Struggling

I am going to admit I am struggling this holiday season. I don’t know why I just know it to be true. Something is happening within me and the turmoil is real.

I hate my life!

Yes. You read that right! Please don’t come to me if you read this and try and tell me all the reasons my life is so awesome.

This is not the life I wanted. This is not the life I dreamt of. I don’t know how I ended up here, but the sooner I admit the truth of the turmoil inside me – maybe it will stop.

Now don’t get all. “Oh my God, you wanna kill yourself!” I didn’t say that. I said I HATE MY LIFE!

I do. I hate the fact that I lost two kids before I got these two kids. I hate the fact that my kids BOTH MY KIDS have all these effin weird assed special needs. I hate the fact that I had to have an abortion after all that I went through. I hate the fact that my ex turned out to be a MAGNIFICENT disappointment, and continues on that route day in and day out. I hate the fact that he doesn’t help to support his special needs kids in any way shape or form. I hate that my ex inlaws think that they can tell me what to do with and about my kids. I hate that my parents do NOT get the fact that my kid has autism and is differently than just “some bratty kid that doesn’t want to brush his teeth!” I hate the fact that my brothers and I don’t talk. I hate the fact that I couldn’t attend my nephews wedding. I hate the fact that my two best friends live on the OTHER SIDE of the country. I hate that I am lazy. I hate that I am so undisciplined. I hate that I have no time. I hate that I’m so tired ALL THE TIME. I hate that I am so far in debt I may have to claim bankruptcy. I hate the fact that there is no easy way out for me. I hate that my parents didn’t make me exercise as a kid. I hate the fact that the feel of sweat dripping down my body grossed me out to a level I never knew existed. I hate that many people who say are my “friends” are simply just colleagues or acquaintances. I hate the fact that I the man I just want to have mad passionate sex with is married. I Hate that the IUD I paid a fortune to get in has BARELY been used. I hate that I had to run to the store tonight because I had nothing in my house to make for dinner. I hate the fact that I still think of a past love that left me as much as I do. I hate the fact that I started to think putting food delivery on my credit card was the end all be all response for my “issues.” I hate the fact that I struggle so much with my faith. I hate that I do NOT understand the Bible better. I hate the fact that I try to talk to Jesus and he never responds. I hate that I don’t see a future in my future. I hate the fact that I can’t drink anymore. I hate that I have lost who I am. I hate that something as easy as taking a shower is so difficult. I hate that I am in so much pain all day, every day. I hate that no one can SEE the pain that I feel all day every day. I hate the fact that I can’t even BEGIN to tell you all that I hate about my job. I hate the traffic I have to deal with in this town every day. I hate our government. I hate our president. I hate all the me. Who think it’s ok to just whip their penis out when they are alone ina room with a woman. I hate the fact that I actually had the though, why NOT #MeToo What’s wrong with ME? I hate the color of my hair. I hate that I am addicted to Diet Coke and these incredibly delicious yet salty Amy flower seeds. I hate that my kid is sick again. I hate that she has to deal with epilepsy now. I hate that the meds are so hard to get just right. I hate that the farmers market guy didn’t have all my basil I needed. I hate that I have to listen to YouTube blah blah blah after youtube blah blah blah. I hate that one chicks voice that my daughter listens to. No grown woman should sound like that. I hate that I had to put the boot back on today. I hate that everything is so fucking expensive now. I hate that I have no where to turn. I hate that I hate so damned much in my life.

So yeah. I hate my life. This is so NOT where I thought I would be at 48+years old.

No. I didn’t proof read what I wrote. I just HAD to get that out.

I HATE MY LIFE

~me

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We Try

Everyone talks about the joys of raising children. Everyone knows there are hard times and how many times have we heard “but the joys make it ALL worth it!”

I will bet money every time a phrase like that is uttered it is done so by a Family who have very typical children.

The rest of us are struggling. Struggling every single day to just make it through. We try. We really do. We TRY to believe it will ALL be worth it in then end but right now, in the midst of the struggle it is hard.

It is hard not knowing why this pill makes your daughter puke once with no warning, rhyme or reason. It’s hard then having to drop everything you’re doing to go take her out of school for the rest of the day because school policy states, if you vomit you leave. It doesn’t state, if you vomit because your epilepsy pills are assholes, you can stay. It doesn’t matter if what you, as the parent was doing was getting your first hour of actual good sleep since you yourself has been down with a fever and bronchitis for 7 days. and it doesn’t say, it’s ok, you have peed through every pair of underwear you own. It doesn’t matter that walking to your car makes you feel as though an elephant is sitting on your chest.

It doesn’t matter that it all happens on the day your daughter can NOT miss her show choir rehearsal because this is THE DAY when competition set placements are being handed out. The choir she’s dreamed of, worked so hard to be in, today is the DAY!

Then it doesn’t matter that 30 minutes later the same pills that made her puke have her now so hungry she devours a one pound black bean and cheese burrito and a half a bag of spicy nacho Doritos and she feels fine.

It doesn’t matter that the second trip to the car to take her BACK to school for rehearsal starts a coughing fit so bad that it takes you six minutes to get it to stop and she’s almost late.

It doesn’t matter that your autistic son is have an “autism wednesday.” Yes. It’s true, there is “something” about several kids I know on the spectrum and Wednesday. Wednesday and autism are simply not friends. There is no rhyme. There is no reason. There is just autism.

None of this matters when you should be home asleep and “resting” as per the doctors orders but you are running all over town. Not to mention the guilt and need to be working during this crazy time at your job in television.

Is it ALL going to be “worth it” some day? I sure hope so. There are moments when I like to believe yes. But days like today make me wonder what it’s ALL for.

I am an incredibly faithful woman but some days simply push me to my limit, and yet…. I try.

~me

There are some days when being a mom of a boy with autism is challenging. What turns challenging into frustrating is when you have to battle Family as much as you have to educate the general public on what it means to have a boy with autism. What turns frustrating into maddening is when Family who know just enough to get themselves in trouble, begin to tell you what’s best for your boy with autism, like “wouldn’t it be better to just not let him play with other kids?”

Yes. THAT HAPPENED.

So, kids, with nerf guns, at a party, are being little (I won’t use the word I so WANT to use right now) “aggressive,” not following the “rules” that the hostess made a giant deal about when there were 5 kids there, and no adults are doing anything about it, because, “they’re doing it to everyone.” The behaviors are deemed acceptable and my child is just, and yes I quote, “really sensitive.”

Yeah F YOU!

Then, to have now labeled “really sensitive” kid’s grandmother say, “well maybe it’s best if he just doesn’t do these things” is just mind blowing to me.

Yes, of course I tried advocating for my son. What’s MORE important is my son, ADVOCATED FOR HIMSELF!

So if you have ever read any of my writings you know I am a person who HAS to find the positive part of every story, it’s what allows me to live in this horribly depressing universe with horrible and depressing people. I find the beautiful sunset just before the dark kinda girl!

So here it is. Not so long ago, if my kid had been shot several times in the face/neck, laughed at, and teased relentlessly, he would have lost ALL control in a split second instant and beat the living crap outta that kid. (Impulse control issues) OR depending on the hour or minute of the day, he would an uncontrollable meltdown (hello autism) heard in the neighboring states. Neither of which happened.

When it got to be too much and he was done with them trying to rip HIS gun out of his hand (which they were not doing to the others), when he was over them cheating during the game (staying in when they were out, stealing bullets, etc) and when his words stopped working (hey, don’t shoot me in the face, dude) he simply, walked away.

“Mom, can I please just sit here for a little bit, and take a break? This (pointing to the nerf course set up) isn’t working for me.”

Self-Advocacy for the point.

He articulated everything happening in there and that he felt it wasn’t nice or fair.

Articulation, impulse control, advocacy for the safety and empathy for others: point, point, point, point.

“Ok Mom, I am going to give it another try wish me luck!” He put on his safety goggles (with OUT being told to, mind you) and went back in. Point. Point.

“Ok yeah, no Mom, this isn’t working, can I please just go get my iPad and sit out, oh and I’m hungry, can I please have some pizza?”

Point point point

“Of course!” I quickly replied to all three very well articulated requests.

But that’s not all

After playing on iPad, after eating, after breathing… HE WENT BACK IN! 3-point SHOT lil man!

I’ll admit he wasn’t in long. During this last trial, is when the “they’re not being mean, they’re doing it to everyone,” and “he’s just so sensitive, what’s that called? Sensory overload?” comments all started flying. And that’s when we decided, TOGETHER HIM AND ME, it was time to leave the party.

Point total = A WIN!

A while later, talking about it with his grandparents, is when I got the question, “well wouldn’t it be better for him to just not do those things?”

No, you see, kids like that will have to deal with kids like mine, for the rest of their lives so if I hide my son they will never learn that there is no price to being kind to someone who may be different than themselves. If my son doesn’t spend time with (a world I don’t want say here) like these kids he will never learn that there are mean people that HE will have to deal with his whole life.

You see darling Grandmother, much more was gained here than lost. Did you see how when he had a problem he came to an adult got help? Did you see when he couldn’t take anymore he didn’t hit someone he instead chose to “take a break” did you see that he spent 20 min on his iPad alone instead of the WHOLE PARTY? did you see, did you see did you see????

“yeah, so? What’s the big deal, why do you always make a big deal over what is just normal?”

And this is where MOMMY’S SELF-ADVOCACY kicked in…. “common kids, it’s time to go!” Mommy needs to leave!

As a special-needs mom, there are times when you have to throw in the towel. There was NOTHING I was going to say at that party, or with my mother that was going to change anyone’s perception, so it was time to walk away.

In the car ride home, both kids said, now we know why we’ve never been to any of our cousin’s birthday parties, yeah, his friends and their parents are just mean.

Later, my little man asked me as we said our nightly prayers, “mom, why didn’t ANY of those parents make those kids stop behaving like that and make them follow the rules?” I simply replied, “I don’t know, honey, but I am SOOOO proud of how YOU behaved today! You made YOUR Mommy, very proud!” Then we prayed for more kindness and tolerance in the world.

~me

The EEG

I don’t know where the beginning is. I don’t know when or how or why we started down this slippery slope.

Today my daughter had to have 25 electrodes hooked up to her head to monitor her brain.

That’s not normal. No matter how “common” the doctors tell you what is happening to her it is.

As her mother, watching your baby, no matter the age, be hooked up to electrodes monitoring her brain is not easy. Neither is watching them induce her to a catatonic state, over and over, and over again.

It is not normal for her to be laughing joyfully at her youth group one minute and slumping over in the seat of the car the next then getting so dizzy she can’t walk herself to her room once we finally arrive home from the five minute drive that seemingly takes HOURS to complete.

This is not normal.

It may be, doctor man, “common”, but it sure isn’t “normal.”

So…. yeah…I’m gonna be kinda a bitch for a while. While I try to wrap my brain around what’s happening in HER brain.

Just DEAL with it.

No, I don’t need you to do my actual work job for me. I can literally do it in my sleep and I have, remember the pancreatitis attack of 2007? I do. Or the two c-sections in which I nursed and worked from home? Yeah, I do. Or the endless calls to pick up my child from school during the REALLY bad, pre-medicated child, days when he almost choked a kid to death. Yeah, handled my job then perfectly fine… in fact… QUITE WELL!

So yeah. I can do my job, I can be a mom. I can be sad, and still manage the workload.

But it doesn’t mean I have to do it with a smile and be happy about it.

Again…. deal with it!

In the meantime, I’m gonna pop another Diet Coke and bag of chips, eat a cookie or few, bury my fears and guess what… this is how I’m dealing with it!

Because the alternative, wouldn’t be pretty for anyone. Especially that poor girl laying there not even realizing how her brain is completely betraying her right now. Maybe it’s better that way cuz watching, knowing, ughhhhh it’s HARD!

I’m dealing with it.

~me

Now this

Right when you start to breathe and think, “ok, I’ve got this!” God laughs and says “Ha! Silly Woman! You think I’m done with you?”

We are now dabbling with the FIFTH neurological diagnosis amongst the two kiddos. This time it’s Epilepsy. Absence Seizures to be exact.

Have you ever see a robot just stop. The lights are on but they just STOP? Yeah. That’s what it is like when you watch your child just STOP right in front of you.

I have never felt more helpless in my life. I’ve never felt more to blame in my life. I’ve never felt so less in control, so frustrated…. IN. MY. LIFE.

I know we will too get through this, I just really wish we didn’t have to.

I pray this is the path to recovery but that doesn’t mean I have any interest to stop and take in the sites. No… if it’s okay I think I’d much rather just drive as fast as I can and get through the rough patch of road.

This mama’s pedal is to the metal.

I’ll see you on the other side when I can breathe again.

~me

Yesterday Was HARD

I have not written in a while. Like a LONG while. I got swept up in life. The never ending circular patterning of keeping going. I have so many thoughts, so many feelings. Never enough time to write them here. I have time, don’t get me wrong but I realized I have to be in the proper “head space” to be able to write here. I can’t write here cuz I have to write another blog post today.  So things happen. I think about them, and want to write about them then oh look I have 17 drafts and no completions on my site. 

That’s life. 

Another reason I have not written here is because I started a closed facebook group for all my “supermom” friends with kids who have needs. It was just easier. I’m sure many of you understand that right? You just sometimes wanna talk to the people that “get” it. The parents you don’t have to explain the difference between a 504 plan and an IEP. You wanna talk to the ones who see your life, the REAL life, the ins and outs of the day to day. The people who know what brand of chicken nuggets to keep on hand in case your son comes to “hang out.”

So that is why I have not written here. I’m pretty darned sure there is not a single person who cares that I have not written here. I’m also pretty sure I’m just emptying my brain here but this brain has been holding on to so much for so long it needs a good dumping so sorry ’bout it… HERE IT GOES:

Yesterday SUCKED. 

It sucked so hard I had forgotten just how hard it COULD suck. 

That’s the good news, right? That it has been SO LONG since my boy had a full blown paint off the bus MELTDOWN that I had forgotten just HOW BADLY they SUCK.

It sucked HARD. 

So here is where we are. Steve has turned 11. Steve has a YouTube account for his video game play and he has 400+ subscribers. Some of his videos have been seen over 17K times. SAY WHAT NOW? (pvzfan 24 if you wanna check him out on youtube). 

Steve is also transitioning from elementary to middle school.  The transition is going well. I really can’t complain until yesterday. Even then, I can’t complain.. I mean my child has autism, meltdowns are going to happen. It is just part of the package. But this one was unlike any other. This time, he refused to talk to me on the phone. In the past, he would always at least hold the phone up to his ear and I could talk softly. I could tell him its okay buddy, I’m coming soon. Take a deep breath. Grab hold of something. Hold it as tight as you can until I get there. Stay put, don’t run off. I’m on my way. Deep hugs are coming and most importantly…. I LOVE YOU.  

This time…. all I heard from the yelling in the background was  “I DON’T ‘bleep’-ING WANNA TALK TO HER!!!!!!!!!!!!!!!!!!!!!!!!!!!!”

So I ran. 

You don’t know me so you don’t know that I am not a healthy weight. You don’t know how hard it is for me to move. You also have never seen me move as fast as I did yesterday. My boy needed me. This was uncharted territory. THIS WAS BAD. 

We are at a new school, he didn’t know where was his “safe place” to go. 

We are in a new daycare, they didn’t know what he was going to do.

There are all new daycare workers since we’re in a new daycare, he didn’t know who he could trust. 

There are all new kids, none of which knew or understood what was happening nor could help. 

IT WAS BAD.  ALL BAD. 

Meltdowns are hard. Meltdowns in new environments, with new support people trying to help but not knowing how, and new kids staring at you like you are a freak, is excruciating. 

So yeah… YESTERDAY WAS HARD. 

So… now what. Right, “Today is a new day.” “Look how far he’s come.” “Wow, aren’t you glad those don’t happen every day anymore.” “So, you’re good, right? He’s good, you’re good?”

Ummmmmm Yeah… NO. NO, I AM NOT GOOD. 

I am an utter mess. I couldn’t sleep last night. I couldn’t cry cuz my daughter and I now share a room and I can’t let her see me lose it. This is gut-wrenching to hear your child in so much pain and being a 20 minute drive away.  To have to start over and explain moment by moment what you’re doing and why your doing it so the daycare staff can learn a new trick or two. Am I telling them enough, am I telling them too much.I don’t know what I’m doing, I’m the only one who knows what to do. I thought we were passed this. Are we ever going to be past this?and on… and on… an on. 

Today… I am tired. 

Steve, Steve is fine. He just called me after school to tell me what a GREAT day he had. He and his buddy got into a fight and the other kid kicked him. 

Well okay then, glad it was a “GREAT DAY” lil man. 

Siiiiigghhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

~me

Now is not forever

So much has happened in the past six months and it’s happened at a speed in which I have been unable to get off the crazy train and write. However today, today has been so monumental that I must. I must stop the crazy train and talk to you, anyone who will listen. Anyone who can hear me. 

As anyone who has ever read my blog knows, my son Steve has had a long road. While our adventure has been different than many, it has still been trying, for us. Steve has autism and ADHD. Steve has been through years of intensive ABA therapy, speech therapy, OT therapy, SDC classes etc (me too!). Steve has also been mainstreamed more socially than educationally. Steve is also a person who has never stopped growing in all the ways a child should grow. He’s just done it at his own pace and on his own terms. 

Today, today I saw just how much Steve has grown, and it slapped me across the face. Steve, this summer, is in a day camp with kids between the ages of 11-14. He turns 11 in a few weeks. It’s really more based on grades, when you promote from elementary, it’s advised that you move to this middle school camp level. So I did. I moved him. I did so knowing full well that the structure that is available in the elementary camp is not there as much in the middle school camp. In “Plus” as it is called, the kids have more freedom to KINDA do what they want. They are not made to do anything. If a counselor or two decide to take a group on walk, you can go. If you don’t want to, that’s cool, you can stay back at base. If you want to swim on swim days, great. If you don’t, no problem. While that is Heaven for Brooklyn, I knew this may be a challenge for Steve. Steve often needs to be pushed. 

Then there are the PLUS field trips. Bigger, bolder, more adventurous. Steve would have to start carrying a wallet to camp for example. They walk to local restaurants for lunch, for example. He would have to keep track and of his own things. No counselor is going to do that for him now, he’s in middle school. “This will be good training for REAL middle school,” I told myself. 

First day of camp, he dropped the wallet he was holding in his hand instead of putting it in his backpack, while scootering there. It has a $200 check in it made out to the camp. This is going to be interesting, is the thought that kept rummaging through my head. 

Well today was the biggest test yet. Today, Plus took an all day field trip to our local Six Flags. He had to keep a wallet on him with enough money for the day (we are talking CASH, $50+ dollars- lunch, dinner, water, snacks, and a small souvenir) and not lose it. He would be in a group of boys in which he would possibly have to do things he may not want to do. He would have to remember to reapply sunscreen. He would have to remember to pee and eat without being told. There are so many things. I didn’t even realize some of which he would have to face until he returned home. 

Steve returned home and patiently, quietly waited for Brooklyn who could neither be patient or quiet while talking about her day and what her group did. 

When it was his turn he told me how after every ride he “made sure” he still had his wallet. How he went on the biggest ride in the park because he remembered me telling him, “you’ll never know if you like it if you don’t try” and “just try it once, if you don’t like it you don’t have to ever do it again.” Then telling me, “Mom, I wanted you to be proud of me so I just did it! And you know what? It. Was. Awesome!!!” He compromised with his buddies and did things he didn’t want to and they did things he wanted to do too. 

He told me how he then told himself when he saw the next ride that looked super scary “aw, com’mon Steve, you can do it, you did that one!” And he did it, he went on ride…. after ride…. after ride. Big scary roller coaster rides at Six Flags. 

“Did you eat lunch?” “Yep,”he replied. “Let me guess, your standard cheeseburger and fries?””Ha! Yeah mom, you know me so well, and it was delicious!”  Delicious? Wow. Ummm ok. 

“Hey Mom, wanna know what else?”

“Yes, I really really do,” wiping a couple tears from the corners of my eyes. 

“I didn’t even spend all my money so I have done for the next field trip too!”

Yeah. I may have lost it right then and there. As my favorite blogger, Diary of a Mom, says…. NOW IS NOT FOREVER, AND FOREVER IS A LOAD OF CRAP!

My baby is growing up and boy are his wings beautiful. He did it. He did it wonderfully, and full of pride. Yep, my baby isn’t a baby any more. Fly lil man, you are going to fly!!!!!

~me

This is the souvenir he brought home. The cutest Flash in the whole wide world. Then he said, “Look mom, your Flash was there and he was just too cute, I couldn’t stand it and he reminded me of you!” Andvyep, that’s his wallet right there next to it on the table. Phew!