Today was the day I referred to in my last post. I had a “conference” for Simon scheduled from 9-9:30 and then Rachel’s annual review at 9:50. This is the first time since their initial IEP Meetings (about 2 months before their 3rd birthday [note, they are 12 now]) that we had any meetings on the same day, much less back-to-back. This was also going to be the first time Rachel participated in her own meeting, starting to learn the process of advocating for herself. And we talked about what this meant over the weekend, and she seemed ready and happy to have this experience and opportunity.
As I just described for Rachel, this is a day for which I did seemingly everything right. I went through the reports. I reviewed the “draft” IEP for Rachel (EVERY detail). I spent the 3-day weekend trying to relax and not obsess (TOO much). I even went out to see a movie yesterday afternoon!
I went to bed at a reasonable time and woke up mostly refreshed. I got the kids ready for school with all the supplies they needed, even making sure that arrangements for after-school plans were in place (our Tuesdays are I-N-S-A-N-E!!!!!). After everyone left, I even had time to take a hot shower and really try and relax a bit as well as make myself a cup of coffee to sip throughout the morning (I have a REALLY GOOD insulated cup). And I left the house at the exact time I was planning on insuring I would arrive early, but not TOO early.
And as I was driving, I thought through what I was going to say during Simon’s conference (as that was the first meeting).
I was PREPARED. I was READY. I was IN CONTROL. All three of these things almost NEVER exist simultaneously in my life.
I should have known it was too good to be true. I should have known it wouldn’t last. I should have known what was about to happen.
But I didn’t.
A couple of minutes after 9, I was pulled into a conference room for Simon’s meeting with his teacher / case worker. The RTSE (Resource Teacher for Special Education) was out sick so unable to attend, but the “Team Lead” made an appearance. There were no administrators in the room (which I was prepared and really hoping for as we were to discuss some serious safety concerns). Since I called for this conference, the teacher asked what was on my mind (like she didn’t know after the exchange of emails). And at that moment, “Warrior Mom”, which was called for in this situation , just decided to run away and hide, leaving this terrified and apologetic shell behind to conduct the conference. We never discussed ANYTHING that I thought of in the 20 minute drive to the school or any of my frustration these last 2 weeks … just her promise that he will NEVER get on the bus at the end of the day without my prior approval. Yes, that’s important, but not what this meeting was about. I wanted to know HOW she would address these issues, including potentially starting to put together a behavior plan as it appears to now be warranted, and she had mentioned some other concerns that she had noticed since her return from maternity leave 2 weeks ago (which were never discussed). His IEP Meeting isn’t until the END OF MARCH!!!!! When I have ANY question about my son’s safety going to school, how am I supposed to be comfortable sending him to school every day for more than 2 MONTHS based on a promise that I truly don’t trust her to keep? Or when I don’t feel I know what the problems are so that I can do my part to address them at home?
And of course, this meeting doesn’t end until 9:50, just as Rachel’s meeting is scheduled to start, leaving me NO TIME to recover and change my focus from one twin to the other. The head of Simon’s program goes off to get the teacher to bring me to Rachel’s meeting so I can wait in the office and have just a minute to get myself re-focused, but I only get about 3 minutes versus the 20 that the schedule had been budgeted for. And Rachel comes to get me (along with her teacher / case worker), so the fact that I’m on the verge of hysterics has to be immediately hidden away. And the whole way back to the conference room, Rachel is telling me about her day so far. Perhaps this is a good thing. It helped me focus a bit. And knowing she’s in the room means that I can actually see her face and address her direct concerns as she is voicing them. But it also means that I have to censor what I want to say because there are things that I really do not want her to hear at this point, things that my daughter with lowering self-esteem will see as an indication that she canNOT do certain things that I do believe she can, but are currently a struggle.
The problem of walking into Rachel’s meeting is not what I normally experience walking into an IEP Meeting. I’ve sat through many of these, not only Annual Reviews but meetings to address issues, preparation for re-evaluations, the actual re-evaluation meetings themselves, placement meetings, etc. All IEP-parents are familiar with the numerous meetings that we have to attend to help ensure our children’s success in school. These always make me nervous (I always read a “pin” that I’ve placed below before a meeting, just to remind myself what these meetings are really all about). But today, I wasn’t nervous … I was TERRIFIED!!!!!
Every time I walked into an IEP Meeting, I knew that everyone in the room has my child’s best interest at heart. Even if we didn’t necessarily agree on the best course of action, it makes the process so much easier. When we don’t agree, we discuss and listen to one another and work collaboratively to find the best solution for my child. And this was always the case. Until April 11, 2018, when someone decided that she wasn’t going to listen to what I had to say and decided to take over the meeting and tell me that my daughter would do well in a program because they could support her IEP and there was no other option. She didn’t care. She wasn’t even willing to consider the possibility that there were better options. She just felt that the “Least Restrictive Environment” should rule the day and there was no need to discuss any further. We know this is not the case and we had that placement changed to the specialized program in which she is currently enrolled, but this has jaded me. Now I don’t trust that the people in the room really care. Now I don’t think that they have her best interests at heart but just want to do what is easy until they prove to me otherwise. There were 7 people in that room this morning (including myself). Of the remaining 6, I know and trust 2 of them. The others, I really don’t know them well enough to know if they are worthy of this trust or if I need to work under the assumption that they just want to do what is “easy”. And without the faith in her team, these meetings are pure torture for me as a parent.
What are they failing to tell me? What is happening while I’m not there? Who do I believe when I get conflicting bytes of information? I know this is all an issue with Simon … is it true for Rachel as well? And these thoughts are running through my head the entire meeting. How do I know we are making the best decisions for her? As her advocate, I cannot walk into the meeting feeling these kinds of doubts. I cannot allow myself to be adversarial without cause. So I hold back. But then I fail to fight for her. And in the end, she is the one who will suffer. And I will be left with the guilt.
I think this is the legacy of the IEP He!! of last spring. And it needs to go away …. and quickly. Simon’s meeting is in just over 2 months, and he is currently the one with the more severe issues in school. I cannot walk into his meeting so fearful, just as I was when I walked into his conference today. And I need to watch what is happening with Rachel’s IEP implementation to make sure that I didn’t allow them to make decisions that are not in her best interests. I need to find my confidence again. And I needed it to happen TODAY! But since it didn’t, I need to find it before 3/26 when I go back into that room to advocate for Simon.
Today was just a complete C-F (Cluster Fu#&)!