9) 3.5 Months
Ghoster Coaster. It's a small wooden roller coaster at Canada's Wonderland in Ontario, Canada. Not as scary as the bigger ones. Fun for the whole family! That is the one I would say we are currently on. It's still a roller coaster but not nearly as many ups and down as the one we were on three weeks ago.
The last two weeks have been pretty good actually. Knock on wood. I've been doing that a lot lately. I should probably be carrying around a piece of wood. Can you say apophenia... If you read my previous chapter Intellect vs. Cognition, it's a component of positive schizotypy and it's a natural part of human nature that involves a general human propensity to see meaningful patterns when they don't really exist. If I keep knocking on wood then I won't jinx the good stuff by talking about it. Sounds a little lame when typed out like that...
My son's nurse was here a couple of days ago. He had heard from the other members of my son's team how well he was doing. He asked both myself and my son what we attributed the changes to. Three weeks ago we were on the big scary roller coaster except we seemed to have been stuck at the top of it or better yet right at the point where you start to head back down and you can't help but scream. Ever heard of Murphy's Law? "Anything that can go wrong will go wrong." It felt like we were living it. What little bit of progress we had made went completely out the window. It didn't just walk but ran out that window taking studying, respect and rules with it. Leaving behind anxiety, depression, swearing and an overall negative attitude. Everything that I was asking him to do was being turned into an argument. If I refused to participate in an argument then I was being accused of being ignorant and rude for ignoring him. My living room was constantly a mess and my couch was his bed. Had to take away his internet to get him in the shower. A couple of times I just had to leave, walk away, as I was on the verge of losing it. If I had a button to be pushed he was pushing it and some of them he was doing on purpose. Like swearing. The more I told him how much I hated it the more he did it. It had gotten to the point where in my presence almost every sentence contained swear words. Then he discovered slamming doors.
So what caused the changes? My son had a hard time answering this question when his nurse asked him. All he could say was that had he decided he wanted to study for his GED. He didn't really want to answer what caused the change in attitude. In fact the word attitude didn't really sit well with him because in his mind there was only bad attitude. I had to explain to him that attitude can mean good things too, that we can have a good attitude as well as a bad attitude. It's how we approach things. My answer would be different but I can only guess at what actually caused the change. I think it started with an appointment with his occupational therapist. He didn't like the fact that she seemed to be on my side and not on his. She's his therapist after all. She nicely pointed out to him that if anyone was to tell her that their child was acting the way that he was that she would tell that child that it had to stop. There was no justification for his behaviour. At one point I was asked by my son to leave the room. I left and let them talk alone. I guess they discussed defiance and the fact that it was his own defiance that was getting in the way of his own progress and causing him to lose in the end. Pissing me off had become the main goal of the day. This was obvious with the swearing. I went out one night and left my son and husband at home. Apparently he hardly swore the whole night that is until I came home. When this was pointed out to him he had little choice but to acknowledge the motivation behind it. Same thing with slamming doors. I took away his keys. If he wanted to leave slamming the door he just may not get back in right away. I'd had enough. I also put together some visual aids for him that his nurse and occupational therapist thought was a great idea. My son disagrees that they make a difference. One was a list of compliments stating that I am proud and that he is strong, beautiful, smart, worth fighting for and that I love him. Second was a list of rules which are doing his homework Monday to Friday by 2pm, cleaning up his messes, trying not to swear, no slamming doors, sleeping in his own bed, rolling smokes in his own room and a reminder that other people have feelings that get hurt too. When asked if any of these rules were unreasonable he said no. Third I did up a list of all the men's shelters in our area with their telephone numbers. I let him know that if things keep going the way they are then he may have to call one of them and make arrangements to go there for a couple of days. All three of these are on his bedroom wall so that he can see them at all times. A copy of the rules is also on my coffee table.
Whether it was one of these things or all of them hitting home at once, I don't know, but his attitude changed almost overnight. As much as he is always telling me that I don't need to remind him of things I know that is not necessarily accurate. He's cognition is still not that of a 19 year old. I think the visual reminders do make a difference. I rarely hear him swear anymore and he hasn't slammed a door since the day I took away his keys. Blame me, call me unreasonable but I wasn't the one losing the internet. Perhaps if computers and the internet had been as common when I was a kid my mom would have had a lot better leverage then she did. This generation thrives on it. Take away their life line and you just might get some results. Mom wasn't being his servant anymore. I have no problem with making my son coffee in the mornings but not if my rules and feelings are being trampled on. Be prepared for the temper tantrums. He may not have laid on the floor kicking and screaming. Instead he stomped around sighing and on occasion tried to have a calm and reasonable conversation with me until I wouldn't agree to his version of reasonable and he would stomp down to his bedroom yet again sometimes slamming the door. Reminding myself that this 19 year old body housed a cognitively 10-12 year old brain helped but this behaviour could not continue. This 19 year old body was slamming doors so hard I think the whole building shook. Remember me saying that a couple of times I had to leave? Well once my husband and I went out for diner, alone. Did I make my son something before we left? No. There was plenty of things to eat and as my son is always telling me, he's not a child anymore. I'm pretty sure most of us have done this to our younger children. If they can't behave in a restaurant than they can't come and you got a babysitter and went out, feeling guilty the whole time of course. I can't say I felt overly guilty as the one on one time with my husband was long overdue. Another thing that was happening was that some family members were pulling back or putting up new boundaries around my son's interaction with them. His negative attitude was affecting this and it couldn't be blamed on his normal scapegoat, mom.
After about two weeks of being stuck at the top of this roller coaster, something clicked for him. He asked for his keys back saying he would try to follow the rules better and that he would willingly give me back his keys if he didn't. He changed his attitude. According to him he started meditating and changed his mood. I expanded on that and told him that by changing his mood he had in fact changed his attitude from a negative one to a positive one. He was approaching things differently and his defiance wasn't getting in the way. I think he started to realize that his defiance was serving him up nothing but negative consequences. He was the one suffering in the end. I was having a lot of problems getting him to sleep in his own bed. This was something that I needed to fix as through no fault of his own he sweats a lot while sleeping, the Clozapine does this. I had bought a mattress cover for his bed for this reason and in my opinion there was no reason for him not sleeping in it. I even asked him if there was something about his room that caused this and no. It became a part of the rules and the consequences of breaking this rule would be that he was not allowed to have his laptop in the living room. He's supposed to be in his room by 11:30 every night. I don't hold him exactly to this time as I know that time moves differently for him and it's harder for him to keep track of it.
We have not had an argument in over two weeks. Knock on wood. Does he break the rules? Yes. Like the other day he was using chewing tobacco in the living room when he knows I don't want it in my home. I calmly reminded him of the rules and he sheepishly said I know. He is learning that I will only let him push the boundaries so far. If he pushes to far, I push back. I think he's slowly realizing that I'm not being completely unreasonable. I do allow a certain amount of leeway as long as he doesn't take it to far. I guess it was about a week ago that he asked if he could not do his studying by 2 that day because he was going to the beach with his friend, that he would do it when he got back. He promised. I held him to that promise later when he tried to get out of it using all the excuses I told him I would not accept. Tired, not in the mood, in the sun all day and isn't it good that he was getting out and not being isolated. All true but a promise is a promise. He knows the consequence of not doing it is losing his internet.
What I call his studying or homework is school work that I prepare for him Monday to Friday. I try to keep it hard enough that he is learning but easy enough that he doesn't bulk at it. Not an easy task since I have to spend time google'ing and relearning what I think he should be learning so that I can teach it to him. He's doing great with math. Trying to make sure we are learning all the prerequisites to get him started on Algebra. I wasn't that great at Algebra when I was in school but I'm hoping the second time around it will be easier. The look on his face the first time I put an "A" on his math work was all the thanks I needed. A teary eyed moment for me. Language Arts, not so easy. I started with the basics. Nouns, verbs, adjectives and adverbs. I gave him the same types of questions, in different formats, day after day until he got it. Until he was able to write a sentence that included them all and knew what they were. Recently I found some literacy tests that test if the student is at a grade 9 reading level. Right now I do these with him and explain how and why I come up with the answers. I can only push him as far as his cognition will allow. I know that this will take some gentle nudging but I remind him that I do believe he is capable of doing it. I have no idea yet how I'm going to approach history, geography and science but there's still time yet as he's cognitively not ready for this yet anyways.
His insight into his schizophrenia hasn't changed. It's rarely discussed. I don't think it needs to be. Over the past 3.5 months I've had to evaluate and re-evaluate my opinions on schizophrenia or psychosis. If you read my previous chapter then I hinted to the fact that we all have certain human tendencies that border on schizotypy. My son doesn't react, act upon or think about things that the rest of aren't dealing with. He just does it on a bigger scale. Have you ever walked into a room and for just a moment out of the corner of your eye you thought you saw someone? Visual hallucination. Have you ever turned around to see who was calling your name and there was no one there? Auditory hallucination. Have you ever gotten the heebie jeebies? You feel like bugs are on you because you just saw one crawl across the wall. Tactile hallucination. Compulsive thinking about the afterlife and the supernatural. Maybe if I had done some research in my younger years I would not have spent a good portion of my life being afraid of death. As for the supernatural. I believe there is a world beyond what my eyes can see. I believe in God and ghosts and even the possibility of Fae (humanoid supernatural beings). I don't think that I will encounter any of these things in my daily life but for some the possibilities are more real or my preconceived notions of reality is not allowing me to see what is in fact real. It's a matter of perspective. Who's going to admit that after watching a scary movie they have to resist the urge to look under the bed, just in case. I don't because under my bed is stuffed full of boxes so what would fit? Hmm perhaps a ghost but I don't sleep alone and that gives me more security. I do however on occasion make sure my closet doors are closed. No one likes it when their believes are questioned. I've had some tough conversations with my son where I find myself in a bind. I can either disavow my own beliefs, pretend I don't believe in ghosts or psychic abilities, or I can open myself up to the possibilities that what he is seeing, hearing, feeling or believing in deserves more credit. What stops us from doing this? Fear. Fear that we will make it worse by playing along or agreeing. Look at your own belief system and ask yourself if someone else agreeing or disagreeing with you will change your beliefs. For most of us the answer is no, however having someone that you can talk to about your beliefs, without feeling judged, so that you can explore them in more detail is a wonderful experience. I want my son to experience this. The more open I am with him the more open he can be with me. This builds a relationship of trust instead of fear and insecurity. Currently my son is not dealing with a lot of positive symptoms so this viewpoint may be harder to keep in mind if the situation does change. No matter where he is with his symptoms, his belief system is what it is and I will always do my best to be as open, honest and understanding of it as I can be. Try to imagine having the above visual, auditory or tactile hallucinations happen to you numerous times every day. Now look at your own belief system, the beliefs you keep private because you don't want to be embarrassed by them, and perhaps this can give you some insight into your loved ones world.
Trying to have this insight into my son's world is only part of the picture. I can't take all the credit for where we are or the progress we appear to me making. He's currently being medication compliant. His psychiatrist appears to be satisfied with the 100 mg of Clozapine/Clozaril and 300 mg of Lithium that my son is agreeing to take. So am I. Over a week ago I made the decision to stop giving him his pills every night and put them in his room so that he can take of them on his own. I had no guarantee that he was taking them anyways. I would give them to him around 9 when I went to bed and in the morning I would check his dish and see if they were gone. Because I was not overreacting when he didn't take them, he stopped hiding from me the fact that he wasn't on the occasions that he didn't. Me getting upset wasn't going to make him take them, just hide them instead. He's aware of the withdrawal symptoms when he doesn't take his Lithium and he also knows he needs it for his white blood cell count. He's now beginning to recognize the withdrawal symptoms of not taking his Clozapine. His anxiety starts to get really bad and he gets cold sweats. If he misses taking it the night before I get to see him take it the next day. He tells me that he is taking it and why. He trusts me a lot more now than he did 3 months ago. He even volunteers information now, like the fact that he bought chewing tobacco (he knows how much I dislike it) because he didn't want to hide it from me and wanted to be honest about it. I know that he's not going to become responsible overnight. No child does. We teach them responsibility in small steps. Along with giving him his medications, I stopped monitoring his cigarettes. I used to give him 30 a day since I was the one buying them and I was concerned about how much he was smoking. He recently got a partial payment from disability. He can now buy his own. It didn't seem right that I would have him buy them then take them away and control them. He actually thought that was what I was going to do and wasn't giving me grief about it but I told him no they are his responsibility now. I don't know if he will have enough cigarettes or money to get him through until his next payment. If he doesn't I won't be surprised as again responsibility isn't learned overnight. If he does succeed in getting himself through then I will be pleasantly surprised.
Disability. A blessing or a crutch. I don't know yet. Once he starts getting full payments, I have made it clear that a certain amount has to come to me (and my husband) for supporting him. At least his medications are covered now and we can look into getting him new eyeglasses. Over the last 3 months he has cost us a lot out of pocket. I just remembered that I'm going to have to contact his psychiatrist and get him to do extra paperwork as Clozapine isn't covered normally under disability. I guess we have to prove that it is necessary. I don't remember how many different medications he has been on but there's been quite a few. So yes my son has money. So far he's bought Wild Dagga (sold at convenient stores as incense but also called South African Marijuana), chewing tobacco, a tobacco pipe and pipe tobacco, alcohol and I do believe a hookah (waterpipe for marijuana). I have no idea how much he's spend online for gaming. Did I expect this? Yes. I was honestly expecting a lot worse of a week then we have had. Despite the above purchases he has managed to keep doing his homework, sleep in his own bed and take his medications. On a side note, I do sometimes count his pills for my own reassurance.
I can't forget that my son is an addict (drugs and alcohol). He's not willing or able to see that yet. How many addicts do you know that are? A lot of us have addictive personalities. If you ask me he's doing better at recognizing it then most adult addicts I know. I've heard him admit to having too much to drink. He admitted to buying the Wild Dagga even though he told himself he wasn't going to. His goal to only use chewing tobacco every now and then is currently not being followed. No one can make him stop being an addict, not even me. He uses marijuana as some of us would use an antidepressant. I'm not sure how I feel about this yet. He's not getting stoned like he used to before coming to live with me, at least not yet. Once the money and above purchases run out, anxiety and depression I'm sure will follow. His ability to cope will decline and requests for prns or as needed anti-anxiety medications will have to be dealt with yet again. His team is aware of his history to abuse such medications and his addictive personality so for now I will put my faith in them to do or not do what is needed.
His appetite is getting better. Some days he surprises me by eating more then I think he will. He generally eats supper with my husband and I. I keep a lot of snack food in the home and he will go for walks with me or come grocery shopping if there is a possibility of stopping for something to eat. These opportunities help me to reinforce things like brushing his teeth. When I tell him to cut his nails he does. If I don't wait too long in between haircuts then he gives in a lot easier. I don't push him to shower more than once a week unless he really needs it and I'm taking him somewhere. He's still doing his own laundry. He cleans up his messes in the living room when I tell him too. Taking a multi-vitamin and mineral has become more of a routine so he doesn't tell me no as often as he used to. Trying to talk him into taking NAC (N-Acetyl Cysteine). It's a great antioxidant that I just started taking. When I looked into it I couldn't believe how beneficial it is for everyone. Even my husband has agreed to start taking it. My son wants to look it up online before he will decide. As things become part of a healthier routine they are easier to build on. I used to think I didn't like yogurt. I started eating it for my own personal health reasons and now I look forward to eating it every day. I was worried that my son thought I was pushing him to take these things because of his schizophrenia and I asked him if that was what he thought. No, he knows I just want him to be healthy.
Every day I make choices on what is important. Him keeping his room neat is not something I have tackled yet. I go in there and pick up his cloths and put them in his laundry basket. I throw out the garbage he hasn't. We/I moved the garbage can so that he has easier access to it and he actually uses it on occasion. I fix his bed so that the sheets can air out, remember his night sweats. Part of the reason I don't mind doing this is because I can snoop a little bit while I'm doing it. I can tell by the messes what he's been up to. I don't particularly feel guilty about this as I consider it a part of my job as his parent, no different than if he was 12. I make choices on what boundaries and what discipline to enforce. If he goes past 2pm some days while doing his homework, I let it slide and remind him of what time it is. Even if he was up late the night before I generally won't let him sleep past 11am. Swearing at me is one boundary I tightened and won't budge on. I can't stop him from smoking marijuana and I haven't thrown out his hookah, yet, but if I find marijuana in my home it will get flushed. The odd time I will let him have a glass of wine with us at super (he rarely drinks it all anyways) but when he asks for a little extra money to go to the beer store the answer is no. I've told him I can't and won't go against my own morals on this. The more I can appreciate his viewpoints the more he can appreciate mine. Doesn't mean we have to agree on them. Agree to disagree and move on.
With each passing day the good routines are getting easier to follow. I don't expect him to follow them on his own. I remind him several times a day about his homework even though he tells me I don't need to. I remind him to brush his teeth before we go out. When he does something I have asked him to do, I thank him. He thanks me when I point out that I have cleaned up his room, for super and making him a tea or coffee. Every chance I can see to tell him that I'm proud of him or love him, I take. We have a lot of conversations about our beliefs and I try to nicely point out to him that I think he would gain a lot more perspective on things if he would let go of his ego and the attitude that he knows everything. At the same time I let him know that I do have faith in him and that I see no reason why he can't one day be all that he wants to be. If his current main goals in life persist, ex: to be a shaman healer, then I will do my best to help him obtain those goals.
For myself. I try to spend one on one time with my husband. Once he gets home from work I spend my time with him. I'm lucky that I'm currently a stay at home mom/teacher. I don't do the super dishes at night. I do them the next morning. I have most of the day to be on the computer doing things like this, housework, laundry and making sure our finances are being taken care of. He is my main support system and he deserves to be made a priority too. Without his support, emotionally and financially, I would not be able to support my son. The stronger our relationship is the stronger I am therefore the stronger we all are. It's like dominos. Once the first one falls they all fall. I guess I would be the first domino. If I'm not ok then neither is my husband or son. They both count on me, even if they don't know it, to be the strong one emotionally. I may be the first domino but without them it wouldn't be dominoS. I need them and my daughter too, as much as they need me.