Behavior Problems
Behavior issues; this statement can mean so many things in the world of children especially toddlers (and teenagers for that matter) lol. With Jayden, he has always been what I call stubborn. From the second that boy was born, he was stubborn, which has always been a GREAT thing no matter how frustrating it has been for me. Lol. He fought for his life numerous times because he was too damn stubborn to give in! He fought his therapists and teachers because he was too damn stubborn to do what they wanted him to. He wants things done on his own terms not because you told him to! It doesn’t matter what it is; you could tell him it is time to sit down and eat Reese’s (his favorite), and he will freaking refuse! Now if you shut up and wait a minute, he will come over and TELL YOU it is time for Reese’s. Every single thing in his life has to be on his terms and because he says so, not because you told him to or suggested something.
While this can make anyone pull their hair out lol, I have learned to work around it. I want him to draw a straight line, I do it myself and set the pen down in front of him and look the other way. He will pick it up and do it on his own. I want him to try a new food; I eat it myself then put the fork directly in front of him in the air and look away. He will either make the decision to eat it or push it away to which I always say, “Oh God, that was for Mommy! Sorry,” and I go on. If I would say, take a bite of this and not do things that way, he would throw a fit and start hitting himself! So again, every aspect of his being is stubborn. Some call these things “behavior issues,” but I do not believe they are at all! Stubborn is not a word I use in a negative way at all! Using the word stubborn to describe him is a positive thing in my eyes. Now some of you may not agree with me lol, but I feel that is because you don’t deal with the behavior issues I am about to discuss, and that is okay! But again, being stubborn is part of Jayden, and it is a part of him that I never ever would want to remove from him as it has truly saved his life on numerous occasions!
With that being said, when I say behavioral issues, what I am meaning is the screaming, head hitting, head banging, scratching, biting, and pulling out other peoples (mine and David’s lol) hair. To us, these are the only behavioral issues he has, not being stubborn like discussed above. Although he has been stubborn all his life, he hasn’t always had these behavior issues. After his first seizure in 2012, some of these behavior issues started to emerge. First, it was the head hitting. He would hit himself on the side of his face/head with his left hand every time he got upset. He does not just tap himself; this is full on aggressive I want to kill the world hits. It came out of nowhere, and we learned that children with severe autism do this. However, it did not start until after the seizure. An entirely different discussion here so I won’t go into more detail lol.
From there, he began the head banging. For us, headbanging is when he slams his forehead on the floor, the wall, or any other hard object. He will not do it on something soft. He is out for the pain of hitting something hard. Head banging is also banging the back of his head on something hard such as the floor during a diaper change or the wall if he is sitting with his back to the wall. At first, he would test himself. He didn’t want to hurt himself so he would do a “test hit” where he would seriously slow his head and hit the surface a little bit before going full force so he would know how bad it is going to hurt. I liked when he did this because I knew he wasn’t going to hurt himself! However, after his last seizure in 2015, the test hits went away. He still knows his “pain limits,” but they are easily forgotten about now due to the severe aggression that can take over him during these fits.
Since the last seizure, hair pulling, scratching, and biting have all come into play as well. Now, he doesn’t just go up to someone and start hurting them. He only does these things when someone is attempting to stop him from the head hitting and banging. For example, if he is mad and starts banging his head on the floor, I obviously have to stop him, which sets him off more, so he does whatever he can to me to try to make me stop helping him lol. In other words, he is now attacking me because I won’t let him hurt himself. Well, oh well. I would rather him bite and scratch me than slam his head to the floor 100 times because he is mad, so I continue to place myself between him and the object. Sometimes that means putting my arm between his arm and his head, or sometimes that means using my legs, arms, or stomach in between his head and the floor. Either way, he doesn’t get hurt, and I do not have to restrict him from getting his anger out.
That last sentence is important to me. Whatever has upset him (which I will discuss later), is valid and I believe he should be allowed to voice his frustrations or feelings. However, he cannot speak or communicate in a proper way right now (which of course we are working on), so this is the only thing that makes him feel better. Although this way hurts him, so his dad and I are willing to be that barrier. I will not restrain him or even restrict his body movements during these situations. I won’t do it for a few reasons. One, why should someone be restrained or their movements be restricted because they are upset with something and they don’t know how to express their feelings?! To me, it just isn’t right. I get mad, I scream, hell, I have punched things throughout my lifetime, why shouldn’t he be able to express himself in those ways? I just have to be there to make sure it doesn’t go too far and that he doesn’t harm himself. Second, he DOES NOT, I repeat DOES NOT like being touched, cuddled, or having someone in his personal space when he is in a GOOD mood, so what the hell do you think he feels like in a bad mood? I am not going to jump into his space and restrain or restrict him because it sets him off even more! Now, of course, I have to intervene and I have no choice to that because I have to stop him from harming himself, but I do it in a way to where I touch him very minimally, which is why I just use my body as a blocker for the floor, wall, or his head. Maybe others wouldn’t do this, but it is what our family does, and we have learned, doing things this way gets him to “snap out of it” much quicker than trying to hold his arm or head and stopping him that way.
As I said, since the last seizure, he did add some new behaviors into our everyday life, but as I touched on, they became worse as well. At first, his behavior was more severe than I can describe. In these last two years, his behavior has gotten better. Although he is still doing everything, I am able to get him out of it quicker than the first year after the seizure, so I consider that improvement! Aside from the severe aggression due to some medications that we tried for sleep, his behaviors are to a manageable (our manageable not what others would consider manageable) point. I know they will continue to get better, but it will take time and no further insults to his brain (seizures). We are willing to just keep working through it in our own way. We have been doing it for two years, so we will continue.
Now, at this point in a face to face conversation, many people ask, have you tried a helmet, what about padding, putting him in a “soft” spot so he can’t hurt you, did you try behavior medication? These and many more questions. My first response is that our life works for us even if it wouldn’t work for you. We are okay where we are. However, have we tried a helmet? Yes, we have tried, and I don’t think I have to tell you how that went. Keeping it on him all day is out of the question as he flips out. Putting it on him during his meltdowns is pointless. Why? Because unless I want to just sit there and watch him hit himself over and over again with the helmet on, I am still going to have to intervein, but this time I will be hit with a hard plastic helmet when he is thrashing around. It doesn’t feel too good. A helmet is not a good protection as he can still hurt himself. Plus, it makes him go on so much longer because now he is mad about the stupid thing being on his head. So, I am just his helmet and use my body as that barrier. Padding or soft areas for him to go crazy isn’t the answer either because if given the choice, he will continue hitting forever. I can’t just put him in a “safe” area and say have at it because he will and no matter the padding, he will hurt himself. These are all just objects that get in my way of protecting him. The only padding I do see as necessary is the yoga mats I have attached around his bed. Sometimes when he gets mad in bed (because he doesn’t want to go to sleep) he hits the wall, and the mats stop him from hurting himself; thus, I do not have to intervene. It is over quickly because I do not have to intervene and because he just gets out of bed lol.
Medications. Medications have not been a direction we have wanted to go because this is seizure induced behaviors. Also, I do not want to calm him to the point of his stubbornness going away, which is a fear of mine. That truly is a benefit to him in so many ways, and I do not want to remove it. Will medication for behavior be needed at some point? Maybe and we will cross that road when we get to him. However, medication is not just a “fix all” in him or other kids like him. In fact, there are many kids that have tried all the medications there are and still nothing worked so their parents had to try to deal with the behaviors on their own! We are just taking this route first instead of after trying every medication. Most people are unaware of this section of the world where behaviors are severe and there is no real answer as to why or how to fix it; however, we live in this area. His doctors and I believe a lot of the behaviors are due to his lack of sleep and crazy sleep patterns, so we are working on this first. Once we finally find a solution to this, we will reevaluate his behavior after many months of normal sleep,,, if that ever happens lol. Until then, we will continue to do what we do until something makes us do something different. It is how we chose to deal with things. I am very educated in not only psychology as I am getting my doctoral degree for that, but also in many other aspects of Jayden. I have taken classes and had training in multiple areas. Even with all of that, what we choose to do works best for us, and I also believe it is what works best for Jayden.
Since this turned out to be such a long post (I “talk” a lot lol), I will create another post discussing the triggers to his behavior outbursts. Thank you for taking the time to read all of this! I greatly appreciate it!