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Monday, January 18, 2016

I Think He Can...

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'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. 

Mama heartbreak. 

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...  

One Small Blip

Last year, a 13 year old boy in our neighborhood felt he couldn't face living anymore. His death shook our community to the core. I remember the day it happened. I remember hugging my children extra tight that day, and every day since then. I remember talking with my older boys about suicide and about how it's absolutely not ok with me if they ever decide that life is too much. I don't know how parents can go on living with such raw despair in their hearts. My heart goes out to our neighbors who lost their son a year ago. 

I remember a couple nights after the boy's death, his family held a memorial in the small park in our neighborhood. Our house is on a corner. Our street is the only way into and out of our neighborhood. Ben, Jonah, and Alex walked over to the memorial. Ella and Aidan were in bed. I stood on our front porch with my sweater wrapped around me, freezing, but too full of sorrow to move. It was cold and dark when the gathering began. A beautiful snow started wafting down from the heavens. Tears began to prick at my eyes for the pain this family was going through. My tears came faster as I watched the headlights of car after car after car after car pour into our neighborhood, lighting up the falling snow, to honor the memory of this boy. The snow fell softly as every space of curb in our neighborhood was taken up by parked cars. I was awed by the number of people who came to remember this boy and grieve with his family. It seemed unbelievable to me that so many, so many, families came to stand in solidarity with our neighbors.

I kept thinking why can't we show such support to each other when we're alive and well? Why does it take a death to bring a whole community together? Why does it take a tragedy to bring dozens and dozens of cars, streaming in to a neighborhood on a snowy night, to show their support? Why are there meanies and bullies and teasing and torment and struggles? Why can't all kids be kind to each other and support one another? Why can't all grown ups model that behavior? It broke my heart to see this out-pouring of love and support brought together by death. Had this boy known about all the people that had his back? All the neighbors and friends, some of whom I'm sure he didn't even know, who were always there for him in spirit?

Last week, Ben got an award at school for Citizen of the Month. It's a secret- parents of the winners sneak into the back of the cafeteria to watch their children accept their "swag bag" and the principal reads a statement about why the child got the award. 

Despite the fact that Ben came home from school deflated because some of his peers had said he didn't deserve the award, and he conceded that probably only Jonah voted for him and he didn't really deserve the award, I was completely, insanely, over-the-moon proud and happy for Ben and his accomplishments. Ben's face did light up when he said there is always one boy who tells Ben all the time that he thinks Ben is great. That he can tell Ben has had a hard day, but to hang in there. This one boy makes a big impact on Ben. Wouldn't you just love to be this boy's Mama? Wouldn't you just burst at the seams with love and pride for your boy and how kind and wonderful he is out in the world when you're not watching? Wouldn't we all love to have kids like this boy? This Mama should be so proud. Ben has friends, and they always cheer him up, but this particular boy is something special. This boy consistently shows up for Ben, cheering him on during his hard days.

At the little lunch ceremony for the students who were being honored, I was busting with pride. I walked in and sat down in the cafeteria. Ben stood up at his table and waved at me. Then Jonah popped up across from Ben and waved like a maniac- just the way I've taught them. :) I felt my heart swell a million sizes.

I sat in the back of the cafeteria, watching and listening as the principal talked with the whole 8th grade class about the month's behavior reports, what improvements they have made, etc. Some of the faces sitting at those lunch tables I have known for 9 years. Some I don't know at all. They were all so perfectly beautiful- their lanky limbs, braces, and pimples. So perfect. All of this crazy 8th grade stuff is just a moment in the grand scheme of their lives. One small blip on The Radar Screen of Life. 

  The other night as I was tucking Jonah in and rubbing his back, he mumbled "I'm so dumb." I was taken aback-- you never know when your kids will unload their hearts to you, and you never really know what's weighing on their minds. I asked him why he feels that way. He said that even though he's trying his best in school, he's still not getting good grades. He thinks it's because he's dumb.

Whoa. No one calls my smarties "dumb." Not even themselves. I explained to Jonah that he is actually quite brilliant. He's had neuropsychological testing done and the test results confirm that Jonah is very smart. His intellect is not in question; rather, the school being unable to recognize and provide support for Jonah's (sometimes) invisible disabilities is the problem.

Jonah said he is worried about getting through high school, and he's worried he'll never get a job because he doesn't have good grades. I told my little worrier that no job looks at your junior high transcripts to decide whether you are a good candidate. And as far as high school, we'll just take it one step at a time. All Jonah has to do is keep trying his best.

I told Jonah that this week is his IEP meeting, to hear whether the school feels Jonah meets the criteria to receive special education. When I walk out of there WITH Jonah's new, shiny IEP all set up, I guaranteed Jonah that a whole new world will open up. I said just look at Ben! 2 years ago, Ben was a complete mess, academically, emotionally, everything. He got an IEP last year, and his needs at school are being met very well. This year, Ben is thriving. He's doing wonderfully! He's got better grades, his frustration level is down, his aggression is down, he's happier. I told Jonah, just wait. This will happen for you too.

This is a perfect side-by-side test of what happens to kids when you give them the support they need at school, versus what happens if you don't. Sadly, my twins are the guinea pigs. One boy is thriving and one is tanking. It's not easy to be the parent of these little guinea pigs, and to have to sit by while one little guinea pig's self esteem is destroyed. I don't know if it will ever recover. I do know that WHEN Jonah gets the support at school that he has desperately needed for years, he, too, will begin to thrive. This is but a blip on The Radar Screen of Life. This is just preparing Jonah for all the other adventures he will get to experience in his life.

In that cafeteria, waiting for Ben to get his award, I felt my heart energy grow and grow until it filled the whole room and burst like a firework over all those sweet, awkward teenagers. I hope each one of them knows that they are cherished and loved, and that there is nothing more important than them in this world. I hope they know how many people would show up for them on a snowy December night, how many who think they're amazing, how many who adore them...if we showed up for people who were still in this world. If we told people in our lives every day what a gift they are. If we were kind and accepting of everyone.

I won't let my children's blips on The Radar Screen of Life go un-noticed or un-cherished or un-cheered-for. All those little blips add up to a beautiful life. I am honored to be present for my kids' beautiful lives. Be sure to tell your loved ones they are cherished. Be sure to show up for them every day, so you don't end up wishing you'd said, done, been more to them if a heart-wrenching, snowy December night comes your way. Regardless of who people are, what they do, what they stand for, everyone deserves to know, while they are living, how beautiful and perfect and cherished they are. And what a gift to the world we all are.

Thursday, January 7, 2016

Itchy Sphere Oil

I mean no offense to anyone by anything written in this post. Just wanted to get that out there first. Here we go...

A few weeks ago, Ben and I were driving somewhere. He was very upset because he couldn't get a phrase out of his head and it was bothering him like crazy. He had to keep repeating the phrase. He had to keep thinking the phrase. This is part of his OCD.

The phrase was "subdermal hematoma."

Weird, I know. Gotta love OCD.

Ben was so distressed by having to keep thinking about and saying this phrase, I scrambled to find a way to help him. I decided to make up a song. I've always made up songs about everything since my babies were first born. In fact, when Ben was taking piano lessons a couple years ago, the instructor asked me if I sang to Ben as a baby. I said yep, and I still do! She said she could tell because he just understands music, he 'gets' it.

But I digress. So I quickly thought of how to make "subdermal hematoma" into a song- that doesn't rhyme with much. I had to act fast or Ben would end up in meltdown mode. Here's what I came up with:

Ben: Subdermal hematoma
Me: Oh how I love ya
Ben: Subdermal hematoma
Me: You remind me of my mama
Ben Subdermal hematoma
Me: She is in a coma
Ben: Subdermal hematoma
Me: I want to buy her a boa...
Together: C O N S T R I C T O R

Admit it, you love it, right?? Ben though it was so insanely hilarious, he got knocked right out of his meltdown, stressed out, OCD mood. He laughed and laughed, and we sang that song all the way home. Ha. Mama wins. Take that, stupid OCD.

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One night I was making school lunches for the kids for the next day. I was suddenly struck by the intense feeling that my twins needed a Mama Rap in their lunch box. I know, insane. I am about the most un-rappiest person in the world. But I got the sense that the boys needed me to rap. This just came to me:

Yo yo
Yo Mama loves you so
You make the world glow
Just by bein'
in it.....

Peace out. Mama out.

When the boys got their lunchtime rap the next day, they came home from school beaming. It was the cutest thing. They had all their friends read the Mama Rap. Their friends thought it was cool (I know, I'm awesome- 8th graders think I'm cool once in awhile.), and the boys couldn't stop laughing. Anything to brighten up their day.

*                                                 *                                           *

WARNING: This next part contains talk about private parts. Sorry, but that's what Mamas have to do sometimes. Especially if you have teenaged boys.

So one of my 13-year-old darlings is having some testicular itching. I know, gross. He keeps having to itch, with gusto, in public, to the extreme embarrassment of his mother. The doctor says it's nothing. Hm, well it is something. Because the kid is being disgusting, scratching himself with great dramatics, everywhere we go. This cannot continue.

I decided to look up ways to alleviate this problem online, with natural products. I read through many descriptions of various itchy symptoms, and ways to treat this. I came upon an article that said tea tree oil can help alleviate this particular brand of itch. I got very excited. I told my boy I would fix his itchy problem! The family looked at me with disdain- "Mama's on a kick again, something crazy for us to try..." I would show them!

So you have to know something about me. I hate the word "testicles." It's just so icky. I also hate anything gross related to that area. Like when Alex was doing karate, he left his protective cup out on the TABLE after his class! EW! Disgusting! People EAT there! Ella was going to touch it, and everything in the room slowed down, like in the movies. I lunged at her to stop her from touching The Grossness, and yelled-


The boys still hoot about that. Daddy's nasty penis cup. Well really, why would he put it on the table? Gross.

Anyway, one thing you also need to know is that I've been working on starting up an Etsy shop to sell weighted blankets. I finally decided on the name "Nonah & Bean." When Ben and Jonah were toddlers, Ben used to call Jonah "Nonah," and Jonah called Ben "Bean." So adorable. So the kids know I've been trying to work on this shop, and find the name, etc. My darling with The Itch went into the bathroom with my concoction of tea tree oil mixed with coconut oil, and applied the ointment to The Itch. He came out with a happy, relieved look on his face. He said he didn't itch anymore!

The boys were so excited about my super duper natural fix for Itch, they decided it deserved to bear an official name. They said it should be called "Nonah & Bean's Itchy Testicle Oil." Hm, somehow I don't think that will sell well on Etsy. So all week, Nonah & Bean's Itchy Testicle Oil has been in high demand. "Mom! I need some Itchy Testicle Oil!" at least three times a day. I hate that word.

Finally, I said "Boys. We cannot use that word anymore."

They said fine! How about "Itchy Ball Oil?"

Nope. Not gonna work for me.

They proceeded to name all sorts of 'creative' ways we could describe this particular boy area. I vetoed every one. I told the boys that the name of the oil from now on would be "Itchy Sphere Oil." So there.

The hilarious part is that they really are calling it that. Cracks me up. Look for "Nonah & Bean's Itchy Sphere Oil" coming to an Etsy near you!

My darling with The Itch came home from school the other day, and said that he had gone to the bathroom at school. Another boy in the bathroom exclaimed "What is that AMAZING smell??" My darling smiled secretly to himself. I'm grateful he did not proclaim aloud that that amazing smell was his Itchy Testicle Oil.

The crazy things parenting brings. You have to remember these funny things and laugh when you can. Kids do make life more interesting.