March 31, 2004

Naptime & Haven

Naptime
The whirling wind has blown away
his agitated wonder
Activity, at present stayed
the silence he will ponder

A thoughtful meditation rose
and grew within his reference
Illumination, in repose
a moment of complacence

Unnecessary halted breath
soft exhalation heartfelt
Was unaware of others' rest
as weary bones were not felt

As windows to his soul waylaid
curtains drawn to privacy
His muscles strain no more to play
mama's boy drifts out to sea

Betty Jo Hilger

Copyright �2004 Betty Jo Hilger

After every manic period of excitement, Dalton always pays with sleep. Healing for him and us. :0)

Haven
Resting at the farthest reach, of the stand
of trees he waits, calling out to all with
hurting hearts. Sending out a lonely plea,
for another soul to share, in the solitary
beauty of his paradise. Holy creatures
watch and guard, against approaching violent
thoughts, protecting sanctuary from society.
Cathedral of his loving kind, would seek to
teach us how to live, in harmony, with our
Father's majesty. Reflection of a Mother's
soul, invisible to naked eyes, those who
search must find another avenue. Deep within
your heart and mind, reach with your spirit's
gentle touch, in search of the place where
you exist alone. Delve beyond and you will
find, the source of universal peace, where
all lives are equal, and unheaval is unknown.

Betty Jo Hilger

Copyright �2004 Betty Jo Hilger

There is always Peace and Grace available, if we look to God.

Posted by TwoSons 10:47 PM | Comments (0) | TrackBack

It was heaven!

For those ofyou who have read my entries, thank you!

I'm back! I arrived back from New Orleans last evening. Since my plane did not arrive until midnight, my hubby brought the boys and I met them at a motel room for the night. We made sure there was a pool, and we had a wonderful morning. This saved me having to drive two hours home last evening after the plane ride. :0)

My short vacation was wonderful. I met my sister-in-law there, and although we made a rule that we would not discuss diagnosis', children's symptoms, etc.... we did get some venting in as well. My brother's oldest is mentally handicaped and has difficulty as well. For Lori (Sis-in-law) having to deal with his ex is rough also. The ex is not diagnosed with anything, but should be. I would call it Borderline personality.

We were able to walk, talk, sight-see.... all teh while not having to worry about children! It is amazing that in extremely noisy situations, it can be so peaceful, and seem quiet. We were up early every day, and down late each night, often talking until after midnight.

We walked through the French Quarter and the Riverwalk, took a riverboat ride and a swamp tour. It was wonderful to enjoy nature and not have to worry about poopy pants, temper fits, sibling fights, or anxiety and stimulation levels. However, I am very glad to be back.

My Dalton was very manic and overly excited to see me. he was bouncing the walls at 2am! He has been very clingy and touchy feely all day, but not innappropriately. Even David was hugging me!

While I was gone, there was one big incident. Gene had left the boys in the car to run back into a store for a couple minutes. When he got back, they both had bloody noses. :0( However, for the most part they did very well. Dalton has even been pooping in the toilet for a week! Swimming is the motivation this time. I pray it lasts. :0) Daddy bought new underwear to celebrate!

I feel better, the time away was a relief, aaaaaaaaaaaannnnnnnnnnnndddd now, back to reality. LOL

Rule two of parenting kids like ours: Love them always, and take great enjoyment in all they do and are.
Rule three: Take care of yourself.

God Bless.

Posted by TwoSons 10:33 PM | Comments (0) | TrackBack

March 27, 2004

Escape!

Good morning! it is the first day of my boys spring break. Gene and I managed to leave this am while they were still sleeping. We bought a new grill, got an oil change, and ran errands, the boys did well with waking and getting along. They usually do better in the mornings when they're not tired and overwhelmed yet. :0)

I put together the weekly medications for both kids. I feel like a pharmacist. Dalton is on 8 medications plus vitamins, omeg-3 and fiber, David is on 6 medications plus vitamins and omeg-3. Daddy does not do this. So I made sure they are ready for the week.

Gene is a wonderful hubby, he took the first 1/2 of spring break off with the boys, and I am flying to New Orleans with my sis-in-law, for a short vacation. I leave this afternoon. when I get back, Gene will go back to work and I get the second half of the boys break with them.

Rule one to marriage surviving parenting kids like ours : Flexibility and Teamwork!

Iwill be thinking of all parents who need a break, I hope you are taking care of yourselves. God bless.

"There is always a light, no matter how dim, if only you seek it."

Posted by TwoSons 03:32 PM | Comments (2) | TrackBack

About the last poem

Sorry that was so depressing. David had I had a VERY rough evening Wednesday. I was outside the house, in tears, anything to not blow at him.
This illness is not his fault. Often I find putting it in words helps as much or more than anything to let it go.

The other poem, Child of Chaos was written about Dalton last year in a manic period.

Posted by TwoSons 04:17 AM | Comments (2) | TrackBack

Demons In His Head

Afraid to death, of me, but why?
Tortured by fire, Twisted with hate.
Buried in pain, from wrath, not mine.
Leaving me here, crying alone.
Yesterday's love, a sad memory.
Poignant, misplaced, where has he gone?
Rescue not coming, solace not found.
Icicles burning, frigid desire.
Unknown, demented, hurting his own.
Hanging by thread, climbing a grave.
Hopeless tormentor, inside his head.
Starting to wonder, where will it end?

Betty Jo Hilger
Copyright �2004

Posted by TwoSons 03:49 AM | Comments (1) | TrackBack

Child of Chaos

Eyes flash at unseen slight
Fists clench in preparation
Thoughts cease, emotion overwhelms
Time slows
and stops.

Frozen rage, the match strikes to flame
Hesitates a solitary moment
Unless deflected flame will burst to fire
Explosion, his sole desire;
He burns.

Soft words, his only hope
Peace offered in the face of pain
Calm waters in the midst of storms
Outstretched hands unarmed, loving,
Warm.

Breathe life back into halted clocks
Whisper hope into desolation
Fold him into arms of full compassion.
Pray.

Absorb his pain, replace with calm.
Extinguish rage, deliver love.
Take his chaos as my own.
He cries.

Betty Jo Hilger
Copyright �2004 Betty Jo Hilger

Posted by TwoSons 03:47 AM | Comments (0) | TrackBack

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."

Posted by TwoSons 03:37 AM | Comments (0) | TrackBack