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

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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! 

Tears

I started crying today… while speaking to a friend who knows about my life and my kids but doesn’t REALLY know because, well, you know.. its not her life. I started to cry. I started to cry because she said to me, “Do you realize,          you have a case.”

I didn’t want a case. 

I didn’t want it to come to a case. 

I just want people to do the right thing. 

Why is it so hard for people to just do the right thing?

I am going to call the woman she asked me to call, not because “I have a case” but because the woman she wants me to call, she lives a life like mine. She will understand the terms when I say them. She will know what I mean by the words “I don’t want a case.” She will talk to me about her experiences at one of the schools that is being offered to my child. She will listen and understand. 

If and when all of that is over, and I want or need to do more, that contact can help me there as well. She has sued the district several times and won. She is a lawyer. She helps people all the time. She can help me. 

If I may have just been given the saving grace of God for my son, why do I feel so unbelievably afraid?

 

~me

Why is it so hard?

Why does it all have to be so hard? 

I am pretty frustrated at the moment. I think I’m upset because up until now, we’ve actually had it pretty easy. We have gotten what we needed for our son with some elbow grease but not needing advocates, and lawyers, and what not, you hear so many people complaining about in the Special Education community. 

I am not saying we have not had to hold our ground and not let the school district push us around, but for the most part, when we showed muscle, they backed down. 

My lil man, well he is now transitioning to middle school. He is almost done with the 5th grade and we are trying to work with his IEP team to find the right fit for him next year. This time however, we are dealing with ego’s and agenda’s that have nothing to do with our son. His current SDC teacher has been pushing the district to create a program for kids with behavior issues in the middle school (and possibly high school environment) for 3 years now. What an admirable thing in my opinion. I think there SHOULD be a program like his in the middle and high schools. Absolutely. I just don’t think my kid should be in it, and especially because it will be at that school. Yes, I said “that school.” I have heard horror stories about how the student body treats kids with special needs, and how the administration doesn’t really do anything about it. It is a culture at some schools, to treat Special Education students with lack of empathy and no respect, and thus, the fight. 

I think this program my son is in now, the one they want to start in the middle school, has done wonders for him. I also feel like it has possibly restricted him in some ways the past couple of years. However, because I can not clone my child and run him through both paths at one time to see which one is best, I have to trust my gut. 

The current program was a pilot program. My son has been in it for several years. Five to be exact. First through now 5th grade. The program has adapted and changed along the way. However, at some point we feel it has failed our son. I can’t tell you the exact moment it happened. I don’t think it happened intentionally. I surely, don’t think it happened with malicious intent. I do not blame the teacher or administration for the fact that it happened. However, I am a realist and I can not ignore the fact THAT IT HAPPENED. Somewhere along the line in this pilot program, my son missed his window to seperate himself from the group of kids. They all came into the program together, they are all giving the same guidelines, homework, and treated the same… Somehow.. his IEP turned into a GEP (GROUP education plan). ONE out of the 5 of them moved to full time mainstream only,  ONE. There was a moment when our son could have been moved, we asked that he be moved, they chose NOT to move him. We didn’t fight it, we should have fought harder. We didn’t. 

So now, here we are. 

At a point where I have never been more perplexed about what to do in my life. 

I do not know WHAT to do. Literally. I am frozen. I am frozen in fear, I am frozen in worry. I am frozen in self-doubt. I am frozen in blame, and shame. I am frozen in every single possible emotion that is available to me for I feel as though my child’s ENTIRE future is riding on this ONE decision: What program is best for Steve, at which school and at what level of engagement. 

There are times when I just want to explode. Like literally, internally com-bust, the pressure is so much. Pressure from so many sources. My kid, even though he has no clue he is doing it, pressures me into doing what is best for him since he can’t do that himself. My ex-husband, again unknowingly, puts pressure on me to do all the research and to “know everything” and inform him as to what is the best path. My ex-in-laws and the family…. I can’t even get STARTED on how much pressure they put on me.  My own family who literally has NO CLUE about what I am even going through raising my two kids with ADHD (and my son who also has autism). The pressure from the school and the IEP team who only shares PART of the information with me, then expects me to make corrections and additions. None of this even compares to the amount of pressure I put on myself. 

I just do not see why it all has to be so hard.

There is a child, who is named Steve, who has learning disabilities, several of them. Steve needs help with his education. Period. Why is it so hard to find what is best for Steve?

It all seems so simple to me, so why do we all have to make it so damned hard. Well you see now, his teacher , who is the leader of his IEP team, wants him to continue in HIS behavior program because that’s how he positioned it to the district, THESE KIDS, need this program, they are all moving on to middle school and will not survive without it. And while yes, my son DOES have some behavioral issues, they are now 90% or more concentrated in the area of academic unpreparedness (remember i mentioned ego’s and agenda’s, yeah that!). Steve no longer, rolls on the floor and can’t sit still and listen to the teacher. He does listen for the most part, at least that’s what his daily behavior report is telling me. He now has a harder time staying engaged and focused in class and getting his ideas in his head out onto paper. The “behaviors” have come to virtually none in a day, or even several weeks. So I am not seeing how a behavior program is suited for him anymore (especially when said Behavior program, is at a school that does not take seriously the treatment of its Special Education members, as I’ve been told by MULTIPLE people). 

Would this program be a better option if it were located in the ONE middle school in the district that has the BEST handle on special education I have ever seen (I’m not kidding, EVER SEEN!). Absolutely, however… isn’t there always a “however,” – that school already has a Special Education program for Autism. 

So I look into THAT program since my son also has an autism diagnosis. 

Only problem, that school wants and needs the recommendation of his IEP team for the program. The IEP team who told me, they didn’t even know a single thing about that program in the district and who are pushing their OWN new program and who basically told us that if we opt not to put our son in this new program, that his life will be completely ruined and he may even get kicked out of school because that is what has happened to some of the other kids they’ve seen. Yeah, THAT IEP team. You think THEY will make the right choices for my son? (ok I’m taking a breath now… breathing innnnnn breathing ouuuuuuuuuuut… sorry about that! I digress). 

Ohhhhhh… But wait… I thought WE were “members” of the IEP team? Do “We” not get a VOTE on this? And As his parents, shouldn’t our vote count MORE than your vote? It is just so darned frustrating. 

Why does it have to be so hard and complicated?

 

~me 

 

The Almost Teen Girl And Her Issues

fiji

(Photo is of a Cabana I wish I was in, right now, in Fiji with my cabana boy Matthew sipping Pina-Colada’s)

I don’t know why I have such a hard time with my girl. Maybe I am just supposed to be having a hard time with my girl. She is after all, about to turn 13. I’ve heard this is when it is supposed to start. But is it? Is it just now starting?

I feel like Brooklyn and I have been at odds since she was born, like LITERALLY. I have been blessed with overly large breasts and my whole life I said, “Well, at least I’m made for breast feeding!” Out came Brooklyn and guess what… she wouldn’t, couldn’t, didn’t breast feed. Finally after fighting with her and my breasts for a long torturesome 8 weeks with Lord KNOWS how many “lactation specialists,” I said I give up and gave the girl a bottle. She won battle #1. She has won every battle since. At a certain point I just can’t fight with her anymore. 

She doesn’t do it on purpose. Truly, I know this. My heaven’s though…. sometimes I truly feel like she’s out to kill me. I can laugh about this since this girl is also the girl who wants her mom by her side as much as possible. 

So here we are… on the brink of her teen years. She is a smart girl, but she has challenges. We now know she has ADHD and more truthfully, ADHD with Anxiety Disorder. She worries… about EVERYTHING. No matter what you say, she has 4 reasons why that won’t work already lined up and 8 more are coming right behind it, yes, even if NONE of them are even a tiny bit logical. That is frustrating as all get out. 

For example, if you say, “Brooklyn, talk to your teacher about not understanding that math problem.” She will say “She won’t talk to me, she’ll be to busy with every one else’s problems, then Johnny will step in front of me, then it will be time to go to the next class and then Mr Broo will be mad because I was late.” – Um WOW.. you know all that now at 6:30am and you have not even been to school yet? “Yes, MOM, jeez, you jut don’t know.” That’s usually when I start rapping “Parent’s Just Don’t Understand” by Will Smith, she huffs, puffs, rolls her eyes at me and slams the door. I start laughing. Apparently though, its not a laughing matter because then I hear “IT’S NOT FUNNY, MOM!” To which her autistic brother looks at me and says, “Its kinda funny, mom!”

Other times, outta the blue I will say things like, “Brooklyn, you know it has been found that people with ADHD do better in neat and highly organized space. So why don’t we fix your room so you can be in a better space to help you.” Sometimes, she yips YEE HAW cuz she knows that means we get to go shopping for new buckets and bookshelves and what not. However most of the time, it is ok fine, we do it and within a day or so its all a chaotic mess again. 

Mind you, I am not the neatest person in the world. I’m messy. I always have been. For me, its a matter of being lazy. I do it… but when I have to (like if someone calls and says hey we’re stopping by in 10 minutes!). However, for Brooklyn, it is much much more. She has executive functioning issues that keep her from being able to see past this very minute. I try and help her, “Hey Brooklyn, lets set up a daily to do list to help you stay on track so you don’t forget about that Science experiment that’s due in a month.” We spend the time together setting it all up but then in a week I ask, “how is that working” and find out – she never used it. Maddening. 

I have tried, and tried and tried. I am out of options. I do not know what to do. I want to give up. Like, all the time, I want to give up and just walk away. Parenting a child with special needs is hard, real hard. Parenting TWO kids with special needs is damned near impossible. Doing it alone with no help from your ex-husband (which is pretty much one of the reasons – biggest reasons- he IS your ex-husband) is damned near impossible. 

I want to give up. 

Brooklyn and Steve are at their dad’s this weekend. I had a moment, was on my computer and realized I had not looked into the grade portal in a while. Knowing Brooklyn was out sick this entire week from school, which in middle school is a death sentence anyway, I knew it wouldn’t be pretty, but I was not prepared for what I saw. WOW, those grades are TERRIBLE…. like SO TERRIBLE that she could get put on academic probation and not be able to perform in the show choir competitions, kinda terrible. Which if you know ANYTHING about Brooklyn…. telling her she can’t sing… you may as well stick a knife in her heart. How the HELL did that just happen. I swear I JUST looked at this portal a couple weeks ago. 

So now, here I am, beating myself up again. 

You know, mom, that EVERY kid you know at this age (which is a lot) is working harder than she is. You know, you’ve given in and let her be on her phone, watch youtube too much. You know, you’ve “suggested” she study more but have not pushed her. You know, you’ve given up… why are you so surprised she’s here? Yeah the whip is pretty long this time. 

I want to give up even more. I want to hop on a plane to Fiji, lie on the sand with a pina-colada and a cabana boy named Matthew. I want out. 

Oh wait, I can’t hop on a plane to Fiji. I can’t sit on the beach drinking Pina-Colada’s and I really can’t have my cabana boy named Matthew. 

WAKE UP WOMAN…. you’re a mom!

So, I have a decision to make. Am I going to blame the girl and her issues or am I gonna wake up, pull my head outta my ass and help her? Clearly, she can’t do it alone. Nor at 12 should she have to. I guess her biggest issue… well… IS ME. 

I don’t know how. NO, I mean I REALLY don’t know HOW to pull it together. How I can be that amazing SpEd Mom to BOTH of them at the same time, especially without Hermoine’s magical time turner thingy jiggy (man I could really use some magical powers about now, JK ROWLING if you are reading this).

BUT I HAVE TO…. for if I don’t… who will?

Time to print some more “To-Do Lists” and “Reward Charts” and try again. 

~Me