in my mind that that is my child, but my heart breaks right into when his happy smile is replaced with such madness.
That was the first of many rages over the next few days.
After only a week on the Dexidrine, he was having a severe adverse reaction
to it. I called the prescribing doctor several times during those
few days and had my first ‘bad experience’ with a doctor. I felt
at that time like I was being “put off” if you will. The bedside
manner of this man really got to me. So, after he discontinued the
Dexidrine and prescribed Ritalin 5mg morning and noon, I went in search
of a new doctor.
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FIVE TO SIX YEARS OLD
The counselor at the ADHD clinic worked closely with a children’s hospital 60 miles from where we lived. She talked with the Nurse Coordinator of the Specialty Care Unit, who later became not only my friend, by a fellow advocate for Josiah. She set up an appointment for Josiah to be seen. This was our chance at a new beginning.
That first experience at the Specialty Care Unit was an eye opener for me. We sat in the waiting room with 15 or so other parent’s of children just like mine. I thought to myself, "Wow, I’m not alone after all!”
The day was filled with tests, Speech and language, Developmental, Coordination, and an Otiological examination. We found out that Josiah had a mild conductive loss in both ears. We were also set up for an EEG at a later date to rule out seizures.
The EEG was normal. No seizures were indicated. However, the child neurologist on the team of doctors at the Specialty Care Center gave us some insight as to what was wrong with Josiah. He told us that Josiah had ADHD +. He explained that given Josiah’s history with rage attacks and hyperactivity, he felt it would be best to increase the Ritalin to 5mg four times per day, but if the late afternoon dose affected his sleeping, to drop that dose.
We continued on this course for months. We had Josiah’s hearing tested twice after the initial testing. He suffered some hearing loss in both ears and the indication of another set of tubes was clear.
At that time, we were still in need of a local Pediatrician for ailments other that ADHD, so my search continued. That is when I decided to track down every medical record there was concerning Josiah, and what a headache that experience was. If there were only one single piece of advice I can give to a parent, it would be start your own medical charts for your child. Get copies of every medical record as soon as it is typed. Tell the doctor that you keep records of everything. Don’t let one piece of medical documentation get past you. It’s very hard to backtrack to obtain everything.
We found a medical doctor with whom we felt comfortable as she
also treated ADHD. We talked at length with her about the importance
of working as a team not only with the counselor and us but also with the
Team at the Specialty Care Unit. She was willing to heed those guidelines
and our relationship with her began.
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She treated Josiah’s ear infections and kept up to speed on his otiological exams. She also made the suggestion and tried Josiah on Tegretol to help curve some of the “come down” he experienced with the Ritalin.
I don’t have an answer as to why we saw no ill effects or progress
with the Tegretol. We tried it for several months to no avail.
Therefore, this doctor changed his Ritalin dose and schedule from 5mg t.i.d.
to 10mg morning and noon. This helped tremendously along with behavior
modification. A month or so later, we received a letter in the mail
from the doctor stating that she was leaving the clinic. Again, back
to square one.
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By this time Josiah was getting ready to start Kindergarten. I was very concerned about the bus ride due not only to his tendency to get car sick, but also because I was afraid he would have a rage on the bus. Because I worked and he went to daycare 15 miles from our home, I began working towards getting him placed in the school in the town where I worked so that I could drive him to school everyday. The school he was supposed to attend was 20 miles from our home in the opposite direction from the town I worked in.
I wrote a letter to the Superintendent of the school district in the county where we lived and explained my concerns. He was so very understanding and made the offer that if the Superintendent of the school district where I worked agreed to the special circumstance, then he would see to it that tuition was provided for the transfer.
The Superintendent of the school district where I worked did not
agree. In fact, he plainly stated that there was not room in his
school for a student like Josiah. So, shoulders straight, head held
high, I began my search for another job in the town where my son would
go to school. I found one.
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With the help of the Nurse Coordinator from the Children’s Hospital, I developed a plan. I made an appointment with the head of Special Education and discussed Josiah’s difficulties and the rages. She assured me that he would be in good hands and that they would see that he gets everything he needs. She set up his schedule so that when I dropped him off in the mornings before class started, and during naptime in his regular class, he was sent to Early Childhood Intervention. This was a blessing.
My next goal was to find another doctor. Instead of seeking help on my own, I wrote a letter to the local clinic asking for help. That help came in the form of a husband and wife team. They both were doctors and very knowledgeable in the area of ADHD.
Soon, it was determined that Josiah did indeed need another set
of tubes, so we set it up and had it done. The tubes helped a lot
with the behaviors, but were not a cure all. So, we talked to the
local “team” and we tried Ritalin SR 20mg in the morning. It only
took a couple of weeks to figure out that Josiah didn’t respond well to
that medication. Therefore, we switched back to regular Ritalin,
but increased the dose to 15mg, one 5mg tab in the morning, and two 5mg.
Tabs at noon. We still had the issue of the “come down” in the evenings
though that would often result in rages. Also, his sleeping, though
better, was still not up to par. Falling asleep was not the problem,
staying asleep was.
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SIX TO SEVEN YEARS OLD
In
my experiences in life in general, I have learned to tolerate people.
However, nothing prepared me for the overall feeling of respect and hand
held guidance I received by the husband and wife team working with Josiah.
It became evident that Josiah needed more. More what though? The “wife” half of the “team” sat down with me during one of our appointments and said, “I don’t feel comfortable with increasing the Ritalin anymore. I want to refer you to a child psychologist.” Those words meant the world to me. Those words said to me “I want what’s best for your child and I’m not afraid to tell you we need another team player.” I found in those moments a new respect for this woman.
We were set up with the child psychologist and the appointments began. After one appointment, she had “wife” prescribe Imipramine for Josiah. We stared out with 125mg, 25mg every morning, and 100mg at bedtime. The Imipramine helped tremendously with Josiah’s sleeping and with the bed-wetting. We then began regular EKG’s to monitor his heart while on the Imipramine.
As summertime approached, we began weaning off of the Ritalin. We kept some handy for “special occasions”, but for the most part, he was Ritalin free all summer long. This was not an easy task and he was kicked out of one daycare and started in another where he did great. (I decided to start the new school year off without any Ritalin to see if he could function without it. That lasted about two weeks).
In June that year, Josiah visited with my mother for a weekend and they had a trip to the movies planned. About a ¼ mile from my mother’s home they had an accident. Her vehicle’s brakes locked up and they flipped three times. Josiah suffered a scratch on his arm and leg, but my mother was injured. They were both transported to the nearby hospital and were released after being checked thoroughly.
When we arrived at my mother’s home that afternoon, she spoke of how brave Josiah was and how he found the way out of the vehicle through the back window. Although she had a broken rib and severely bruised thigh, she really played it up about how he saved her life. I knew what she was doing, and I’m thankful she did, because it helped quell the traumatic feelings he was beginning to show. It wasn’t until I arrived that he broke down (as we all do with our mothers after a crisis).
I stayed at home with him the next day, which was Monday. On Tuesday, I went in to work only to find a memo from my boss about how much work I had been missing. This hit me the wrong way big time, so I wrote him a memo back that basically said, “take this job and shove it!”
We met with psychologist several times but made no progress. Because
of insurance problems and Josiah’s reluctance to talk to her, I decided
that although we did need a psychologist, this one wasn’t working.
With the new school year fast approaching, I set everything else aside
and focused on finding more help, so, I called the local MHMR clinic.
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Making that call was the first step in the right direction for Josiah. Through MHMR, we were set up not only with a psychiatrist, but also with a counselor. The initial exam by the psychiatrist was informative, and the possibility of Bi-Polar Disorder, Intermittent Explosive Disorder, Impulse Control Disorder, Oppositional Defiance Disorder, and Obsessive Compulsive Disorder were introduced. No changes were made to medication at that time.
We continued on this track until the second week of school when
school officials called and said that they felt he did indeed need Ritalin.
So, we set up another psych appointment and went back on the Ritalin 15mg,
5mg morning, 10mg noon. However, the psychiatrist we saw the first
time had moved on, so we were introduced to a new one who prescribed Depakote
(unsure of the dosage) to go with the Ritalin.
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It only took about two months to see the adverse changes in Josiah’s behavior. The aggression increased, and he began hearing voices. At first I thought that it was just his way of expressing his confusion over the quarrels my husband and I had begun having due to stress of my not working and bringing in that much needed income. But then the rages intensified, and I knew something wasn’t right.
His schoolwork was being affected as well. He was taken to Behavior Modification every day and spent a lot of time in the moon room to help calm him down. I thank the head of Special Education to this day for implementing that procedure in his IEP as that was the only sure way to keep him and the other children safe.
From the very beginning my mother fought me tooth and nail over giving Josiah medication for his behavior. “He acts just like you did at that age,” and “Well he doesn’t do that when he’s at MY house,” she would say. She never called me a liar, but she didn’t believe me either. Then she saw it first hand.
In the latter part of September or early October, Josiah and I went for a visit with my mother. We played most of the morning and rode four wheelers and did all that outside stuff little boys like to do. It was around 3pm that afternoon that the first signs of an oncoming rage showed.
She had asked him to do something and he made some off the wall comment to her, I don’t remember the exact words. So, she picked a switch off the tree and told him he was getting a whipping for what he said. I started to intercede because I knew what was going to happen, but she stopped me saying she would handle it. So, I sat down and let her do just that. I thought to myself, “Here’s her chance to see first hand what I’ve been telling her all along.”
Sure enough, she pushed him over the edge. She never did spank him. He argued with her, cursed at her, and then finally I stepped in and took him in the house. She walked in as I was trying to get his teeth out of the flesh of my calf. She was horrified. However, she though quickly. She ran in her room and got her video camera. By the time she got it going, I had gotten free of those teeth and was trying to calm him down.
She asked many questions on the verge of hysteria herself. I forced myself to stay calm and deal with the situation. I didn’t want to scare her anymore than she already was. I sat down with Josiah between my legs and began restraining him. This broke my mother’s heart. She begged me to let her hold him. Out of sheer exhaustion on my part, I let her. She tried different things, like joking with him and it helped somewhat, but then he swung from rage to laughing in the same breath.
The nurse coordinator had shown me how to wrap him in a sheet to prevent harm to him or me, so I got a blanket and mother and I wrapped him up until the storm passed. About every 10 minutes or so he would start up again and by that evening, we had wrapped him several times. Mother and I both were bleeding from bite marks, and once we managed to get him into a cold shower, he began to calm. We went home the next morning.
That night, Mother called and told Eddie to have me bring Josiah to her. Eddie refused to wake me after the exhausting weekend, and instead told her I would be there the next morning. I called my mother the next morning and learned that she had been on the phone calling every treatment facility within a 200-mile radius. We needed to take Josiah to one of these facilities for help. So we loaded up and went.
I don’t think I’ve ever been so mad in my entire life. “Im sorry, your insurance doesn’t cover mental health, so we can’t take him,” the lady said. Now I understood what she was saying, but at that very moment she said it, Josiah had his menacing teeth locked in my leg again, so out of pure frustration I yelled at the woman “Don’t you people think about anything other than money?”
Dislodging myself from Josiah’s teeth, I picked him up and out the door we went. Mother tried talking to the woman more, but it was evident, unless we had $1,500 per week up front, they wouldn’t take him. So home we went, nothing solved.
I called the MHMR clinic and began weaning Josiah off of the Depakote. At the next scheduled appointment, the doctor wanted to give Tegretol another try. So we did, only this time, the result was much the same as we got with the Depakote.
By February, my marriage was in shambles. The stress of the situation as a whole was too much and on February 21, Josiah and I moved out.
We had already stopped the Tegretol and increased the Ritalin to 20mg twice a day, but given the other stress’s he was headed downhill and fast. The separation only increased his inability to control himself. Foolishly, I took it upon myself to wean him off of all medication, as I knew something was going on and I needed to find it fast. Then he hit rock bottom.
He started getting sick to his stomach. Then he would shake.
Then, the most odd was he would just sit and stare at me. It was
almost as if he was calculating his next strike. I was scared to
death so I called the MHMR clinic and told them what was going on.
They had another new psychiatrist and once she had all of the information,
she felt he needed in patient care.
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The hardest thing I believe I have ever done was leaving him there at that mental hospital. He cried and begged me not to go. When the psychiatrist made the initial evaluation, and asked Josiah why he was here, Josiah’s answer was “because my mother is afraid I’ll hurt her again.” As I walked out of those doors, I felt as though he’d died and I was alone. My mind was filled with all of the “what ifs”. My chest was hurting and it was hard to breathe. My heart was breaking. That was on Friday.
I didn’t go back until Sunday. I was shocked when I went
in the ward because there were so many children there. The first
word that came to my mind was orphanage. My mother and stepfather
were there and we all visited with Josiah for a little while. He
was very angry with me. He became very violent towards me.
He wanted to go home.
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Josiah was given Ritalin again and Paxil 20mg was introduced rather than re-starting Imipramine. He had a poor response to the Ritalin this time, so he was switched To Adderall 5mg morning and noon. His response to Adderall was much the same as he had with Dexidrine.
He was given Serentil PRN for out of control behavior and was started on Lithium 150mg morning and night and Risperdal 1mg morning and night. However, after the first dose of Riperdal, he develped symptoms of EPS. Benadryl was given but required evaluation at the emergency room after fourth episode. EPS symptoms included stiff neck and protruding tongue and ataxic. All medications with the exception of Lithium were discontinued at that time.
By April 7th, Josiah’s was still hyperactive and he had trouble keeping his hands to himself. He still had the short attention span, was uncooperative, and unfriendly, irritable and judgment and insight were poor.
On April 8th a Lithium level was obtained and Lithium was increased to 150mg three times per day. Josiah was started on Tenex 0.5mg morning and night. After starting the Tenex, Josiah calmed considerably, and was much more cooperative and stated that his goal was to follow directions and control his anger. He was also started back on Paxil at a dose of 10mg per day.
Every time I visited with Josiah, he became very angry and violent towards me. I inquired about his progress and found that there was none. Therefore, instead of driving back and forth 100 miles one way each day, I took Josiah home.
The next few days were terrible. The rages took all of my strength. The medications they had given him didn’t do anything for him, so I weaned him off of the Lithium and Tenex, but kept him on the Paxil. We went back to the MHMR clinic and saw yet another psychiatrist. This time, we increased the Ritalin to 40mg – 20mg morning, 10mg 10am, 10mg 2pm. He also put Josiah back on the Imipramine 75mg all given at bedtime. We also stayed on with the Paxil as well.
Getting it All Back Together Again
Getting Josiah stable was priority one. Priority two was fixing my marriage.
The biggest problem we had was differences in the way we parent. Eddie already has two grown sons and they didn’t have anything like this going on. So basically, this was a whole new world for him too. Our BIGGEST MISTAKE was not working together. I did things my way, he did them his and Josiah got confused.
My husband and I talked at length about what we needed to change.
We agreed to work together instead of against each other and we reconciled.
Josiah and I moved back in May. In June, I found a job managing a
fishing lodge, so we moved there. Josiah was still having a hard
time, but it wasn’t as bad as it had been before.
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SEVEN YEARS OLD TO PRESENT
His last rage was July 4, 1999. The excitement over the festivities
and not getting enough sleep, drove him over the edge. I don’t recall
what started that one, but I know what stopped it. While I was restraining
him, he got one of his hands loose and grabbed a toy and hit me in the
face with it. I let him go immediately and held my eye where he hit
me. I was shocked when I felt the blood. My husband had been
outside the door ready to help me should I need it so when he heard my
gasp he came in. As I turned to face him, Josiah turned to face me.
When he saw what he had done, it was like somebody snapped their fingers
and he came out of the rage. I got cleaned up and went in and held
him as he sobbed. “I’m sorry was all he could say.” I held
him that day for hours, just the two of us. I talked with him about
how I felt when he hurt me and I told him it’s ok to be mad, but it’s not
ok to hurt others. He hasn’t hit me since.
By August we needed to change again. The psychiatrist discontinued the Paxil and increased the Ritalin to 50mg daily (10am dose from 10mg to 20mg). He also prescribed Clonidine .1mg after school.
In September he increased the Clonidine to .1mg in the morning, and one afterschool. Our goal was to decrease the Ritalin “come down” in the evenings.
In October we increased the Clonidine again to .3mg total, adding a dose at bedtime. We also changed the Ritalin schedule as well. Rather than give 2 10mg tabs at 6am, we changed it to one and added an 8am dose of 10mg. We moved the 10am dose of 20mg to noon, and the 2pm of dose 10mg to 3pm. This helped him stay more even throughout the morning hours.
This medicine regimen worked well. Josiah still got angry, but was able to think before acting. However, the weight gain was beginning to be a really big issue. He started waking up during the night hungry and was not able to go back to sleep. The Imipramine worked very well at putting him to sleep, but now it was also causing him to wake up hungry. Next change: decrease the Imipramine. By February 25th, he was off the Imipramine and still not sleeping well.
The psychiatrist then prescribed Seroquel. I had a problem with this medication, as I was so scared he would have an EPS reaction to it. So, I never gave it to him.
We saw the doctor last week and I told him my concerns, so we opted for Klonipin 5mg ¼ to ½ tab in the evenings. Other than last night and Saturday night, he’s slept through the night on the Klonipin.
Again, I must state, that yes, Josiah still gets angry, but he’s able to think before he acts. That alone is one goal met. We’ve learned to deal with the evening “come downs” and we love those days when there is no “come down”.
I know that this road is a long one and there are issues not even thought about yet that we may come across. But I’m not going to let anything get in the way of his success because I know in my heart that he will succeed. We will find that “just right” combination of drugs that will help him be the best person he can be.
I believe that when the right medication is prescribed and parents and
doctors, teachers, and anyone else involved all work together, these kids
don’t have any other option but to overcome their weaknesses and achieve
their highest goal.
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Biographies |
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Metro Atlanta Parents Group |
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Contact information:
Julie Ward
150 North Ave. #1
Jonesboro, GA 30236
Day phone: 770-603-2648
Fax: 208-361-4653
Email: georgiabpmom@aol.com