Prepping for an IEP

 

J and W at J’s early intervention preschool in Lawrence, Kansas.It’s hard to believe J has had regular IEPs years before this!

J’s IEP is coming up this week.

It’s something I’ve been doing for as long as I can remember.  I have binders full of Assessments, Evaluations, Re-Evaluations, Progress Reports, IFSPs (an IEP for kids under 3), IEPS (an Individual Education Program once a child turns 3),and behavioral  assessments. I even have copies of “my rights” as a parent of a child with disabilities from three different states.

I can’t imagine what it would be like to be a parent without all of these binders. To just send your kids off to school and collect report cards a couple of times a year.

Over the years, I’ve learned some things along the way—things that go past the anatomy of an IEP. There’s plenty of websites out there that explain that like this one here. But I’ve learned some things about the mental/emotional aspect of the IEP meeting. And sometimes that’s a little harder to navigate than the goals and objectives and the construction of the IEP itself.

Here are seven things I’ve learned:

1. Be objective—as objective as you can. I know it’s hard as a parent. You have to leave all your emotional crap at home. If you really have a gut feeling that your child isn’t understanding, doing, learning, something, don’t hide it. Bring it up. The good, bad, and the ugly. Just because your child is struggling, doesn’t mean you’re a bad parent. Be willing to admit that your child is having a hard time keeping up or behaving him/herself. If you’re frustrated with how things are playing out at school, don’t lash out on staff. Look at the current plan and see how you can improve that instead. It sounds very clinical because in some ways it has to be. Doctors can’t let their emotions overcome their thought processes when helping their patients.
2. Make sure to bring up your child’s strengths: I think any parent—those of neurotypical kids as well—can say that their child behaves differently at home than they do at school. Often, with kids on the spectrum they feel more comfortable in their home environment and can show strengths in learning and talents that might not show up at school. Make sure you notify the team of these things. They may not be seeing them.
3. Be an advocate for your child: If you feel like your child isn’t getting the services they need, tell the team. Hopefully you’ve been in constant contact with the team before the IEP (and so your concerns don’t seem like they’re coming way out of left field), but if they still aren’t addressing your concerns, make sure you bring them up and hold your ground. If there is something your child really, really needs, make sure that it’s included in the IEP.
4. Come prepared. Review past IEPs and assesments. Look at the progress reports of past goals. Which goals were the most successful and why? Which goals were the least successful and why? This will help you gauge where the best place/level to challenge your child and encourage the best success. Sometimes goals are too lofty and have to be revisited for the next IEP. Sometimes they’re too easy and they need to be revisited for the next IEP. Sometimes they’re too specific or too general. If you’re receiving services outside of the district, make sure you include any information from those services that might be helpful.
5. Prep the team before you get to the meeting. Write a little summary of what you’ve been seeing at home (both the positive and the negative) and send it out. I find there’s limited time in an IEP meeting and there’s always so much I want to say. If everyone’s read the summary before the meeting, I feel the team knows better where I’m coming from, and hopefully we can be more efficient with our time.
6. Be a good listener. There’s a lot of group dynamics happening in an IEP meeting, and different people have different sets of information/perspective that others in the group don’t have. Try to be fair and make sure you listen to everyone’s voice. It’s really easy for one person (yourself included) to dominate the conversation.
7. Remember that this is one moment in your life and your child’s life. It’s easy to get overwhelmed and feel like you’re drowning on all the things that need to be “fixed.” But every child is constantly evolving. That’s why your parenting strategies become obsolete in a few short months, weeks, or even days after you’ve come up with some brilliant plan, and you have to figure out something new again. As J would say (reciting one of his mindfulness apps), “It isn’t always going to be like this. Thoughts (substitute hard things) come and go like leaves on a river.” Tap into those mindfulness strategies. It will also help you with #1.

As I’ve prepared for this round, I’ve had some new insights through looking at J’s past IEPS. I understand J’s behavior goals will be important to discuss in this next IEP meeting, but I’m also anxious to talk about his academic goals as well. While going through these documents (all the way back to 2005) I’ve noticed that over the years the IEP goals have focused heavily on behaviors (appropriate class behavior, reducing outbursts, and using language to communicate needs). These goals have been on every IEP J has ever had in some shape or form. In fact, on one of J’s eligibility assesments (under “background information”) it states:

“Records indicated he entered school with a tremendous base of concept knowledge and age-appropriate pre-academic readiness skills. J’s weaknesses have consistently been in behavior. His records show IEP goals attempting to increase prosocial interactions with peers and decrease disruptive behavior. J’s previous district stated ‘He displays a high level of stereotypical repetitive behaviors that interfere with his learning’ (November 2007).”

J has been able to “muddle through” academics over the years. He has an incredible memory so math has been historically a strength for him, as well as spelling and grammar. In fact, he came into kindergarten being able to spell at a second grade level, read basic sight words, and new his basic math facts. Over the years, modifications have been made for him in other areas (such as reading comprehension). But now I feel like we’re hitting a turning point. He’s been slipping in the academics category. Now that we’re in middle school he needs to learn how to “take tests.” He needs to learn to study for a test to if he’s going to be able to “muddle through.” Last year he was dismal in these areas, but this year we’ve been seeing glimpses of progress at home. We’re starting to figure out how to get him to “study.” How to get him to work “independently.” Not at grade appropriate levels, but he’s learning the concepts. And I can’t help but think that in the end, knowing how to “do the task” and consequently, eliminate half of the frustration, might improve behavior and attention at the same time. Give him something to encourage prosocial interactions with peers. We’ll see.

I have a love/hate relationship with IEPS. I’m excited to see how J’s grown and at the same time I can get discouraged that he’s always behind in something. That’s why #7 is probably the most important for me personally. I have to remember that Rome wasn’t built in a day.

Math Update:

Steve marked this. The American system of marking makes me smile. In Canada, you put a check beside the correct ones, an “x”by the wrong ones. In the States, you just put a check by the wrong ones. Steve added stars to the correct ones to make J feel good about himself.

The last two weeks we’ve been working on adding and subtracting integers with J. Every day. I decided to suck up all my math phobias and to try to figure out how to get J to learn this. I printed off free worksheets from mathdrills.com. Easy EASY integer problems he could do in his sleep. I wanted to make sure he REALLY knew the rules of integers. After a week and a half, I decided that it was time for J to do the whole sheet on his own. It took him 8 min. Alone in his room. No hovering to tell him to focus and do the next question. No talking through the steps with him. He felt confident (and proud enough) to do them ALL ON HIS OWN—FOR THE FIRST TIME EVER. NOT ONCE DID I REMIND HIM TO SIT BACK DOWN AND DO HIS WORK. He got 22/30 right. 72%. And the next day doing his real integer homework, with larger computations, was SO MUCH EASIER. Because he can do the larger computations without the integer mumbo jumbo. He was doing larger computations in grades two and three, and yet for the past few weeks in school he’d been bombing every worksheet because of the addition of integers rules.  It really confirmed to me that he needs to practice the steps as simply as possible—over and over and over again—he’ll have no problem applying them later.

See? Like I said, they’re constantly evolving!

 

For Those of You Who are Wondering

J helping with the Christmas tree this year. Historically Christmas has been hard for him–“countdowns” give him extreme anxiety, Christmas is full of “surprises”–also not one of J’s favorite things. But while trimming the tree he said, “I’m so excited for Christmas. I’m ready for it!” It’s amazing what years and years of “positive conditioning” can do 😉

 

While reorganizing our home office over the last week or two, I found dozens of J’s IEPs and progress reports starting from preschool. I’ve been hoarding them like tax returns, not sure if I’m supposed to hold onto them, not sure if I’ll ever need to pull out an IEP from, say, 2008 or if any of that information is still useful. I’ve decided to keep those files for now, and maybe read through all of those reports again in preparation for J’s annual IEP in the next few weeks. J has made significant progress thanks to early intervention, but who knows—maybe there are some underlying trends that are still there in J, hidden away and morphed into something that looks different but still hasn’t been addressed or even resolved.

Among these stacks of papers, I did find something that belonged to W. On October 16, 2007, 37-month-old W was screened using the Denver II at J’s preschool where she was attending as a peer model. That’s right, back in 2007 I had a few concerns about W’s development and I had her screened right away, just like I did with J.

I didn’t want to take that chance. I didn’t want to “wait and see.” “Wait and see” is what friends and doctors told me when J was 18 months and couldn’t put two word sentences together and I’m sure glad I didn’t listen then. I don’t want to think of all the years of growth J would have missed without early intervention—if we had entered kindergarten from scratch, if it had taken a few years after that to realize that he had autism. I had a gut feeling at 18 months that something was up—even if I couldn’t explain or articulate to people what that was.

I didn’t have that gut feeling with W. Not in any way whatsoever, but with the hours and hours I spent researching autism one thing did pop up again and again—that siblings of autistic children are more likely to be autistic than those who do not have an autistic sibling. That was back in the early 2000s. Research now suggests that trend is even stronger (see here and here)

I’d get that question a lot. Once people found out J had autism, the questions started about W. One time we were at the wading pool in Lawrence—at an autism playgroup—and almost every parent came up to me asking, “Does your daughter have autism too?” When I answered, “No,” they’d continue with either, “Wow! That’s amazing” or “Wow, you’re so lucky. Look at her—she’s such a good playmate for your son with autism.” That’s when I realized that almost everyone at that little playgroup had more than one son/daughter on the spectrum.

Of course that little playgroup is a poor sample group. The frequency isn’t THAT high for multiple children with autism in a family, but between experiences like that and the research I decided that I wasn’t going to chance it with W. Right around 3 ½ I noticed when I asked her a question like, “W, do you want milk or juice to drink?” W would answer something like, “The dolphins and unicorns like swimming together.” Answers that had had nothing to do with the questions I asked. I talked to her preschool teachers and the speech therapist in the classroom, and while they noticed random answers like that too, and while they didn’t think anything was wrong they told me, “We are totally up for a screening if that’s what you want.”

Deep down I was pretty sure that she didn’t have autism. But I wanted to rule it out—after all, there was some funky speech going on, so on October 16, 2007, W was screened by the early intervention preschool using the Denver II (the Denver II has fallen out of favor as a screening test for many early intervention programs—many use different testing now, but this is what was used on her in 2007).

Here’s the summary of the report:

Results: Suspect

Denver was Suspect due to one delay, brush teeth with help and one caution, put on a t-shirt without help. Keep working with W on “self-help” activities like getting dressed, brushing teeth, washing hands, etc. For fine motor development, you can start showing W how to draw faces and shapes. For large motor development, you can show her how to hop and continue working on balancing on one foot. W was advanced in this area! For language, ask W open-ended question frequently and try to engage her in short conversations. Ask her to define words and show her what the different prepositions mean (over, under, on top of, beside, etc). No concerns at this time! Keep up the good work!

Brushing teeth? Self-dressing? These things weren’t even on my radar. And for good reason—she was only slightly behind in these areas. W had no speech or cognitive delays, but W’s dressing delays came because I was always struggling with J, trying to get the door with an autistic toddler can be quite the challenge, and when the baby sister is only 22 months younger is lagging behind, you sometimes just do things for her. At that point in my life, it felt like I had twins and one especially needy twin at that.

The screening was a good reminder—that even though W had no significant delays, I did need to make sure she wasn’t neglected because of J. On top of being enrolled as a peer model in J’s early intervention preschool, we enrolled in the Parents as Teachers program (a program where a developmental specialist comes to your house and shows you really fun games, books, and activities to do with your child and helps you understand how to support development as a parent). I needed those things. I struggled a lot as a mom of little kids. I needed a village to help me raise not only J, but W too. Other people can see things you don’t. Other people come up with ideas you’ve never thought of before. And it’s really helpful.

Every few months, without fail, someone comes up to me with concerns they have about their child’s development. Most of the time they’ll tell me the quirky things they see their child doing and then comes the question: “Do you think I should get my child tested? The doctor says it’s nothing, but I’m not sure.” They’re always hesitant—I’m not sure if they’re scared to find out something is wrong with their child, that their child will be labelled, if they’ll have to put their child on meds, that the results will forever change the way they look at their child…Mama and Papa bear brains go to worst case scenario modes quickly.

But for me, I feel very, VERY strongly about developmental screenings. SCREEN. If there’s a delay, then great! You know what’s going on and what to do next. If there’s no delay? Great! You know you don’t have to worry anymore. No harm, no foul, right?

It still upsets me that as a society we feel that it’s a no-brainer to take your kid to the ER in the middle of the night because your child has a fever—even if you’re not sure it qualifies for the “high fever” category, but as a society we are willing to sit for months, even years to make decisions on a child’s social/mental/emotional development. I get it, the word “development” implies growth and change, but at the same time there are baselines in development that every child should be making at different points in their life. I feel like this hesitation is very similar to our hesitation to talk about mental illness—it’s something we can’t get lab results on, and if we can’t get the lab results on it, then maybe, maybe it’s not “really” real.

When people ask me about screenings, I tell them the stories of both J and W. One time I was right, the other time I was wrong, but I never for a minute regret screening them at the age I did. We test our kids umpteen times a semester for academic purposes once they hit public school age. We take our babies for well-child visits every year to measure their skull sizes and weight gains and growth spurts until they’re teens and then some.

Why are we so scared of assessing the social-emotional-mental development of our children?