2.5 Months
My son has now been with me for 2.5 months. It's
certainly been a bit of a rollercoaster ride. I can pronounce his medications
now and even spell schizophrenia without using spell check. Still trying to use
LEAP. A lot harder than I thought when being met with constant resistance.
Still not as prepared as I thought to deal with the day to day. Still
struggling with drug/alcohol use. Over all we are still doing better than he
was 2 months ago although the down times seem harder to deal with when I have
seen what the up times can be like.
Insight... Can't say we have gained a lot of ground
there. He just can't see what I see. It's hard to look at yourself objectively.
During the calm moments we are able to have conversations where he seems to
listen to my input and ideas but I don't know how much of it is real or if he's
just agreeing with me to shut me up. Sounds harsh but how often have we done
that? We know we can't change the opinion of the person we are talking to so we
just pretend to agree or accept their logic to end the conversation.
After a couple of bad weeks my son and I had what I hope
will be a turning point conversation last night. My son believes he can astral
plane. Per Wikipedia astral projection is an interpretation of out of body
experience that assumes the existence of an astral body separate from the
physical body and capable of traveling outside it. I find this topic a little
taxing to deal with mostly because I don't believe that he is doing it but he
does. Also it's hard for him to accept my input because if I can mentally do
some of these things then it takes away from how special he is. It's a
difficult game of asking questions to try and find out exactly what it is that
he is doing. He knows what he is doing and has put a name to it so he doesn't
want me tearing that believe apart. Patiently giving him the time to find the
words and describe what he is doing helps me to compare to my own experiences.
What he calls astral projection I call using my imagination. He seemed pretty
surprised last night when I explained that I understood and that I myself can
imagine my body doing things outside of my physical body. I can picture my
hands touching things like my pillow and even imagine what it feels like. I can
picture my body walking down the hall. If I wanted to I could picture my body
floating through space based on what I think space looks like but how real is
that if I don't know what space looks like? I haven't done the research so it's
only what my mind has imagined it to look like. He thinks he has psychic
abilities and can tell the future. He was able to prove this to me about 3
weeks ago. At the moment it's only a couple of seconds into the future but if
he keeps practicing it will be further. Again more questions. What was
happening? Well he was in the car with a friend and talking to the mother while
she was driving. He avoided them getting into an accident because he stopped
talking/distracting here just in time. I patiently explained that yes to a
certain degree this is foresight as based on what was physically happening he
was able to use his cognitive thinking and realize that if he kept
talking/distracting her than they may have gotten into an accident. On a previous occasion he knew he was going to
bang his head yet banged it anyways. I explained that we all go through this.
Unfortunately gravity and momentum come into play and we can't always stop our
forward movements. To him it's his psychic abilities and are special to him. I
google'd at what age do they teach about gravity in school. It seems they start
talking about and understanding it between the ages of 9 and 13. Despite his
believes that he is all knowing he knows little about science. I've had to explain to him what daydreaming is
because he thinks he again is using a special power that allows him to dream
while he is awake. So many things that we do naturally and without thought are
difficult for him to reconcile as it takes so much effort for him to put them
into motion. I want so much for him to see what I see but to do that he would
have to acknowledge that all these things are not special after all. How
disappointing to have to acknowledge that. We all want someone, anyone, to
acknowledge that what we are doing is special. That we have gone above and beyond.
I myself would like someone, anyone, to pat me on the back and tell me what a
great job I'm doing as to me what I'm doing day to day to keep my family
together and healthy is a struggle. I needed this little reminder in writing
this that I've been forgetting to tell my son how proud I am of him and that he
is special.
I sometimes forget about his paranoia as it's not so
obvious to see. His nurse came to see him after I made a phone call last week
as I was fearing the worst. He's having a tough time dealing with the fact that
everyone seems to be against him. He can't see what we see, that his own
actions or inability to rationally explain them is causing his workers to point
out how badly he is coping with the decisions he is making, so in his mind it's
me doing it. He thinks I've been calling them all behind his back and putting
him down. In this last instance I had to calmly explain that all of the things
that they are talking to him about is mostly based on his own actions and not
mine. Most of them have been on vacation and I have not had the occasion to
speak to them since things have started to go downhill. No one wants to take
responsibility for their own actions and we all justify that we act a certain
way because of what others are doing.
This takes me into the issues I'm having regarding
discipline. We had a pretty good run of it for about a month. Everyone was
saying how good he was doing. You could see the difference. He was going out on
his bike at least once a day, eating good, sleeping good. We were looking into
getting help with getting his GED (high school equivalent). Minimal alcohol and drugs. We were on the
right track. Then things started to go downhill again. I found out that he
wasn't taking his medications. I found a week supply of his Clozapine and 5
days worth of his Venlaxafine and Abilify. Not taking his Clozapine was
interfering with his sleep patterns and increasing his positive symptoms. I
even believed one of his delusions that his friend's dad was lining up a job
for him. Only to find out days later there is no job. His doctor agreed to take
him off the Venlaxafine if he would agree to continue with the Clozapine. Said
yes but didn't comply. I forgot to give him his Abilify one day and since in
his eyes he coped he discontinued that as well. After doing more research on
drug withdrawal symptoms I was able to convince him to go back on 100 mg of
Clozapine to ward of the insomnia. He's supposed to be on 300 mg. Still taking
Lithium as prescribed as he knows he needs it to keep up his white blood cell
count. Now add alcohol and marijuana or hash. Without the Clozapine keeping him
fairly stable the alcohol and drugs had a big affect on his positive symptoms.
Laughing with himself, practicing his chi (mom can you feel this?), trying his
telekinesis, back to interacting with my hamsters. He's trying to 'train' them.
Studying out the window and won't do his laundry. While all this is going on
I'm trying to implement some boundaries regarding the number of cigarettes he
is smoking and how to talk to me with respect. Because of the choices he was
making he had little to no control over his emotional/verbal outbursts. Mom was
the culprit and the scapegoat. After a
week of this I was getting really concerned. The verbal abuse was pretty bad,
to the point of threatened physical violence if he didn't get what he wanted.
I've tried to remind myself of the upside which is that 3 months ago he
wouldn't have even remembered the outbursts. At least now he knew what he was
saying, just felt justified in saying it because I was being unreasonable. So
how do you discipline someone who doesn't want to see the other person's
perspective? Try to remember he's cognitively a lot younger than 19. I stuck
with it. I disconnected him from my internet. I kept his cigarettes out of the
home and let him suffer a bit without any (small periods less than an hour). I
refused to make him breakfast. On our up streak he had learned how to make an
omelet so he was capable of doing this. I didn't do his laundry for him. Of
course all of this was adding to his opinion that I was being unreasonable. For
the first week I didn't help as I was letting him pull me into stupid
arguments. It was like he was pushing for the arguments so that he would have a
release for his emotions. I pulled back and stopped allowing him to piss me
off. I needed to stay calm as me getting upset was not helping the situation. I
made the mistake of buying him alcohol to celebrate Canada Day weekend which
was the start of that bad week. I made it clear that was the last time I will
buy him alcohol. As for the drugs. He gets them at his friend's place. I've
made it clear to him and his friend that if he allows my son access to his
drugs he has to keep him there until the affects wear off. After a couple of
days of no alcohol and me standing firm and staying calm, my son started to
calm down. When he asked me when he would get his internet back. I replied
"For every day that you were verbally abusive there will be no
internet." I've been keeping a journal of his progress/symptoms so I
pulled it out and counted the days. 8 days. He got it back yesterday. If he
becomes verbally abusive again he will lose it again. I previously mentioned
that his nurse came by. My son didn't like anything his nurse had to say. When
he left my son lost it a bit and stated he wanted a new nurse. Why? Well his
nurse pointed out to him that the choices he was making, the ones he couldn't justify,
regarding drugs and alcohol and verbally abusing mom where causing negative
results. That he was not entitled to anything. That anything mom provided him
with was through her good graces and that she could have him removed from the
home for the abuse he was giving her... Needless to say this didn't go over
well with my son. I think he needed to hear this from someone else. As
irritated as he was I noticed that later that day he actually cleaned up some
of his mess since it was pointed out to him that he does nothing to help mom.
As for his anxiety. It comes up every now and again after
he's used a drug or when I'm being hard on him. Even if it's something he wants
to do like our last appointment with his occupational therapists, who he likes,
he still shows signs of being anxious. Same thing with delusions of being able
to move back with his dad. These come up when I'm disciplining him.
So now here I am wondering how to get us back on track.
To some degree I guess I'm back to where I was a couple of months ago with the
big difference being that he is more coherent and hopefully it won't take me as
long to get him back to where he was before things started falling apart again.
I've been waiting for the next break that his workers and doctor thinks will
happen. I thought so too but so far it hasn't happened. I'm hoping it doesn't
as I've read these breaks cause brain damage. The family member he used to live
with is afraid it might already be happening. I'm not so sure. I'm not as
afraid of the consequences of his schizophrenia as she is. He may always have
some positive symptoms so to let it control how I'm disciplining him is in my
opinion illogical. To me that would be giving up. We all want him to one day
have his own place and hold down a job, possibly have a girlfriend. None of
these things will happen if he's not taught boundaries. Can't be telling your
boss where to go or be calling your girlfriend names.
Remember the turning point conversation I'm hoping we had
the other night? For the first time that I can remember my son actually
questioned what a symptom was. In his eyes schizophrenia is paranoia and if he
can control the paranoia then he has his schizophrenia under control. I forget
what his definition of symptom was but I explained it using myself. I'm
menopausal and the symptoms of that are bloating, irregular cycles and irritability.
I take birth control with estrogen in it as my body is not producing what it
needs. A symptom is how something shows itself. I can only discuss
schizophrenia with him when he is open to the conversation. I explained that
paranoia is one of the symptoms of schizophrenia along with hallucinations,
delusions, voices and lack of hygiene. I think his voices are his subconscious
talking to him. Mine doesn't always tell me what I want to hear. I'm hoping
this will help him to start questioning some of his delusions. It's got to be
frustrating for him when I'm telling him that his dad is not going to be
calling me to make arrangements for him to move back with him when he's so sure
of it that he is waiting for that phone call. I gently explained this as wishful
thinking more than reality. To a certain extent we are living in an age where
more people are believing that so many things can be overcome and manifested by
"mind over matter", by believing in it strongly enough.
The following morning I was doing research on grey and
white matter in the brain. My son actually showed an interest in what I was
looking at. Usually when he sees mental illness stuff on my screen he walks
away. In part one of my story I referenced pictures at
www.treatmentadvocacycenter.org showing the difference in two brains. One with
altered insight and one with preserved insight. I'm not a scientist so my
understanding of this is limited. White matter seems to be tissue while grey
matter is neurons or nerve cells. Either way people with altered insight do not
have a lot of this grey/white matter. I was looking into symptoms of
Alzheimer's and Dementia and found that the same is the case here. I know that there are a lot of theories on
how to treat mental illness'. A side from the medications there is the holistic
approach which includes alternative forms of medicine to target all aspects of
the person's needs including psychological, physical and social. I certainly
agree that all these things need to be taken into consideration I just can't
ignore what science is showing me. I know that we have limited knowledge on the
brain and hopefully that will change as we need a better understanding of what
is going on in there. I've read research on some theories that schizophrenia is in fact an intense transpersonal or
spiritual experience or awakening and not a mental illness. I found an article
the other day where they state that they have been seeing an increase in grey
matter in areas of the brain associated with social influence. That either as a
result of this we as a society are going against common social influences or
because we are going against the norm we are producing more grey matter. What
came first the chicken or the egg? It's being suggested that meditation
practices can change someone's grey matter. For me this contradicts the
spiritual awakening theory as wouldn't there be more grey matter instead of
less?
Back to my son's interest in all this. I showed him the
pictures and gave him my limited explanation on grey matter. When my son first
started showing obvious symptoms he had an experience where he was
concentrating so hard that he felt or heard something crack in his head. To
this day, two years later, he can still remember how painful it was. He thinks
he cracked his skull from all the pressure (power) or at the very least burst
some blood vessels. I have read other accounts of people with schizophrenia
having the same type of experience. I wonder if this affect could be the
disengagement of the grey matter? I would imagine that would be a painful
experience. I don't know if anyone has done a brain scan on someone before and
after psychosis to compare them. Remember this is all just my opinions.
I do believe in the approach of treating mental illness
with vitamins and diet along with medications. Still when your loved one is
barely eating it's not so easy to get supplements in them either. From day to
day I don't know if my son will take a vitamin. Some days he refuses stating he
doesn't need it. The next day I ask and he says sure and takes it. From what I
have seen the more stable I can get him on medications then the more likely I
will be able to start getting him on the right track nutritionally. I've changed my view point somewhat in regard
to empathizing with me son about taking pills he does not think he needs. I do
understand his view point but now I can honestly tell him, based on what I have
learned/seen in the last couple of months, that if I was in his situation and
someone was telling me that a pill would help me to see the same reality as my
loved ones. I think I would take it. Yes the side effects of anti-psychotics
are dangerous, so is me being on birth control at my age and smoking. Yet I
take them because the benefits out way the risks. I think that I'm making
relatively educated choices whereas my son is thinking only of his ability to
be creative. The side effects in my opinion are just reasons he can site that
we will listen to.
So our journey continues. Now that things are relatively
calm I can get back to trying to get my son back on track. Once I got myself
calm I began to realize that because things were so tense I was not remembering
to show him love. I was not telling him how good he was doing as all the
negative things that were happening was getting in the way. Back to randomly
going into his room just to ask him what game he's playing and giving him a
kiss on his head.
Mom
BarbieBF
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