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Purposed and at Peace�
I�ve found the answer!
I understand.
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
of emotion...
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
of possibility...
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
of tranquility...
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
with grief...
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,
to love...
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
created me...
10/12/04
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!
My Prayer...
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.
Frustration
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
Quiet Time�
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...
Hidden Rose
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
My prayer...
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.
Amen
Grace�
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
Given time�
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 ... !
10/07/04
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.
Very sad.
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10/08/04
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.
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10/08/04
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?
Deb,
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.
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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.
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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.
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10/09/04
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...
Most importantly:
Be willing to make the necessary changes to proactively prevent dangerous situations from happening once you know that they are possible or likely!
09/27/04
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.
09/28/04
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.
10/03/04
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.
10/04/04
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.
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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...
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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.
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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.
10/06/04
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.
10/07/04
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!