Sick? Or Not Sick? That Is the Question.

It’s here again. Not that it’s ever gone, really, but it’s here again and I am baffled. I am sad. I am deflated. I am at peace. I am resigned. I am a mother of a son who is labeled Asperger’s, high-functioning Autistic, Obsessive Compulsive, Pervasive Developmentally Disordered, etc. It’s an elusive thing for sure. My son LOOKS typical, but tonight he is anything but.

Maybe it’s the anxiety I’m holding around some very challenging legal issues.

Maybe it’s because we’ve weaned him off his meds (definitely this one).

Maybe it’s because his other close relatives do not honor or help with his condition (definitely this one too).

I tend to blame myself first for making him this way . . . oh, wait, I do that because that’s what many of my relatives, his teachers, and society have told me. I know that it’s not my fault. How do I know? I know because my younger son is similar to that of the Buddha, and I’m simply not powerful enough to create one of each. So no, it’s not my fault. But whatever the reason through the tantrum, tonight I am feeling as if I can pathologize my son, that is to say that he is “sick.”

Here’s what “sick” looks like tonight and why I am thinking about this so extensively. I was picking the kids up from their father’s house. Someone handed me some playing cards. Michael thought it was not done the “correct” way. Because of his shattered expectation, he screamed, howled, and cried for about twenty minutes. Michael gasped and yelled threats at me. Some sounded like, “I can’t ever use those cards again.” Others were like, “I will burn all the money in your wallet, even if it is one thousand dollars.”

Crying, screaming, and threats because cards were not handed over properly.

How does this come to be?

Then we came home to my house and all was calm after a short while.

Later, after the silence and calm, we talked about what was really bothering him. The truth came out. He was super nervous about going somewhere new next week. He struggled with some things while away from me. It wasn’t the cards at all. It’s never really the cards, is it? It wasn’t the money in my wallet . . . I think we all know there has probably never been one thousand dollars in there. Sigh.

It seemed to be the anxiety he was holding, with no words or tools to get it out, without screaming about an unrelated event.

So I search deep in my brain and heart. I ask my friends. I journal.

I come to this conclusion in this moment . . . post-thoughts after a major tantrum.

I conclude that my son is not sick. I will simply, and complicatedly, say that I believe my son doesn’t have the tools to understand and work with his enormously overwhelming anxiety. I don’t believe he has the brain ability to handle certain situations that other children his age are able to.

I believe that my son is fine and that he needs patience, respect, and love. I believe that he will better be able to handle these “hiccups” as time goes on. I believe that he needs care and nurturing in those moments where he loses access to his higher level of thinking.

I believe I love my son to the depths of my soul . . . and his.

And in this moment, I send this with truth and with love, from me to you.

Tangled Again

He’s tangled again. Tangled is when his OCD is off the charts and moving a shirt twelve inches can cause a thirty-minute screamfest. I’ve talked to him this morning about the ways he hurt other people yesterday.

“Do you understand that your words hurt them?” I ask.

Tears. “But I need—”

“I will listen to what you need later. That’s not the question I’m asking you. Do you understand that they were hurt by what you said?”

“I need—”

“I know you are hurting as well. That’s so clear, sweetie. What I need you to know is that the words you used when you had your breakdown yesterday caused hurt feelings. I believe you can learn to use kind words, even when you’re hurting. What do you think?”

“I think I’m going to remove my existence from other people so that my OCD can be happy. I don’t think I’ll be happy, but my OCD will be able to control what I need to be controlled.”

And that’s a snapshot of what it looks like with my son’s self-awareness and my continued need to provide safety for everyone in my life. This journey with these different brains is baffling, difficult, ongoing and . . .

Love to all of us, including the different brainers, on this path.

Forever Being First

Today I ponder—will my life be like this for the next seven years, until Michael goes to college or somewhere else? It’s been like this for the past five years. Here’s what it looks like as of today: I’m sick, my kids are home with me (school didn’t work out as of February, so kids are home with me), and I have to go to the doctor. Kids have to come.

We’re in the waiting room for a very brief time before they come and get me. Michael has a book that he’s reading and Mason wants to look at it while Michael reads. Michael won’t let him. I am sick, so I don’t even engage in their dispute (sometimes I engage and sometimes not). They can work it out. Michael picks up a newspaper that’s on the chair next to him, finds the comics, and hands it to Mason. Neither kid is very content and continues with this strategic exchange. I’m stuck between heading back, as the nurse has called me already and is patiently watching me, and trying to keep my children from scrapping in this very quiet waiting area filled with the elderly. Finally, I just say, “Stay here, I’m going back.”

Guess what? I totally pretend, as I follow the nurse to a small, isolated, plush waiting room without my children, that I’m at a spa. The fake plastic breast totally ruins my fantasy, as does the throat swab and questions about my medication. So much for a fantasy spa break.

When I emerge from my spa, I mean my time with the doctor, Michael greets me with big crocodile tears and tight hugs and restraint as I try to look at Mason. Turns out that the paper Michael gave to Mason was today’s paper. And guess what? Michael hasn’t read that paper yet. Guess what else? Michael started to have a major freakout while I was back getting my throat swabbed because he wasn’t first at reading the comics.

“Sweetheart, I see how upset you are, and I’m so sorry for that, but you may not control my body.” That kid can’t hear me; he’s too far gone. His brain train is derailed and I’m in it. I’m sick, I feel horrible, I need to go to the grocery store, I have a prescription to pick up, and I’ve got this going-to-be-eleven-next-week kid freaking out. He’s blaming his brother, he’s yelling at me, and I just don’t know what to do.

He runs out of the doctor’s office ahead of us, which I approve. I feel like I have no choice really. Mason looks a bit out-of-it, which isn’t surprising. He just accepted an unexpected landmine that his brother so generously handed to him.

Michael and I get into this not-very-kind exchange on the way home because I’m so done, y’all. I’m done being blamed for his OCD brain thing. I’m done watching my younger son get blamed for reading something that Michael handed to him—really—that’s gotta suck.

Stick a big ole fork into me, I’m done. I drive straight home, once again feeling like a complete failure at helping my son and getting my life “done” (food for the house and my meds). Big fat sigh.

Being first still includes getting in and out of all doors first, getting dressed first, being done eating first, and apparently reading the comics first. I do not understand OCD, but I live it. And I wonder, will this be forever?

 

 

Drastic Decision

I want to share that I have made a very drastic decision in my life. I have chosen, with the help of my son and former spouse, to take my eldest son out of school for the remainder of this school year. When my son came to me (we were already seeing signs of struggle) crying one night and said completely unprompted, “If you want to see my full light, my full truth, and my full happiness, then you will not make me go back to school.”

I had already been considering taking him out. We loved his teacher, but she left. The new teacher didn’t get it. With Michael’s beautiful, heartfelt plea full of crocodile tears, there was my answer. I waited to make the decision until it was perfectly clear, and it could not have been more clear than to hear those words from my son.

My youngest son attends the same school. We will have to move through the awkwardness of pulling one child out and keeping one child in. Yes, there will be awkwardness in that. It’s a very small school. How my younger son will react and deal with it is yet to be determined. Will he be jealous? Will he be glad to have a break from his brother? Will he even notice anything is different? I know not. It will work out. It always does.

I write to say, “Take care of your children now.” The choices are hard, but I figure I only have one shot at his learning and experience. This will not be easy by any means. I’ve tried homeschooling before. It didn’t go so well, but it’s years later. I have a job that I have to keep as well. We will all have some MAJOR shifting to do.

I know that he will go to school next year for sixth grade. We already have that confirmed. And for those who do not know, my son has a label which is Asperger’s. I do not like the label, but it will help to make sense of his school issues. He had a new teacher this year who simply didn’t get it and wasn’t going to be able to serve him the way he needs to be served.

No, we will not receive any tuition back. Yes, my former spouse and I will have to spend more money than we want. Yes, I am filled to the brim with anxiety about finances and being able to be with my son for extended times . . .

And . . . and yes, my son knows that his needs will be met and he doesn’t have to be afraid or confused or anxious about going to school each day.

In love to all who parent—it’s a tough and beautiful road.

I Totally Lost My Shit

So I’m human right? I have thumbs and all and am typing on my laptop. I don’t live in a tree either. Very, very human. I also hear that being vulnerable is good for the soul, so I’m going to share my “ugly” with you.

I totally lost my shit on my son yesterday. He started it though. As I write that, I realize that I started it. I want to share so other people with kids that have different brains (or not!) can know that being human and doing human stuff is so OK.

With all the other super human things I attempt to accomplish in a day, I now have a strong desire to add exercising to my schedule. I feel heavy. I felt heavy right in that very moment. And so I kinda’ freaked out and had this spontaneous NEED to get a treadmill . . . RIGHT THEN. I had already announced that we weren’t leaving the house that evening, and by golly, words and commitments are SO important to OCD people. Not just OCD people, for sure, because my younger son was a bit rattled as well.

And to set the stage further, we were also hungry. This was just after our two-week vacation, and I still had not gone grocery shopping.

Michael said, “Chick-fil-A.” I said all the stuff about how we’re not eating at Chick-fil-A because of the profit thing (they support efforts that discriminate against same sex marriages). Then he freaked out because that was where he was totally going to get his dinner and there’s not too much negotiation when something is stuck in his mind. I agreed that we would eat at Chick-fil-A. So he starts whining and crying about how he feels guilty about eating at Chick-fil-A, but that’s where he has to eat. I tried to explain (because I was still pretty calm at this point) how a $4.00 meal wasn’t going to make much difference at all, so it was totally OK to have Chick-fil-A this one time.

He was still whiny, and I was still saying things like, “I know this is out of the ordinary, but I really want to go tonight. I’m grateful we can.” We get in the car to go. There’s road work, so the traffic is backed up to the ying-yang. I’m not sure where the ying-yang is, but it’s BACK somewhere, not moving forward . . . at any rate.

He was still whining and crying and I was trapped in this car, while he was threatening that we either go to Chick-fil-A or we get a treadmill, but we are NOT doing both.

And so, y’all, I lost my shit. I screamed so loud both my kids started crying. Mason just covered his ears and was in for another bout of PTSD when I screamed. And I didn’t scream “I LOVE YOU!” either. There were F-bombs and Shut Ups all over the place. When I got done with my crazy, Michael sniveled and said, “You could have just asked my nicely.”

And I said to that kid, “How many times, Michael? Huh? How many times do I have to ask you nicely before you actually stop crying and threatening things? Because if I recall correctly, I asked you at least four times.” Youch, right?

Oh, it turned out OK. I don’t lose my shit almost ever. It’s just, why couldn’t he hear me saying all the things about “flexibility” and “I have needs too” and “I’ll get you any dinner you want tonight” and “what do you need to make this happen?” He couldn’t hear me, so I screamed at the top of my very healthy lungs that he needed to stop. He heard me then and reminded me “to ask him nicely.” Uh, OK.

I did end up with a treadmill. There were two that were in my price range (ten-year-old versions). The sales lady said, “This is the old lady treadmill. It has maybe two features and starts out around $800. You don’t want this one.”

She took me to the next one, and I giggled and asked her, “Is this the single-mom-mid-life-crisis model?” She laughed and gave me an additional $40 discount. Score.

And Michael and Mason got dinner. They got some sour sports gum, which they had never had before, and they each got to pick out a ball. Michael got a hackeysack ball and Mason got a lacrosse ball. We went home tired and content and together and intact. Mostly.