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Thursday, May 14, 2015

Swingin' In My Hammock

I'm stuck. There are a million things I should be doing right now, but I'm stuck. I'm reliving yesterday's IEP meeting over and over in my head, stewing and fretting. I can't get it out of my mind. Not only did parts of the meeting piss me off, but it pisses me off that I can't stop thinking about it. I've tried all my tricks, but it's still there. Stuck like glue in my brain. 

I have to say, I love our school district for so many reasons. I have completely adored most of the teachers my kids have had in the past 8 years. I see that the school tries to do their best for my kids. Most of the teachers we have had have been incredible- invested, generous with their time, earnest and devoted to helping my kids. Having said all that, sometimes schools aren't perfect. Sometimes they really don't see the disabilities a child has, because the disabilities are invisible. To the naked, untrained eye, they are invisible. So sometimes you have to bring in the big guns to show everyone what is happening to your kiddos, because they can't see it themselves. 

In the last couple weeks, I've been to three IEP meetings for my three boys. This year we hired an advocate to help us get services for our boys, because Mama was tired of fighting by herself. Eight years, and the school still didn't see the extreme needs my boys have. I was done. I needed help. I called in the best reinforcement possible. My savior, my advocate.

It started with Ben. We had meetings fill our calendars during the beginning and middle of the school year, all about Ben. We hired a behavior consultant to observe Ben in school. She is an expert in Tourette Syndrome, and wow, she was amazing. She was able to explain to the school what was really happening inside of Ben's body and brain. The school listened to her and asked her to do a training for staff. It was fantastic. We got Ben an IEP instead of a 504, so he has more services at school. The school has stepped up their game and have supported Ben well since we got the IEP nailed down. He was able to get a laptop to complete his work, so he doesn't have to write things out with a pencil. He has a variety of things in place to help him succeed, and overall he's improved. I still have to keep track of things to make sure his accommodations are being met, and we've had some hiccups along the way, but the school team has had good intentions with following his IEP.

Aidan. *sigh* Aidan. My little enigma. There are some truths I've always known about Aidan. He is an old soul. He is wise beyond his years. He communicates and learns differently than typical kids. 

So how do you put that into words that will compel the school to give your son help? That's the tricky part.

All year, Aidan's teacher has sent home emails, notes, and phone calls, with concerns about how he's doing. Academically and behaviorally. Aidan is a good boy. This year it has been surprising that he has had a few mis-steps behaviorally. I can tell you that I know for a fact that these little one-time issues are due to the fact that Aidan has impulse control problems. He has ADHD. He has executive functioning issues. He doesn't think through things, he forgets about consequences. He is all about "right now." He can't think ahead. He's never trying to misbehave, his disabilities just get the best of him sometimes. 

I got new neuropsychological exams done for all the boys this year. We found out some surprising things about Aidan, which was fantastic because then I know more about how to help him and what to ask school to help him with too. Aidan has a learning disability in addition to everything else. He has trouble with math, as well as visual and auditory processing. These are huge! If you can't process what is going on in the world around you, how will you learn the way a typical kid does? Huge.

Aidan's school team is in the process of evaluating him (despite the fact that we just spent thousands of dollars having a private evaluation done). Nothing will change in his 504 this year, but before the first day of school in August, the team will meet to discuss their findings. Aidan's meeting was tough for me because, as happens every single year when I've asked for my child to be evaluated for an IEP, the team reported that "Aidan is doing great!" I got super steamed. All year, I've been trying to help the teacher figure out how to help Aidan. I've tried different meds for his ADHD because the teacher said certain meds made his ADHD worse, other meds didn't help at all. I'm going crazy trying to figure out why he had a 2-week stretch of misbehavior at school. I'm trying to wrack my brain to think of more ways to help him succeed at home and school. He continues in private speech therapy and counseling. And they say "he's doing great"??? So finally I couldn't take it anymore and I spoke to the team about the impression I had about how Aidan was doing, based on what the teacher had told me all year. I was really pissed off! Every time I get to one of these meetings, the teams says my kid is fabulous. After I've heard for months about how he's not focusing, not starting work, not finishing work, not doing homework, not paying attention, taking too long in the bathroom, etc etc etc. 

The special ed director then said that the team understands that Aidan is doing great because of the supports that are in place with his 504. If he didn't have a 504, he wouldn't be doing great. Then my advocate (I LOVE HER!!) said that the whole reason I had initiated an evaluation for Aidan was due to teacher concerns! I was so concerned about all of her ongoing concerns that I felt it was necessary to have another neuropsych evaluation and ask the team to re-evaluate Aidan for an IEP. Yeah. Take that.

I know the school is doing what schools do. But think about it from a parent's perspective. You hear every single week of the school year how your kid sucks at so many things. How he's not succeeding in so many areas. On and on. Then you get to the meeting and everything is peaches and roses. Then who looks crazy? You got it. Mama. I'm so tired of being looked at as the crazy one. Then you multiply this kind of crappy meeting times three boys (so far no meetings for Ella, fingers crossed), and you feel like you want to punch someone in the larynx.

Yesterday was Jonah's turn for a meeting. My Awesome Advocate and I walk into the meeting room, and as usual, the same 6 faces are already gathered. When you hire an advocate, the school brings their lawyer to your meetings too. And for Ben's meetings, the lawyer brought another lawyer with her. At some meetings there have been up to 10 school people there. Think how that feels when you walk in, alone, to fight for your kid who is struggling. That's why we hired an advocate. For 8 years I've been going in alone. Done. Now I have my Awesome Advocate.

Jonah's meeting wore me out. I said to my Awesome Advocate before a meeting a couple weeks ago that it feels like my kids are on trial. I feel like I have to present enough evidence to show the school that they are in need of more services. I'm tired of being on trial. At these meetings, it feels like not only is your child on trial, but your parenting ability is definitely in question also. Scheduling 3 IEP meetings within a couple weeks is a bad idea, let me just warn you. Don't do it. Take a break in between them. Go to Jamaica. Swing in a hammock. And prepare for the next battle. Don't go in weak and stressed and when your husband has been out of town for an entire week.

So the school lawyer questioned why Jonah has missed so many days of school. Implying that I'm letting him stay home for no good reason. Over and over and over. She had a statistic that if you add up all his absences, it equals about 1 every 2 weeks. Thanks. I needed that rubbed in my face. I wanted to scream "Do you think I like it when the nurse calls me every other week with a sick boy? Oh wait! It's EVERY week, because I have TWO sick boys all the time. Oh WAIT! It's like every other DAY because I have two sick boys in 7th grade all the time, and then the principal and teacher are calling me about my other boy in elementary school all the time and then Ella has been sick several times…Do you THINK I'm enjoying this???" But instead I attempted to stay calm and said I try to get Jonah to school every possible day that I can. And if you look back through his records, he's always been a sick kiddo. He was a micro-preemie and he doesn't have the greatest immune system. I wanted to say I would provide all our doctor's records from this year of sick visits. And that I would provide a list of vitamins and supplements that all my kids are on in an attempt to help their immune systems thrive. I wanted to smack that smug little question of my parenting ability out of the heavy air and stomp on it until it was in teeny tiny little shards. And then maybe punch someone in the larynx.

Later in the meeting, it happened. I was talking about how the school has not followed through with parts of Jonah's 504 Plan. And I was trying to say that I need them to follow through, because I have four kids with special needs. I'm constantly doing all the digging, by myself, to figure out who has what homework. Who has what late work. Who has what missing work. Who is in trouble for something that he actually didn't do. Whose teacher isn't signing off on their assignment notebook like they're supposed to. Whose social worker isn't meeting with them like they're supposed to. Who isn't getting a copy of notes from the teacher like they're supposed to. All by myself. Times four. (Except that Ella doesn't count because she is doing ok at school. So far.) But there are other things I have to keep track of for Ella. So times FOUR KIDS BY MYSELF. (And of course with Alex's help.) And all I'm freaking asking for is for the school to do what they SAID they would do in Jonah's 504 Plan, and send me a weekly email telling me what Jonah's missing work is and why he's failing Social Studies. Failing it every quarter. All year. Is that too much to ask?? 

Yeah. So I started crying in the middle of my speech. Because I'm so tired of all of this. I'm so tired of these meetings. And these people. And having to justify why my boys need help. And having to ward off insults to my parenting skills. If people only knew what it's like, all the work, all the responsibility that goes into daily life with four kids with special needs. I know it's not the school's fault that my kids have special needs. But it is their fault that they said they would do something and they're not following through with it. I'm tired of being a 504/IEP police woman. But if you have kids in special ed, you have to stay on top of things to make sure your kiddo is getting what the law says he is allowed to have at school.

And that makes me tired. I'm just worn out. This week, with Alex being gone, three recent IEP meetings, it's a lot. It's not anything that anyone else can help me with, either. It's just life. Alex said I do most of this by myself even when he is home, which is true. But at least with two parents in the house, I can say "Hey, go get that kid started in the bath while I finish homework with this kid."

I'm done with IEP meetings until August. Then they'll start back up again. But at least I have the summer off. My kids and I won't be on trial for a couple months. 

Before Jonah's IEP meeting yesterday, I had my nails done. My nail lady is a complete riot. I was telling her all my IEP woes, and she made me laugh until my sides hurt. She said I should bring in a bike horn. Put it in front of me. And every time the lawyer said something I didn't like, I should just HONK in her face. My nail lady also said I should come into the meeting wearing war paint on my face. Or dressed in bright orange hunting gear. I said while these ideas are highly humorous, they wouldn't help my argument that I am, in fact, not insane. I have such beautiful people in my life. I'm going to concentrate on that and then maybe the 'stuck-ness' about IEP meetings will leave my soul. I'm going to think about my hilarious nail lady who brings me such joy. I'm going to think about my Awesome Advocate. She told yesterday after the meeting that my tears flowed at just the right time, and the mood of the meeting shifted. The team was more compassionate and not so argumentative. My Awesome Advocate told me after Aidan's meeting that she thinks I should be an advocate and work for her, because I got out my notes at one point and tapped on them with my pen and confronted the team about something in a very assertive way. I would be so lost without my Awesome Advocate. I surround myself with really amazing, gifted people. Thank you, people, for surrounding me when I need to be lifted up. You all know who you are. All of you who touch my life or my kids' lives. Thank you. I cherish each and every one of you.

Ok. I think I can go on with my day now. I feel a little bit un-stuck. I guess I just needed to vent about how sucky IEP meetings can be. How exhausting and sweaty and nerve-wracking and painful they can be. Even when you do have a great school and devoted teachers. And an Awesome Advocate. 

I need to find a hammock to swing in to rejuvenate my soul before summer ends and more IEP's begin.

1 comment:

Full Spectrum Mama said...

Oh honey, I held my breath through this whole post. Please accept a long distance hug.
Our picture is slightly different (only having endless IEPs for one kid, endless therapist and investigation for the other, well plus serious poverty so there's that...) but I feel you.
Glad you got in that hammock!!!!!!!!!
Love,