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. 

How to ace an IEP: Tips from a parent pro

Max's annual IEP (Individualized Education Program, for the uninitiated) meeting happened yesterday. It's our seventh one, which I guess makes me a veteran, though a very young-looking one. I took the day off from work, not because it takes so long (about an hour and a half) but because I always have a lot to process afterward. These are some of the tactics that have helped me get the most out of IEPs over the years, and helped me to best help Max: 

Try to discuss goals ahead of time with the team

Max's teacher and therapists have emailed in recent weeks to share their thoughts on goals for Max, and find out what mine were. It is incredibly helpful walking into the IEP knowing them, and being prepared to discuss them. If you have assessments from experts, share them ahead of time, especially if you're going to pushing for additional therapies or other support. You can also request a draft of the IEP ahead of time; it's a good thing to do if you have concerns and you want a specialist to weigh in on it.

Make a list

Basic, yes, but key: Bring a list of questions. I type mine out so they're easy to read at a glance and because it looks I-mean-business official. My wish list is also on that paper—an extra session of occupational therapy, a way for Max to do homework on his iPad or computer.  

Sneak a peek at your kid before the meeting

When I popped into Max's classroom, I got one of his I'm-so-happy-all-I-can-do-is-giggle reactions, just the fuel I needed to go on. Also: During the conference, I opened a photo of Max on my iPhone, and left it facing up on the table. Just in case, you know, I forgot why I was there...or anyone did.

Bring backup

And by this I do not mean a flask of mojitos, not that there's anything wrong with that. Say you want the district to pay for a speech app for your child. Gather your ammo, whether it's copies of letters from private speech therapists or the neurologist or copies of progress reports from the last two years that show your child hasn't made great progress in communication. Discuss your request ahead of time with your district coordinator so she can (hopefully) back you up at the meeting. If you know you are going to be in for a battle over a device, service or support you want, you have a right to bring an advocate, psychologist, behaviorist, attorney, psychic. And if you do not agree with the IEP, you do not have to sign it right then and there. Truth is, sometimes administrators don't necessarily have your child's best interests in mind—they might have the budget's best interests in mind, something I learned the hard way years ago at another school when I first asked about getting Max a communication device and was told "no." If you choose, you can put your concerns in writing and request another IEP meeting. Also: If you've had clashes with your school over services, you have a right to record the IEP meeting if you give 24 hours notice; that tape could come in handy should the school not completely follow the IEP.

But keep an open mind 

Max has come a ways in terms of using both hands (his left one is the stronger one); he's instinctively picking up toys and objects with both of them and I no longer endlessly plead "Use both hands, Max! Use both hands!" But Max completely lacks supination—the ability to turn your arms so they face wrist-sides up (think soup-ination, like you're holding a bowl of soup). I don't know when this will kick in. Max receives two sessions a week of OT at school, and I got it into my head that an additional group session would be good for him; he's so social, and I figured watching other kids using their hands and arms in therapy might encourage him. What went down at the meeting: The head of the OT department explained that he does basically get group OT when the OTs are in the classrooms. Another pointed out that it wouldn't be great to pull him out of class for yet another therapy session. I listened, truly listened, and ultimately agreed with them. 

Feel the love  

During the meeting I'll look around the room and think about what each person has contributed to Max's progress; it makes me feel good, and helps lighten the intensity of what we're doing. And if someone's making me anxious, I picture them in their underwear! OK, I don't really. I just get them in a headlock. 

Anticipate the downer moments

There was lots of Good Stuff to talk about. I had to restrain myself from giving a standing ovation when the nurse announced "Max is potty-trained!" Math skills are coming along. Max is reading sentences, and typing them out on his iPad. He is increasingly using his iPad in conversation to ask questions, including ones like "What is your favorite kind of party?" (Which evidently stumped the guy who recently measured Max for foot braces; Max's answer is "Cars 2 party!" and when he gets around to asking me I will unhesitatingly respond "toga party!") But then we discussed Max and his understanding of time and money. And his wonderful teacher gently said she's not sure he is truly getting what they mean. Even though hearing her acknowledge that was hard, I'd figured it would come up and that helped temper the sadness. Max learns best from repetition, so we agreed Dave and I need to work more on helping him with those concepts at home. Heck, we don't even own an analog clock; one old-fashioned, non-digital Cars 2 clock, coming up.

Follow up

It's too easy to go home and get sucked into your bazillion to-dos. But take a moment to make a list of things you need to follow up on. Mine included talking more with Max's OT about a solution to helping him pull up his pants when he uses the bathroom, and being in touch with the school in September about getting Max a laptop with a touch-screen to do homework that way. 

I put all the paperwork aside until the next day, so I could read it with a clear head. Then I went and got myself an IP: Individualized Pedicure, my reward for surviving yet another IEP.