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.
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