Shame in Struggles

I recently read Brene Brown’s “The Gifts of Imperfection”. It was my first by her, and an unusual reading selection from me, but I decided to branch outside of my comfort zone because if Coach Lasso suggests an author, she just might be worth looking into. A lot of it didn’t resonate, as I tend to keep such books at a distance for fear of accidentally engaging in some self-reflection, but there was one theme that hit a little uncomfortably close to the mark. 

She talked about shame. How shame is one of the great motivators in our lives.

For the most part, I think of myself as fairly shameless. Having Emerald as a toddler helped me develop thick skin;  their outbursts were as public as they were overblown. Either way, when I discovered the other day I had been walking around in shorts that were completely see through for the better part of an afternoon (thanks Amber & Mike), my reaction was “well, I hope they enjoyed the show”. Events that formerly would have sent me into a desperate shame-cycle now barely register because I am both too tired and too inured to humiliation to waste energy being upset about it. 

It could also be that what causes me shame has changed as I have gotten older.

Amber made me do the enneagram a while back; I don’t know how much stock I put in it, but I will say it hit my fear on the head: being perceived as incapable or incompetent. (Five, if you are wondering, with a strong wing toward 7 in stress. Go figure.) No one likes being viewed in such  a way, but it is my greatest insecurity and the one I put the most time and effort into combating. This is what I try and hide, those breadcrumbs that reveal that I may not be good enough, may not know enough on my own to…to what? Make it? To be a useful, productive member of society? What is the great fear there, in seeking the help and counsel of others? 

For those of the Christian persuasion, there is the two-hit combo response: God won’t give you anything you cannot handle (or at least tempted beyond what you can endure, 1 Corinthians 10:13; our creative interpretation of that one gets a little stretched sometimes) or if He brings you to it, He’ll bring you through it (not sure on the origin of that one except our love of pithy little sayings). I know that we are social creatures, that we are designed to live and function within a society, so that no one of us need be enough to endure the painful reality unaided. Intellectually I understand this, but for someone that is as fiercely self-reliant as I am, it has been so difficult to reveal the depths of my inadequacies and ask for help or advice or even just someone to listen and commiserate with me. 

Ms. Brown didn’t just name the problem, though--she offered a solution. Shame dies in the light. It can’t thrive when brought out in the open where we are forced to confront it, realizing that the ugly little voice inside that is terrified of people finding out is wrong: most people care, and want to help. Nobody is judging you. Well, no one worth listening to, anyway. Some people just suck.

So here I unburden myself because I don’t want to carry it anymore. I do have a request of you, though, if you do not mind:

Hear this as my friends going through this too would hear it. 

When a new parent comes to you and complains of how tired they are because that little baby needs care every couple of hours, the response is one from shared experience. You may laugh a little and recall your own similar experiences. There is no shame because there is no pity, no helplessness--only community and camaraderie and understanding. 

It is often hard to share my stories because while they are so commonplace for so many others, they remain atypical for many families, too. They aren’t universal, though they happen so often. We keep our stories in our communities because we still seek that validation and community, because the tales we tell form the stereotypes that alienate and “other” our family members in a shroud of fear and misunderstanding. It is a perfect dank underground for shame to grow of situations we have no control over and humanity that deserves fearlessness. 

So I ask you to hear this as my friend Sara would. Nothing I could say would shock her any more than if I was talking about a car problem. She would say “HA! Look, let me tell you…” and launch into her own experiences with what I am going through. Because I think that is really what I need: to know above all that I am not going through this alone.

That there is nothing to be ashamed of. 

With that in mind, enough stalling. I am having trouble venturing out lately, for four distinct problems. (No, not the children. Well...nah, it’s not the kids). Some problems I have limited control over, some are behavioral that we are in the process of correcting. None of them were particularly unforeseen and the only way through it is through it, a frustrating and comforting thought I suppose. 

Of all the places in particular I want to go, church has been the hardest one and that makes me so sad because I love church and I love the people there. Two Sundays ago after service in which I gathered quite a bit of attention, I was surrounded by hugs and words of support and love and welcome; last week, an elder went out of his way to let me know how glad the whole Bible class was that I was there. And I know any of my church family that is reading this would not hesitate to reassure me or offer support, and that makes me all the sadder because it makes me love them more, but I am in the middle of the storm with no land in sight. I have to hunker down and weather it for now. At the very least, I wanted to offer some insight into my spotty attendance lately. 

Light of my life and absolute beautiful soul that he is, we all know I am talking about Gabe. 

We all recognized there would be issues around puberty because that’s how it goes, you know? What parent is sitting looking at that sweet chubby faced cherub and going “I literally cannot wait until you are my size, full of hormones and hatred for me”? Psychopaths, that’s who. Nobody anticipates their sweet lovely child becoming the most irrational, unpredictable creature on earth. Kids with special needs are no different--the same rush of hormones that transforms neurotypical kids will (usually) cast a curse upon our houses, too. The problems that arise are predictable, at least to our community as we have been commiserating all this time with others going through it. First hand experience is different and we are still taken quite aback. Knowing it is coming doesn’t make it any easier to cope with. 

The first problem is that Gabe is enormous and his diapers leak. There is no control over that--his size as a teenager is in between incontinence supplies for children and adults, which means it is difficult to get ones that fit just right. Further compounded by his diabetes that makes him urinate more than usual, I simply don’t want to make messes wherever we go. Valiant efforts this year have shown great strides in his toileting skills, but he still lacks the depth of bodily awareness that would allow for a true level of control. Wherever we go, Michael and I are chasing him around with changing pads and Resolve, apologizing profusely and struggling in vain to avoid catastrophe before it strikes. At least when he is in our house, all his bodily fluids are on things we own; it is still traumatic and stressful, but it takes the element of apology and shame out of the equation.

The second struggle is as adorably named as it is incredibly frustrating and terrifying: absconding. There are two main motivating factors that we consider when we discuss problematic behavior (at least with children on the spectrum): seeking or avoiding. What he is doing is either because he wants something and is trying to obtain it (seeking), or it is something causing him pain, discomfort, or distress that he is attempting to escape from (avoiding). We often have no freaking idea what the cause is, because running is always the solution. It happens at home and at school, when he sees an opening and seizes it. I feel like it would be more spontaneous if it weren’t so calculated--he will cause ruckus or watch until he thinks we are distracted, and that’s when he will take off. 

Several weeks ago, Tula came in to where we were sitting and told us, “Gabe is in the street”. He had figured out how to open the garage door and just left. In the two to three minutes it took us to follow, he was no longer in sight. I was wandering the streets calling out his name, Michael was driving around in the car frantically trying to locate him. 

The problem is, he might still be outside but he may just as well found an unlocked door and gone inside--he has done it before, scaring poor little old ladies half to death. Where we live, he is lucky he didn’t get shot as an intruder. In this instance, a woman and her daughters pulled over and asked if I was looking for someone, and told me to get in because they would drive me to where they saw him. This is how true crime podcasts start, but I got into the car because I was desperate. Across North 10th from where we live, about a mile from the house down on Cedar Crest, wearing nothing but a shirt and a diaper (no pants, no shoes) and running for all he was worth was Gabe. 

If those people hadn’t picked me up, I am not certain we would have found him. By the time we thought to look past N 10th, he could have made it even further, or gone into someone’s house. It makes me sick to my stomach to think about. My dad was right: you can’t take your eye off of him for a second. 

But heaven help me, sometimes you really want to. 

The next section, I debated telling. I don’t want to shame Gabriel. He is capable of the emotion--when he was acting up in church the other day, he made eye contact and kept playing “worried about what everyone else thinks of you” on repeat until I reassured him “buddy, nobody thinks anything bad about you. You’re doing just fine.” He’s still a teenager and he still worries about how others view him. No one is immune to shame.

But it is happening. And I have to deal with it; Mike has to deal with it. His school has to deal with it. If we are around you, Mike and I are going to put in heroic effort to make sure you don’t have to deal with it, but it is still the middle of the storm so sometimes we are going to fail. 

….Gabriel is a teenage boy with teenage boy interests and activities. He just doesn’t know to keep those activities and interests private. 

That is a delicate way to put it, right? I was taught a healthy amount of shame revolving around certain topics, so this all feels very indelicate to broach. But as a form of stress-relief for an overstimulated person or just because it feels good and is fun, it is something that in our world all too often expands beyond the privacy realm and becomes a very much public concern. (Remembering that we are hearing this as my friends would hear it, I was lamenting to my friend Elba the other day that I had to use the phrase “you can’t watch Barbara Manatee, son--you know what she does to you” aloud to a human person, and she laughed and told me her similar experience.)

It is human and natural and I would say there is nothing to be ashamed about, but now I want to say there is at least a *little* we should be ashamed about it, enough so that we put it away when our mother walks in the room. I take active psychic damage every time I turn around and witness such a crime scene. 

Because that’s kind of the less light-hearted issue with such a struggle, isn’t it? There are laws regarding decency that prohibit such exhibitions. I don’t want to see that; you certainly don’t, and neither do your kids. While we offer frequent reminders of “holy hands” and watch him like a hawk, sometimes you glance over and get an eyeful, and honestly I don’t think I could take the shame of that should it occur to anyone else. It is a crime under Texas penal code 21.08, though no court would likely convict him as he has no intent toward any persons that happen to be around him. Whether or not he would face prosecution regarding it doesn’t make it any more okay. A crime is still a crime.

Just like assault is. 

I have always prided myself on being able to control Gabe. As long as he is medicated properly (which is a big stipulation, but he needs the medicinal intervention because of his condition), I have spent his entire life making sure I could contain him and that he respected my authority as his mother. The mom voice alone almost always stops him in his tracks, and I watch him closely enough and know his cues well so that I can start redirecting, replacing, or removing as needs be. Sometimes it goes beyond my control, though. 

In the past few months, Gabe has far outgrown me by seven inches and at least thirty pounds. I have no idea if he is done growing, but I can reasonably assert that I am. For the rest of his life, he will be bigger than I am. And for the vast, vast most part, he is a temperate, nonviolent, sweet boy that wants hugs and kisses and to be left alone. The biggest threat he poses is when he sits on me because he still thinks he is small enough to do so. 

Then there are sometimes that he attacks me on the zoo field trip and it takes four adults to pull him off of me. 

I need to establish two things: he is not a threat to anyone else. Hell, he is barely a threat to me. That day was particularly bad because there was a mix-up with his prescription and he was unmedicated, there was a substantial change in his routine, and I felt so much shame around this classroom full of people and zoo staff that I didn’t respond like I should have. He headbutted me so hard he broke my glasses and I had to go the rest of the trip with them drunkenly hanging off my face and him walking like nothing happened. I was fighting back tears and half afraid of my own son and we all had to pretend like nothing happened. 

Because that’s the other thing--he only gets aggressive under specific circumstances. That seeking and avoiding earlier, that is far easier to track when it comes to his aggression--it is directed at the person that is causing him distress, and it stops when whatever is distressing him stops. Miss Stacia or the occupational therapist asks him to do work, so he pulls her hair to show that he doesn’t want to work because it is hard. We say no tablet when he wants tablet, so he smacks his head at us and maybe tries to pinch us. In the zoo instance, he wanted out of that unfamiliar room and out into the zoo--he was no longer going to be aggressive because we left the room, so there was no need to dwell on the action. In the special education world, they might have what’s called a Manifestation Determination meeting to see if the behavior is caused by his disability; if it is, the punishment has to reflect that. Speed running that meeting, yes his frustration and aggression are symptoms associated with autism, we move on. Maybe make a behavior plan, but more likely just try and watch for those cues and take him out before the situation devolves. 

That’s what I had to do last Sunday. We had made it through class pretty well, even though he started uncontrollably giggling thirty minutes in; I did compressions on his joints and whispered to him, gave him his headphones to block out noise and drinks, but when he hadn’t calmed down after ten minutes, I took him outside to run it off. He was instantly calm and stayed calm through picking up Tula. When I tried to take him back in to service though, he got aggressive, headbutting me and pinching me and grabbing at me, yanking my hair and on my arms. I knew it was going to get worse if I stayed, so I bundled up the kids and we went back home without getting to attend service. 

(The end of that story was that when we got home, Gabriel was still agitated. Michael met him in the hall and Gabe tried to headbutt him in his frustration. He cracked his forehead against Michael’s and I guess it made him see stars because he had to sit down after that for a while. Hard-headed is sometimes a compliment.) 

It’s exhausting. Friday I had taken all four kids to the zoo to celebrate the end of school and he got aggressive because the wait for the train was too long. Saturday I took him to Walmart to do some shopping and he got aggressive because he saw a ball he wanted. This was the third day in a row, and…I was just tired. Bruised and sore and tired of fighting this fight. 

I’ll keep fighting. And girl, you know I am going to win. I don’t have a choice--he is not going to beat me. Lately it has been hard because Michael works on Sundays, Jarrod moved away, and Amber started going to another church so I don't have the extra support. Most days, I don't need it. I don't know if you know this about me, but insecurities aside I am an actual boss. Certified tough stuff.

Sometimes, it is too much though, and I need to go back home. We’ll try again tomorrow. 

--Andie