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

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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

The IEP Prayer

We all do it right, the IEP prayer the night, week, month leading up to an IEP. You know the one, “Dear Lord, please open the teams mind, heart and soul in order to do the best they can for MY child.”

Wait… am I the only one? Can’t be. Please tell me I am not alone here. 

Anyway, here I am again… praying. This one… though… honestly… I’ve never prayed harder. 

This IEP, on Thursday, this one… it is a transitional IEP. Steve is winding down his time in elementary school and is about to head off to middle school. WOW, that’s scary. It is scary not just because the time has flown unbelievably fast bye my eyes, but scary because Brooklyn’s been in middle school now for two years and I feel as though I have a pretty good grasp on what life is like there. To be honest, that scares the CRAP outta me for Steve. 

Generally, Steve needs low levels of support. He can dress himself, he can use the restroom on his own, can get his own lunch from the shelter while at school, and so on. However, when it comes to his academics, well this is where his need for support lies. I’ve seen the work load handed to 6th graders out of the gate and I’ve seen Steve’s current work product sent home. Steve still needs support a lot of it, but not in the ways many others need support. Steve is an individual…. I guess this is why they are called Individual Education Plans.  So, lets be honest, it all starts with his executive functioning skills, or lack there of. So that’s what sent me off on my latest IEP prep spiral, how do I help him with his deficits with executive functioning.  

What’s that? Com’mon first you don’t know the prayers and now you don’t know the spiral? I can NOT be the only one this is happening to, Honestly, TRUTHFULLY… hello… Bueller.. Bueller… Is this thing on?

Well yes… It is true… for this IEP the usual spiral turned into the DEATH SPIRAL, but….ok so, well,  I ended up spending well over 150 hours researching, learning, figuring out, and taunting myself with the most amazing information I could find. This time, one thing seemed to lead to another. More great information after more great information. I stumbled on the holy grail of missing puzzle pieces, I met other mom’s in other parts of the country who have legal support on speed dial. Man oh Man I was gonna get this one RIGHT! Mama here was a dog… with a bone. Nothing you are gonna do can stop me. I am going to be the best, most informed parent at this IEP meeting that you have ever seen! (Really, you still don’t recognize the spiral?… Fine!)

It helped, it really did. I did learn a lot of new things, like how to write better IEP goals. I look back at my son’s previous IEP’s now and cringe. I wonder, how did I think this was okay. How did I think this was going to help him? It really is remarkable. How once you know more you DO more. How once you see something you can never “unsee” it ever again. This is how I feel about my son Steve’s previous IEP’s. I see the mistakes now, clearer than EVER.  

I know, don’t beat yourself up “mom, ” you didn’t know. 

That leads me to this… the BIGGEST thing I learned through this years IEP prep… you know all those people you thought were the experts and were going to lead you out of the darkness and we’re going to solve all your child’s academic problems he has….. you know… THE TEAM….. what I learned is THEY DON’T KNOW SHIT! Yes, I said it, and I mean it. I am not saying however that the fact I just stated, is their fault. 

I believe that every Special Education Teacher out there wants the best for their kiddos. I know that to be true. What I do not believe is that the districts feel the same way. I believe, the government (federal, state and local) feel educating “those kids” is costly. Especially those “autistic ones” with all the different problem. If they are all “snowflakes” and we have to treat them all individually, that’s going to get expensive, quick.  On top of that they can’t put our kiddos in an “autism classroom” and just have a new way of “dealing with them.” It is not how this works. So therefore, it becomes messy, complicated and expensive. In addition to that, I sure do not see the SpEd teachers be able to go back to class, learn about the newest disabilities emerging and how best to tackle the issues associated with them. THIS IS FALLING UPON US PARENTS TO DO… and this is why I am acknowledging here and now… the “team” is not your child’s savior… YOU ARE… I AM! Hence the 150+ hours of research, reading, educating MYSELF, first. 

I’ve taken the reigns. I am going to walk into that IEP this time like a boss, because, I am. You’ve heard it a thousand times, I had heard it a thousand times, “no one advocates for your child more than YOU”… I guess I never knew what that meant until now. Now I know, now I see, and I can never UNSEE again.

How am I going to do that, advocate better, you may be wondering. Well for starters, I am going to pray (you knew I’d get back there at some point I hope). Truly, I am going to pray. I am going to pray that the “team” opens their hearts, their minds, their wallets, and their spirit to do what is in the best interest for my child even if it is HARD, EXPENSIVE, and has NEVER BEEN DONE BEFORE.  I am going to ask for what I truly want for my child, what I as his mother, his advocate, KNOWS will be helpful and supportive in his academics so that he can be successful. I am no longer going to allow them to paraphrase my parental concerns. I am going to hand then a typed up page of EXACTLY what my concerns are for my child especially with regards to his academics and I am going to ask that these concerns be entered into the record verbatim this time so that our REAL concerns are documented. I am going to ask for goals that are academic based and have supports built in. I am going to ask for a LOT of accommodations knowing that some may be handled in other areas or ways, but what I have learned is, if it is not written down they do not haveto do it. So, write it down and when we feel he no longer needs that support (to get to PE and get changed in a specific allotted amount of time, for example) then the accommodation can be removed. I am going to speak to my child, his father, and together we as a family will create a VISION for his future, we are going to ask the team to join us in making this vision a reality. I am going to ask questions, LOTS of questions. For example, if my son is in a behavioral program at school why is there no BIP in place? A Behavioral Intervention Plan is not written out for a child in a behavior program is kin to saying oh we know this kid is allergic to peanuts but I was out that day and a sub cook from the other kitchen filled in. PUT IT IN WRITING. 

The DEATH SPIRAL has to have been for something, it was. I have learned so much. I have read so much. I have watched so many YouTube videos, I have written so many notes that my hands are very confused and thought they forgot they had to know how to do that; you know, hold a pen. After all of that spiraling,  I fall face first into the dirt from exhaustion and can learn no more for this round, I create the bullet pointed notes to take into the meeting, it is then I realize….. I’ve come full circle. 

It all comes back to, my child has major executive functioning deficits that keep him from his full learning potential and now I need the team to build the bridge to success for him. 

So… here I go again… 3 days until the IEP…. I’m starting the prayer again… Dear Lord… please help the IEP team open their hearts, minds, wallets and souls  in order to do the best they can for my child. 

Say it with me, will you?

~me

 

 

 

IEP vs 504

I’ve had quite a few people ask me what the difference is between a 504 and an IEP is.  I know that before a 504 was graciously given to my son, I had never heard of one. I also know that had he not been given one, we may not be where we are today. 

So, when this came across my Facebook feed today I HAD to share it!!! 

I think this is a good outline to begin learning, please also note, I have been told, PE is an academic class and may be addresses on both of these. 

Happy reading!

IEP vs Section 504 Plans Infographic

~me