October 13, 2004
The Ongoing Saga... and the effects of trauma on mood...
Purposed and at Peace�
I�ve found the answer!
Parenting is like the weather,
beautiful and soft, peaceful and calm,
apparently a haven and a joy,a blessing and a smile,
when the sun is shining and soft breezes are blowing
and you can hear the sweet, sweet sound of birds and children
in the air...
Like a canoe upon a river still as glass
Reflecting scenes of heaven overhead,
and pictures of the shore smile back at us
Glimmering and glistening, as leaning over the side of our boat
we draw fingers through the surface of the water creating ripples
Like a trek through the countryside,
viewing the forest in the fall
A myriad of color like a symphony,
emblazoning wonder upon our souls awestruck and amazed
at the glory created by a palette of rainbows
which came from simple hues blended into an astonishing array
Like a swelling song of heavenly delight
which fills my heart with silence, serenity, and harmony,
landing softly upon my shoulders and into my soul, gently
as I coast along the star-struck waves of synergy within utopian walls
Like silken sunshine falling on a velvet smile
shining with an inner fire of hope
when illuminating the face of a slumbering spirit
and depicting the embodiment of our hopes and dreams
as we journey through the day...
These are our prayers�
These are our goals�
These are the mountaintops, for which we dream,
and these our rewards...
Parenting is a journey through life
and through storms to reach a destination
At times the weather is stormy, instead of peaceful,
and our path obscured by raging winds full of destruction
where light is dimmed by darkened clouds
and waves are crashing over shores flooding our serenity
A struggle and a task to ascend the steep, stark cliffs of desolation
to deliver springs of hope to waterless lands and parched minds
reaching out an olive branch,
oblivious to the dangers of vulnerability,
our gazes set only upon our objective and the goal at hand,
Through crashing storms and capsized boats
Through sunken dreams and broken hopes
Parenting is the action, the verb, the destination,
the ambition, and the deliverance of peace.
It is the meaning of life, the purpose of love,
and the reason God
We hired an attorney last night. Gave him an inch of recs, he asked for more. I have about 3-4 inches more to give today. Weeded thorugh a bunch of material... he seems confident this will work out. However, he used to work in the prosecutor's office and says this prosecutor usually presses charges every time, and is not so sensitive to individual cases so we may end up going to court. He does seem very confident, with the background and information we have back to Dalton's early years, that they will not "Convict" him. We are trying to avoid probation even, just in case.
If he gets probation, there is a risk that, should something small at school occur of a disciplinary nature, they could send him to Muncie to a Juvie facility. This would destroy my child. These facilities are not meant to deal with children who are developmentally handicapped, or suffer from a mental illness. They do not know or care to meet the child at their level of functioning ability. They do not have the training to deal with the medication treatments or have the knowledge to recognize symptoms vs. intentionality. They would not know when to look for medical assistance for these issues, vs. behavioral intervention. These facilities are intended for young people who intentionally and knowingly commit dangerous or criminal acts. Dalton would not underrstand.
I spoke witht he school system yesterday and today picked up a draft copy of the recent three year re-evaluation testing done last month for his IEP. The recent IQ test shows a overal IQ resultof 53, vs. the previous result three years ago of 65. I questioned the lower result. However, I remember being told that when he had the last set of testing done, three years ago, they had thrown out a large number of the time constraints on the test. This time the tester did not do this. This test was administered as it was designed, including the time contraits which measure the child's ability to measure information processing speed. Upon reading the result and understanding hte testing instrument, I believe the administer did a good job and this is a valid result.
Results of the vineland Adaptive Behavior Sacles: Interview Edition place Dalton's functional age at:
**4 years 2 months, Social Domain...
**5 years O months, Communication Domain...
**4 years 9 months, Daily Living Skills Domain...
Adaptive Behavior Composite Score: 4 years 8 month
Results of the Developmental test of visual motor integration places Dalton's functional age at:
**5 years 10 months
Dalton is doing ok. The emotional impact hit last night. he had fallen asleep in the family room and we woke him to go upstairs to bed. He was awake, but ODD, anxious, sad, acting avoidant and angry, refusing to go to bed, refusing to leave a light on if I turned it on, and wouldn't leave it off if I turned it off. Threw his night light, and he moved his lanp into the spare bedroom as he threatened to break it if I had it on... I know this mood, it has been a WHILE since we've seen it. He was keeping on with the mouth, pushing away, verbally ODD and threatening, and finally he tried to throw a couple half-hearted swings at mefinally, more token than intent. I grabbed him in a hug, took his feet from under him and laid him on the floor w/ me beside him... for a 20 min scream/cry. Very sad upset, worried about the dog, and just anxious. He ended up sleeping on a pallet on our bedroom floor. He could not, would not, sleep in his room.
This is like the stuff he used to do a few years ago. He "Gets" it sometimes and not others. He has a therapist visit scheduled on the 26th, I wish they had had something sooner. We used to have 1-2 hours of the don't touch me, don't leave me scenario years ago. His meds control the worst of this, but trauma and seasonal mood swings can bring it out again. He had a ODD temper show this afternoon in front of the house where he threw a couple half hearted swings at me again. This was in front of the neighbor who had told me it was still ok to let him play there without me...
I knew this was likely and had spoke with them last Sat re: what had happened, and my plan to accompany him when he plays in the neighborhood for a while. anyway, Tony witnessed this today and came over to tell me he thought it would be best if Dalton not play there untill thigs settle out. I told him it was not a problem. I also told him that I would go ahead and accompany him for a while.
This is a combination of the FAS/Bipolar/PDD and then the trauma... it cycles. This will even out, but it will be a rocky road occasionally. In all reality this is a minor situation in retrospect, we do this every once in a while... The accident with the dog triggered him. So far he is still doing great at school. Just made Gold level on behavior!
October 10, 2004
Recent thoughts in poetry...
When will it end?
Will it ever?
Why does this happen?
Where will we go?
When the darkness seems to overwhelm my soul with grief
And heavy tears are choking every breath
When I see an action taken which isn�t understood
And wonder why I didn�t follow him when I could
When I know there was no reason to look for such an act
And had no ideation to prepare for its prevention
When this is the first time anything like this was done
And yet the consequence is irreversible
All I can seem to do is cry
I cry for them
I cry for him
I cry for me
I cry for us
And my heart breaks
I lift my eyes to heaven, questioning:
Where is the lesson here we need to learn?
Lord please be with me in my struggle to defend,
in my effort to empathize, in hoping to prevent
anything like this from happening again.
Lord please help my faith to remain strong.
Teach me how to teach him what is wrong.
Please lend a healing hand to help me understand,
And stop this insanity, in him.
Impulse without brakes is a danger.
Reaction without thought is more the same.
Yet in his broken brain, he can�t seem to abstain
from acting before reason takes command.
Please help us.
This was my prayer the night Dalton had his incident with the neighbor's dog. All I can do is lift my cares to heave and give them to God for resolution. Faith is my rock.
It bubbles to the surface of my heart, and mind, and soul
With rising temperatures creating surging flames
And covers all my thoughts with darkened clouded fog
Miring me behind a wall of agony and grief
I struggle to lift up my head and voice my answer, coolly
Yet cannot seem to find my will to breathe and do the task
So drowning in the quagmire of my self induced disturbance
Buried, I am chained within a cage of disbelief
A captured spirit caught within an anguished suffered blaze
My eyes are blinded by the pain of unrequited hope
Broken, shattered on the ground and trampled underfoot
Despairing and defenseless I cannot seem to think
Frantic with anxiety, my fretful soul collapses
In puddles of gelatinous and viscid creeping pain
Until my gaze is drawn at last to sheltered sanctuary
Within the safety of his arms a refuge, where I sink
Resting in the dappled shade, beneath the willow tree
Where diamonds on the water kiss the wind
And whispering trees are singing tunes, of peaceful reverie
When laughter of small children lingers soft, therein
My eyes can barely see the joy that passes through my view
Where giant fingers reach to heaven, breaking up the blue
And harps of green are murmuring their secrets to the sky
In languages of loving care, where we forgot to cry
I hear a weathered whistle warble softly past my ear
Communicating messages of safety from my fear
And as I rest my weary soul to let my thoughts drift dreaming
My heart of hearts has raised a prayer of gratitude, for meaning�
I worte this poem while resting, allowing Dalton to roam the shore of a beautiful river. We had taken the boys to a oldtime festival and he had been a bit wired, tired, and frazzled. David wandered the festival some more. Gene took a rest, Dalton played, and I wrote...
His soul, a churning maelstrom of emotion
A swirling storm of hurricane strength winds
Thoughts existing, twisted, knotted cords of pain
He drowns in the beginning, at the end
Time is undefined, a tempest of his mind
Where memory has painted all he views
With swirling rainbow colors, bleeding life and love
Blurring bands of reason, multihued
Distorted and awry, he feels that he will die
If he cannot rise above the gale
Yet, crippled by his past, in fire his heart was cast
He cannot tell the difference should he win, or should he fail
Love and pain, all feel the same,
He cannot separate them in his mind
Shades of muddied color shining brightly in the night
He wonders how he ever will be able to define
Golden love from midnight hate
Crimson pain from pink delight
Chartreuse hope from blue despair
Violet joy from emerald care
Eddies spin out of control as he is sinking in the flow
Roiling mix, just seems to blend in painted lines which do not end
He struggles ever to the rim, a constant conflict just to swim
He cannot know his only hope is to surrender, just to float
For at the center of his storm, within the unseen eye
There is a treasure in his reach, hovering beneath his sight
A pristine bloom, a bud of peace, serenity far off, yet close
To find asylum from turmoil, he has to become vulnerable
For only then will he be near the blossom of affection
Where he can love, where he can breathe�
Accepting his reflection
And smell the rose
This is a descriptive picture of the chaos in our children's heads and hearts when they have a troubled past, combined with mental illness and developmental dealays and brian damage...
Now I lay me down to sleep�
In the still of the night I lay in silence
and marvel at the wonder of my world
in the softness of my bed, I rest my aching head
and can feel the stress of life just slip away
as I hear the soft night sounds echoing outside
my focus here can shift to things which do not make me cry
and I thank heaven for the miracle of respite
found beneath the edges of the sky
As each moment passes by the softness 'round me grows
clearer, and more heartfelt in my mind
I can feel the sounds of gentle wind come to carry me
upon their wings of soothing, whispered, breath
crickets cry for all my tears and bring my spirit peace
as hypnotizing melodies transport all worry spent
till consumed my weary soul can coast on waves to dream
of sweeter seconds safely berthed, intent�
Sails unfurl to capture hope reborn from slumber�s depths
rested and renewed, with energy to spare
and, as the morning enters view, I lift my lidded gaze
espying splendid loveliness as sunrise clears the air
serenity borne stillness, the light delivers me
to ramparts grown on feathered wings of light
and taking flight into the day, my soul takes time to kneel
in gratitude for grace reborn, by nightly crucible
I am like the dog that chases his tail,
neverstopping, completely focused,
intent upon his task, oblivious
I cannot stop to enjoy the view,
I must continue running,
constantly seeking the goal,
ever illusive, unattainable,
ever out of reach,
yet always in my view
I struggle endlessly
to reach the carrot hanging
just, one more inch, ahead of my fingertips
A puppet on a string of some unseen handler,
I dance to tunes which I don't even realize I hear
I hunger for normalcy,
yearning for the pulchritude of peace,
discontent and restless, I cannot seem to stop
Until a clanging bell resounds with painful sound,
capturing my attention for just one moment...
Then I realize that I have once more been tempted
into the dark abyss of self importance
and falling to my knees, I beg yet, one more time
for your forgiveness and forbearance,
for your mercy, for your peace,
to be content...
Thank you Lord for the challenges
which have been given me.
May I never be so selfish as to forget
the grace I have received.
My face was wet with tears,
which fallen from my soul
Had drifted, deeply from the place
my heart had hidden all my pain
My shattered mind, distressed,
seemed to have failed the test
Of placid peace and harmony
I had appointed my refrain
My hope, stretched delicate,
brittle, flimsy, frail,
Lay wrecked and ruined at my feet
where my composure failed
So broken and distraught,
I hung my head and cried
Lifting silent prayers: Dear Lord,
Please rescue me from where I lie.
My comfort knew no bounds,
for when his answer came
The velvet touch of peace
relieved my soul from every strain
His calming words brought joy,
which soothed my aching heart
His presence close beside my fear,
delivered me a pristine start
I knelt in gratitude,
for I could not repay
A single grain of what I owed
for giving me this brighter day
Instead his message came,
benevolently on the breeze
There is no cost or fee assessed,
just share my gift with all who need
We are what they see�
Our hands are painted brightly with our deeds
Our souls dyed with the pacts which we have made
Our hearts are tinted with the shelter of our dreams
We�ve dreamt of for ourselves and for our blood
Our touch leaves lines and traces of our hue
Behind when we have touched another soul
The color smoldering is bright with residue
Emotions often left out of control
Our spirit grows from our foundation�s vine
With vintages of passion flavored wine
Whose aftertaste depends upon the subtle brew
Of tenderness or anger borne anew
Our harvest is determined by our path
The journeyed trek of love or pain we choose
For choices which once made will make up who we are
Serenity or chaos, we�re imbued
Our fantasies and goals change over time
Once passing we cannot regain the frame
And if we are not careful to point our path toward home
We could find joy has flown from our refrain
Our lives are fragile, fleeting, delicate�
One misstep can lead us upon a trail
Whose passageways are fraught with enormous stumbling blocks
Leaving our intentions there to fail�
Each choice we choose will be action delivered
Each love we choose will be returned in kind
To treat each of our neighbors better than ourselves
Will bring unmeasured treasure
We are what our children see. We are what our neighbors see. We are what our actions show us to be...
I would never have thought this was what parenting would entail!
I would never have thought ... !
The officers just left the house. They are filing a police report and talking to the prosecutor tomorrow when they will give me a call...
Dalton has never hurt an animal before. He has not been aggressive with children in a long time. Evidently he was walking through the neighborhood, playing or looking for people to play with this afternoon. He had a wooden gun that Gene allowed him to get at a garage sale this past weekend. We have never allowed a gun before, and I did not want this one, but his Daddy thought he was ready, he has been behaving better with toys and has been borrowing neighbor kids guns to play with.
The neighbotrs have a little black dog, notmore than a furball. They chain it in the front lawn to do it's business. This dog is not friendly with children and barks a lot. Dalton has not approached this animal in well over a year to try to pet it. I have no clue what possessed him to approach the dog. Evidently he tried to pet the dog, the dog probably snapped at him and he reacted in fright. The wooden rifle was in his hand and he hit the dog once, it is dead.
He was poopy and had come inside. We were trying to get him cleaned up when the neighbor came over and told Gene Dalton had been seen hitting the dog with something "Plastic".
He did not tell anyone what he had done. he put the gun in our bush by the door. He often hides his toys there, his special toys... for safekeeping, and sometimes, he will put toys there if he has broken the rules... I know he knew he should not have hit the dog, but had done so in fear, and he hid the gun. However this is the same spot he has been putting it lately, so who knows...
Dalton shuts down verbally when upset, and was already upset over a bath, but he admitted to hitting the dog with "I didn't mean to" when we told him what the neighbor had said and asked him if he did. He has NEVER done anything like this, I had no idea to look for this behavior. Needless to say, I cannot let him roam or play unsupervised. We had been letting him play on his own.
We are likely going to have CPS here, and heaven knows. This is the first time anything ike this has happened. However, the office who came is the same one who had come out with my David when he was so unstable.
Dalton did have an incident with children down the street over a year ago. The group of children over there had been making fun of him, not talking to him very nice, calling him names and telling him to leave. I don't know what all happened exactly. The mother had come to my door because Dalton had pushed her youngest off his bike, and all the kids had followed her. they were standing in a row at the front of our yard on the sidewalk, and Dalton still upset and being confronted, ran toward them, and smacked each of them once before I could get to him. I was one step behind him. I had to grab and restrain him in front of this mother.
A time later the father came to my door fuming aggressive, explosive and threatening to have Dalton removed from my house if he ever toughed his daughter again. He was wearing a t-shirt with a sherrif star on it, and was very loudly insistant that he be allowed to talk to Dalton, He would not accept any explanation of Dalton's handicap, I explained that Dalton knew what he did was wrong but would be incapable of talking to him, especially with the threatening.
Dalton was hiding behind the door of the house while I was on the step.
Later I went to the man's house and spoke to him telling him I did not appreciate the aggressive threats in front of my children. That I understood the concern and would make sure he did not play there again and explained Dalton's issues. It has been over a year ago and Dalton does not go there anymore, there has not been another incident.
Evidently this guy listens to a scanner. As the police drove up to the house, this guy approched them with "Which one was it the big boy or the small one?" Then proceded to tell them that Dalton has "Pounded" his son!
I will handle whatever comes my way... BUt it seems like it never ends!
Needing comfort here.
Re: the laws, this is a misdemeanor charge. Cruelty to animals. Re: the dog being in front, I have no idea why they did not use the back yard, but as I said, everyone avoids the dog when in the front, I have no clue why Dalton thought to pet it, except, he is more impulsive than usual lately, which is why we added Zonegran two weeks ago...
I know they mean business here in IN. I think Dalton's situation is obviously different, but there was a 11 year old girl taken from her parents and arrested several months ago for swinging a kitten by a rope around its neck. She showed no remorse... Different situation, but scary.
The original officer was very compassionate. I have to hope that this will work out ok. The 2nd officer was more abrupt, saying he had to take the incident with the other parent as a pattern, and "He would have done the same thing". Re: the confrontation of this guy to us. Even though this was well over a year ago, and I explained that these kids in that are were taunting and picking on Dalton in the beginning... He did ask "What if it were a small child?" I have the same concerns, I understand the question... They are doing their job.
I just dont know.
For now, I will wait till tomorrow and depending on what they decide re: pressing charges, I will get hold of Nami for a attorney referral.
QUOTE from a friend:
The neighbor came over and told your husband about what happened - I do not understand why they felt they still needed to call the police. Did Gene offer them compensation for their pet? I mean, what else is one left to do once an animal has died? Other than be compensated for the loss?
After I finished Dalton's clean up, we all went over, he said he was sorry for killing the dog, then clung to me. I told Matt, the neighbor, that I knew there was nothing I could do to replace or make up for their pet. I offered to pay for replacement should they desire, we do have homeowner's ins and liab. I promised that Dalton will not be unsupervised for a very long time, and that he will have no more toys like the wooden gun he used. I don't know what more I could have said. I was a bit surprised he called the police, but it is his right.
Dalton has never hurt anyone or anything seriously before this. A few fights with other children, but usually they were provoking with teasing first, and his reaction though somewhat overreactive, is not beyond a certain level... and this has not happened in over a year. Kids do get in fights, even normal kids.
I'm just weary. Hopefully I'll know more when they call me back today.
I am planning to get help from Dalton's doc this afternoon, I managed to get an emergency appt scheduled with him for 1:30 today. I called his school and spoke with his teacher as well to warn her in case he gets deperssed or moody today.
Dalton was extrememly clingy this morning, understandably. He was afraid his bunny would die or be taken away. He loves animals so much. He told me he hoped they get a new dog.
I tried to explain that he will not be able to go near their pets, and he understands, for now, that he cannot play alone in the neighborhood anymore. I told him the police took his toy gun, but that we had told him he would not have it anymore anyway, as he cannot make good decisions with such a toy. This is just so sad...
I spent the morning on the phone with NAMI trying to find the name of a good attorney, just in case... Waiting for a call back. I am trying to have a plan in action to be ready if the police do file the charges... I know this will work out, it has to. Dalton is not a mean spirited kid, this was not done in anger or vengefullness, it was a fear reaction born of impulse and opportunity. We should never have allowed the wooden gun we let him buy a week ago. If it had not been in his hand... Lots of ifs!
I am just worn out. I always know in the back of my mind that the other shoe will drop after a period of peace in this house, but there is no preparing for the emotional impact. How can you possibly say you're sorry and relieve the pain of another family when something like this is done? There is no way. Yet, I know this is the illness
and brain damage... not intent. My boy is not a bad kid, but I wonder if this could be our fault in some ways because we bought him the wooden rifle, and allowed him to roam freely in the neighborhood. Yet, we are trying to allow him to be as normal as possible, and nothing in his prior behavior would have led us to believe this was a remote possibility!
Thank everyone for all your prayers and warm thoughts. I'm feeling overwhelmed, but we'll get though, we always do. God is good. There is always a hidden blessing in all situations. I need to have patience to find it this time.
Well, it is 9pm here and we just got the call from the officer re: Dalton, finally. They are pressing charges of animal cruelty and have notified CPS. We'll see what happens this coming week.
I talked with his pdoc today, he did not see me as planned, but referred me to the therapist who has seen David. Soonest appt is 10/26/04. I also got a copy of the recs he had. Not much as Dalton has only seen him 3 times. His comment was that there was no reason to see him since the therapist would be the one to try to work with Dalton and this is not a medication issue.
I did request and get a copy of his medical recs with dx, progress notes, initial evealuation, etc... with this doc. Dalton has only seen him three times since March this year. He was the fourth psychiatrist since we moved to Indiana... I liked the first one we had found, but she left the state, then two docs I did not feel comfortable with their experience, they were both brand new docs, and then this guy we found for David and He is a good one.
I am trying to get a referral from NAMI's national attorney referral system. I figure, even if we are able to get the charge dismissed or his mental status taken into consideration, we will likely have CPS in our lives for a WHILE!
Life is fun! ( a little sarcasm here)... I am geared and ready for the fight, by boy do I wish life were boring and we did not have to do this.
Today was a good day. Dalton is very clingy and anxious. He is reverting to a more immature behavioral level, typical of when he is more anxious. He played for a large portionof the day in his sandbox in the backyard. he is abiding by the ruls of staying close to home with no difficulty, ODD behavior, or resistance! He is truly sorry that the puppy is dead. Although he did not intend the action, or even realize he had killed the dog until someone told him it was dead, he understands what happened, and I do not believe he will ever do anything like this again.
We went to Special Olympics Bowling practice this afternoon, and I was able to get the name of an attorney who specializes in special needs children school issues and juvenile justice. I hope I will be able to get in touch with her Monday.
Later this afternoon, we went to the park and Dalton was able to play very well and appropriately with the other children there. This is not a child who intentionally is mean cruel. This incident was 100% impulse. He impulsively approached a dog which he knows is not very friendly to pet it. At some point the dog snapped at him and tried to bit him. He reacted in an impulsive action borne of fear and self-defense... he hit the dog one time and came home immediately. He did not know he had killed the dog, only that he had hit the dog and he was not supposed to do so, but was unable to think before action.
Fetal alcohol syndrome (FAS) is distinctive in the impairment in the ability to think before action. Impulsivity is a classic and primary symptom of this disorder. Dalton's reaction to fear is one of aggressive self-defense, then flight. Borne from his early days in fostercare and his resolved Reactive Attachment Disorder (RAD) this fight/flight reaction to fear is a residual issue. This is a self-protective coping skill which has a reason to exist.
We will get through this... the issues parenting a child or children with mental illness present can be extremely trying and difficult. As parents, we find ourselves in positions which we would never think to be. In situations, which we would not think possible, and in many cases not forseeable. Yet, all we can do is pray and depend on our Heavenly Father to help deliver us through the fire.
The biggest rules for parenting special needs children, especially mentally ill and developmentally disabled children are:
Be prepared for anything and everything.
Be ready and willing to advocate strongly for your child.
Be willing to accept responsibility to seek the least restrictive enviornment for your child... at school and at home...
Be willing to make the necessary changes to proactively prevent dangerous situations from happening once you know that they are possible or likely!
October 07, 2004
Update on the Hilger home --- Even when our children are relatively stable, life is never normal with Mental Illness...
It is important to remember not to beat yourself up for parenting mistakes, or bad moments. One thing I have had to learn is that we all make mistakes and will continue to do so. We can and need to apologize in a calmer moment, and let our children know we will try to work with them the next time. Trying to work out some kind of a signal form them to us that they are overwhelmedis helpful. Of course I say this and David is not usually able to do this well if he progresses too far in a situation. However, he is able to step away and calm down at times when I notice him becoming agitated, and let him know I am seeing this. This is a huge improvement for him to be able to accept someone else's evaluation of his mental state. Mostly, you take the time and the persistence to learn those triggers and situations which your son does not do well in. In time you will get better at avoiding the pitfalls.
I have tried hard to talk with David to make certain that he knows I am trying to work with him, not against him, and I often have to be the first to apologize and make efforts to regain peace after a misstep. He is not capable to step beyond the paranoia and overwhelming stress to initiate, however, if he is approached, he can meet me part way. It is good.
If we hang on, it will get better. This illness has been a blessing to the extent that I have been forced to learn patience and compassion, more than I ever thought to know. This illness can bring us closer with our children, in time.
I just got back from taking David to his weekly blood test for Clozaril... He's had a not great morning. Not feeling well, and a touch paranoid. He spent a chunk of the morning showing up behind me or beside me just staring, or moning, and staring... While we were at the hospital, he was sittingin a chair in the lounge. I sat in a chair against the wall, reading a magazine. My chair was 90 degrees to his and I was facing his side, though not looking at him. He turns to me 3 times with "What?"
I told him I did not say anything, he said "Stop staring at me!" I was reading a magazine! I asked him if he was feeling paranoid, and suggested he sit beside me then he would not think I was staring at him... He did and that seemed to take care of it.
We stopped to see Gene and had a sandwich with him. David is sleeping again here at home. He seems to be sleeping more lately, for no apparant reason. No more stress than normal, no med change, just more sleep... I guess this is liekly normal, just don't like it. He has Accounting tonight. I hope he makes it through. He got last week'd homework done, but has another chapter which was supposed to be due tonight. He can turn it in next week, but I hate to see him behind, it adds stress to him.
Oh well, life does go on, and symptoms are manageable, so we mange them.
Things are getting better. Over the years, we have gotten used to "Managing" manic symptoms for Dalton and making adjustments. This is not a crisis, I don't think we have had a real crisis in a long time. Last Spring, when his annual mood shift to mania, and the transition of our move, combined with adjustments for his new school knowing how to intervene all hit at once, it was pretty close...
Things are a teensy bit calmer with Dalton??? Hard to tell, he has been on the Zonegran for a week, we upped the dose to 50mg last night. increase again to 100mg next week.
Deb, we have tried most of the meds with Dalton and he is activated by almost any of them that has that possibility as a side effect. Actually, Depakote was the first ever mood stabilizer we tried and he had a full blown episode of what his doc called "Organic disinhibition"! Tightroping a 2x4 railing 10 foot off the ground of his play area! Running in front of cars, cutting himself with knives and coming to show me with a proud grin on his face... "Look, Mom! See what I did?" Depakote was a BAD med for him. Tegretal did nothing but make him vomit, we got up to 1400mg/day no results for his mood, in combination with the Lithium, then we did Topamax. he was on the Topamax, Eskalith, Zyprexa, Seroquel combo as his base for the past five years. It was working, but it was time to try to minimize the number of meds again, we had not done so in a couple years.
Their doc told me to decrease David's Clozaril by 50mg at night, I did so about 5 nights ago, and no bad effects, if anything, maybe he is a bit more alert and less nauseas. Keeping fingers crossed here.
Things are going pretty well here, however, evidently David's job performance has been a bit off??? He has been working for the Dollar Tree since July 10. About 3 weeks ago, there was a day when we got a call, and he had written down his schedule for the week wrong, he wrote down Wed/Fri hours and was Tues/Thurs, so he was called to work Tues and was about half an hour late. Evidently, though the manager just told him not to do it again, it was counted as a write up... About a week ago, David says there was a customer complaint that he had told them he could not look for somthing, and supposedly told them there was no manager on duty... Was write up number two, though he says he did not know was a write up...
Today he called for his schedule and was told he had to come in to pick it up. Warning thought went through my head when he told me, and sure enough, he went and was told he is no longer employed, and they have already replaced him. evidently, on the 25th his manager said she told him to stock some items, he says he did not hear her, and she left a card with instructions for him on his shift, which he says he did not see... Write number 3 and they let him go.
Honestly, the last situation is not uncommon for him to miss something, and I have noticed that he has been dragging more the past week or so. His doc decreased his medication by 50mg and I think he is a bit more alert. We never did talk about his SZ to anyone at his job. I doubt it wouldhave made a difference if they had been aware of it??? Actually, I told David that I was immensly proud of him that he got the job and has done so well for almost 3 months. I used to "KNOW" that he would be fired from his first job, I was certain he would cop an attitude. This is minor in comparison, and he is stressed and upset, but taking it well. He is already planning on seeking another job.
David was getting pretty stressed, unfortunately this built into being unable to do anything. he tok half a thorazine and went to sleep. Still... Good coping skill to recognize stress and be proactive with it, instead of losing his cool...
Hopefully he'll be worth something later, he has a LOT of accounting homework. I was getting him started when he called for his schedule and yadayada...
I was finally able to get David up from sleeping at 6:20pm. he had some pizza, did oneof 9 homework problems that is supposed to be due this evening and played nintendo games with one of the other children who comes to Bible study with his father. Jordan is Dalton's age 11, but the picture of him and Dalton, the gap is so large, sometimes we forget just how large the gap really is! David noticed this and we had a conversation a few weeks ago, it was a great example to be able to use t finally try to get him to a place where he might be able to understand the reality of Dalton's limitations.
Anyway, he was dragging heavy last night, but he had a good day all things considered. Hopefully, he will be able to get moving today. We have bloodwork, need to do his school ID, and he has homework.
I have to remind myself that it is important to keep looking for the positive moments, there will be more.
David lost his job yesterday! This was his first job ever, and he had gone out and gotten it on his own in July. He had been there almost 90 days, but evidently there is a 3 strikes your out policy. He had written his schedule down wrong, shifted the whole schedule off by a day, one week and was 20 min late to work once. Then a customer complaint about his being unwilling to look for something and supposedly said there was not a manager available at the time. Finally, last week, the manager says she asked David to stock some items and left a note which he claims not to remember or find, and he did not do the work... He called for his schedule yesterday and was told to come in to get it, and they let him go.
Now this may seem negative, but there a re many positives buried in this scenario.
1. David did not freak out. He was stressed out and upset, but kept his cool, even accepted my advice to take his half tablet of thorazine a couple hours early, then slept off the stress all afternoon.
2. He is already talking about finding another job.
3. He was not let go for attitude, aggression, threatening statements, etc... Only four months ago, I was certain he would never last in a job for defiance of authority and his mouth!
4. He was give a life lesson that when you work for someone, you are responsible for what you say, think, and do, and there are often no second chances... I have been telling him this, but having it from another source, not mom, is good.
5. His ability to recognize his own stress, take "Some" of the responsibility for the situation, and accept comfort instead of melting into paranoid accusations and a tirade is a miracle...
There is always hope.
Dalton was supposed to have a half day school today, but is stuffy. His behavior was more giddy and manic than lately, we went swimming, but still, he often does not look or act sick when he is. He was snoring and groaning so in his sleep, I called the school and told them I was keeping him home today for a cold. If I can keep him down, maybe he will sleep it off before it gets real bad.
I don't give him cold meds unless he is on his death bed, they destabilize his moods badly.
So feelign a bit loopy here this morning... but the boys are both still quiet for now. they slept in the living room last night. Dalton is watching cartoons and David is still snuffling and snoring.
David is doing well. He did apply for one job yesterday, and hopefully will spend some time tomorrow doing so. We recently reduced his Clozaril by 50mg, a week ago, as he is seeming to be more sedated, and having nausea more often... He is really dragging before noon, and some after as well. His doc thought maybe as he has been doing better he might be on too high a dose. We've seen no worsening of symptoms, but not a lot of improvement on the sedation. we hope that he will be able to find another job which will allow him to work aft/eve and weekends when not taking his night classes.
Sometimes, it just hits you with the differences in social maturity, independence and the impact of this illness... Today, I took David in for a medical appointment. I wanted to check with the doc re: a rx for an acid reducer for David's stress/medication SE related acid reflux. He has been having at least once daily where he is vomiting an amount of acid, and worse when stressed.
The doc gave us samples for6 weeks :) She also did a cholesterol level, and an EKG to test for any QT interval problems. We had never had this done since he has been on the Geodon. It was normal! :)
The impact reality of this illness is the lack of social interaction. David relied on me to talk with the doc about his symptoms and concerns. He is 17, you would think he would be able to verbalize how he is feeling, symptoms, etc... Very flat affect with the doc and nurse, and almost no eye contact or conversation... I remember being 17, I talked for myself, verbalized my health concerns, and usually did not want my mother there during an examination!
David is doing very well compared to just months ago, but this illness certainly still has effects!
September 28, 2004
Stability... Where is the line between stable and manageable, and stable but needs improvement?...
I've always said that stability is in the eye of the beholder, and means something different for every person. some of you may remember that we were able to get Dalton off Zyprexa last spring when we almost doubled his Seroquel. We also removed his Tenex, and the Inderal we had replaced it with as they were not doing much of anythign measurable. Then as summer began and school ended, we removed his Topamax.
When we took aways the Topamax, several things happened. His thinking was clearer, his languare was a bit more mature. he was speaking in more complete sentences and paragraphs. He was reading, and as school has started, he seems more ready to learn and is doing well at school. In addition, Dalton is making real friends more than in the past, I don't know that this is related to the Topamax, but who knows? However, on the negative side, his hyperactivity increased, and his ODD... We added Abilify which we had had a PRN RX for and had not used much, I really did not see a measurable effect. Hopeful thinking made me consider his activity and impulsivity may have decreased, but over the course of the summer, his increased steadily. Yet, he was still doing so much better in other areas, I did not want to make any changes for fear of losing the improvements.
I increased the Abilify to 7.5mg from 5mg, and I saw his anxiety become more. So, over the past couple weeks or so, weaned him off... No regression or worsening of symptoms, but maybe a bit less anxiety??? Another negative we have seen is that his toiletting (BM) issues have become constant. He rarely if ever uses the toilet for a BM, and is having accidents 3-5 times a day, including at least once a week at school. Gene told me a month ago we needed more meds for Dalton, I did not want to hear it... However, I had to conclude that he was correct. Definite hypomania, and we need to get a handle on it before spring.
Last week we did a lithium level and he is at .8, Although this is therapeutic, Dalton usually requires 1.0 to be stable, however, before we would raise his dose, I would want to see a 2nd level to confirm. Instead, I called the pdoc and asked that we add a MS to replace the Topamax, and asked for Zonegran. Dalton began 25mg last night, to go up to 50 next week, and then 100mg the following week. Wish us luck. I hope this works without dulling. I know this can be a good med, but we don't have many options to try since we have bombed on so many, and I don't want this to be another failure...
Gene and Dalton are out graage saleing this morning.... great activity for a manic kid! LOL
I almost forgot to mention that he survived ISTEP testing this week. I volunteered at the school two days, and then went on the reward field trip for the kids who maintained level and behavior during testing, to the zoo yesterday...
Dalton is academically 1st grade for the most part. He is being tested at 5th level! He did great to make it through. He was on silver level the beginning of the week. He had an incident in lunch line Wed, and dropped a level, he was hit and he hit back, but pulled it together for the remainder of testing. Also, since the incident was not during testing, he was able to earn back the field trip and move back up to Silver.
It is awesome to watch him with his class on trips. He is not clinging to me the entire time, he is less overly affectionate with me, Yes there can be too many hugs and kisses! And he has made friends. He made it through the entire trip without a single incident. The classmate who he had the Wed incident with did not. The bus left without him and the behavior teacher when it was time to go as he lost it last minute!
There are good things. I wouldn't consider Dalton unstable, but definitely less stable than we would wish... It is hard to draw the line between stable, manageable, and stable, but needs improvement.
Dalton is not Schizophrenic, his primary diagnoses are Bipolar FAS, and PDD, but there are many similarities in managing different mental illness in children, especially while they are minors. I thank God that I am able to do this while they are young and hopefully avoid major issues as they become adults. there is a blessing in all things if we look for it.
And life goes on....
I hate med changes, and I brought this one on myself. Would I do it again? Yes, in a heartbeat. I want to have Dalton stable on as few medications as possible. We have needed to reevaluate his medications for a couple years plus, now, but then we were going to move, and we did not want to upset the apple cart before we did so. Then, transition of the move, and new school and spring all hit the fan together... Next, it took us four, yep! that's right! FOUR tries to find a psychiatrist in IN that I felt reasonably comfortable with. So all that time, we remained in holding pattern... Then, big brother fell to pieces. As David's behavior became more and more volatile and psychotic before he was stabilized this spring/summer, needless to say, it was not the time to really mess with things too heavily... However, as Spring came and went, we did begin to make some changes.
I believe we are on the right track with Dalton's meds, but I hate the cycles we see in Bipolar illness and the behavior that goes with it. he is doing wonderfully in so many areas. Areas that I once had little hope he would ever do this well. Socializing with other children, not family, is one. Overall picture of behavior at school, another. He is gaining academic skills, finally learing to read and actually made a year of progress last school year! Though he has moments of difficulty in all these areas, he is making friends, and is respectful in most cases. Unfortunately, when his moods are cycling, this is when I see some of the old attachment fears surface again. Like the boogeyman, they come to haunt this family and him. I think the thing I hate most about mental illness and prenatal brain damage, is that there is no cure, there is chance to have it all disappear and go away long term. Although this is a very manageable illness, you have to manage the symptoms. You have to always be aware of you child's mental state, and be proactive to avoid disaster. In other words, parents... mothers... I have to be hypervigilant, constantly measuring and evaluating the symptom load in the house and take appropriate action.
I ask myself, how is this different from parenting in general? Other parents are constantly doing the same, aren't they? And I guess the answer is yes, but the intensity level is different. The tolerance level is different. They may see a few of the behaviors we see, once in a while, but not constantly. It is this intensity, and frequency that is so wearing...
I am still hoping and praying that the Zonegran helps to level Dalton's moods. I can feel my interal voices telling me, that this is not nearly as bad as things have been in the past, what am I feeling so stressed over? Yet, the stress is palpable, all the same.
Dalton, aka "Beavis" got off to school this morning. Thank the Lord. He is not aggressive, he is not cursing, yet he is obstinate, oppositional, passive aggressive, which is in many ways more difficult to handle for me than the typical history of explosiveness and aggression. He refused to do his homework, but then as the timer went off that I had set to indicate the amount of time he had before the bus was to come, he got upset and shut down that he was going to do it, "If you touch it again, I'll break your neck!" He had pushed his meds across the table and kicked his shoes across the room, but I managed to cajole him into a smile and downing his meds. He got his shoes on in one minute flat, without untying them! He beat the timer by 4 seconds, with a "See, I beat you, so there!" Again, he refused to relinquish his paper to be put in his backpack as he was going to "Do it"... Asking me if he could go the toe Dollar store after school...
I had told him that, yes, he had earned a trip to the Dollar store, but to go on a specific day, he has to do what he has to do... He still gets the trip, but it will be on a day when he makes it through school without incident and gets his stuff done in time for the bus in the am. Yesterday he had a -10 pts on behavior for profanity in the last 30 min of the school day... Today, he did wasted his homework time with the oppositional behavior... I told him if he does well at school, we can do french fries at the McDonalds, but the store waits for another day. Of course, this was met with a "No, I won't!"
The bus had to wait for him to get moving from his shut down pout at the kitchen table, I managed to get him walking with a "threat" of discipline if I had to take him to school. He took 2 inch steps to the bus from the door to the yard, dropping his back pack every other step, but would not allow me to carry the pack... the bus drove away with him head hanging low, dejected, non-verbal, shut down...
I called his teacher to inform her of his moodines and hopefully, he will be able to have a good day. If they know what is going on, they can usually be proactive and he will pull out of it. I hope so. This is not a crisis, but is almost more tiring...
On a good note, he has poo'ed in the toilet twice, Saturday, and yesterday! typical of this mixed mood state... ups and downs. I need to focus on the ups, I know this, I know we will get through this... Fingers crossed and prayers lifted here that this will not take too long. I hate the way these times make me feel, and I feel so sorry for my baby. I just want to and I cannot. It is a powerless feeling.
I knowt hat removing the Topamax was for the best, there have been too many positives to think otherwise, but the process of finding something to handle the symptoms that this med was covering without pulling back the negatives it caused is a major PAIN!
Wish us luck and send the prayers for sanity...
Thanks for listening, if you got this far, I did not intend to be long-winded, but sometimes putting it in writing is therapeutic.
September 20, 2004
In a world of his own, he exists
In a universe of his creation, he awaits
In a galaxy of possibility, his mind resides in joy
Inhabiting a sphere unknown to man
His fingers flutter sequences designed
Constructs from the genius of his mind
Assembled from the concepts hidden from our austere view
Reality�s perception transformed to something new
His gaze, which seems unfocused, is intent
His sight, appearing blind, sharply aware
He lives within our sphere, a guest to be held dear
A treasure, undeserved, placed in our care
A flicker of attention brings a smile
Fleeting 'cross his face belike the wind
His soul, a thing of beauty, untarnished by life�s pain
Endures to shape humanity serene
*** Remember that even when our children may be acting as termangents, they are a special gift from heaven. Treasure each precious moment... ***
Family history... The legacy of mental illness...
We always knew that there were members on both sides of our family, Gene's and mind with mental illness. We just never considered the possibility that this illness would affect our immediate family in any way. Aware of mentally ill extended members, gave stories which were different. Stories we could compare and find common ground with each other. Stories that were if not humorous, were anecdotal uniqueness of the differences in perception and reality.
For Gene, the most apparent factor of MI affecting him personally was growing up with a mentally ill mother. Years after the fact as searching for answers and history with David's diagnosis, we found out that she had a dual diagnosis of bipolar and schizophrenia. We always knew the bipolar diagnosis, and for this reason did not think of SZ being a factor from his family, in finding David's diagnosis. Gene's mother's illness resulted in his parent's divorce, 25 years after she was diagnosed. She did not comply with any one doctor's treatment, but we found after she committed suicide that she had multiple docs, all rx'g meds, and none knew of the others. She took whatever pill took her fancy when she wanted to... Scary.
His mother had tried to commit suicide over 10 times. He recalls her being hospitalized more than once as a child. When he was 14, he was cleaning his shotgun, he had gone hunting. His mother called the police and told them he was trying to kill her! His older sister was able to explain to the police. He ended up living with his brother and new sis-in-law for a couple teen years as he could not live with his mother's illness.
When I met his mother, she rarely did anything but sleep in a rocker, sedated from medication. She committed suicide the night after we had announced our wedding date. His sister found her the next morning.
His grandmother and her mother spent the last several years of their lives catatonic. The stories, they did noting but sit in a rocker for years, except to eat and sleep.
My paternal grandmother was classic paranoid schizophrenic. We just knew that she was different. That's all that was really said. My grandfather pretty much lived in his car for many years... Grandma hated, was terrified of men, so he did not sleep at home often. He always made sure she had food and what she needed, but she would never take medication. I remember that all Grandma would eat was Wonder white bread, Buddig beef, opened and spread out on a plate uncovered in the fridge to dry, and stars peppermint candies. She liked salami as well, but would always pick out the peppercorns as she was deathly afraid of anything black.
Grandma talked to people who were not there. I remember she had a 1950's calendar with pictured advertisements with women. These were Grandma Mary's friend. She had several names she used, usually adding "Blue white" as a middle name. She was very focused on cleanliness and whiteness, purity. She bathed her children, 4 boys, in bleach when they were young! My father ended up being raised by my mother's parents, unofficially as a teen. They were foster parents and he lived with them for a while. That and the minister of the small church they attended acted as surrogate parents in many ways.
I remember visiting my grandmother. She always talked about being afraid of the little black bugs. She used to band aid the cracks of the plaster walls so the house would not bleed. I remember she once asked my mother how she could stand to allow my brother around, wasn't she afraid he would kill her in the night? My brother was 6.
One summer, the temperature was about 105 degrees, not a cloud in the sky. Grandma had walked 5 miles to our house for some reason, to visit. She wore a rain coat, galoshes and carried an umbrella, because it looked like rain! We were just sitting down to lunch and my mother told us to say our prayers. Grandma said "Yes, be sure to pray to your mother, she feeds you every day."
When she was pregnant with my father, they did not know. She was given EC shock treatments then. Grandma dies when I was in college. Grandpa had to move a trailer onto their property, the house was condemned. Grandma refused to move, and he finally had no choice but to admit her to a sanatorium. She refused to eat and died.
My father was dx'd as bipolar years ago, when I was in 6th grade, he was also told he had a very mild seizure like disorder, again for which he has refused treatment. I believe this is an accurate diagnosis, but he did not like the way Lithium made him feel. He also wanted nothing to do with anything that would liken him to his mother. He never took meds. He has classic highs an lows. He is extremely intelligent, always kept a job, but his grandiosity has often prevented career success in the past. He would work always, but he would sleep all winter when not working. when he gets something in his mind, he pursues it with obsessive, manic intensity. As the years have passed, he has leveled out a bit. Two of my uncles were alcoholic and have passed away. The other uncle would almost qualify as Asbergers, though never diagnosed. He is a very isolated personality. All the boys were dressed as girls until their fifth birthday. Grandma wanted a girl so badly... My grandfather got them a haircut and pants before they entered school in kindergarten...
I look back on these memories and stories and wonder... But this was just part of family, they were different... but they were our family...
In retrospect, it makes me wonder about David's future, but then again, it was awareness of these stories that allowed me to question and get correct diagnosis for Dalton after his adoption. It was Awareness of Dalton's issues that helped us to recognize David's illness. Being part of a family with our history, I know that there is no reason to fear these diagnoses, but that talking about the illness and acceptance of it as part of reality is part of accepting and loving all of our children and family.
My memories may be different, but I remember them with fondness.
September 14, 2004
School = Stress = Instability...
OH the agony....... Well, it is officially week four of David's night classes. He is doing well in his intro to business class, he got a 82 on his first quiz... he had his first history test last week... Accounting is a nightmare. I had my doubts about the amount of homework for this course when he signed up for it, but Gene was for it, David was interested, and I did not want to be the nay-sayer.....
I know accounting. I have a degree and my CPA. I can explain the information, but The homework is increasingly overwhelming in quantity with each passing week. I do not think there is a way around this. Last week was rough to get through the homework. Yesterday was two hours of H*LL and he finally finished one problem. He has class this evening, and has one more problem to do. This problem is very detailed. basically opening the books for a new business, the opening transactions, the adjusting entries, the financials for that month, the closing entries...then repeat the process for the next month. he has reached mental overload and paranoia/explosiveness. I hate this illness. I think I am ready to have Gene talk to him about the realities of being unable to do this level of a course for now, drop the class and eat the $$. Education is not worth peace!
Right now David is in the other room telling me that he hates liars, he does not like people who are liars... but he in incapable of accepting help. The minute I try to explain anything, he explodes verbally...
Stability does not mean cured! There are limitations. I wonder even being stable if a college degree is in David's future? Oh well. Thanks for letting me vent... Tomorrow is another day. Technically, though the problem is due tonight, he has until next week to turn it in. maybe we'll try one more week.
Have you ever watched a rabbit when it knows it has been seen�
When the danger bells are sounding with alarm�
When he stops within that instant, and he hopes to disappear
Freezing, in that moment, locked within his fear
Or that deer caught in the headlights look, fleeing through his eyes
When arrested there in time he cannot breathe
Staring, yet unseeing, undetectable to self
His heart in shredded terror on his sleeve
When a petrified event is the juncture of his mind
Suspended from ability to think
Where his reason flown away, lays deserted in the quay
Drowning in a well of bilious ink
Overwhelmed and overstressed, he is overcome with grief
Stationary, still, immobilized
Traumatized he cannot move, shocked by disbelief
And you watch his spirit shrivel up and die?
The helplessness is heartbreaking�
Blessed are the meek...
Blessed are the meek,
for they shall inherit the earth.
The very word brings security
A wealth of comfort
A breath of peace
Strength is a foundation
A support, upon which a life can stand
A shelter to protect and shield
Defense from insurgent forces seeking to conquer
Strength is not force
The words brings fear
Fretful apprehension driving peace from mind
A storming tide to wash away the sand
Beneath foundation�s stone
Delivering death of hope
Force is not strength
This is a special word
Its use often misused
Thought of to mean weak
Mildness to be rued
Yet meek, is truly strength,
Strength under control
Power owned and leashed, bowing to the goal
Held at bay by mind, submitting to the soul
Of heavenly command, bending to the rule, of kindness
In face of hate
In face of might
In face of force
Meekness is the ability to rein emotion with attention
Thought, empowered by God,
May we all be meek, in the face of our children.
May we show them godly love and forgiving.
Meekness is not weakness. It is firmness, solidity,
a foundation delivered with a whispered breath of peace.
September 13, 2004
It�s who I am
I want to be
I own my destiny
This is my world
My erstwhile hero
Rare yet half-done
My own reality
Is mine alone
He is �I am�
He so loved me
He is the sovereign
He gave to me
It stands for edging
It stands for God
It stands for out of me
EGO: Edging God Out
Must learn humility
It is my choice
Spirit�s in Jesus� hand
He makes me whole
September 10, 2004
I Surrender All�
I wish I were an angel who could fly into your dreams
To wash away your tired tears and clear your angered screams
I wish that I could calm your heart with soft and silken words
Delivered on the melodies of sweetly singing birds
I wish that you would never feel the need to run and hide
From all the qualms within your mind, secreted deep inside
I wish that you could only see the heavenly display
That filled my soul when you were born upon a special day
I wish that I could heal your pain with but a single kiss
Which fallen on your velvet cheek would bring your spirit bliss
I wish that you could feel the joy your presence brings to me
For one transitory instant when you could simply be
I wish that I could make your sorrow vanish in the night
By exorcising agony eternally from sight
I wish I had a way to comfort your intransient fears
To bring you quiet for a spell relieving you from tears
I wish I had an answer for the reason that you feel
That no one cares if you should die, while wondering what is real
I wish for resolution, for a heartfelt remedy
As finding myself broken when you say a prayer for me
I wish and cry, I wish and pray, I wish you had a chance
To live your life without this dry and desolated dance
Yet all my wishes are for naught within the greater scheme
Designed by time, by fate, by life beheld within the theme
That God ordained to be the goal you were born to achieve
And give you up to heaven, putting faith in him to save
You � My child � My son �
September 08, 2004
Every strand of hair upon your head was counted
Every leaf upon the tree has shown its face
Every shadowed clouded form has been added to the mark
Tallying the blessings in your name
Every smile has been forecast before your birth
Every tear that you have shed already fell
Every hope and frail desire was known within the mold
Forming you to be the �Who� you are
Every choice you�ve had to choose from here was seen
Every path which you could travel was laid out
Every moment of your life was ordained before the cry
Announcing your arrival on this earth
But the way you style your hair is yours to choose
The cut, the length, the shade, the very hue
And the path through clouds or sun, on which you choose to run
Is a choice that has been left alone to you
To smile or cry a tear is your decision
The result of your selection for the day
And though your heavenly Father would love to lend a hand
His opportunity to do is yours to say
Fate, we often blame for fear or shame
Simpler to disdain than owning fault
Created for a purpose and a reason
Our desired destination, ours to halt
From the Potter�s hand our bones and flesh were cast
Intended to reside with him, to last
Every thought within our minds designed to fit the bill
Is hampered only by our gift�
- - - - - - - - - - - - - - - - - - - - - - - - - -
The greatest gift that God ever gave to man is the greatest challenge that we'll ever know. Regardless of the experiences we may endure, be they good or bad, simple or difficult, the one thing that separates mankind from all other of God's creations is the gift he has given us... The ability to choose, freely, how we will respond to life. This is the greatest lesson that each of us has to learn, and the greatest challenge we have as parents: To teach our children that no matter what they have been through, no matter what has been done to them, they can choose a different path than their environment would indicate they will walk.
Free will is a blessing and a curse. When we make a concious choice to choose, we become responsible for the results of our decisions. What a blessed challenge God has given all of us!
Eye of the storm�
She sits within the center of the room
Chaotic screams surround her very breath
Proceedings from the fractured day lay strewn
Beneath her feet and burdened on her chest
She is the calm inside the winds of pain
The cooling peace within the fiery blast
A mote of dust, which landed, lays quietly at rest
The stillness at the axis her home
Outside the world is swirling in the night
With tempests borne of unremitting rage
Coiling �round the quay and drawing ships to drown
Luring weakened souls into the gale
Still yet, her arms bring shelter to her kin
Enveloping within a safe embrace
Of comfort offered fiercely, along with all her love
Oblivious to jeopardy or place
An island cushioned, wrapped in cotton wool
Fixed steadfast, firm, against the crashing seas
The anchor stone within foundations wall
She is the framework for her family
In the quiet, in the dark,
in the undiscovered depths
Deep within the caverns� grasping, gasping breadth
Trapped alone inside a view
of twisted tortured song
Her soul, her mind, her will seems to have flown
And laying in the ebon space,
listening to her pain
Reverberating with each clenching pulse
Her tears are drawn up through the well,
beleaguered as they fall
Sketching imprints of a heart forlorn
Sightless eyes where windows
once opened to the day
Are blackened and are broken under skies
Where huddled shuttered, desperate
her joy has gone astray
Mislaid, her sheen has vanished into night
Sitting silent, lost in thought
A subtle sound was heard
Barely making waves upon my mind
Its secret stroke brushing soft
A muffled whispered breath
Searching for affection on its climb
And passing by my present
To futures yet, unknown
Message so essential to my time
�twas only by the grace of heav�n
The import caught my ear
Rousing weighted pressures intertwined
Colored shirts like flowers covered the terrain
In bunches as they gathered on the green
Voices sang with pleasure roving with the call
Of shining orbs of glory where they fall
With bats of blazing silver, with heads of tempered steel
The goal shone like a beacon on the hill
And lifting application, imbuing subtle might
The glowing hail of beauty leaned to fly
Shots rocket like an arrow into the grassy knoll
Reflecting sunlit rays upon the shoals
Whose gaze projects their wonder in adoration�s tune
As songs of laughter, joyously were hewn
August 21, 2004
Bending over laundry, scrubbing underwear with soapy hands
Turning deafened ears on willful, mulish, obstinate demands
Meeting kicking feet with soft and calming words designed to cure
Offering embraces, even in the face of hateful slurs
Praying in the night, carressing shadowed eyelids while he sleeps
Praying in the morning, as he casts her love back at her feet
Never giving up, no matter how unlikely is success
Forever hanging on to faithfulness, even in distress
Persistence in the face of insurmountable desire to flee
Staying at the scene of battle, one more time, until he is set free
Hugging him, and holding him, while he screams she's hurting him, again
Promising to remain beside him, locked in battle to the end
August 20, 2004
To parents of younger mentally ill and developmentally delayed children...
Dalton returned to school just over a week ago. I went to his school open house last evening. He is doing wonderfully this year. His teacher for reading and math took me aside, and told me he is clearer, brighter, and more alert. He is ready to learn and excited about school this year! This is the same teacher for these subjects he had last year...
I thought I had noticed this myself when we took him off the Topamax at the beginning of summer, but it is wonderful to have it confirmed. He had been on Topamax for so long that we did not realize that it was dulling him a bit.
There were times when he was so psychotic and unstable, early on, I never thought I would see this day, but there is hope with patience and persistence. He will be 11 on the 28th.
The wheels on the bus turned�
It was early on a Wednesday morning and the sun was shining brightly. Under a cloudless sky they stood waiting in anticipation. After a halted hiatus, far too short in both their views, the end to summer fun had come. She looked on with pride and poignancy as he bounced with excitement. Her heart beat pitter-pat, then skipped a beat, as he barely allowed a hug before departure...
and the wheels on the bus turned�
The screech of air-brakes ripped a hole in the morning peace. Her stomach turned a somersault in response. Exchanging smiles with Driver Phil, salutations were restrained, and brief concerns were passed with wings of hope. Her, blue-eyed angel, turned for one more smile, as lugging bags of treasure he climbed the stair. The bus�s aide reassured and guided him to his scheduled berth, and settling in, he strapped his buckled belt into place, as they shut the door behind him and released the brakes�
The wheels on the bus turned�
carrying her hope into tomorrow, then rolled away onto the shining path. They drove on, leaving her behind, clutching hard to treasured dreams and memories of days since passed, and those still yet to come�
and the wheels on the bus turned�
while he waved his upraised hand in a sign of peace.
August 18, 2004
Mentally ill and developmentally disabled children can learn and succeed!
Dalton has been in school for a week, as of today. he is doing wonderfully well!
For over a month before school started, and even more intensly during the week before school began, Dalton would insistently tell me: "I'm not going! You can't make me!" The day before he was to begin, I bought him a box of tissues which had Micky Mouse and friends on it it sparkly glitter and colors. He told me: "When this is empty, I'm going to bring it home and keep it! You know I like shiny things!"
He went to school just fine.
The evening before school began, I spoke with Dalton's bus driver. It is included in his IEP(Individualized Education Program) that he is to be seated in the front, passenger side, seat on the bus. This is to, hopefully, allow the drive to keep an eye on Dalton, and to minimize the temptation for him to act out due to other children being in his line of vision. This year, his driver asked me if I would mind having Dalton sit elsewhere. They have another student who is having more difficulty than Dalton had done last year. This child is also a child with whom Dalton has had difficulty, in the past. He would like to have that child in Dalton's seat.
Transitions are difficult for Children with mental illness, and for those with FAS. Chances to their world throw them off and make them feel unbalanced. This results in fearful responses, often appearing as acting out behavior. Needless to say, Dalton was not enthralled with the idea. "He's not sitting in my seat! If he does, I'll punch him!" I managed to talk with him multiple times in hope of preparing him for the transition, givngin him time ti get used to the idea... Finally, the morning the bus came, I promised a trip to the Dollar Tree if he did not have incident! It worked. Dalton has been sitting in seat number 9 all week without difficulty, and is taking pride in his achievement!
Thus far, he has not had a single large incident at school. he is coming home with over 50 behavioral points a day, from his alternative school, and is actively proud of his own behavior! Monday this weed was the firs day of actual homework, and he has completed his work both days well, without difficulty. Even a year ago, homework was a major issue, and prior to that, it was a nightmare which I simply did not even try to get through with him.
There is hope for all children.
All children can and do learn with the proper interventions.
Children with challenges such as mine have, can succeed.
Dalton is learning to read, and I am certain he will come a long way this year.
Do not give up!
Do not give in!
There is always a light,
Which we can win,
If we will try...
August 12, 2004
David is getting his first car! Since David is enrolled as a part-time college student for this fall, and he is working, albeit only 9-10 hours a week, it is time for Mom not to have to be chauffeur all the time. A neighbor's son's girlfriend has a Dodge 92 Shadow for sale, he is buying it this afternoon. We're paying half, he is paying the other half.
David took driver's ed last fall, before his illness got so bad. He passed with a B, but never took the test for his license. Even though he was not as bad as he got before his hospitalization, his anxiety was way too high, and then our confidence, way too low! anyway, he went in and took the written test today and passed!!!! He will take the driving portion next Wednesday... Scary..........! Anyway, hopefully, this time next week he will be a licensed driver.
I think this morning is an illustration of the idiom:
"Any stress is bad stress..." or, "Even good stress is bad stress..."
He originally went to the BMV, up the street and did not tell them he had completed his Driver's ed course and passed, therefore they told him he could not take the exam! This, in spite of me having told him to show his card from the course instructor! He was borderline melt-down... with stress. I managed to cool him down, and took him back... He took the test and passed.
On the way home, he was telling me how he was happy he passed the first time, and being excited. The topic changed, and I mentioned chores. I asked him to clean the basement rec area... He got agitated over:
"Why should he have to clean up after his brother?" and "He is tired of being ignored!"
I responded with because we are paying $450.00 toward your car, and more for licensing and insurance... We do things for each other because we are family... I told him he is doing nothing for his brother, I am asking him to do for ME! I also said we are just getting home from me taking you to take your test for your license, I have no idea where you think you're being ignored... I finally gave up and told him to take his noon thorazine and sent him to nap for an hour...
Gene called and asked why my response, I told him even good stress is bad... I remember having to be very aware of transitioning from one task to another with Dalton, still do... Unfortunately, David is where Dalton used to be in this arena re: stress... He is doing well, but we definitely have proof this illness is not a figment of imagination, and that there is a reason we did the GED and part time school. He is doing great most of the time, but any added stress can upset the apple cart easily
To be or not to be
Waking in the early morning,
as early as, the deepest night
When all the world, was silent
except for the creaking of the air
... I breathe
When each moment was exaggerated
Blaring bells announcing every thought
and laying in the blackened space
The thrumming of my heartbeat
echoed thunderous in my ears
... to see
reiterating questions of my state of mind
Who am I? Where am I?
Why am I? What have I done?
... to me
In the pitch, in the black, in the darkness
my soul awaits� an answer
What is my purpose? Why am I here?
Who have I helped? Whose is this fear?
... to be
Gene and I are both starting our antidepressants again... we stopped after halving the dose for a month, but we both decided that we need the low dose, at least... Transitional times of the year are very stressful on everyone!
August 11, 2004
School is back in session!
LIVING IN CHAOS SURVIVAL A Parenting Journey...
Dalton went to school today, with minimal difficulty getting him out the door! All week it has been "I'm not going to school!" "You can't make me!" LOL
He is doing very well this summer since we removed his Topamax and Zyprexa, however, he is a bit more active, and anxious.
Dalton has not been sleeping in his room for most of the summer. A sign of just how far David has come on the tolerance scale, he has been letting Dalton sleep in his room on the floor, quite often! Anyway, with the onset of the school year, we have been struggling with Dalton to get him back inot his room, and into his bed. We did have some success this week. He slept in his bed Sunday and Monday, after a rough struggle to get him to go to sleep. Last night, he slept on the floor in his room. better than half in his room and half in the hall, which was as close as we have gottn in the past month.
The trick to getting him to finally accept that he was going to school today? I bought him a box od tissue with Mickey Mouse on the box. And it was sparkly and shiny!!! His quote last evening, as he was going through his backpack, for the millionth time... "When the box is empty, I'm going to bring it home and keep it!" "It's shiny, and you know I like shiny things!" Gotta laugh... :o)
REALITY CHECK! on Monday...
Earlier this week was a bit touchy. Monday, we got confirmation, yet again, that David's illness is not a figment of imagination or mistaken diagnosis. Sometimes when everythign is going well, you still get the fleeting thought, that maybe it's all in our minds, and he's really ok. How could such behavior really be his reality?????
He forgot to take his medication Monday morning, and I did not realize it until 3om.
I had planned to take the boys swimming before Dalton had to go back to school today, but Dalton has not had a BM in a week, and has not gone in the toilet since before then! He is full and leaking in his pants... constantly. :o( Darn it! I could not get him to go. I was in a rough mood as had a computer glitch on my book, but I got it fixed, and the boys were at each other's throats. Constant provocation, but neither would accpet responsibility for being provocative.... David's quote: "I'm not doing anything! Dalton is bothering me!"
I did not make the best choices in interaction methods with David in the car, and had to return home before we got to the pool. he melted into a sceraming, paranoid, delusional, meltdown in the back seat of the car. Cursing, crying, etc....
He did pull together later in the evening, and did well. He and Dalton stayed home while Gene and I traded in our car for a van. We now have a vehicle with separate rows of seats for the boys if need be!!!! Yippie!!! and lowered our payment.
Yesterday I tok the boys to lunch and we went to the driving range and hit a couple buckets of balls. Then Dalton had a "pitch in" at his soap box race... Over all we had a good evening.
Gene and I both went back on our antidepressants this morning. We had dropped the doses on each to 1/2 about a 6 weeks ago, and stopped altogether 2 weeks ago. We are both feelign more stressed and it is not good for us or the kids, so back on the half dose and see what happens....
Life is good,...
God is good...
My kids are good...
and all is good in the world...
Today is a new day and a clean slate. I hope school goes well for Dalton, he did take a long bath this am, and took a Poo in the potty before school! Thank God!
God Bless you all.
Angry home� (written Monday)
Desert winds drive deathly desperation
Flooding breaths with blistered, briny blaze
Cauterizing hope and health, with hatred
Subjugating worth to wretchedness
Trapped within the telltale lock caught turning
Riveted, unable to redress
Fearful of the fiery inferno
Blinded she is bound beneath her breast
Weary of the constant churning chaos
Quaking under urgent ulcerous qualm
Callous chamber, cavernous, consuming
Life and loving, lifted from her lungs
�till she lies withered here�
in shriven stone.
I live a twisted life, from where there is a view
unusually different, and wonder if I knew
what God had planned for me, if I would e'er have made
decisions that were chosen, or walked another glade?
August 06, 2004
Catching up! David is officially a college student!
It has been a couple weeks since I was able tot ake the time to update on the Hilger home. Life is good, my kids are good, my hubby is good, God is so good, to me...
In the past few weeks, we have been very busy. My parent's visit went very well. My father enjoyed the boys, and David expecially enjoyed my father! They went on several walks together and got to have guy talk, grandfather to grandson, and vs. versa. David ate up the attention, and Dad enjoyed being the center of attention. LOL
At one point during their time here, Dad told me that we seemed to be much more peaceful this year compared to last. You can say that again! David is stable, and doing well. Dalton is a bit hyper and anxious, but also doing well. They are both getting along a good portion of the time, and this makes home life much sweeter. David is doing so well, that at our last therapy appointment, we determined that we would not schedule another appointment at this time. We will leave it indefinitely unless a problem should arise.
David has had his friend David (Sully) over most weekends. he has been showing up on Fridays and leaving on Mondays! LOL Our unofficial adoptee! We told his mother if he stays any longer, we'll start charging child support! Not really, but he is a good kid. Kind of between my two. Sully suffers Tourettes and anxiety/depression. We've gone Canoeing and tubing again the past couple weekends and all the kids did well. Cheerful and no blowouts! I think this has been one of the most peaceful summers we have had in several years.
Dalton is doing great. He is doing soapbox derby racing in a program for disabled kids, and loving it. He is getting ready to have a golf tournament with Special olympics, and Bowling starts next month with the Spec. Olympics. We've all been enjoying the free movies in town and $1.00/game bowling. It is nice to do family things and have everyone be able to enjoy without fighting.
This week, we found out that David did pass the GED, with flying colors. Minimum average score to pass was 450, he averaged 518. Minimum score in any one area was 410, his lowest schore was 430, and he scored in the 82nd percentile in math!!!!! I took him today to enroll in community college. Gene's bonus is gone, but it is official, he is enrolled to take 9 hours this semester! Three months ago, when he was in the hospital, I never thought he would be doing this well, this quickly.
We've been talking to David about his strengths and weaknesses. he is a very concrete thinker, very black and white. he has been talking about computer repair as a filed of study. We've been explaining that there is not a great job market there anymore, that computers is better served by programming, and he simply does not do well with creative thinking and flexibility. Business, and accounting, specifically, is very concrete, and this is a field he used to toalk about before his illness was so pronounced. David commented that:
"WOW! That is something I wanted to do before, and didn't think I could do anymore!" Life is good!!!
I hope everyone is having a blessed day.
"there is always a light, no matter how dim, if only we seek to find it"
In the early days of time, when I was very small
I remember looking at the pictures on the wall
All the smiling faces, all the fancy clothes
Wondering who they were, and if I had their nose
I remember running to the arms of relatives
Welcoming with kisses, just like everybody did
Shouting words of greeting, laughing at the sight
Of many feet approaching, every child�s delight
Safe within my world and confident of love
I never knew the difference and had no fear to move
Secure in my position, assured of their support
I grasped the tails of life, trusting in my court
To lend a helping hand, whene�er I had the need
And always stand behind me, for they were family
I watch him playing from across the space
Interacting with a grand delight
And lose myself in memory of days, not long ago
When this was but a dream I didn�t see
And he plays on
To my wonder
I listen to the laughter that comes ringing
Carried on the shadow of the wind
A sound, not only his, but that of other children too
Angelic sounds of heaven, sent to me
And he plays on
To my tears
I feel each passing glance they interchange
Words and smiles, a transitory gift
A blissful joyful aptitude for friendship giv�n and earned
Landing on my soul, quite like a kiss
And he plays on
To my elation
I close my eyes and dare to fantasize
Raising gratitude to heavens gate
And lift a prayer of praise: How far he�s come, from where he�s been,
From when his soul was drowning in despair!
And he plays on
In his joy
Bright eyes are the prize that I�ve been searching for
Shining light, illuminating me
Beaming rays of cleansing grace and empathy
At last, achieving what was meant to be
It wasn�t long ago when life was an abyss
An impossibility to scale
When faith and hope were stretched beyond capacity
Breaking fragile bonds, as loving failed
But struggling, persistently, we fought to win
This battle which you could not comprehend
When blackened days were dark and full of tragedy
Where the light seemed destined just to end
As time intruded into days of dazzling dreams
When sunshine started to surpass the night
For each step forward, only half were contrary
And pain would fade away without a fight
Where gentle winds have blown all shadows from your mind
Clearing views to future hope, unchained
Eventually, the clarity�s� reality
Banished blackness from your window panes
A phone rings in the distance
and I hear an answer soft
Spoken in a voice highlighted
by a resonant inflection
With waves which rise and fall,
belike a melody
as it lands upon my ears
I hear a chuckle, rumbling low,
hidden underneath his breath
Unspoken, yet powerful,
his inner soul blazing with the sound
reminiscent of days past
When happiness was the norm
and sadness, seldom viewed
Lingering, an eavesdropper,
I�m witness to a fabulous event
Listening to a conversation,
which ebbs and flows,
gives and takes
Murmurings of insignificance,
Like rain upon a desert land,
reviving life back into desolation
Simple things which normalcy
would seem to disavow
Tiny things, petite and small,
without a history
�Who would know?�
Yet to this mother�s heart,
the echoes from across the room
louder than a piercing horn,
presenting me with joy
Growing pains, memories,
Remembered smiles, traumatic tears
Little things, passing words,
Pictures drawn, whispered prayers
When we were small, small things were large
Dialogue, more than chance
Clung like skin to reality
Meaning more than clarity
Fleeting words, between worlds
Adult conceptions changing life
Bit by bit, piece by piece
One thought at a time, unbeknown
Time flies by on wings of hope
Momentary as the breath of clouds
Floating by on Zephyrus dreams
Darkly through the pain of growth
Creaking bones, chilling thoughts
Callous deeds, selfish plans
Regrets remain behind for life
There is no cure for pain-filled pasts
Self-inflicted on our friends
Family accepting even so
In spite of actions, often low
Justice fails our innocence
There�s no revision tolerable
That could repay the sting e�er caused
The sentence here should be but loss
Yet, He was sent to pay the fee
To perform the edict
To cover the sorrow
Deliverance from consequence
He woke in the night to a silent house
Not a sound was heard but soft breathing
He did not feel safe
Who were these people?
Where was home?
His tummy hurt, it growled softly
He wandered into the kitchen
On the table there was a plate of cookies
Made by his new Mommy
Lots of cookies�
His heart felt empty
So, he ate them all, except one
Maybe if he left one, she would not know
He wandered the silent house, searching
What was he searching for?
He felt lost
Finally he lay down in the middle of the floor
Clutching his Twinkle blankie that Becky gave him
Sucking his Tweety binky
His heart full of tears which could not fall
His heart, jailed, imprisoned by fear
He cried himself to sleep�
Another night, he woke again
His new Mommy could not stay awake
She could not see all
He wasn�t safe
He had to hide
Wandering again, he opened drawers
In his new brother�s room
Knives, lighters, money, games
His brother liked legos and Game boy
Unaware, the items ended up in his pocket
And placed under his bed
No one could find them there
Mommy had a shiny watch, very pretty
She had money on the table
He would keep it safe for her
So he picked it up and carried these things to his room
And placed them under his bed
His heart felt empty
He did not know what for
But he would try to fill the empty space
With pilfered trinkets hidden in his secret treasure
Underneath his bed
Finally, he collapsed in mid-wandering
And slept where he lay outside his Mommy�s door
Clutching his White Bear and his Twinkle blankie
Sucking on his Tweety binky�
Each night seemed an extension of the fearful day before
His soul contained an empty space
Which nothing seemed to fill
�I want my Mommy�
Echoed through his mind
Screaming, wailing, crying every night
�I want to go back�
�I want Becky�
�Leave me alone�
�Don�t touch me�
I want my other Mommy�
And my heart shattered into a million bits
Fallen on the floor, beside his
I held him to my chest as he screamed, bit, and fought
I sang love songs over his agony
We rocked, locked in an embrace of battle
As I tried to comfort the unbelievable burden
Of his grief
Until he eventually collapsed
Exhausted into sleep�
I lay on a cot out side his door as he raged
He climbed the shelves and the furniture in his room
Seeking escape from his hurt
Seeking asylum from my heart
Seeking relief from the fear
I had tried to hold him
I had tried to love him
I had tried to sing
I had tried to help
But he could not accept comfort
And he screamed
Faces glared from his mind
Loved ones walked away
Deserting him, abandoning, leaving him alone
It was going to happen again
It was just a matter of time�
And, eventually, I fell asleep
The salt drying on my face and burning my heart
While he huddled in a corner, underneath his bed
Where his stolen treasure lay
Seeking to fill the empty space
The nights were blending into days
Where did they begin and end?
When would there be a break?
I struggled to hang on to hope for him, for us, for me
But my grasp was slipping.
I could not stay awake for him as the hours slipped away
And in the early morning light
Panic flooded over my soul as I was unable to find him
Room by room, floor by floor�
Basement, garage, shed, backyard�
Finally, to spy him playing in the neighbor�s drive
Cheerful and affectionate, smiling
And my fear exploded
I could not keep him safe
I could not see all
He would not let me fill his soul
And as he hid from me
I became convinced that I could not help him alone
Maybe not at all�
I made the call to the therapist
We found a bed
And I left him all alone just like all those before me
Just like he knew I would
Just like he told me so
Behind locked doors, with strangers and pills�
My heart shattered, another time
Into millions of broken bits
As, blinded by my tears, I drove away
He was only four years old�
Luscious hills lay scattered with mounds of melted minds
Fallen from their cages and flowering, free form
Where casting off life�s prison, boundaries disappear
Pulsing power plunging forth into the great beyond
Silent watchers witness in wonder at the sight
Impatiently, with awe filled fascination
Enviously waiting and struggling for breath
Jealous eyes engage, beginning salivation
Savage scenes o�erwhelm the subtle slippered stalker
As aromatic message wafts woven with wind
Temperatures have risen to great intensity
Cavalierly causing emissions to extend
Rumbling rivers roil imperceptible to view
Vortex� eddies churning, with every passing sniff
Desire streams unrestrained, an agony of bliss
Ecstasy takes over, bestowing hunger�s kiss.
When we were young, so long ago, and days were bright and gay
When sunbeams crowned our golden heads, and sorrows flew away
When angels seemed to whistle tunes, blowing in the breezes
When grown-ups stopped to catch a glimpse, wishing they could be us
We unaware, of their staring, simply played our hearts out
Blissful in our ignorance, we lay beneath the glee spout
Where joy seemed inexhaustible, and happiness was free
When the whole purpose of our lives, was simply just to be
In the beginning there was beauty
Soft melodies drifting over breath
Glistening eddies rippling with emotion
Scented views banishing regret
Beams of light borne by angelic envoys
Held in feathered grasp, a treasured force
Bubbling joy riding over wavelets
Quiescent in the path of river�s course
Where peace reigning supreme o�er worlds, sublime
Showed no hesitation on its face
And glorious visions covered passion�s chance
For sorrow had no bed within this place
When humankind stepped to the wishing well
Thinking we could improve on Heaven
Began instead a hypnotizing spell
Fixed upon providing us a lesson
Loveliness has given way to dark
Seeking refuge far behind the scene
Hidden safely from marauding foes
Only to be found within our dreams
In the still of the night, when the crickets sing of death
The final doze for troubled times, a smothering last breath
I can drift away in solitude, and pray
In the quietness of dark, when raised voices bow to snores
The exhaustion of my spirit, o�erwhelms my every pore
I can float on sorrows� waterway, and cry
In reflections of the moon, when the world has gone to sleep
The luminescent cleansing glow brings peace for me to keep
I can close the pages, on a painful day
In the privacy of dusk, when attaining peaceful rest
The heavenly starlight of God�s touch lets me know I�m blessed
I can stop my worry, trusting him to pay
The price of my forgiveness�
Under dark skies, the fields echo
with ringing screams of laughter
carried on the wind
Bare feet race swiftly
over tufted clumps of grass,
itchy soft, brushing �gainst lithe legs
Cloudless skies hang above
soft silken heads, umbrella-like
protecting them from fear
Silent wings brush dreamy eyes,
catching at the edges of their gaze,
a taunting view
Flashes glow faint, then brighter
as fairy dust flies past
their outstretched grasp, to freedom
Giggling, an angel stops,
seemingly to rest patiently, mistakenly
to be perceived inert
The flashy sprite may land, oblivious,
only to be caught, captive,
within the grip of tiny hands
Memories of yesteryear call from afar
drawing me back into paths of time
which traveled then, I thought were put behind me,
yet, find my footsteps voyaging again.
To pretty days when youth still bloomed upon
my lips, and dreams were growing wild, unpruned,
when knowledge had, not yet, had time to dim
the unrestrained display of innocence.
To afternoons filled with a future�s goal
to simply run and play until the night,
when falling down, at last, upon the green
could find no better place to lie and rest.
And laughter was the only sound I�d hear
come ringing in the wind to other souls,
announcing the next days� itinerary
scheduling a life in fun and sport.
When weeks would pass without a fleeting thought
of growing up, one day, and finding life
had changed to an abraded parking lot
of tiredness, exhausting happiness.
When months would become years, and I was grown,
mature and full of conscientiousness,
forgetting how to take the time to play,
and saddled by a servitude to stress.
I often see my children looking on
the lack of beaming shown upon my face
and wondering, how was it possible,
that I could ever, truly, have been fresh?
I listened to the sighing of the wind
Following the path of least resistance
Bursting at the seams with resignation
Regarding debts accrued, still yet unpaid
Apparent gracefulness belied the truth
That all is never calm as it may seem
For underneath the sweetly simple breath
Blew corridors through angry rushing streams
And buffeted by storms throughout the night
Ostensibly defeated at the dawn
The power of her whispers lay in shreds
Remaining tatters whimpering alone
However, as the sun refilled her soul
With gleaming waves of verve upon her wings
Ascending to the challenge born anew
Echoing, once more, I heard her sing
Lost and Found�
Have you ever been lost?
Who pays the price?
What is your cost?
Where is the key?
Once I was lost,
a dark distant place
where evil resides
longing for grace
I struggled with my paltry power
to escape this Hellish state
boundless in it's cruel intent
excluding all benevolence
Each day I woke,
within my heart...
My spirit lay dead to the world
and fear controlled my universe
I hid behind my lies...
Streams of tears fell down my face
flooding helpless tortured ground
though screaming filled my feeble place
the silent anguish made no sound
I never prayed to God, for I was angry
My life a mess, I blamed him for my grief
He sent me tests, to give me strength to measure
my fickle unreliability
I thought that I had everything, under my control
I needed no one
and, so claimed my soul,
as mine alone
Have you ever been lost?
Who pays the price?
What is your cost?
Where is the key?
I lost myself,
buried far within
a deep dark lonely place of my creation
where a smile never crossed my face
and sadness overwhelmed my fine sensations
One day a strange and kindly man
approached me, asking
Do you ever pray?
No, I'm living, day to day
traveling the path of my design.
When this gentle man had left my trail
I began to ask myself, inside,
Where is the meaning of my life to live?
Why should I remain and not be dead?
and gratefully, though with trepidation,
I decided I would bow my head
My life began to change each passing day
the light began to glow within my heart
sinking roots deep into my being
my mind, and soul had found another start
Embedded in the darkest secret caverns
his light began illuminating me
and handing over reins to my commander
I began my walk with heaven's king
I have been found...
There is no cost...
I pay no price...
He is the key...
When the day is gone and the night has come
When the light has fled to another home
I can sit and dream and can ruminate
On the tasks achieved and on errors made
As the moonlight glows and the starlight shines
When the soft wind blows in the dead of night
I can fly away on the wings of sleep
To a distant land where the angels weep
Healing tears of love that will cleanse my hurt
And replace my cries with a song of birth
Of the dove of peace sitting on his throne
Clearing all my sins as though never done
Two planks of wood
Two planks of wood scarred and hideous
Tainted with my past, are my only hope
Two planks of wood, which were pierced in blood
Held my deception, hidden from no one
Two planks of wood purchased with his pain
Specified by love given, undeserved
Two planks of wood stood alone in me
Built within my hear, yet I did not see
Two planks of wood trampled underfoot
I have spit upon, insignificant
Two planks of wood are my only hope
When I realized, I knelt wholly broke
Two planks of wood should have been my fate
But he paid the price, and he took my place
Two planks of wood lay fore�er engraved
Deep within my soul, and received thru grace
July 14, 2004
A good weekend...
The past few days have been busy, but have gone pretty well. A combination of things have been going on. David has begun his new job, Dalton is doing Special Olympics Golf, We attended an Indians baseball game in the rain, We floated down a river for 3 and a half miles, and I am weaning myself off my antidepressant.
Friday, we were to attend a baseball game with Gene's office. This was a company outing he decided to sponsor as the result of them passing a audit with flying colors. It rained! We did stay for 5 innings before it really started to pour, then went ahead and left. The experience was wet, but fun. David took his friend, David with us. I am not certain what the issue was, but my David was a bit irritable friday afternoon and especially, on the trip home. I think maybe too much activity??? Even good stress can be bad.
Saturday, David has his first day on the job. He worked almost two hours, pretty much an orientation session with his boss. He was still employed when he got off, so we figured it went well. :o)
We had planned to go on a tubing trip at Turkey Run State Park, but the weather forcast was showing severe thunderstorms over the river we planned to float on... so we delayed the trip. Unfortunately, this meant David was a bit upset over the change in plans, but in the midst of the 'whining' it was (Nice?) to hear him saying things like "I really wanted to go tubing". It is good to see motivation returning to his life. I haven't seen him motivated about much of anything in so long...
Dalton fell asleep for a nap in the early afternoon, and did one of his "Coma" sleeping jags! He slept until 8pm! there was no waking him. This kind of sleeping period generally is the warning of a mood shift onset... We have learned to "Let sleeping dogs lie..." Soooooo, it was a good thing that we did not do the float trip.
David took a short rest as well, since he was up early. I am trying to help him to see the importance of consistent sleep on his mood and well-being. From what we have seen, he does best on days when he gets a combined total of about 14 hours of sleep a day. I have learned that people with a mental illness are very sensitive to changes in sleep patterns. They need enough sleep, not too much. There seems to be a range that they need to fall within for stability, and the range is not very wide for the most part. David needs a consistent 14 hour average, daily. Dalton seems to range more withing a period of a week, 5-7 days. If Dalton sleeps less a few days, he makes up for it by sleeping most of a day, in an additional 6-10 hour "Nap". I think the difference for their response to sleep may be inherant in their diagnostic differences, but they both must get enough ZZZZZZZ's.
Sunday went wonderfully! We went to church. Donna, Dalton's volunteer shadow was back from vacation, after the past month, so Dalton was ecstatic about having her back during Sunday school. David was able to remember what his youth group spoke of. **This means he stayed awake! LOL**
We decided to risk the storms, anyway, and go tubing. We drove through lightning, rain, and thunder to get to the river! However, we were extremely lucky, and were not rained on the entire trip. It was a lot of fun. Both boys enjoyed themselves, and we took Sparky, one of our dogs. He sat on Gene's chest or mine most of the trip.
The past couple days, Mon and Tues have been busy. Dalton is doing Special Olympics Golf this week, and I'm picking up two additional kids to get them to and from. It was very hot and humid monday... downright horrid. However, Dalton had a wonderful time. They are learning skills training. Putting, chipping, and driving. Dalton really is enjoying the driving.
Yesterday, David had his first real shift at work. Monday evening he had been telling us that he was very nervous. It went wonderfully. David told me he was a cashier most of the five hours he was there, he served over 70 customers, and was only 3 cents off on his register. He also told me that he has been having an easier time remembering things he needs to, and memorizing! I have made sure to point our to him, that this is evidence that his medication is working well. This is one of the sticky points he gets into when he is not thinking clearly. So when things are good, I make an effort to remind him of obvious things that prove the efficasy of his meds. I hope that this will accumulate and prevent the liklihood of a future relapse caused by him ever deciding to go off his meds.
I took Dalton to see Spy Kids 2 after getting David to work, then we were home for lunch and off to golf. He had another great time, and got a hole in one on putting! He also did much better on the chipping, only missed the ball once.
After we dropped off the other kids and picked David up from work, we met David's supervisor. She told me that he is doing very well, and seemed very nice. I took David in for his weeky bloodwork, stopped to see Gene at work, and came home.
I think the stress of having a good day at work resulted in a pretty good level of irritability for David, last night. However he managed to keep a lid on it with redirection. Dalton was being irritable as well. He is not toiletting well, all in his pants (BM), and this is reflecting in his mood. He was "Icky" twice yestereday.
Overall, I am very grateful for my live and how my family is doing. We are busy, life is controlled chaos, but the majority of things are positive chaos, instead of negative. Life is good, and God is great. There is always a light, no matter how dim, if only we seek to find it.
There is a line, far off into the distance
A separation which I strive to reach
The only site extant to reach connection
Hazy in the distance from my beach
This is the place where heaven meets the water
And skyline blends into the earth, below
Where angels mind the universe beneath them
The birthplace where his heav�nly breezes blow
Gracious, in his aspect shining radiant
Waves of purity have blazed a trail
A corridor of grace, to guide my footsteps
Where, bathing in his love,
I cannot fail
It was just yesterday when I lay back
on a bed of dreams, floating down the river
Gazing into heavens painted blue, washed in white,
and lightly marked with shades of gray
Blinding light shone brightly on my thoughts,
blazing ardor�s purifying heat banishing the night
Rapture�s breath delivered here, from paradise,
caressed leafy velvet greenery with whispers
Traveling on streams of happy tears,
I closed my eyes and breathed a sigh of stillness
Serenaded by the sound of flowers birth,
I swear that I could hear the gardens grow
A feathered envoy, come to my utopia,
sang of times when bliss has conquered pain
And drifting past the shattered scars of sanity,
rejuvenating rays delivered strength
Filling up the reservoirs within my soul,
with faith, believing I can love again
Have you ever wondered�
Where the light was born?
Where a smile begins?
What a child has dreamt?
Have you ever pondered�
Why we were created?
Why some things are hated?
Why we were given tears?
Have you ever grieved for�
Lack of understanding?
Failing to be gracious?
Loss of our compassion?
Have you any hope that�
Someday we�ll be worthy?
Somewhere we�ll find solace,
and be safe from fear?
Have you found more questions?
God knows all the answers
He is waiting, patient
For us to come to him
and he'll share
She journeyed down into the room, and found a quiet space
Reclining on the carpet, with wonder on her face
She gazed into a universe where visions can come true
Illuminated by a thousand brilliant lighted jewels
Reflected in the tinsel, she glimpsed her hopes and dreams
Glowing purely clarified, wishes in the beams
Tiny toys were strewn throughout the place she lay enthralled
Choo-choo trains and shiny things, held her gaze beguiled
Candy canes were perched upon sweetly fragrant branches
And underneath the chimney, a wondrous enchantment
A family lay, there portrayed, with precious meaning true
With animals, and stables, and a baby lay there too
And gentlemen were gathered �round upon that special day
Staring at the family surrounded by the hay
Her mommy told her who they were, and how they came to be
Sitting in an honored place for all the world to see
Almost unbelievable, a joyous happy story
The reason for this holiday, a tiny baby boy
His mommy and his daddy had traveled through the night
And couldn�t find a place to stay �till someone saw their plight
For he was still inside him mom, waiting to be born
�cause God told us that he would come upon a certain morn
A dazzling star shone in the sky, lighting up the heavens
And angels came, singing songs to wish the baby welcome
Some shepherds stood out in the fields, watching o�er their sheep
And listened to the caroling, when normally they�d sleep
And when they heard the message, they knew they had to go
To see if what they heard was true, so went, with sheep in tow
Following a prophecy, there came a caravan
Trav�lers coming from afar to see the son of man
Laying in a stable, among the animals
To give him gifts of reverence, displaying them with gold
And there, within the stable, wrapped in swaddling cloths
Placed upon a manger softened with some straw
A baby lay there, radiant, shining in the night
Observed in adoration, they knew this was the �Christ�
July 09, 2004
David got a job!
I mentioned that this past weekend, David and his friend David S. had gone around town applying for jobs. I think they applied over a dozen places before they were done. This kind of motivation and initiative is certainly a sign of how well his medication is working. This is the kind of behavior I have not seen from him in years! David made certain to deliver the remaining applications hehad completed tuesday.
Yesterday morning, he got a call from the Dollar Tree, a local "everything is a dollar" kind of store for an interview at 11am. He went in and was hired on the spot! He is to go in for a couple hours training Saturday, and already has a 17 hour schedule for next week! This is a wonderful thing.
I think this may be an ideal kind of job for him. It is a very small store, with few employees. It is not very intellectually challenging, and should be relatively stress free. I am so proud of him. The fact that he initiated the process, applied, followed through and got the job on his own is a miracle.
There is a blessing under every rock, we just need to keep turning them over!
David is still continuing to have a daily time of irritability that can easily fall into paranoid, delusional ideations... since this weekend, but he is coming out of it, each time, sooner than the time before. I think the stress of the weekend is still telling, but things are working to level out.
Unfortunately, we are still working on the self-awareness thing. When he gets upset, David still falls into the trap of refusing to take his medication, as "It is not doing anything, so why should I take it?" We did this conversation again yesterday. :o(
When David is calm and clear, he understands, but in the heat of his delusional thinking, I have to force the issue of medication, as a requirement of living at home. This and physical aggression are the two ABSOLUTE rules that Mom must have her way on, period. No negotiation allowed... I hate having to play the heavy.
The call soft and low whispers in the night
A frequent warble velvet on the breeze
Hidden in plain sight, though oft� unseen
Silently, he sits, perched upon a dream
Luminous, he flies on wings of brilliance
Resplendent, radiance glows in the heav�ns
And covers all our souls with tenderness
Salvation is delivered as we breathe
Songs of peace fall from his feathered fingers
Itinerant, they land in open hearts
Down into our cities filled with darkness
Causing voiceless anguish to depart
Floating high on currents of the faithful
Acquiring vigor from their lifted prayers
Hopefulness� expression falls like droplets
Cascading o�er the universe with light
Hardly has a word been heard, e�er spoken
But these, from heav�n inspired:
�This is my son�
It is night
Silence rules the room
The magic hour when every sound is magnified
Echoing, reverberating, ringing, clinging to my skin
and I can identify each heartbeat in my home
Breathing breathy snores, whisper
softly in one room, louder in another
Snuffles, sniffles, snorting
proclaiming ownership of a portion of my soul,
a piece of my heart, and, a plot of my time
This is the point when I can sit
and bathe within the peace
warm, imbued with fragrance of elapsed serenity
Love�s perfume is raining, falling gently on my ears
Heard in every shuffle of the sheets
There is no explanation for the happiness I feel
in these times of fleeting fancy, that I find when others sleep
For here I dream, wide awake, and pray, with open eyes
talking to myself, and answering in silence
soft, between my ears
and the clarity I find within responses I create
exceeds the wisdom, anywhere, contained in daylight�s gates
This is a thrilling spell, an enchanted, charming dream
when darkness soothes my eyes and leads my heart to sing
hymns of gratitude for the gifts my family are
Indebted, here, to heaven�s grace
for the chance to have this place
to live this time, to feel this love
to sit this night, and hear them move
This is the magic hour
It is night�
The rungs of time hover overhead
Tempting, in their propinquity
Taunting, with their imagery
Guiding gaze� objective
Toward an undiscovered path
Hanging at the boundary of his grasp
Forcing him to reach beyond his ease
To step outside his comfort place
Into the world beyond
Toward unfamiliar treasures
Shining in the sun, they catch his eye
Urging him to enter into dreams
Of Herculean bravery
Daring to intrepidly
Advance into a heavenly