Living in Chaos: Survival

Introduction (very long)

Hello,

My name is BettyJo. My husband and I have been married for 19 years in May this year. We have two sons. David is 17, next month, and has been confirmed with a schizophrenia diagnosis within the past month. Dalton, 10, wasadopted. He came to us from thr fostercare system at age 3 yrs 10 mos, and has been with us since.

I remember a normal life. We used to have a very fixed and narrow view of children, acceptable behavior, and a strong belief that parents who medicate their children are lazy, inecceftive, undisciplined, and seeking the easy way out, instead of parenting well. I am the first to admit that we were wrong.

I believe there is purpose for everything in life. All situations can be used for good, and many life lessons can and are learned from every trial and painful circumstance. God has a reason for allowing troubles and pain to happen in our lives, and the skills we learn by dealing with these trials can be used to help others.

When we decided to adopt, we knew that we would likely be adopting a child with special needs. Little did we know, that we would adopt a child with EVERYTHING we said we could handle, all in one package. Dalton had been diagnosed with RAD (reactive attachment disorder), probable ADHD, PTSD, and ODD. Unfortunately, with the mental health system being what it is, and the ease and comfort diagnosing ADHD and Depression in children, the most common treatments are stimulant and antidepressant (SSRI) medications.

Dalton came to us on Imiprimine and Clonidine. We had previously had no experience with therapists, psychiatrists, or psychotorpic medication. The psychiatrist (PDOC) he had at the time he was placed, kept upping his clonidine dose until he was taking 5mg/day! Within 3 mos, he was toxic. he was not sleeping at night, he was leaving the house in the night, walking the neighborhood streets, and entering neighbor's homes! He had just turned 4.

He ended up in a psychiatric unit for two weeks. this was his second psychiatric admit, he had been in the hospital once before, at age 3. They discharged him on Prozac and Tenex. Afther his discharge, he spent the next 14 mos in a day treatment center for ED/BD/DD preschoolers. During the next year, the school pdoc prescribed stimulants for his supposed ADHD. his symptoms got worse. For the first year plus, Dalton raged, violently every day for 4-6 hours. We did holding therapy for attachment. We often had to restrain him by rolling him in a blanket and holding him, or lay beside him holding on, just to keep him safe from hurting himself or others. He was essentially a feral child.

Finally, in april 98, I founda different pdoc. I had read articles, books, anything I could get my hands on. Dalton was a Jeckell and Hyde personality. He could swing back and forth for no apparent reason from minute to minute. I knew what Bipolar illness was, but was ooking at my child thinking, "But, he's only four!"

The new doctor was wonderful. He did diagnose Bipolar I illness (Ultra-rapid cycling). With multiple medication trials and errors, we discovered that the stimulant medications were making him rage psychotically in an adverse reaction. SSRI medications made him extremely disinhibited and manic. He had no fear, he would cut his hands and come to proudly show off "Look, mom,. See what I did?" With a wide grin!

In Dec 98, we finally found the last piece to the medication combination that has kept him relatively stable since that time. We have to make adjustments for Spring and Fall, as well as times of stress, but he is doing well. Dalton's diagnosis has been correctly discovered to be Fetal alcohol syndrome, Bipolar I, Organic Brain Syndrome, Language disorder (mixed), mild retardation (IQ=65), PDD(NOS), and Dyslexia. He is encopretic, and has never been fully BM trained. He has always had an IEP and attended a theraputic, alternative school setting for ED/BD kids. He is in 4th grade, and performing academically, about 2nd grade.

Dalton's medication combination is: Lithium XR, Topamax, Zyprexa, Seroquel, Propranolol, Synthroid, and Miralax. We recently added Ability, as we hope to remove the Zyprexa due to weight gain. We also deal with major toiletting issues, and he has to wear Depends, due to the encopresis.

My mother told me a few years ago, that God gave me Dalton to get ready for David, our oldest.

About two years after Dalton had come to our family, David, our birth-son) began having serious anxiety issues. He began having serious, temper fits which accelerated into hyperventillating, panic-like, attacks. these often ended in laying on the floor, hitting the floor with his fists and kikging. Screaming at the top of his lungs that he was going to die, we hated him, we never loved, him, we were against him, we wished he was never born. These would last for 20-45 min or more. We took David to see our pdoc.

At the time, we assumed that this was a situational reaction to Dalton's adoption. David began falling apart about the time, Dalton was finally stabilizing. We concluded that David was depressed, or maybe PTSD. We tried AD meds, with minimal results. As time passed, the only improvement we would see with medication was a reduction in the length and intensity of his outbursts and panic. His utterances became, more and more, paranoid. We were terrorizing him, harrassing him, hated him, were out to get him, blamed him for everything. David never took responsibility for anything, he was the quintessential victim. This began at age 12-13.

In the Fall 2001, David's issues had progressed. By this time, we had tried mood stabilizing medications, thinking, MAYBE we were dealing with a mood disorder???? However, no better reactions to these meds than the AD meds.

David had withdrawn from any and all friends. Basically, he had none. he went to school, and to church and Scounts, but only if we insisted he go and took him to the latter. He initiated no social contact with anyone. He was extremely rigid in his thinking. I often call it the "Takling to a Brick" syndrome. He could not be convinced of anything which was different from his assumed context of the world. He had almost no affect at all. He would stare at nothing, respond in monsyllable, and was almost robotic in his communication. He wanted to be left alone to play computer, nothing else. Big time fantasy games. David is extremely intolerant of Dalton, who is impulsive and invasive, with little respect of boundaries. We could set David off simply by asking him to take out trash.

Fall 2001, is the first time the SZ word surfaced. David had his first psychotic break. His temper and anxiety outbursts had escalated to the point that he honestly believed his father was going to kill him. he was carrying pocket knives to protect himself. His outbursts got to the point that he was screaming in the front yard at us. At one point, he ran to the neighbor's house to use their phone to "Escape" from us. He referred to his father as "That Man". and refused to come back in the house as long as "That Man" was there.

Since this period we have tried Seroquel, Abilify, Geodon (still on), and Risperdal (new for him). Again the Seroquel and Abilify helped, but did not dover his paranoia and explosiveness. Fall 2001 was the first time he ever used a curse woed to us, now we hear at least a dozen every night at the top of his lungs. The Geodon has done wonders for David's affect. We moved a year ago, and he has more friends now that he has ever had in his life! :0) When he is not blowing up, he is pleasant, comical, cheerful, smiles, laughs, and even is able to do some chores without much difficulty. However, he still gets very abusive verbally, aggressive, grabbing and hitting me and his brother. So far, he has not hurt anyone.

The police informed me, they could not help take him anywhere unless he actually hurt someone! In the past month, as he excalated again, we changed pdoc to one here with the local community mental health system. They actually diagnosed the schizophrenia, paranoid type. He is in therapy weekly and we have tried Zyprexa, quit after a week due to bad SE's. Started Risperdal 4 days ago.

David is dealing with major cognitive issues as a result of this illness. His grades have plummetted from 3.495 first sem freshman year, to 1.446 first sem junior year. he has lost large amounts of executive functioning. He has great difficulty thinking abstractly, problem solving, planning, and organizing. We just did a 504 plan at his school this week. Up to now he has had no need of assistance, but he is fighting for his life to pass with c's and d's, and this is with mom doing a large chunk of his research, planning, and organization!

At his point, he is blowing up every night at home. Homework is the trigger. He does not lose it anywhere except with me or his father. Behavior is not an issue at school, except rarely, but we are to the point of having his quit school and do the GED. he is intelligent. he has passed the GQE and got a 20 on the ACT. This is not the plan we ever thought life would take, but peace is worth more than a diploma.

We have had to come to terms with a loss of dreams and expectations. David will not go to a 4 year university. He will attend community college, and live at home. He is talking about a 2 year degree or trade school. This, from 2 years ago, planning to go to college, become and accountant or engineer, adn working on honors diploma!

This illness is traumatic and devastating to his life and ours. His father and I have both begun AD treatment in the past year, due to stress. I live on the computer for support.

We have learned much patience, adn how to value little things, that in the past we did not even see. I have come to know, that in order to truly love and understand a child, you have to live their pain and help them through it. I'll never know for certain, why god saw fit to bless our family with these problems, but I pray and hope that I can help others who are living the same nightmare we have done and are doing.

Life is good. There is good in all things, even pain. I hope this BLOG will be an avenue to share, vent, destress, educate, and grow.

Thank you for reading this far, if you made it. I'' add more another time.

God Bless and keep you all.

"There is always a light, no matter how dim, if only you seek it.
You are not alone."

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