A Fine Line

 My husband and I were having a discussion the other day. It came about related to a recent school shooting or rather a bomb scare we became aware of. My husband and I are rather polar opposites when it comes to guns and gun control. Although, we do agree that if a hunter requires several rounds of ammunition to go hunting with, they shouldn’t be hunting in the first place. Despite our views on gun control, the heart of our conversation centered around mental illness. 

Despite the latest surge of self-help books, apps, and web-based therapies, there is still not enough resources available to assist with mental illness, especially in children. In the 1980’s funding for mental health services was decreased significantly. As a result, many hospitals and mental health units had to make some hard decisions. Many units closed down because there simply was not enough reimbursement for services to keep them open. Others switched to focusing on addictions as a way of keeping their doors open. It almost seems to be more acceptable to have an alcohol or drug addiction versus a mental illness. What many do not realize is that those with a drug or alcohol addiction have underlying mental illness. Many turn to alcohol or drugs to quiet the voices in their head or deal with the emotional roller coaster they may be experiencing. While addiction programs do try to deal with the underlying issues that leads a person to drink or take drugs, they still remain woefully inadequate. The amount of resources available to persons suffering from metal illness varies state to state. Adults have a hard enough time seeking these resources out, let alone resources for children. 

The latest surge of online mental health services had made things a bit easier for adults to seek help. If a person has access to a computer and internet connection, they can receive help via telehealth. However, if they are homeless, poor, or no health insurance that would cover, the person has to look for help by other means. For parents of children, it is much more complicated. 

The mental health services online do not cater to children. Many of the inpatient mental illness hospitals or clinics are for adults; only a handful have units for children. Whether you are an adult or a child, many of these hospitals or units will not admit someone for help unless they are a danger to themselves or others. Even then, they may still not admit them to be evaluated and treated properly. J has hit and choked his teachers and they still would not admit him. The main solution to help adults and children is to add more medications or make medication adjustments and hope for the best. We just recently added another medication to J’s regimen. A few weeks ago, I spent time trying to find a hospital that would take J and each one the state gave me to contact dealt with adults and substance abuse, not mental health behavior for children. The only solution I had available to me to help J was to increase his case worker’s visits to 3 times a week. 

The other issue concerning children is that professionals hesitate to apply certain diagnoses on a child despite all of the signs and symptoms that may be present. The standard diagnoses consist of ADHD, clinical depression and oppositional defiant disorder. I have been told many times that they do not diagnose certain conditions until they are teenagers. Unfortunately, as teenagers, their behaviors are set and can become very difficult to turn around. It is almost too late to treat them. 

With J, I am persistent, so there is some hope for him. However, I think about all of the other parents dealing with a child like J who do not know how to be persistent. The case workers only have access to limited resources themselves and can only help parents to a certain extent. It primarily becomes the parents’ responsibility to make sure their child receives help. I was even told I would have to become a “squeaky wheel” if I wanted J to get help. 

I work full time which makes it difficult to be that wheel. I have  spent time making phone call after phone call to no avail. When I do find someplace, J is placed on a waiting list and it requires I drive an hour or more to take him to receive services. This means I have to take time off of work in order to do this. Like many other parents, I cannot continue to take time off. I am willing to bet that many parents cannot afford to take time off of work to help their child which makes their situations more strenuous than mine. Being a “squeaky wheel” is exhausting and at some point you even get tired of your own noise. 

When massive shootings occurred regardless of the location, there is an abundance of discussions centered around gun control. These discussions occupy mainstream media and make no room for the real reasons behind why these individuals commit mass murder. Although I am for better legislation around acquiring guns and removing guns that hold more than 30 clips off of the market, it really doesn’t address the issues behind why these individuals would commit a mass shooting. The guns are a means to an end for these individuals. Guns can easily be acquired. But, I often think, if guns were not available what else would these individuals use? 

Mine and my husband’s greatest worry about J is that he will do something that could injure himself or others. We walk a fine line when it comes to disciplining J. If we give hm to much discipline or yell at him one too many times, will he snap? If we give him too little, will he think he could do whatever he wants without paying consequences? If we say or do the wrong thing will it contribute to how he sees himself and others? When we tease with him or joke around with him, will he take it literally or see it as a harmless joke? Unfortunately, he takes things most literally so we have to be really careful what we say or do around him. We have not always been the best around him. Call it frustration, tiredness, anger, whatever; I still hope that the good we have done will out weigh all the wrong and J will not snap or do something terrible. 

We walk a fine line with J. Everyday it is something different, a new challenge. We do not always respond in the best manner or say the right thing in the moment but we try. Just the other day J threw a massive screaming fit because we needed to go to the store and he did not want to go. We sat around for 40 minutes waiting for him to getting out before we could leave. He had to stay in his room until he calmed down. We did not react other than to send him to his room. It is hard to say what J will grow to become or what he will do. All we can do is pay attention to J and respond in the best way we can. It’s a fine line we walk.

It Takes a Child

The amazing thing about children, at a certain age at least, is their uninhibited way of making statements which make a person acknowledge certain truths. J statements he made the other day to me had their nuggets of truth. They were trite, overused statements. The kind you read about in self help or self awareness books. In fact they are the kind of statements you hope your children take to heart but we as adults often fail to follow ourselves. 

We were discussing about finding new people to meet, attend a new church, etc. I am hesitant due to past hurts and recent experiences. I also do not want to be in a situation where I have to change myself or accommodate others while sacrificing my own feelings. It never ends well. However, J stated to me that I should not have to change myself to meet new people or attend a new church. He said I should just be the way I am. 

Sometimes as parents, whether we realize it our not, we live vicariously through our children. We push our children to be stronger, smarter, better, achieve more, and be successful. As parents we often say to ourselves that we push our children for their benefit because we want the best for them. Then we stand back and make boastful statements, “my son did this in school,” “my daughter got this award,” my son made straight A’s,” “ my daughter did this…, “my son did that…,” and on and on. We make these statements and beam when people react and respond with positive affirmations. It becomes a reflection on our parenting skills and abilities. Before we know it, we as parents begin to define ourselves by the actions of our children and loose ourselves along the way. 

The way I am. I have spent the past 5 years trying to teach J lessons, to change his behaviors, teach him how to respect others, and so on. In the beginning I would be mortified over J’s behavior and worried about what others think. I would try to change or redirect J’s behavior, explain it away to others, provide explanations on the steps I was taking to address the situation, anything to receive affirmation from others that I was a good mom. I worried about how his behavior projected on myself and my family. It really has affected the way I am and in the past couple of years I’ve realized, “who really cares.” 

I used to see parents in the store with their children who would scream and cry and think, “ they must spoil their child, “ don’t they discipline,” and the worst of all “they are not great parents.” I was judgmental of those parents. Now, I completely sympathize with them. 

J in our lives has helped me to see how much stock I placed in the thoughts of others. I felt others would judge me the same way I had previously judged. We are warned not to judge others unless we be judged by the same measure. Ironic. I measured myself by my own judgments. 

It was really absurd. My whole life has been spent restraining myself worried about what others think of me. It has caused me to hold back, only show certain sides of myself, take the criticism lying down, and not stand up for myself; all in the hopes of pleasing others. My actions and reactions were based out of fear of what others thought of me. This fear drove me to place pressure on my two older boys and then on J. However, it took J to help me realize just how much emphasis I placed on the thoughts of others and how ridiculous I have been. 

J stated to me the other day that I should not change myself for anyone. I should just be myself and not worry what others think. J stated that people should just accept me the way I am. He said the exact same things to me he is repeatedly told by others. These are the same things I have told J to take to heart but have failed to take them myself. 

It is difficult to change one’s thought processes that have been imbedded for decades. It has taken J being a part of our lives for me to see how ridiculous it is to base my self worth on the thoughts of others. Even though I realize this, it is hard to change decades of imbedded habits and actions that cause me to try and please others but I am trying. Recent events over the past year has made me vulnerable to backsliding. 

Our conversation with J the other day helped me to realize how vulnerable I have become. I have found myself fishing for compliments at work, looking for ways to affirm myself, and making sure J’s case worker knows we have been trying to help him. I hesitate looking for a new church for fear of being hurt or falling into the same merry-go-round trap of pleasing others in order to be accepted. I have been more critical of J than I ever have been because I want others to think we are doing a good job handling him. 

J was right. I should not let others dictate who I am. I should not let J’s actions be a reflection of my parenting skills. If others have a problem with how direct I can be or if they are intimidated by me, that is their problem, not mine. As he stated, I should just be myself. I realized that J has never asked me to change who I am. It took this child with all of his struggles and issues to make me realize that I am okay just the way I am.

Beating Our Heads Against the Wall

We are beyond frustrated. So frustrated to the point that we are becoming numb. I no longer want to react to anything he does or says. Whatever steps we take to try and teach J about his behaviors it is to no avail. He continues to misbehave and threaten others around him. He continues with his crying and screaming fits. He continues to argue and push boundaries. His case manager and doctor continue to grasp at straws and repeat the same thing to us over and over. We are exhausted from beating our heads against the wall.

It is getting harder to hang on to the good days that occur. They are becoming few and far between. For every good day, there are 7 bad days. The bad days occur more consistently than the good. We do our best to praise J on the good days in the hopes to incentivize him. If we observe him behaving well, we do our best to praise him in the moment. However, it does not seem to make any difference. 

A couple of weeks ago J was getting his hair cut. I was praising him on his behavior during the haircut. Over the years, getting J's haircut was always an issue. He would scream, squirm, yell, argue, and fight - before, during, and after the hair cut. It has only been within the past year he has been doing better. Whenever we take him to get his hair cut, we do our best to acknowledge his good behavior. It does not stick. When he got his haircut two weeks ago, an hour later he was arguing and accusing me of making statements I did not say and proceeded to call me a liar. All the praise I gave him went right in one ear and out the other. 

We have been doing everything the case managers and his doctor have said to do for over the past 5 years. It is so easy for them to sit on the other side of the desk and tell us what we need to do. It is so easy for others who sit on the sidelines to make suggestions, comments, critiques, and so forth about a situation when they do not have to deal with it every damn day. They do not have to sit and listen to a child scream and cry for hours. They do not get the phone calls from the school telling them to come pick their child up because he threatened to hurt or has hurt another individual. These case managers and doctors do not receive constant text messages that their son is threatening to hurt the teacher and fellow students. We provide the case manager and doctor with all of this information and the response from them remains the same. Their standard response is to adjust J's medication and tell us once again to get him therapy. 

We adjusted J's medication this past month. He has had so many medication adjustments since he was 5 years old. This latest adjustment I am told is the last medication they can try on him. He is now on Thorazine (chlorpromazine) 25 mg twice a day. He also takes propanolol 20 mg twice a day and Intuniv 2 mg once a day. J has been on clonodine, Adderall, Focalin, risperidone, Vyvanse, Depakote, and Haldol. These meds have been adjusted numerous times before he was taken off of them. He has received therapy, been enrolled in therapy day school, admitted to a research psychiatric hospital, and admitted to a behavioral hospital. The behavioral hospital admission was a complete waste of time. The research hospital provided us with some answers but even then they were still unable to help him. His behaviors worsened in the day therapy school. He is under an IEP at his present school which is supposed to have staff members to help him but they are the ones calling or texting us just about every day. All these medication adjustments and other steps we have taken have done very little to help J or us. 

It boils down to the parents. We are getting tired of being made to feel like J's behavior is our fault somehow. As if we are not doing enough to help him or take the various professionals' advice on how to handle him. I have been fighting to get him the proper help. I have requested numerous times for him to be admitted so he can be thoroughly evaluated and his medications properly adjusted. I have made a request to have an MRI done on his head to see if there might be a physiological component as well but that has gone unanswered. Every which way we turn, we hit a brick wall. The only thing that will cause the professionals to increase their services is if J threatens to harm himself. It does not matter if he harms or threatens to harm others. 

Last week, I received a text message from the school that J threatened to stab a teacher with a pencil. He has already choked a teacher twice, punched the bus aid several times in the face, attacked another kid, and eloped from the school. I have asked the school to call the police when he becomes this violent but they refuse to do so citing their policies. Their solution is to send him home every time. Each and every time, it falls to us to do something about it. 

This latest time, I decided to do nothing. I decided not to talk to or engage with J. My husband talked to him this time but said very little. I did not want to have another evening or day that ended with him screaming or yelling, "that's not fair," and us getting worked up and losing our cool. I did not want another evening having the same discussion with J that we have had numerous times. Needless to say, we did not want another evening beating our heads against the wall. Our heads can't take much more.