When I was younger, my mother always told me that patience and acceptance were a virtue. I grew up with this little gem in my head, and never once thought about it. As I hit my teen years, and even early adulthood, I was full of both, even when it killed me. Yeah, I was a typical teen girl that did stupid stuff, but for the most part, I was a good girl. I had a year or two where I wasn't so good, but I just waited and rolled with the punches. Somehow, I ended up in hell. I climbed out of that pit, covered in my own blood, sweat, and tears, with my children on my back and realized something. Patience and acceptance being a virtue is like saying, "Sit and wait for satisfactory." I deserve more and my kids sure as hell do too.
These last few weeks have been one pit of hell after another. As soon as I stand on my own feet, hands and nails scratched and torn from the fight, I fall into another one. I am not a quitter, so I bandage, fall, and repeat with every pit I stumble into, but there are days where I feel like I'm in the Fire Swamps. Some days I don't know if I am going to fall into another fiery pit or just get eaten alive by a nasty big rat. Those are the days where it is always something.
My kid has something in her brain. Sure, it is supposed to be harmless, but what it really is supposed to be, is NOT THERE! The neurologist has calmly told me several times that she is just a walking puzzle and that if she could diagnose my daughter as such, she would. The school is now REFUSING to test either child for an IEP. We didn't even get out the door with that one. We met with the county psychiatrist for intake, they talked with me (my children's teacher) for maybe an hour, and back to his stupid cubicle he went. He went over grades and state scores. He looked and saw that in two weeks, it would be three years since the last request to test. He then typed up a nice little letter and sent it to me, refusing testing based on their academic scoring. Wow! I have never seen someone discriminated for their intelligence. It's new. I'm adjusting (while loading my proverbial guns). Apparently, only children who don't academically hit the "smart marker" are considered.
It was noted that they spoke to my daughter's teacher and that she stated there were no problems she sees. I was certain I was homeschooling, but maybe that is in that other reality. I'm not sure. It was also noted that her previous testing for IEP (done in her "bonus year" of kindergarten, after they dropped her IEP illegally) was just fine, so she is doing well. So, basically, the test they administered for her on a beginning kindergarten level, after a year of preschool and a previous year of kindergarten, were just fine. Her grades until now have been on standards. Her state test scores are averaging above average (Even if her writing skills are below the 50th percentile, she can READ! YAY!). They are walking a line with me on this one. All I have to do is request in two weeks and they MUST test her. Waiting was not their smartest idea, as I have already set an advocate meeting in motion. Obviously, my daughter stating that her pencil writes something different than what is in her head is not a problem. According to the district, it is NORMAL. So, following that line of logic, it is normal for her to have so much anxiety at the THOUGHT of writing that her heart races and tears form. The fact that she is 3 weeks behind in Literature because of this is normal. Oh, also, did you know that it is perfectly fine for a parent to transcribe for a child in school without an IEP? I did not. (It's not. I just love that they tried to tell me it is.) This is just her.
I got the same letter for my son. His was almost better. They sited the same reasoning, but also said that he does not engage in behaviors that hinder his or others' studies. So, it was someone else's kid that stole a laptop from school the day he was unmedicated? Good to know! It was noted that "he got a D in math last year for missing assignments, but it should be noted that he was a 6th grader in an 8th grade algebra class." What it really should be noted, is that the same student, is now a 7th grader in a 9th grade geometry class getting an A. So, the idea that he doesn't need help with executive functioning is just my imagination. Interesting. I guess the fact that I can access his work from home and ride his ass is good enough. He doesn't need help to learn how to do things on his own. As far as speech goes, they "don't give children speech services for pragmatics." Really? That is funny, I could swear the IEP he had when he came into the state was almost exclusively FOR pragmatics. Are we looking at the same paper? I do not think you see, what I think you are seeing.
I am in the process of throwing this all back in their faces. I do have an appointment with an advocate coming up in two weeks. As a matter of fact, I have a lot of appointments in the next two weeks. I meet Monday to deal with my own personal demons, which are actually starting to attack, being that it is Friday night. My daughter has a sleep study in two weeks. Both kids go to the psychiatrist for the big bad med shuffle the first week of October. The neurologist called to confirm a referral for the surgeon (just in case) and to tell me that my daughter has now been put at the TOP of the busy neuropsych's scheduling list. They also confirmed an overnight EEG next month. I have more appointments than I am honestly ready to take on. I have more fights than I am ready for. Be patient. NO! I have called all these people various times, due to being patient long enough. Those are my children. I am done waiting for them to do something, so I forced the issue. Accept. NO! I refuse to accept that you know who my kids are or what they do and do not need based on scanning some pieces of paper. No behavioral issues?!?! Would you like a list? I have one for both home and school.
I think the thing that pushed me to the point of seeking out the advocate before the letter was the ease of which that man dropped the letters A D H D. My children are well controlled on their medications. I mean, if they can guarantee they won't be expelled or fail all their classes, I would be happy to take them off their medication for a week and let them observe, but they can't. Then, when the letter reached me and my son's was all about no detrimental behavior, that was it. They used the term "stealing" on a county document, instead of the correct diagnosed term for what my son deals with, compulsion. This is gonna get ugly folks. My life is about to slip into the mud, and you know what, I don't mind.
Yeah, it's scary to look forward and see the piles of shit you have to wade through to get to that point you need to be. I'm terrified. Some nights I shake so hard, from the stress of it all. I am still trying to figure out how they switched me at birth, but I am not built or equipped to be the person I was raised to be. I cannot be patient when it is my or my children's livelihood at stake. I refuse to accept second best for me or them. I can't do it. So, yeah, I'm about to get a little dirty. Ok, so I am about to get a LOT dirty, but it is of my choosing and design. I can't name the times that I have stated that my life starts here. However, maybe I am using that term as a way to say, "I choose this path. I choose the hard path because it is the right one."
That is what I am doing again. This is another crossroads in my life. I can be patient and hope that everything turns out ok. I could except the outcome and go with the system, but I won't. I CHOOSE this path full of potholes, dirt, fights, and personal anguish. I CHOOSE it. It is the right path. I can see that with 100% clarity. It's going to be really hard. I am going to cry. I am going to hurt. I am probably going to be begging myself for a little mercy, but in the end, it will be worth it. Besides, that mud might feel kind of nice after getting my ass burned so many times these last few weeks.....
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