I’ve written before about our struggles with medication for our kids. Side effects can be brutal. Ben has been dealing with a side effect from one of his medications that has been gut-wrenching for him. This particular medication causes him to gain weight. The psychiatrist said “It makes him want to keep eating.” Ben corrected him, saying “No, it makes me never feel full.” I was amazed at his insight.
So this pesky medication. Ben gets frequent blood tests to monitor the effects of the medication on is body. We check his liver, especially. A couple months ago, Ben’s liver enzymes were elevated, and his body wasn’t too happy about being on this med. The psychiatrist said wait one more month and we’ll repeat the blood test.
As usual, at the psychiatrist’s office during our last appointment, he weighed and measured how tall Ben is. He discreetly asked me if this was as good as things were going to get, in terms of exercise and portion control. I said yes, this is as good as we can do. Alex and I have always taught the kids about healthy foods, portion control, exercise, etc. We try to have very nutritious choices for eating, and once in a while we have a junky treat. We try to be good about this. But because of the medication, Ben gets angry when we encourage him to make a healthy eating choice. His brain just wants more more more. So he has gained weight. Which makes him very insecure and self-conscious. My heart breaks for him. I’ve been in his shoes.
After the psychiatrist asked if this was the best we could do in terms of keeping Ben healthy, he said “Then we have a problem.”
At that moment, Ben caught on to what we were talking about. I explained calmly that Ben’s body wasn’t liking the medication, and we may need to get off of it. Ben immediately burst into tears, weeping “But this is my MIRACLE drug!! I CAN’T go off of it!”
Ouch. Mama heartbreak.
I told Ben that a lot of external things have changed in his life since starting this drug, and he may not even need it anymore. I reminded him how he is getting a total nutritional overhaul with our dietitian. She is creeping into the nooks and crannies of his body with her special energetic, scientific, “voodoo” testing, and finding all the things that Ben needs to be healthy. He is much healthier than he used to be because of that. Through the dietitian’s muscle testing techniques, we know what supplements Ben needs, what his body needs to detox from, if he has a virus or bacteria…it’s incredible. So that’s the first thing.
The second thing is that Ben is getting so much more support at school. He has much more one on one support, he has extra help in so many ways. This has led to a decrease in overall frustration. An increase in self-esteem. More cooperation when doing homework. Less homework because he has more help at school. Less aggression. Less anger. More compassion. More patience. More love. The past two months have been completely wonderful and unexpected with Ben. He has been his true self. That boy that we used to only catch glimpses of; that boy that was funny, kind, generous, filled with total heartfelt calm and love. That boy that I know he always has been, but who has been buried under loads of anger, fear, anxiety, rigidity, and defensiveness. My boy has climbed out of that Mountain of Ick to turn his beautiful face to the sunshine and embrace life. These past two months have been mind-blowing.
All the way home from the psychiatrist’s office, Ben cried. He felt he just could not come off of this medication. He knew he would rage again, he knew he would be angry again, he knew he would lash out at the people he loved the most in the world and he wouldn’t be in control of it. He didn’t want to be that way again. He loves to be his true self.
I told Ben to just breathe. Just wait. We’ll take it one step at a time, together, and we’ll figure out what to do. Parents shouldn’t have to look their child in their teary eyes and decide whether to keep him on a medication that brings his true self to the surface, or take him off the medication because it’s not healthy for his body to live on it.
Ben and I talked a LOT over the next days about what to do. Ben contemplated his choices. Ben has to be invested in our decisions now, otherwise nothing works. He deserves to be invested, and consulted, about his own body and mind and soul. He deserves that respect. (With Mama knowing that she has full veto power, of course.)
Ben came to the decision that his weight is bothering him so greatly that he doesn’t want to be on this medication anymore. He decided his physical health was very important. He chose to face the possible rage returning. I told him Dad and I will be by your side, doing everything in our power to help you stay the true you.
Over the past few weeks we’ve been slowly coming off of the medication. Slowly. No sudden movements. Ben is having a harder time keeping his impulsive outbursts in check. He struggles with an increase in anger, an increase in frustration, an increase in physically lashing out. But. But, he is also maintaining his true, endearing self most of the time. Most of the time, if he is showing anger, there is an underlying emotion that he doesn’t know how to identify that is actually the problem.
For instance, Daddy is gone on a trip. Yesterday, before Alex left, Ben was having a very angry time. Finally, I asked him what was the matter. He said “I’m mad.” I said “No, underneath that. What’s the matter underneath that?” He said he was so sad that Daddy had to go on his trip.
That’s often the case- anger just shields true emotions from coming to the surface. For so many years, when Ben felt any emotion, he showed Rage. He wasn’t able to understand, interpret, or show sadness, disappointment, depression, etc, without simply showing anger. It has been fascinating to watch Ben mature. Right now he is starting to identify and embrace all the other feelings that he has. It takes me identifying those emotions for him first, but he is at the point now where he can halt his Rage and understand that he actually isn’t angry– he’s sad! Or frustrated! Or disappointed! Or lonely! Or bored! Or tired! Or whatever!
It’s coming along. Slowly, slowly, but it’s coming. We’re getting there, making progress. I don’t care how snail-slow the progress is as long as we’re heading in the right direction. So the decrease of this medication continues. Today was a tough day. Not only is Dad gone, but we decreased the medication just a teensy bit more. Every decrease does cause an increase in angry outbursts. Which is tough. As Ben was lying on the floor, pounding his fists and crying today, I told him I had decreased his med a little more today. I said he needed to tell me if he felt this was ok or if it was too hard. Because we can stay at this level of med if it’s too hard. He was very upset because he wants to get off the medication so he can lose weight. And he hates it when he loses himself to the anger. I don’t usually tell him when we’re decreasing the med, so that he’s not thinking about it and worrying about it. I just do it, and give him that information as necessary.
I have found through this decreasing process that it is easier to reach Ben when he is angry than it used to be. It used to be that Rage would take over and that was it. We lost the real Ben for however long it took to feed The Rage. When The Rage was satisfied, it would leave Ben’s body, wracked with sobs of contrition, weeping with sorrow at what he had done or said while not in control. Now, if I’m extremely calm at all times, like exaggeratedly calm, I can usually wheedle Ben away from The Rage and back to the true him. Before he is too far gone with Rage, I can get him to see that he is actually feeling sad. And it’s ok to feel sad, because something sad just happened. And I’m here beside him, to give him a hug and be with him. And it’s ok, he doesn’t need to be mean or angry just because he’s sad, he can just be sad.
And many times it works! Many times I’m able to snatch my boy back to me before Rage gets control! This used to be impossible. Just impossible. Once Rage would come, it would stay. It would wreak havoc on everything and everyone around Ben. Including Ben. It was devastating. But now I see glimmers of hope. I can see a small light, shining in Ben’s soul–I can see he wants out of The Rage for good. And I know he’s strong enough to fight it. I know who he truly is, and I know he can make it.
So we’ll stand beside him and walk through the dark places with him. Because he made the choice to go off of this medication so his body can be healthier, and we know he can do it. Whether he will need a replacement med remains to be seen. The trouble is, we’ve tried pretty much every med there is to control rage. And none of them worked. This medication was our last resort. So…sort of out of options. I feel like we’re balancing on a skinny tightrope made of a single thread. I’m just willing us to get to the other side, safely, away from Rage. I think he can, I think he can…
Full Spectrum MamaJanuary 21, 2016 at 8:03 AM
This was such a beautiful post. It feels like you are ALL really connecting and TOGETHER in this. It’s SO hard, for all of you, but the communication and patience and intentions are all there. GREAT JOB.