Wednesday, April 25, 2018

To the moms who cry in their cars after IEP meetings: Someday, you won't


I saw the tearful Facebook live video posted by blogger Dena Blizzard last week after she'd been to her daughter's IEP, and my heart went out to her. She wanted her daughter to be tested orally instead of with a traditional written exam, so the team could figure out what she really knows.

"I only have a few more months to figure this out before high school," Dena noted. "I said, 'Isn't this what we should be doing?'" And the case manager said, "I am not making any changes to her IEP, that is the high school's job." At that point, Dena said, "my head exploded." They had three months left—why wouldn't they change the IEP now if it wasn't working? Why wouldn't they try everything? She sat in her car, despairing.

I have been that mom crying in her car (and, at times, during the IEP meeting). I am not that mom anymore. Well, not during the last one, anyway, cause you never know. These meetings can really push your mom buttons—there you sit, surrounded by the very team of people supposed to be educating and nurturing your child's development, as you hear that your child can't get what he needs. You feel frustrated, anxious, angry, perplexed, disgusted with the system and helpless. Or you're crying because all your child's challenges are literally being laid out on the table, and it's overwhelming. You feel all the feels.

If you're new at this, you will get used to IEPs and even master them. There may always be roadblocks and curveballs, but you will get better at handling them. It might be hard to believe but someday, you may not even dread them and actually find joy in them.

With at least a dozen IEPs under my belt, I'm a bona fide IEP veteran. (Hey, where's my medal?) We just had Max's annual one, and it was great...words I never thought I'd say. And so, for any parent who's left an IEP and sobbed in their car, here's hope—and ways to make the process less painful and more productive.

First up: request a copy of the IEP draft.
Coming to an IEP meeting without first reading a draft of it is tough—you have to absorb, react, question and come up with requests and changes as your child's school team sits there. I've learned to ask our district coordinator to make sure I get a draft of the IEP in advance. That way, I walk into the meeting with a list of notes. It's also given me a chance to get feedback from Max's private therapists, if need be. Now, reviewing a draft won't work for an IEP you are creating from scratch or majorly reworking, as that needs to be composed as a team. But usually, it's possible. Also helpful: Often, teachers reach out ahead of time to ask what goals I have in mind for the IEP; if they don't, I reach out to them. FYI, it is your right to record IEP meetings, so do so if it'll help. (Not for nothing, this also sends the message that you are not a parent to mess with.)

Yes, you will run into roadblocks—and you can blast through them. 
You do not have to sign the IEP presented to you—you can challenge it. Dena noted, "Yeah, I might send an email." But there are other options, too. If an advocate did not previously work, you could try another or an education attorney. (If you're ever in need, you can find an expert through the Council of Parent Attorneys and Advocates.) You can get supportive letters from the doctors, specialists and therapists in your child's life that bolster your request for changes. You can go over your case manager's head and to her supervisor, and then to the district superintendent. Reach out to other parents in Facebook groups for parents of children with disabilities and ask their advice. Forget squeaky wheel; be that sound-barrier-breaking wheel. 

Sometimes, you will lose, but you can try, try again.
You don't have to wait a full year to make changes to an IEP—it is your right to request an IEP meeting at any time to make changes, especially if there is a lack of progress toward goals, you get new information from an evaluation or reeval or you just have concerns, period. Put your request in writing, and explain the reasons why. In any case, if your child makes a major grade shift—say, going into first grade or high school—it is likely you will revisit the IEP a couple of months after school starts, and the new team has gotten to know your child. That's what happened with my boy Max when he entered high school. Remember, one "no" on an IEP does not mean the door is permanently closed. (If you want to familiarize yourself with your child's IEP rights, check out the articles at Wrightslaw.)

It helps to do IEP prep work.
Over the years, I have expressed any large concerns I've had to our case manager ahead of time. Recently, I reached out to ours about the fact that Max's transportation to school takes more than an hour—sometimes, an hour and twenty minutes—despite the fact that we live less than 20 minutes away. I'd posted about the problem on Facebook, and found out that it is possible to have transportation accommodations written into the IEP. I went back and forth a few times with the case manager. I got a letter from Max's pediatric neurologist to support why being on a bus for an hour-plus was medically problematic. By the time we discussed it at the IEP, it took just a couple of minutes: it will be written into his IEP that he would be the last to board the bus and the first to get home. 

Also get the ball rolling at parent-teacher conferences.
I knew that Max would benefit from another session of a therapy at his school, and so, I brought it up during a parent-teacher conference last month. I laid out the reasons, which included safety ones. I figured I'd start my campaign before the IEP. I know how hard it is to get extra therapy sessions, especially in high school, where therapy is less of a focus. To my surprise, Max got the extra session, and we found out about it before the IEP. I'm not saying that making a request at a parent-teacher conference works, but I think it can pave the way.

Invite your child to the IEP.
Max has been coming to IEPs for several years now, sometimes for the entire session, sometimes for just part of them. He needs and deserves to be there, as the IEP is about him. It's empowering for him to voice his wants and needs, to hear how great he's doing, to be a part of solving problems and to learn self-advocacy. At yesterday's IEP meeting, Max and all of us agreed that he should ask questions if he is not understanding something (he tends to not like to admit that). We also agreed that he might someday enjoy doing computer work for a living.

Max brought the house down when our case manager asked what his favorite subject is.

"Lunch!" said he. 

14 comments:

  1. The very best thing I ever did for IEPs was to get an advocate. I made sure is was someone who would advocate for my son, not for what I wanted. She has been great. She thinks on her feet faster than I do, she is very good at asking "why questions" instead of saying "that's stupid". She is also great with "how about" type questions. She helps everybody on the team - but she is really there for Luke. It is worth every single penny I pay her.

    ReplyDelete
    Replies
    1. So great you have that resource! I know of a local parent advocate and while I've asked him questions, I've never felt the need to bring one to the IEP.

      Delete
  2. This is a very timely article as my granddaughter had her IEP yesterday. This applies to Dads too as my Son also sat in the car and cried afterwards. My granddaughter's progress is not moving forward so it was not good news. They would have been so much more prepared had they asked for the draft as you suggested and not had delivered the gut punch that they got. What do you do when the report is so negative?

    ReplyDelete
    Replies
    1. I'm sorry to read that. When I've gotten negatives, I've worked with our district coordinator and the school team to tweak both the approaches and the goals. I'll rasie questions about assets that might help Max. I've been noticing, for example, that he's not retaining stuff he's learning in social studies. We discussed getting books or looking up information online that might help; letting him prepare presentations on occasion (he likes PowerPoints!); and further breaking down material. With therapies, I've sometimes had to ask for different approaches—and therapists—over the years if goals weren't being met/there wasn't much progress. Our children progress on their own timelines, but there are ways to rethink teaching methods and therapies to better move them along.

      Delete
  3. This is something I wish I knew at my daughter's first IEP meeting in Gerogia. They walked all over us and not only lied to us several times, but were very unaccommodating in every sense of the imagination. I wish I knew to fight harder for what she deserved. Luckily since moving to Utah things are much better, but I still have such negative feelings towards our first experience.

    Paige
    http://thehappyflammily.com

    ReplyDelete
    Replies
    1. UGH, that's a-w-f-u-l. We all learn as we go along, right? I am glad you are in better hands now.

      Delete
  4. My son is 17, and I still cry after every single IEP. Not because I'm not prepared (I am...and then some), not because the team isn't doing their best (they mostly are, though the system isn't always in their favor), not because of anything other than the fact that this is hard, and made harder by bureaucracy and lack of information all around and overwhelm all around and a variety of other issues. I cry because someone will make a comment that's ignorant or upsetting and even after I've schooled them, their voice will ring in my head. I cry because there aren't always easy answers. I cry because the future is scary and full of unknowns. And then I dry my tears and go back to loving my son and adoring the man he's growing into. But first, I cry.

    ReplyDelete
    Replies
    1. IEPs stir up so many feelings. You sound like you are doing a great job advocating for your son, Lori. Sometimes, when I've despaired about the uphill battles, I've forced myself to think that no matter what, Max is so much better off because he has Dave and me.

      Delete
  5. Been there done this. Last IEP I didn't cry but it was a hard one. It is never easy to hear how your child isn't "meeting standards" in some areas while all the other children in her grade are. I am coming to terms with the idea of her own progress, not comparing her progress to other children. It's hard.

    ReplyDelete
    Replies
    1. Yes, it's hard. It took me years to learn to stop comparing Max to his peers. The passage of time helped.

      Delete
  6. It is heart wrenching to read that so many people have issues with IEP meetings. First off, as a parent of a child with an IEP I have always had great IEP meetings with all of her schools. I am happy to say that things I have asked for have been done. Now, in the same breath, the schools have always known what I do for a job at the neighboring school district. I am a Diagnostician. When I sit on the opposite side of the table as a representative of the school, my number on job is to do what is best for the child and to stay in compliance with the law. I have sided with parents when the others at the table I feel are wrong. I have actually told parents that they need to ask for things like an IEE or that they need to contact an advocate. On the flip side of this, I have also seen parents be unreasonable in their request and have even felt that some parents are sabotaging their own kids to be successful. As for me, the child comes first and all members of the IEP team needs to remember that.

    ReplyDelete
    Replies
    1. PROPS TO YOU! We would all be so lucky if we had more people like you sitting at the IEP table.

      Delete
  7. Hi. How and where can I get in contact with an advocate for my son?

    ReplyDelete
    Replies
    1. Marlena, try the Council of Parent Attorneys and Advocates: http://www.copaa.org/

      Delete

Thanks for sharing!



Related Posts Plugin for WordPress, Blogger...