Bedtime

9:50 pm : I don't want to be touched at all. I am someone who needs time alone to recharge, and right now? I don't want to f*cking be touched. And at the same time, I want to spoon him and stroke his hair and fall asleep with him curled up in my arms.

It messes with you- the conflicting feelings.

I have read in multiple places on the interwebs that parents (more so mothers than fathers- dunno why) of kiddos with extra needs experience stress levels equivalent to that of combat Veterans. I could totally see some validity in that, but I also really think that shit is relative. I have been managing Bub's care his whole life all on my own. Through any relationship I've had since I've become a mother, I have still been the one and only person to coordinate care and fight for services. Part of that is my mommy martyr showing, but I've never been willing to compromise his care to spare someone else's feelings.

10:00 pm : There is a toddler foot kicking my ribs right now, because I'm typing this in bed as some kind of hail mary, therapeutic, cathartic, I don't even know what. STOP. TOUCHING. ME. KID. His freaking fingers are wrapped around the strap of my tank top, pulling, scratching me as he opens and closes his fist, and then has just decided to slide his hand down and grab my thigh in his fist- which is COVERED in stretch marks and causes the most remarkable pain that feels as though he will quite literally tear my skin open.

What was I saying? Oh. Stress levels. I work a full time job with crazy hours. I usually work 7 days a week. Some of those days I only work three hours. Some days I start at 5am, work til 8 am, work 11 am to 2 pm, work 630pm through to 6 am the following day. Nope. Not making that up. IT. IS. MADNESS. I am a student at a local community college because my father might loose his shit if he has to tell me one more time that a degree is the only way out of this rat race. AND my role as Bub's momma? Don't even get me started.

It is the most privileged, humbling, rewarding, terrifying, exhausting, and magical thing I think anyone could experience. It's not easy. Not even close. I got home from the gym around 8:45, took over for my ex, took my dinner into my son's bedroom, and started to eat it as quietly as I could, because if he knows I'm near, he tends to fall asleep faster. Random and unrelated? Maybe. But it also gives me a head start if he bolts out of bed.

His bed- I opted for a full size mattress for a few reasons. First, there was enough room to build a pillow wall to keep him from rolling out, and still give him enough room to spread out. (yep. wWAS. Past tense. WAS enough room). Secondly, I thought the extra inches would allow for me to lay with him when he was ill or just couldn't sleep, saving me the aches that I got from the nights I spent in his crib with him. Third, it wasn't that big of a price gap. YET. Despite all of that, I'm perched with one ass cheek on his bed and the other hanging over the side, balanced on my leg that's contorted under me. If I leave he will come running after me. If I try to reclaim some mattress territory- well, I'm in reach of those strong, only-well-meaning fingers, searching for comfort.

I am human. As much as I fancy myself super advocate mom- I am not. When you have a 56 pound toddler using every single tactic in his arsenal to get out of bed, it can fucking hurt. Managing this behavior while not injuring either one of us is nearly impossible. He will fling all of his weight at me, trying to scratch or bite me because that's his only way to communicate those feelings right now. He will come up into a headstand-like position against the headboard where it meets the mattress, and try to hyperextend his neck. His little neck that I made from scratch. And so, I try to hide my panic and my frustration as I ask him, "Can I help you calm your body down?" when all I'm really thinking is "Cut it the fuck out, I beg of you just fucking stop that shit". And I falter. Often. I tell him to 'stop', and 'cut it out, please Liam just stop that crap'. And what follows is the most heavy blanket of guilt that immediately envelops me. My huffs and frustration melt instantly into remorse and fear that I'm screwing this whole 'Momma' thing up. And soon, my 8:45 turns into 10pm (Now, 10:30) and I am at my wits end, only wanting to help him. Only wanting to know that magic secret sauce that will allow him to relax enough to give into sleep. And then he starts effectively beating me up again (I say that only because that's my experience). When I haven't had enough time to take care of myself or the shit I need to do just to make sure things run around here, it translates to my patience with him. And so while he is yanking fist-fulls of my hair out by hanging on it, while kicking and biting me. I'm doing everything I can not to react. Of course the moment I say "would you just let go", those all too familiar feelings come creeping in. Momma guilt is a stupid villain. AND for the record? This is not ALL of who Liam is. Not even CLOSE. He is the most kind, loving, and intuitive kid. I call him my sage boy. Speaking of which, that toddler foot kicking the shit out of my sore ribs just started gently prodding, as if to figure out if I'd push him away, while gently rubbing my arm with it, because I'm out of reach of his hands. Nah, he got me. He put his little hand on my arm and pulled my hand to his head wanting me to stroke his hair. NEWP. Back to the foot on my arm.

I'm doing my best. And tonight it doesn't feel like enough. Tonight I wasn't patient enough because I wasn't rested enough, or supported enough, or met my own needs.

I want him to feel safe.
I want him to stop swatting at me with full force.
I want him to fall asleep.
I want him to stop pinching my stretched out painful skin.
I want him to give in to his exhaustion.
I want to fix his GI problems that cannot possibly be helping the situation.
I want him to stop kicking my ribs as hard as he can, because they are SO sore from working out to try to stay strong and healthy enough to care for him in the way he needs.
I want him to hold my hand without digging his nails under mine.
I want him to let me rub his back for more than ten seconds before popping up laugh-screaming.

And right now?

I just don't want to be touched, but I love feeling his foot on my arm, knowing that it's giving him some small comfort.

January 18th

My father had suggested earlier this day that I find a 'facility' who could take me sweet four year old. He meant well, so as much as I wanted to fault him, deep down, I knew his intentions weren't malicious. I called him, upset and in and out of panic attacks over an increase in rumination. I hopped on Facebook and shot a message to my friend.

My friend wrote, "You are in the hardest part right now, and you are surviving." She just gets me. She helps ground me when I spin out in fits of unease and unrest about the unknown of our future.

"And when he's an adult, he likely will live away from you, in a community based home. This isn't forever. He will be an adult and move out just like all adults do."

One of my absolute favorite people, badass mama friends, and former coworker in the field of developmental and intellectual disabilities sent me that message on January 18th of this year. And it felt like someone hit me in the stomach. Not because the idea of him leaving me one day upset me but because it was the first time anyone had labeled his future 'out loud'. I started our journey with Autism in denial, and until that moment when I read that message, I'd had this hope, that he would figure it out, and figure out a way to communicate and he would still be a successful doctor-teacher-scientist. But for whatever reason, this matter of fact phrasing.. it hit me. Hard.

And she is right.

My son is now four and a half. He is non-verbal and signs for a few preferred things. Let's just be real for a minute. I will always have hope that I will hear him say "I love you, mama", but he tells me that in other ways. I truly think I've come to an acceptance about that part. His relationship with me? I'm pretty much at peace with that.

But right now? I worry about his relationship with the world. He's growing up, and the older and bigger he gets, the more evident the divide is. And there are not enough people who can bridge that right now.

I'm putting it out into the universe right now. I WILL MAKE A DIFFERENCE FOR HIM. I will do him proud. I will fail. More often than I succeed maybe. But I won't give up, and I'll give myself grace. Because my big boy, he deserves the world.

And in the words of my sweet friend, "It scares you because you are imagining Liam NOW, moving out. He's going to have more skills and be an adult. You are rocking it. Even if day to day you feel like you are just surviving." So, if anyone reading this is a fellow autism mama, you are rocking it.

My Mama Salary

Okay. So humor me here for a minute. IF a special needs advocate makes $68,000 in New York, New York according to Indeed.com, that means they make $32 and hour and change (For a 40 hour week). Not bad. But the thing is, that mamas and daddys of kiddos with special needs are doing similar jobs, with a pay rate of $0.

Let that sink in for a moment.

Today I spent three hours on the phone with two different providers. I have been fighting THIS fight since September. How many hours have I spent on the phone in that time? How much would someone with the title of 'Advocate' have been paid?

I will never stop advocating for my son, but I want people who don't get it to understand is this. IT'S A DAMN LOT OF WORK AND IT'S EMOTIONALLY TAXING. I mean no offense when I say this, but it's got nothing on trying to schedule your kids extracurriculars or figure out which baby sitter to hire. So with that being said, imagine a 40 hour a week full time job on top of that? Keeping the house in some semblance of clean, or at least not total squalor? It's a damn hard job, this Mama thing.

So to some it may seem annoying to have to keep making these calls. But on my side of it? I thought I solved this problem three times, and in the meantime I've shelled out hundreds of dollars on things that should've been covered by our insurance. It feels something akin to standing on the roof of a train as it bumbles down the tracks, shouting to a train on my right, and then passing that information along to the train on my left. I think I'm being clear and articulate but they have a whole schedule of stops and passengers who need things too. So I won't ever have their focus. It feels like shouting underwater. I can try as hard as I want, but ultimately, there are others (the water in this metaphor) that get in the way. I can try as hard as I want, but my pay out isn't measured solely by the effort and grit I put into it.

So with all that effort expended, I'm supposed to find time for myself? To make sure I have a full cup to pour from? Pft. Oh okay. Sure.

Enter The Miracle Morning, the latest book I picked up. Give it a read, I'll review it soon. But let me just say this. It was 429 when I woke up. And I didn't go back to sleep. AND I feel rested. So I'm thinking it's a good one.

So any fellow sped mama's out there. Hold your head high. Hang in there. You're doing a fantastic job despite any setbacks you may be encountering. Deep Breath in, deep breath out. Now go start your day and buy that book!

Belonging and Curved Edges

It's all we want, really. To feel like we belong.

Belong in our families, in our relationships, in our workplace, in our environment, and fuck, just in the world. Just want to find where our niche is, and then rock the shit out of it. It can't just be me.

For a long time I've worked in the healthcare and home services industry. Developmental disabilities, mental illness, elder services, and the like. And I've learned so SO much. I've learned about myself more than anything. I've learned what I'm capable of, and most importantly, were it is I feel like I belong. And that's serving people. Helping people.

I've worked for someone else since I was 18. Building someone else's dreams by following my heart, and that was okay. It was what I was supposed to do because I didn't go to college. I was supposed to get a job and work. And the universe led me to the field of my dreams. It was demanding!

I was excited though. I'd been exposed to the world of special needs in elementary school, through a friend who's brother was profoundly affected, then volunteered as an aide for a class with students with special needs in middle school, and just kept seeking any opportunities I could. So when I drove past this school for kiddos with developmental disabilities, I thought, "well, I might as well apply". But something pushed me to do more. I decided to volunteer while I waited to hear about my application. And that, my friends, is what I believe landed me the job. HR came down one day, saying she didn't realize I was the same person who had applied, and why don't I come up when I was done for the day. Long story short // hired.

Little did I know, a couple of weeks in, I got pregnant.

So just when I finally felt like I was in a groove, and I could make it on my own, and make money doing a job I really loved, I missed a period. And I wasn't the kind to miss periods. It was the 8th pregnancy test that finally confirmed it for me. Knocked. Up.

And that little ol' sense of belonging slipped out of my hands just as fast as I'd caught it.

In the meantime a co-worker told me about another company he worked for, serving individuals in small group homes of two or three. Applied. Interviewed. Hired. Boom. Double income doing something that I really fucking loved and was good at to boot. So when the home I worked in lost their manager, I was reached out to, and asked if I would be interested. It took everything in me not to shout, "You bet your ass I do!" My gosh, things were falling into place in my professional life!

But my personal life was falling apart. My relationship with my soon to be son's father was tenuous at best. Unhealthy and unsalvageable, yet I wasn't ready to give up. So I coped. His father and I.. we were like two puzzle pieces you force together in every different way JUST to make sure they really don't go together before giving up. Our weird and curvy pieces weren't the RIGHT weird and curvy ones.

He and I didn't belong together. And I gave it all I had to be sure, and that is a big part of why I don't wonder. I'm not curious about what we could've been, or if I made the right choice by walking away. I needed to find a place where my son and I belonged.

Fast forward 4 years, two moves, two states, and two more jobs later, and I'm finally feeling that "yeah, this feels good. This right here, it feels like where I'm meant to be" again. Is it perfect? NO. Big fat NO. Haha, but it's pretty damn good. I have a lot to be thankful for, and even more to look forward to. I know it won't be easy or pretty or storybook-like. But one thing I'm pretty sure about is that I belong here.

One of my weird and curvy edges fits here. Without forcing it. Fits. Belongs.

7 Months In

I should compose a proper update. One with details, and time devoted to sharing what I've experienced and felt in the past seven months. This post will undoubtedly be updated at some point and this little speech removed, but until then.

I'm making it through.

WE are making it through. I've been working really hard at letting some things in my life go that weren't serving me, and I've gotta say, there's something to this living your truth thing ;)

That's all for now.

Much love
Erika

Christmas Stocking Gift Guide

OH my goodness! It's already December!? I'm one of those people who shops last minute. I don't budget or plan or strategically shop the sales to get everything on my list. Maybe next year.

I put together a few things you could get the woman in your life to put in her stocking. These are just a few things that caught my eye! What would you ask for?

The first few things are from Sephora, shocker! 

This Josie Maran Argan Sugar Balm Body Scrub is AH- MA- ZING. Talk about spoiling yourself. If the woman you're buying for is anything like me, then in the cold New England months the dry skin is insane. This stuff is one of the only things that helps my skin stay moisturized. 

Then you have the Glam Glow Supermud Clearing Treatment. I've been really into skincare since moving to Massachusetts. The weather changes have been really hard on my skin. Sephora's website says it more concisely than I can. (This formula was clinically developed by GLAMGLOW® dermatological chemists to help fight all common skin concerns including breakouts, discoloration, black and white heads, razor bumps, and in-grown hair. Powerful, skin-clearing mud visibly draws out dirt and congestion while a proprietary six-acid blend dramatically brightens and softens skin. It works to magnetically draw out dirt and pores with Activated-X Charcoal, leaving skin smooth and healthy-looking.)  In my words? It helps the mess of things that my skin does when it freaks out. Seriously give me anything by Glam Glow. Speaking of anything... 

This duo of Poutmud Fizzy Lip Exfoliating Treatment and Wet Lip Balm Treatment is incredible. So incredible, in fact, that lately the website can't keep it in stock for more than a few days at a time lately. Grab it while they have it, and sign up for the email alert so they'll nudge you when they get it back in stock. 

Tarte, oh how you have my heart. Not as much as Glam Glow does right now, but their products are out of this world. This mascara pumps my short straight lashes up so much. It's almost like my favorite loreal one, but this makes my lashes longer, fuller, and bonus? The waterproof formula helps keep the curl in my lash all day. 

Now if you wanna get something a little more personal, I'm in love with these necklaces. Anna Saccone recently came out with a zodiac sign line. Her father passed down a pendant like this to her. She was so inspired that she made her own line of all the signs. This one is my son's sign. If she doesn't have kids, get her yours or her sign. The chains come in 3 lengths. Personally I'm a fan of the shortest one, but it all depends on her style. They also come in a silver and a rose gold. So cute!

Another jewelry option is Pandora charms. Whether she has a bracelet or not, these little guys are perfect to go in a stocking. My hubby to be and my son pick one each for me every year. It's a tradition I've come to treasure. I can wear this bracelet every day and no one knows the meaning of my charms. These Minnie and Mickey are on my lust list right now. Not a disney fan? (what the hell is wrong with you! --kidding....kind of --) They have others as well! 

Last, but definitely not least, are the Dreamer Flannel Pajamas from Victoria's Secret. I love these plaid ones, because they feel so festive to me. But there's also a print called 'Tis The Season' that calls to me. They have non holiday ones too if you're looking for something a little different. 

What's on your list? Do you have any go to's for small filler gifts? Let me know what they are!!

An Open Letter to the Father of my Son

Hi,

I don't even know how to greet you. Hello seems much too formal for someone who I share a child with. Though, maybe that's a good thing. Keep it unemotional. But how do I keep it unemotional? Maybe 'hey'. Nope. Too nonchalant. A letter of this gravity and emotional weight shouldn't be preceded by a 'hey'. Your name? No, it's been too long since we've communicated. Just sounds....unfamiliar.

You know, he's going to be three on Saturday. He's this whole person already. He's starting to come into his own. I see an adorable attitude emerging. He's rambunctious, like you. In the 1090 days I've spent with him, I still find any resemblance to you unsettlingly painful. I am left with a myriad of secret longings, which I would, of course, never tell you about. I would like to see pictures of you as a baby, a toddler, a schoolboy. Did he look just like you? Because in my baby pictures, I see so much of his face. I would like to visit the place where you come from, drink wine with your parents, to take a photo of you and I. If I were him, I'd want a photo of my parents together. Mostly, though, I want to know why you're not there for him, why he won't receive so much as a post card from you this weekend.

Anyways. I wonder what you're feeling. Right now, in this moment, and in all the moments of all the days since I last saw you.

Did you shield yourself from feeling pain when we moved so far away? Did you feel overwhelmed and stripped? Like you didn't know what you were supposed to do anymore? It's okay, you know. It's natures way of shielding you from feeling it all at once. Did you know in your heart that it was for the best? Did you take it personally? The more you thought about it, the stronger you were getting. If you knew it or not, you were getting stronger.

Were you angry? Angry at me for moving, for giving up on our relationship? Because he could've used you sticking around. I hope not, because you know we weren't getting along, and because your relationship with him shouldn't be affected by your relationship with me. Because he deserved your effort. Are you angry that you don't know him? Are you angry with yourself? If you are, don't let it keep you away. The door has been and will always be open. Please, if even the smallest part of you wants to, take the opportunity.

Did you run through the 'what if's and the 'if only's? I can tell you that there's very little merit in regret, but maybe you needed to think those things. Maybe you needed to process everything. I hope it didn't just find fault you or I, or what you thought should've been done differently. I'm sorry for the hurt you must've felt. He is a beautiful, smart, weasel-his-way-into-your heart kind of kid. I can't imagine what you felt.

Are you sad? Saddened because you aren't going to be here? Because you haven't been? Because of everything you've missed? Because of everything you will miss? His strong, soft little fingers tugging on your shirt, his shy smile hiding below the edge of the crib, with just his baby blue eyes glimmering at you from his dim room. His sloppy, wet, perfect kisses. His belly laughs, discovering his skills. Hell, mastering those skills? Feeling him sleep next to you. Hearing him sleep next to you. Are you sad because you didn't experience those things? I know we talked about them. I know you were excited.

Are you hurt? Hurt that I made it difficult by moving? Because you didn't stop me. Your phone calls and messages got fewer and further between. Your family stopped sending him gifts, then cards. Are you so hurt that you said things about the mother of your child, that you probably shouldn't have said? I hope not. Did I hurt you in the process of doing what was best for our boy? I didn't mean to. I really sincerely did not mean to.

I hope you wallowed for a while. I hope you allowed yourself to experience those feelings. It's the only way to get through them. But I hope you didn't let it destroy you. When he goes looking for you, I hope he finds a good, kind, accomplished man. I hope you don't let your time away from him slip away from you. Do something worthy of that gorgeous boy asleep in his bed right now.

I don't think I will ever understand why you removed yourself and your family from his life. Even if I were the absolute worst human being on the planet, he's still your son. You were there before he was born, feeling him kick, coming up with names. You put his crib together with me. You carried baby gear into the house. You were there when he was born, you were there when I was up all night sobbing because he wouldn't latch on. You were there singing inappropriate music to him and dancing that shimmy dance to 'Black Betty'. You changed his diapers and fell asleep with him, giving into the exhaustion. You dreamed a whole life for him.

How could you walk away from that?

What would you want me to tell him about you? What would you want me to say about you, when he asks? Because he will. I will answer his questions, and let him make his own mind up about you. Maybe you'll be back in his life by then. Even if just in some minimal way.

You have a beautiful son. One that has your ears. He's happy and healthy. I made sure he always had what he needed. Doctors and therapies and interventions (because you weren't there for the diagnosis, and the rollercoaster involved. I could've used you there. He could have used you there), I made sure he had them all. I fought hard for your boy. I will always fight for him. But I can't ever fill the void you left, no matter how hard I try. And I will never be able to tell him why you're not there, because to be honest, I can speculate, but I have no fucking idea.

So, I hope you're good. I hope you're happy, and achieving, and pursuing your dreams. I hope you're using your time to better yourself and be worthy of the son you don't know. Because he deserves that. I hope you're not hurting or sad. I hope you wonder about him. I even hope you worry. After all, isn't that what fathers are supposed to do?