Continued from Preparing for Battle – Part 1, https://amomsjourney-mydyslexiclife.com/2019/04/24/preparing-for-battle-part-1/
It was clear based on how long they made me wait in the lobby, that they had already decided on the agenda.
They pulled me into the room, finally, and I immediately asked where my child was. They were all unaware apparently of my request (made to a diagnostician that was off that particular day), and were very surprised at my insistence that someone go get him. Finally, the case manager hopped up and left to fetch him.
Mind you, I had not yet sat down.
The diagnostician immediately leapt into the already defined (by them) agenda. It was clear to me that they meant to dominate the conversation.
I still had not sat down.
I was in nice dark jeans, boots, a sports coat, a nice silk shirt and a beautiful and colorful scarf. The conference room is always hotter than hell so I had to take the scarf and sports coat off and I draped them over the back of my designated chair.
The diagnostician kept talking.
I pulled out my TWO IEP binders and sat them on the table, my Special Education Law book, my Texas Dyslexia Handbook, my ginormous stack of paper, my notebook and finally a pen.
Now, ladies and gentlemen, rule #1 of negotiations, don’t flinch. If you flinch, you give away your entire hand and a savvy negotiator knows it. Well, I’m a savvy negotiator and one of the district reps had her jaw on the table by the time I was done unpacking, ogling at my materials. I smiled inwardly, made note of the tell, and finally sat down.
Even though I had been standing this entire time, the diagnostician had not drawn breath. The plan was clearly not to allow me to get in a word edge wise until my pre-assigned time to speak. She quickly asked if I was recording, to which I replied that I always record every single conversation without fail as a rule, to which she replied that they would record too. She quickly did the round of introductions for the minutes and just as quickly turned the tables over to his GenEd dyslexia teacher for an update.
I let her talk about how great everything was, how proud she was of him, how much progress he’d made even in the 3 weeks since we’d last met, and in general how awesome everything was. While she was talking my 10 year old son walked into the room and sat in the chair next to me, folded his hands on the table and prepared to listen.
Brief sideline:
We had discussed his attendance at that meeting for days. He had said before that he would attend a meeting last year, but changed his mind at the last minute because the meetings are in the office section of school and a) that’s where the bad kids go and b) he was intimidated by the principals.
I discuss everything I do for him, with him. He’s fully informed of the results of his evaluations, why we shift as we do within our remediations, everything. To me this is an important aspect of his empowerment. I never want him to be afraid, ashamed or hide who he is, and he just so happens to be dyslexic. I work hard at trying to help him understand that this is an aspect of him, like his brownish green eyes. We talk about him self advocating. He knows my expectation is that by Jr. High that he’s sitting in every meeting, participating, and that by High School I expect him to use his voice in these meetings to speak up and express what he needs and doesn’t need because it’s HIS DYSLEXIA, not mine, not theirs, HIS. He also knows that once he turns 18 that I cannot advocate for him anymore, that he’ll be on his own.
So the fact that he said he wanted to attend did surprise me a little and I did expect him to change his mind and I had told him that would be ok, but my little man walked bravely into that room and sat down with his head held high.
I had also told him not to argue with me, not to tell me I was being mean or that I needed to be nice, but to trust in me and let me do what I needed to do, and he agreed.
The air in the room shifted dramatically when he walked in. The faces that weren’t smiling took on their sweet teacher smiles and everyone looked sweetly at my son. Some people shifted in their chairs. I made mental note of all of it, discerning who grew uncomfortable when he walked into the room, and who didn’t. (I really do enjoy what I do.)
So, back to the meeting.
As soon as the dyslexia teacher completed her report, the diagnostician drew breath, and I made my move.
“Is it my turn yet?”
I might have said it a titch aggressively. She stuttered a little, looked a bit flummoxed and said, “Yes, of course, if that’s what you’d prefer.”
I said thank you, yes, that’s what I prefer, and dove in head first.
I stood up, picked up my stack of papers and walked around the table passing them out. While I had the bulk of the documents printed with more than enough copies for everyone, I had Lindamood-Bell make a clarification to their report and tried to print it at home that morning. Well, 5 pages x 12 copies on my little $100 HP printer was a lot more than it could handle in the time I allowed it; so every 2 people had to share the LMB results, which head count wise worked out well.
As I passed out the papers I said I had spent a great deal of time, energy and financial investment in preparation for that days session. My son had patiently put up with 3 brand new evaluations costing me an additional $2000 on top of the already hefty investment in his 3 years worth of remediation. I told them that I had calculated our financial expenditure to date between Lindamood-Bell, private tutors, and evaluations and had spent approximately $50,000. Given the significant financial investment, given that I had to take a day off every single time we met for this ARD alone I had already burned 2 of my 15 allotted days for the year, which please note I would far rather spend on more meaningful and quality family time, given the 3 new evaluations that we were about to review, given the significant amount of information I was providing, and given the rather in depth mark up of their proposed IEP draft, I did not in any way see how we could conclude the ARD that day. Well, we could sit there for another 10 hours, but even if we did, I did not see how we could conclude. So, given the vast amount of information I was about to review with them, I was happily going to gift them…time. Time to review, process, redraft and get back to me.
The conditions of this gift of time were a) I would require 2 weeks of my own to review their proposal; b) that I was not coming back until we were agreed, over email, that we would be able to conclude; c) anyone was free to email and ask questions of clarification, etc. as needed so that we could reach a conclusion; and d) that the next meeting was going to be very very short.
Well, needless to say between the stack of paper and the speech thus far I was staring at a whole lot of shocked faces.
“Shall we begin? Excellent. Let’s start with the Lindamood-Bell mid-year evaluation.”
(This is an excerpt from the LMB report with my child’s scores erased.)
What this image is meant to show is how I request LMB present the data to me. This enables me, during the deep dive with the director to take copious notes on what shifts and why, especially if it shifts BACKWARDS, which in this particular year, all of the scores did.
From baseline to current (and at baseline my child did not know all of the sounds of the letters, could not blend two sounds together, and absolutely could not read at all) this is the measure by which we, my husband, tutor(s) and I, manage my child’s plan.
What you can do when you have an evaluation, and especially when you have multiple year’s worth of evaluations, is to create bell curves. Seems daunting, I know, but it’s so incredibly simple!!
They will always look like this:
Take out the poor, average and high comments (unless you need it for your reference), and that’s your curve.
So, with evaluations, schools will always assume that the mean is 100. That’s the center part of the curve. Take the Standard Score and plot it on the curve. If it’s a 72 then you’re just this side of -2 Standard Deviations off of the mean and struggling. If it’s a 115 then you’re +1 Standard Deviation off of the mean and entering the high average to gifted range.
The trick is if you have a set of SCALED scores and no Standard Scores. This is a lovely game some districts like to play. In this case you have to reference a conversion table to get the Standard Scores so you CAN plot them.
This is an online conversion tool:
There’s also an app you can download called PAR Toolkit:
Stick with me now!!! Don’t freak out over bell curves! Anyone can do this, really, I promise!!!
So what I did for the image above, I made one bell curve per section, so rate, accuracy, fluency and comprehension, and I plotted 4 evaluations worth of standard scores on the bell curves I made. Not only could I represent scores STILL -3 Standard Deviations off of the mean, I could show backwards progression from last year to this year.
So, in 1 year on an IEP plan, under the school’s watch, my son slid an entire year BACKWARDS in 4 key areas.
So, how can a dyslexic child, reading on a F&P level O, instructional P, making a 94 in reading be -3 Standard Deviations below the mean in rate, accuracy, fluency and comprehension?
Excellent question!
Continued in Preparing for Battle – Part 3, https://amomsjourney-mydyslexiclife.com/2019/05/02/preparing-for-battle-part-3/
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“Dyslexicmoment”
My goal is too, like you, help educators, kids and parents be aware and THEN FIGHT THE GOOD FIGHT!
TOGETHER WE CAN MAKE CHANGES!
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Would love to chat, anytime. You can also find us on Facebook at either The Dyslexia Initiative or Dyslexic Houston.
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I’m very curious as to know your thoughts on the backwards slide. I have seen this with my child especially as rate increases, accuracy decreases. I understand why that happens but how do you explain to others that just because test scores are erratic they can still be progressing? I see the progressing, his teachers see the progression but our scores often go up and down from year to year in individual areas but overall his grade level is moving in a positive direction.
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I agree. During remediation it’s a trade off. No program works on the skills together, remediating them together. It’s one then the other. I’m painting a pretty bleak picture so far, but I can explain the backwards progression and do in part 5, at least for my child. I hope you’ll stay tuned and I’m always happy to talk more.
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What would you suggest if you find the school has done Orton Gillingham with your child, but after many emails requesting the data collected…no response. We are so far past remediation (he’s 16) and trying to survive with accommodations. All of which disappeared this year. The school district’s only solution was to do a complete Re-evaluation which has effectively wasted an entire year and, even though I requested an evaluation by a Reading Specialist….it never happened….I feel steamrolled at every turn (this has been a 10 year battle)…my only thoughts now are to homeschool or find an accredited high school diploma program. We have had 7 meetings this year and I feel as if I’ve gained a PhD in Special Education, but that means nothing when you’re fighting a system as one person…..:(
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Hi Dawn! I’m so so so so sorry for the delayed response. I honestly did not see your comment and I cannot apologize enough. Did your son have an IEP and they ignored it and then dismissed it? They can’t make changes without you. I would definitely file a compliant with the office of Special Education at the Department of Education and I’d tell your school as much. Are you making all of your requests in writing? If so, again I’d file a complaint. If 504 you have to file the complaints with the office of civil rights. As you can already see they’re treating you horribly! Even if you opt to home school I would file all of the complaints. Have you decided on homeschool? I know the school year is about to begin. I know some people who work and homeschool and trust their kids to get it done during the day and offer what support they need at night and on the weekends. Not sure what your circumstances are but I can tell you I’m considering that when my son gets older. I hope I’ve not waited too long and you’ll write back. I’m so sorry again.
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We are in IL and their response to Dyslexia is ZERO. We did the re-evaluation through the District and met the end of the year. His eligibility stayed the same, but the School Psychologist stated a Reading, Writing and Math Disability. Because of the excessive absences, it could not be used as Eligibility. The District HS called me yesterday to meet to develop a plan for this school year. They had suggested 2 online classes, tutor and counseling of 80 minutes a month. School started today for our District, so they have left everything until the last minute. I took him to a friend’s daughter this Summer. She works in Northern Colorado at a Dyslexia Center. She did the same Screening she would use on her clients. She stated that he has Moderate to Severe Dyslexia, but of course, since that did not come from a Dr. they will not accept her input.
Saturday night he tried to commit suicide (he slit one wrist, but law enforcement (6 of them) found him before he got to the 2nd). He was admitted to the Adolescent Pscychiatric Unit in the wee hours of the morning. He feels like his brain is broken, that he is crazy, the years of confusion have created severe anxiety and he feels like no one listens to him.
My plan going into the school year was to see what the school offered, but have my friend do Barton tutoring with him on our own and explore Dyslexia friendly programs at home. If successful, I was going to transition to full time homeschooling.
The school he attended the past three years as his IEP placement now denies that he was receiving Dyslexia tutoring. However, his tutor was OG Certified, did meet with him 30 minutes per day and did vocalize that he would need to continue with tutoring the remainder of his schooling. However, when I pressed them about the teacher’s statements about him receiving OG tutoring and asked for reports and progress reports from the tutor, they denied the statements as a miscommunication.
I honestly don’t know where to go from here. My son feels like his brain is broken, like he is crazy, he is so far behind in school, he is having difficulty finding a job where he can feel successful and who will listen to his needs. It is just so very frustrating that our system in the State of Illinois does not recognize Dyslexia. Things seem to be changing very slowly, but I fear it will be too late for my son since he is now 16. I truly fear for his future because of his deficits and his feelings of hopelessness/feeling like a failure/feeling like nothing ever works out right for him.
I am truly at a loss……
Dawn Miller
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Oh, Dawn! We need to chat. Can you message me directly through Facebook? My profile name is Ashley Sullivan Roberts. I won’t leave this reply up for long to protect my anonymity. I have someone who wants to work with you, to try to help
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I will contact your privately when I get home a little after 3 pm. Thank you
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