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!