Netflix and cry

atypical-netflix-760x450_cLast night my husband and I started watching Season 2 of Atypical. We watched a few episodes and experienced the same rollercoaster of emotions as we did when watching the first season – no surprise there. When we turned off the T.V. and tried to sleep, we both lay there in silence, unable to shut off our heads. My husband is a man of few words, and it is often a mystery what goes on in his head, but this morning when he got to work, he sent me a text message with some insight.  “What am I going to do when I can no longer throw Giancarlo in the air and spin him the way he loves? What if people are mean to him at school and he doesn’t know how to defend himself? It broke my heart when he told his sister that he wants to take care of her sometimes… we forget Giancarlo is older than Rosalia, don’t we?” The little hamster in his head had been pretty busy, it seems. These are the questions that led my anxiety to spin out of control a while back. Until recently, I was the worry-er and he was the eternal optimist, reassuring me that everything would be okay. Of course, Giancarlo will be able to work when he is older. No, you won’t have to wipe his bum till he is in his 20s. No, why would he get bullied? Denial.

One of the hardest things about going through the different phases of acceptance regarding Giancarlo’s autism is the fact that we went through them at very, very different paces, and it nearly tore us apart as a couple. When I was desperate to learn everything there was to know about possible and impossible treatments, I stayed up reading studies all night, went to conferences, tracked down professors and doctors abroad, managed different therapies and a multi-disciplinary team, both in the public and private sectors, I did it alone. I worried alone. I broke down crying in the shower, my office, in the car – alone. I have been so consumed by the tsunami of thoughts and worries that I have been unable to catch my breath. When I was spiraling out of control, gasping for air between two of Giancarlo’s violent meltdowns, my husband didn’t see me. He didn’t see my mind race ahead 5 or 10 years when I will no longer have the physical strength to overcome my son lashing out at me and then crawling into my arms so I rock his over-sized body back and forth, back and forth, back and forth as I weep.

But last night he got a glimpse of that because of that show on Netflix, and I imagine that other viewers will, too. They will see how a family like ours can be torn apart because we all deal with the challenges of Autism in very different ways. They will see how hard it is for someone on the spectrum to wrap their heads around the simplest things we take for granted. They will see how the siblings struggle with, embrace, and reject their role.

I am both excited and apprehensive to finish watching the second season. Partly because I don’t want it to end, partly because I know I’ll ugly cry, but mainly because although I relate to it on so many levels, it brings up raw, intense emotions. And it gets my husband to express himself better than any therapist I’ve been able to find, so I’ll take it!

 

Run away with me…

When the going gets tough, I fantasize about running away. The first memory I have of this is when I was about 6 or 7 and my dad and uncles went to the farm for the day around Easter time, and they brought me home a “pet” baby goat. I will spare you the details, because I don’t want to deal with pissed off animal activists (my brother is vegan, so I have heard it all before)  but I abruptly discovered that the baby goat would be Easter dinner. The betrayal, trauma, sadness, disgust, and anger were so great that all I could do was pack a bag and leave. They found me at my neighbor’s house later that evening. I never ran away again, but I have wanted to countless times, and even moreso as an adult.

Sometimes, it is the innocent fantasy of a luxurious tropical vacation when dealing with the reality of winter is too much to handle, but other times, the fantasy is not so light. In recent years, dealing with my explosive and energy-sucking daughter and all the mindfucks related to raising a child with autism and hyperactivity disorder, I have taken daydreaming to another level. It’s not something I’m proud of, but I often find myself wanting to pick up and leave. Checking out. Giving my husband no other choice but to figure it out on his own. When it’s not so bad, I sometimes even look into a weekend getaway with a girlfriend that I don’t really intend to follow through with, but more often than not, it’s a nagging thought when I am driving alone, on my way to pick up my daughter from daycare. Keep driving. Don’t go get her. Go somewhere. Anywhere but home. They’ll be okay without you. I am so ashamed of the thoughts that spiral from that voice that I cannot even bring myself to type them. On those dark days, I fantasize about running away alone.

In recent years, whether I fantasize about spending a month in an ashram or hitting up Miami, it rarely includes my husband. How sad is that? When we were young and in love (well, at least I was young), it was nearly our mantra. We were freakin JLO and Marc Anthony, all Escapémonos tan lejos de aquí, Distantes de todo, En la oscuridad donde no haya más, Que ver en tus ojos… fast forward 10 years and my fantasy is to get away from him?

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Until yesterday. In the thick of the darkness in my clouded mind, I yearned to get away from it all and be on a terrasse with him somewhere in Europe, people watching and sipping on a stiff drink. With him. Like it was once again him and I against the world. As though I could once again let myself be convinced that when he holds me in his arms, that everything will in fact be okay.

I need to let that last line sink in a bit. It’s been a while since I’ve let myself fantasize that everything will be okay. That daydream is too painful to snap out of.

But when I snapped out of this one, my first reaction was to try to make it reality (then I realized we have no money to spare and I am scheduled to be back at work next month)… I proceeded to tell him about it and he enthusiastically offered dinner and drinks in little Italy as a consolation prize. The reality was that I had to turn that offer down too, but it felt good to pretend, at least. It felt good to want it. To dream it. To believe in my husband enough that I want to let him in on my secret escape. To run away with me…

Hello darkness, my old friend…

I knew this was coming. The darkness.

When school ended and summer began, Giancarlo had a hard time adjusting to the transition to a less structured environment and his meds were fucking with him so I was inconsistent with them. I was tired and high strung, so he was high strung, and it led to about 2 violent meltdowns a day. I ran on adrenaline for those 4 weeks, and I neglected to take care of myself, so I knew that once Giancarlo started day camp, I would crash. It’s my pattern; once I have a chance to breathe and rest and let my guard down, the darkness creeps in.

Today was Giancarlo’s third day of camp and the darkness didn’t waste any time. It “snuck” up on me the way kids try to tip toe to your bedside at night but you know they are coming before they make it to your door… I couldn’t keep it away. I can’t let that get to me. This time, I am treating the darkness like a relative staying for a visit. I knew it was coming, and although I don’t know how long it plans on staying, I know it’ll leave, so I have the upper hand. Every other time, I was so afraid that it would get so comfortable that it would just stay forever, but now, I am confident that, like a storm, it will do its damage, but it is temporary. The wave will pass and I will breathe again without it being a conscious effort. I will once again be able to be alone without falling apart. I will be productive again. I will not listen to someone take care of my children in another room while I am lying in bed fantasizing about running away.

I know what I can be doing to make the darkness feel uncomfortable and start packing. I had a plan. I had yoga classes booked and appointments set up… but the darkness threw me a curveball, the sneaky shit. It either took advantage of, or paired up with a bout of vertigo, and of course this lovely depressing weather.

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But I still see silver linings. And the universe hasn’t abandoned me. Giancarlo makes sure I see the rainbows and he makes sure that he induces a good ol’ crying session when he feels the pressure building up inside me and we both explode together. Ironically (or not), today he kicked in his wall because he couldn’t get the rainbow in the game he was playing. It was much more intense than that, but I was in such a haze and it was all so much to process that right now that’s all I retained. Rainbow. Rage. Sadness. And then my son cradled me in his arms. My 6 year old beast comforted me after he kicked in the wall beside his bed.

Soon the darkness will pass. But until then, we are gonna cover it up with a Thomas the Train poster and we will drudge through until brighter days come again. Because they will.

Because I finally found some balance (and other reasons why I’m terrified of going back to work)

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Last night Giancarlo woke up at 3:40am and didn’t fall back asleep. At 5:20 we were in the basement and he was body painting. Part of my burnout from work was due to the fact that, on top of my anxiety, depression, and all the stress of having a freshly diagnosed preschooler and a fiesty toddler, I continued going to work and teach a classroom of teenagers despite having many such nights, sometimes in the same week. Severe sleep deprivation fucks with your mind and body in a way that is very difficult to explain. This morning I was fortunate enough to send the kids off, cancel the yoga class I had signed up for, and I went back to bed. Yup. I sent Giancarlo to school even though he has been up since before the sun rose. Why? Because I learn from my mistakes. Firstly, he functions much better on no sleep than I do. Secondly, in the past, when I have kept him home under the pretense of having him take a nap, I usually end up pinning him down in bed to no avail, and spend the rest of the day putting out fires because he is overstimulated, and because, in my exhausted state, I do not provide him with the structure he needs. On those days, I look and feel like a terrible mother. At least , when he bounces out of the van at 4pm, I will have some fuel and patience in me to be the mother he and his sister deserve (for the most part), and I will not be as short tempered, irritable, lazy, or full of rage as I would have been if I had either kept him home, or, heaven forbid, gone to work. I am terrified of having to do that again.

Sleep deprivation is only one of the factors makes going back to work so scary. My energy is so fragile even if I sleep “properly” (it should be noted that the nights that neither of my kids wake up are very rare). I have regular appointments with my doctor, Giancarlo’s social worker, Rosalia’s special educator for her anxiety, a nutritionist to help me with the weight gain caused by my meds, my therapist, a spiritual guide, yoga… then there are the errands associated with keeping a full house properly furnished and meal prep… and on the rare occasion I see friends, it is usually while the kids are in school… and this new lifestyle has taught me that I can live again, versus simply surviving as I had been doing for so long. It sounds dramatic, but it feels like if I had to fit work into the mix, I would be giving up my life.

But I can’t say that to people. Friends that I have lost touch with seem to need reassurance that I will re-enter the workforce, as though it gives them great comfort and pleasure to know that I will have a normal life again. But my life will never be like that of a regular working mom. I don’t think any of my other friends spent the other night wide awake googling strollers and harnesses for a 90 lb 6 and a half year old because they can’t take him for a walk without him running into the street. I doubt any of them live with the guilt that they nearly got their son killed twice in the same month. And how many of them, when they are working, have students come to confess their dark secrets on their breaks and lunch hours? How many of them sat with a trembling, sobbing, preteen who confessed to having suicidal thoughts. How many of them work with that and then come home to an autistic son and a daughter that demands constant reassurance and attention? But that makes people, even “friends” uncomfortable. Hell, it makes my own father uncomfortable and he lives in the same house. Everyone seems to want reassurance that everything will fall into place and I will go back to work when summer is over… and what? Suck it up? Deal with it until I can’t deal with it anymore and I crash all over again? That’s what I am most afraid of. I don’t want to return to that darkness.

What I know for sure is that the decision to go back to work or not weighs too heavily on me… so much so that I want nothing to do with making that choice. I have told my doctor that repeatedly. The decision will be hers, and ultimately, God’s. God’s. Because there is a reason for all of this. Because my transformation over the past year is not for nothing. If I have learned anything, it’s that my plans mean nothing. I have surrendered myself to His plan… How is that for making people feel uncomfortable?

Put on your mascara and slay

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At the beginning of my sick leave, I would avoid public areas for fear of being seen by one of my colleagues. I felt guilty for being well enough to go to the mall, but not well enough to work. I was afraid of being judged… so I wouldn’t put eyeliner or bronzer, fearing that if I looked too good they’d think I was a fraud, but if I would forgo the concealer and mascara altogether, everyone else whose path I crossed would think I was stepping off the set of Walking Dead (which I have never actually seen btw). I would wake up every morning asking myself if I would have been okay to teach, and if I was in fact a fraud.

I wasn’t at my lowest when I stopped working. I had gotten back to a point where I was able to recognize that if I continued that way, I would never make it to 40. I had kept working through my lowest point. In fact, I kept doing EVERYTHING while I was at my lowest, and I am still paying for that. Adrenaline, high levels of cortisol, autopilot, coffee, and meds go a long way. What got me through those days was work. It was putting a face on every morning and going to do something I was good at, while the rest of my world at home fell apart. At that time I felt like, despite not being a good enough wife, daughter, friend, mother, therapist, nurturer, etc… at least I was a good teacher. I couldn’t control my children, but I had control in the classroom. The students I taught that year when they were in 8th grade just had their last day ever of high school.

Last night I was having a conversation with a friend and colleague who is on the prom committee. In the 13 years I have taught at this school, I’ve never ever felt compelled to go to prom, because by the time they graduate, the students usually forget about the English teacher who did a mediocre job at getting them to speak a second (or third) language three years prior. This is the first year that I wanted to be there, because those monsters hold such a special place in my heart. They lifted me up when I was crashing, and they had no idea. They changed me just as much as my son did… because they molded me into a more human teacher. I cried with them and I may have even said a few inappropriate words to them during the classes when, for the first time in my Type-A career, I said “to hell with the lesson plan” and sat on the desk and spoke with them as people. We were going through hard times together, and that gave me purpose. Seeing them on prom would have been a celebration of not only their success, but of my own journey. But I am not allowed to go. Because I am on sick leave, and if I am not well enough to work, I shouldn’t be well enough to go to a party, apparently.

I know that it’s more complicated than that. I know that administration supports me and my struggles. I also know that they need to protect themselves from the judging eyes who would tear me apart if I showed up with my eyelash extensions, red lipstick and glammed up hair. If that one night, I did exactly what I had done every day I taught those kids, which is to show up and give the best of myself, I would be judged. I get it. Despite mental health awareness initiatives, most people don’t understand how you can simultaneously fight debilitating demons and yet paint a face on and walk into a room radiating with your head held high. They don’t know how many days you will spend lying in the dark afterwards to recuperate, and they don’t know how good it feels to feel alive while you’re rocking it, albeit for a fleeting moment. So I am not bitter because I am not allowed to see my little monsters on their prom… and instead, I did my hair today and put real clothes on and strutted into my workplace with my head high and asked for a few minutes of class time, on their last day of school, to speak to those students from my heart. I stood there bravely as I bawled my eyes out in front of them. Brave, because I was terrified. I tell my daughter all the time that being brave doesn’t mean you’re not afraid, but it means you do it despite your fear.

I dodged most of my colleagues, because, honestly, I couldn’t face them. I left with a heavy heart, but my soul felt lighter and brighter. Those kids will face the real world with the knowledge that although some people are fighting a battle you have no clue about, you can be their guiding light just by being yourself. That sometimes, what gets you through the hardest days is just showing up. That it’s okay to crash. That it takes bravery to say what you feel, and that those who judge you may win the fight at the moment, but the battle is yours to slay.

Feisty, Five, and anxious

My daughter Rosalia has her daycare graduation on Wednesday. She promised that she will sing and do the choreography that they’ve been practicing for months. I’m not getting my hopes up. This is the same girl who refused to budge in dance class because she was afraid of doing the wrong move. She literally just stood there and gave everyone the stank eye. Following her first swim class, she declared she wasn’t going back, and after an hour of discussion, I discovered that it was because the instructor had asked her to do something she had trouble with, and she didn’t want to disappoint her in the future. Her therapist says it’s performance anxiety. Yup, my five year old sees a therapist for her anxiety because it’s that bad.

This is also the same little girl whose sassiness puts my smart mouth to shame. At pick up one day last week, I asked her “What was your favorite part of your day”, because I had read one of those posts somewhere about the best alternative questions to “how was your day”. Most days she reluctantly answers with one detail then makes the effort to politely tell me she doesn’t feel like telling me about any more. That day she barked “Well I dunno what the BEST part was, but the WORST part is when YOU came.” Yup. (And yes, there was a teaching moment and a consequence that followed for all those who were quick to judge).

My daughter can be both the most confident, eloquent, mature, and feisty little thing you’ve ever seen, and in the same morning, she can be paralyzed by her own insecurities, anxiety, worry, or whatever else it is that flips her switch. This morning started with the regular attitude. She was asking me a series of some useless questions like most kids do, and I was tired and annoyed and didn’t provide adequate answers for your highness. At one point, I answered “I dunno Rosalia!” Cue Miss Sass. “Oh so the Great Mommy doesn’t know everything afterall!” (complete with head jerk, raised eyebrows and winced face) She literally said The Great Mommy.

Fastforward 45 minutes later, she is hanging onto my neck like a baby chimpanzee, begging me not to leave her classroom. Hyperventilation and all “Don’t leave meeeeeee”. She’s been going to daycare for 3 years. You would think drop off would have gotten easier. Now at this point, my patience is in the negative and my anxiety is making me an irritable time bomb, and, as per the therapist’s suggestion, I am sharing my feelings with her. “Mommy is getting close to her limit, Rosalia. I don’t want to get angry, but I don’t have a lot of patience left. I know you have an ugly feeling inside right now, and I do too, so we need to find a solution, and the hugs aren’t working”. “DOOOOOOOON’T GOOOOOOOOOOOOOOOOOOOO!” 12 kids and 3 adults staring to see what my next move is.

 

I grab a marker and draw a purple heart in my hand, then do the same to hers. I press her purple heart into mine and tell her they are charging, and I try to sound as convincing as possible when I say that it’s filling my heart with love and making the ugly feeling in my heart go away, and if she concentrates hard enough, it’ll work on her too. “IT’S NOT WOOOOOORKKKKINNNNNGG. DOOOOOOOON’T GOOOOOOO!” I scrambled some more and showed her that when I miss her, I will squeeze my palm and I’ll be hugging the spot where our hearts touched, and she could do the same. By this time she had stopped hollering and I was able to calm down, and she asked me her usual questions like “promise you won’t forget to pick me up” and other worries caused by her anxiety that need reassurance, and off I went.

Her therapist, who is excellent, made an interesting observation. Rosalia’s separation anxiety is strongest when I am not well. I had a terrible, miserable day Saturday and yesterday I had to be ‘on’ all day as I was hosting a shower, and I was fragile and emotionally drained, and I desperately needed time to recharge and recenter. Rosalia felt that and reacted, subconsciously, by needing to be close to me to make sure I’d be okay. If I analyze every time her separation anxiety has acted up to dramatic levels (and trust me, I have) it has always been when I myself have not been well.

And so with this knowledge, comes great responsibility. Giancarlo is also an empath, and feeds off my negative energy too, so my family’s peace depends on mine. I have to tame the monsters in my head before they call out to and provoke the little monsters and we all lose control. And that is the shitshow we lived for a few years in this house. No parenting books or mood stabilizing meds were able to fix that. It’s a work in progress and it starts with me. And that is a heavy load to carry.

he doesn’t look autistic…

20180607_205205Those eyes. I remember when those eyes first met with mine the second they yanked your scrawny body out of me. I wish I could say it was love at first sight. I so wanted it to be. But it was more like mutual fear. It’s been six and a half years, yet sometimes we still lock eyes in the same way.

Last night in the bath we had one of those moments. In between a series of scenes from Caillou that you were re-enacting with your usual abundance of joy, you drifted off into deep thought, then looked at me, and your look pierced through my soul.

You didn’t look autistic in that instant. What does that even mean? I know there is no LOOK to autism. I repeated that to all the people who scrambled to say something comforting after learning about your diagnosis, and awkwardly offered, “but he doesn’t look autistic!?” Yet, sometimes I see a glimpse of a non-autistic you. One who would tell me about your day and have a conversation with me. A you without timers and pictos and medication and therapy. A you who will definitely graduate high school and possibly have a family one day.

Anyone who knows me or follows my social media knows that I advocate acceptance and awareness, but the truth is, if I could take away your Autism, I would. In fact, when Rosalia asked me the other day if I could have any wish, what it would be, and I even hesitated to tell her, because I want her to love all of you, disorder and all, but my heart needed to say it. I wish there was some exorcism we could perform to evacuate its presence. but then, what would it leave behind? Are you so great despite your autism, or because of it? Can we separate your challenges and limitations from your beautiful empathy, the purity of your soul, your insane memory and your mischievous laugh? I wouldn’t trade those things for anything, and I love you just the way you are. In fact, I couldn’t possibly love you any more, so how could I wish you to be something you are not? You are perfect. Just the way you are.