Tag Archives: IEP meetings

On Our Mark

Okay. I think we’re ready now. The supplies have been purchased, the backpacks have been packed, the fees have been paid, the papers filled out. The anxiety has set in.

Yes, there’s nothing like the start of a new school year to ramp up my stress level. I know – everybody’s busy running around, getting the ducks in a row, the usual for those of us with kids in school. For me, it’s not really about that. It’s that year after year my PTSD kicks in every time the phone rings. And I’m referring, of course, to the years and years of teachers and school administrators calling me at work to tell me that my son is having behavioral issues and I must leave work and come to get him. The phone rings and I instantly tense up. In recent years, with caller ID, the tensing doubles when I see “school district” on the screen. God help me, it’s a horrible feeling. It’s an alarm, a pre-panic, a dread. And it used to happen on a regular basis, but especially at the beginning of the school year.

Today, the first day of tenth grade (!), there were no calls. That doesn’t mean that there won’t be any later, I know better than that. But it’s a good start, and I’m grateful for it. Here’s what else I’m grateful for: a very positive IEP meeting last week. Some of you might recall how the last IEP meeting went, and how much I had prepared for it. I prepared for this one just as much because it was just as important. In fact, in some ways, this one was more important. The meeting in May was about getting the school district to agree that Nigel’s academic needs, since he could not work independently, would be better met in a specialized setting. They didn’t agree, but they didn’t offer any alternatives.

So I came up with an alternative on my own. Over the summer, I researched various programs in public high schools with good special education departments. I thought, what are they doing that we could emulate? I printed out course descriptions from some of those schools that included specialized classes designed for students with autism to teach them the executive function skills they need to be able to work independently, which is exactly what Nigel needs. I also researched various books written for educators on how to teach executive function skills to students like Nigel, and I printed out descriptions of the books off of Amazon. I went to the IEP meeting, print-outs in hand, and proposed that the school create a weekly class on executive function skills for Nigel and any other students who would benefit from it (and of course there are other students who would, even if they do not have an ASD).

And they said yes. They said yes not only to meeting my son’s needs, but to setting the precedent for future ASD kids at that school (and, as we know, there will be more). They said yes to being an even better school.  They said yes to the other kids who really need some extra help with learning how to be a good student, autistic or not, but whose parents may not lobby as hard as I do. They said yes.

And this mom is feeling a lot less anxiety, a lot less dread. In fact, I’m feeling pretty excited about this school year. I’ll even try not to cringe when the phone rings.

Some Good

Like most people, when I was in school (mostly college), I dreaded exams. I much preferred those classes in which the final exam was a paper or a project. Because as much as I could prepare for exams – researching, studying, memorizing – it gave me such anxiety knowing that I would have to retrieve all of that information in a limited amount of time and use it to prove that I knew what I was talking about. So much was riding on it, and I usually doubted how well I would do.

Yesterday, we had a very important IEP meeting for my son who has autism and is now in high school. He requires constant assistance to start, work on, and complete assignments at the public school where he is mainstreamed with extensive support. While we are very fortunate to have that support, I do not want his potential limited by a modified diploma. He needs to be taught to work independently, and I don’t see how that could happen in his current placement. We found a school that specializes in teaching ASD students, and he has attended summer camp programs there. I asked his current school to change his IEP to reflect that his academic needs would be better met in the special program.   

I prepared for this meeting for two weeks. I researched online, I consulted other special-needs parents, and I printed out e-mails from my son’s special education teacher that I had saved over the course of the school year, mentioning various times that she’d had trouble getting him to do the work, and in which she was asking me for advice. I built a case showing that although I appreciate the support that my son receives, his academic needs were clearly not being met. I practiced my main arguments in my head for days. I threw all of my energy – mental, emotional, and physical – into my preparation. I meditated. I prayed. I tried not to lose sleep. I did everything I could.

But this was one exam that I could not pass. From the moment I sat down at that huge, intimidating table, the district special education coordinator controlled the meeting. She knew how it was going to go. She was diplomatic and acted sincere, but she did her job for the school district. No matter how convincing my arguments, no matter how irrefutable my evidence, no matter how much I stuck to the facts and did not let my emotions surface, she did not waver. It didn’t matter what I’d said or how many e-mails I produced. I felt railroaded. We never had a chance.

I left the building and the tears immediately streamed down my face. I couldn’t even make it out to my car first. I was not completely surprised at the outcome of the meeting, but still, I had hoped. And it was quite a blow. I know that I could hire a special education attorney and take the district to court. I know that we have a good case. But I also know that there’s only so much I can take. I’m supposedly so “strong;” I’ve been told that many times over the years. But I’m not. I’m tired. I’m vulnerable. And I’m not going to fight that fight.

But I will continue to work for what’s best for my son, even if it turns out to be something different than what I’d thought would be best. When I tell Nigel, after I’d come home, that the district would not approve transferring him to the special school that he wanted to attend, at first he’s angry. “We need to call the authorities!” he proclaims. But after a few minutes, after he feels my calmness and acceptance, and after we talk about our alternatives, he sighs and goes back to the cartoon he had been watching. I walk out to the kitchen to begin making dinner.

I think about the huge changes that my son – that all of us – will be facing very soon as we move seven hundred miles away to be near the special school in Los Angeles. His father lives there, and my two sons have spent the past eight summers there. They’ll go to the local public school, and we’ll just keep working to get Nigel in the one we want him to attend. But I’m open to the possibility that maybe something else will come up in L.A., some other opportunity that will turn out to be even better for him. Something we hadn’t even thought of. After the meeting, walking out to the car, I felt so disappointed in myself because I knew that I wasn’t going to fight the school district. I felt like I was surrendering, giving up. But now I see it differently. It’s not surrender; it’s hope. Hope for something better.

A few minutes later, as if he picked up on my thoughts, Nigel walks through the doorway of the kitchen, stands there for a moment, and says, “Maybe some good will come of it.” It was most likely a line from a movie. But it couldn’t have been better said. I put my arm around his waist and pat his back and tell him Yes, honey. I’m sure of it.

It’s Time

This is the week for me. The mad-dash week before school starts. All parents know how it is with registration, getting school supplies, checking schedules, that kind of thing. And all special needs parents know how it is with the added emails, calls, meetings, walk-throughs, etc. that are necessary in getting our children set up with the support systems they need to be successful. In a transition year – either starting at a new school or at a new level of school – those efforts are doubled.

This year Nigel starts high school, so he’s at a new level and a new school.  With all the stress I’ve been experiencing lately, I feel like sitting in a corner and rocking, stimming my stress away. So far it’s gone smoothly getting things set up for him, but there is so much time, effort, and energy (mental, emotional, and physical) involved that I feel like I am nearing a breakdown. I so want this to work for him. I want him to be comfortable and confident. I want his needs to be met. I want him to be accepted and appreciated. I want him to focus and learn and also have fun. I don’t want to worry about getting calls at work about behavioral issues because someone has purposefully pushed his buttons. I don’t want to worry about what our options are if this doesn’t work. Please, please, please God, let this work. Let him be happy.

We went to registration today, and then met Nigel’s new case manager. How must this woman feel? I’m sure she’s aware of the fact that we special needs parents place so much hope in her. I know she’s aware of that. In fact, she must have picked up on my desperate vibe, because at one point she said to Nigel, “I’m your school mom.” No one has ever said that before. And I wanted to cry and hug her and thank her because she obviously gets it. She knows how important her role is. I sometimes wonder if these professionals who work so tirelessly with our children, who are devoted to their success and well-being, feel the strain that we parents feel at the beginning of the school year. This combination of hope and anxiety. I should come up with a name for it. After all, it’s not just at the beginning of the school year that I feel it.

Anyway, when she said, “I’m your school mom,” Nigel gave a small, cute smile, like he thought the idea of a “school mom” was silly. But I sensed that it comforted him, and he understood her meaning. In that brief meeting, she really listened to him. I could tell that he felt respected, and comfortable. The regional autism consultant, who has known him since his nonverbal days, was also at the meeting, talking about his strengths and making recommendations. His speech therapist from the past three years was there, and we found out that she would continue to work with him and facilitate the social skills class that he will take. I feel very optimistic, even though the anxiety is hovering in the back of my mind.

However, the bottom line, the “take-away,” is that Nigel didn’t just attend this meeting. He participated. He was slow to answer at times, rarely made eye contact, and was frequently off-topic with his requests and comments, but he was an integral person. And he even remembered to cover his mouth when he yawned, which shocked me after all these years of telling him it’s the polite thing to do. I swear I think it was the first time he ever did it on his own.

But at this meeting he accomplished things that were so much more important than being polite. He spoke up and discussed his needs. He told us which subjects he needed to take at the lower level, and which he didn’t. He mentioned his experience with bullying. He advocated for himself. And I am sitting here in tears as I write this, because the boy who, at the age of five, could not tell a doctor his own name is now advocating for himself. He really is. And I sense that this is only the beginning. It’s like he’s trying to tell me, Mom, I got this. I know it’s not time for me to step back yet. No, there is still much more work for me to do.  But it’s time for me to let him step up. He’s part of the team. Yes, he is.

The First Meeting

Eleven and a half years ago, I attended my first special education meeting for my son, when he was three years old. It was called an IFSP – Individualized Family Service Plan – the precursor to his IEPs. Unfortunately, back then I didn’t think to bring snacks, but I did bring a tape recorder, thinking, for whatever reason, that I should.

I found the old tape and listened to it recently. It was cathartic, of course, knowing how far Nigel has come since then, but it was also very strange to hear my voice from that long ago – expressing my concerns, etc. – when I was so new to the realm of special needs parenting. I sounded so calm and sure of myself, even though I felt completely overwhelmed, had so many questions, and didn’t know the jargon. It was good to hear the confidence in my voice back then, not realizing that it had been there. I surprise myself sometimes.

And Nigel, of course, surprises me too. Last week, he attended his first special education meeting for himself. It was not an official IEP – just a placement meeting for next year – so we did not go over goals or anything like that. Nigel was reluctant to go at first, and for a while I thought that I’d have to go without him. I wanted him to go because this short meeting would prepare him for future meetings, the more intensive ones where we would discuss his goals and his progress toward them. I want him to be an active part of these meetings, to usher him into the realm of self-advocacy. To teach him how to diplomatically make his needs known to others. I tried to convey this to him in terms that he could understand, but in the end, what motivated him to go was the fact that we would need to use a map of his new high school to find the room where the meeting was being held. He has always liked maps, and immediately plotted our route.

Due to an inaccuracy in the drawing of the map, we ended up in a hallway right outside what was probably the band room, just as a loud burst of instruments blared. Nigel, eyes wide, covered his ears and yelled, “Back! We must go back!” As soon as we re-entered the previous hallway we’d been in, I said, “Well, now you know to avoid that hallway.”  “Yeah,” he said, breathless but okay.

We tried a different route and found our way to the library, where the meeting was being held. Nigel saw the Regional Autism Consultant, who has worked with him since the IFSP days, and he seemed to relax. We sat at a table and waited for the rest of the attendees. I was emotional to have Nigel there with me for the first time, and tried not to dwell on the magnitude of it lest I lose my composure. Soon the others arrived – Nigel’s speech and social skills therapist, the high school’s special education coordinator, and one of his teachers for next year (the rest of his teachers will meet the week before school starts for the official IEP).

I no longer record the meetings; in fact, I think that first one was the only one I did. But I’m glad I did so that I could listen to it years later. It was in the forefront of my mind as I watched Nigel sit in his first meeting. And I am quite proud to say that it went very well. The sped coordinator talked with him as an equal, asking him what classroom accommodations he felt he would need, assured him that all sped students get first choice for electives, and told him that he would be checking in with her every day to make sure that things are going okay and that she would help him if he needs any help. His first week, he will have someone help him get to class, and he will never, she said, have to eat lunch alone. Trying not to cry, I thanked her. Nigel, although making no eye contact and constantly scratching his head because he had neglected to take a shower when he was supposed to, answered everyone’s questions, talked about his interests appropriately, and even made a joke. At the end of the meeting, when asked what he thought of attending that high school, he responded, “If this library is well-stocked with H.G. Wells and Jules Verne books, I’ll be fine.” Everyone laughed a genuine laugh, and I stole a glance at Nigel. I could have sworn I saw a little self-satisfied smirk on his face. Oh, yes, my son, you will be fine.

Changes

That David Bowie song is playing in my head – “Ch-ch-ch-changes . . . Turn and face the strange changes . . .”

Nigel and I have some big changes ahead of us. It’s been a year since I began homeschooling him, and just when I started to feel like I was doing okay with it, Nigel announced that he wants to go back to regular school. I’m not too surprised, actually. He is a social, extroverted person, autism notwithstanding, and even though he’s been involved in Scouts and has other social outlets, he’s reaching his limit of being home with Mom. And it’s showing in his lack of compliance with doing his schoolwork. It’s been increasingly difficult to get him to focus, to gauge if he’s learning anything, and if he is, whether it’s going to stay with him. His thoughts are always elsewhere.

I never expected to homeschool him for very long. Hell, I never expected to homeschool him at all until it became necessary! I had never even entertained the thought. I never thought I was the homeschooling “type,” whatever I thought that meant. I guess I thought it meant people who really wanted to homeschool their children for religious reasons – or any reason, for that matter. But once I realized that he needed it, a) because things were so bad at school that he asked me to, and b) because bussing him to a contained classroom in a different city was not acceptable to me, then I wanted to do it. Then I began to wrap my mind around it and come up with ways to make it happen. It was probably one of the biggest challenges I’ve faced as a single parent – making drastic work changes, schedule changes, and financial changes. I put so much mental energy into just getting used to the idea of homeschooling. Then I had to research what I was supposed to teach him, how to do it, and plan. It required a lot of focus to convince myself that I could do it.

It’s not over yet, of course, not for a while. The first step will be to see his doctor again, since we have decided to try some new medication to help with his behavior and need to get started with that. Then we need to attend his IEP (Nigel has requested, for the first time, to attend his IEP meeting, which is huge) to discuss what his options are. Most likely he will attend two classes in the morning and then come home, so he will be half-homeschooled. We’ll do this for spring term, and if all goes well, in the fall when he starts high school (gulp), he may be able to attend full-time with some support.

So, we’re making adjustments. It reminds me of when he was younger and he attended three different elementary schools before we found the right fit – we constantly made adjustments. We are no strangers to change. Part of me is feeling defeated – I had to work myself up to doing this in the first place (homeschooling), and now it is winding down. But it’s not like I’m throwing in the towel. We’re just making adjustments. Trying to find the right fit again. I have to believe that we will.

All Done IEP

When Nigel was about six and seven and using some spontaneous speech, he would tell me when he wasn’t comfortable with a situation. “All done rafting,” he said when I took him rafting on a mild part of a local river. “All done doctor,” “All done wash face,” and “All done vacuum” were heard frequently, or just “All done” between hiccupping sobs when something really upset him. It is in this spirit that I attended his IEP meeting today.

I know they mean well, the IEP team. Of course they do. One of them has known and worked with Nigel for ten years. But when I tell them the poignant story about Nigel doing art therapy in his yearbook, drawing ape faces on all the faces of the kids who had bullied him at that school, and the IEP team tells me that “a lot” of it was Nigel’s “perception” that the kids were bullying him, it makes me want to scream. It makes me want to knock a few skulls, okay? And then they suggest that maybe in a couple of months Nigel might be able to come back part-time (since I am currently homeschooling him). So I try to diplomatically reply, “Nigel really does not want to set foot in this school again. It’ll be all I can do to get him to agree to come to the once-a-week social skills class.”

IEP meetings tend to be the bane of every special needs parent’s existence. Until just a few years ago, I had two kids on IEPs. I thought I was tough. I thought I could do an IEP in my sleep. Seven years ago, my children’s father moved 700 miles away, and so I have attended these IEP meetings alone. And no matter what, no matter how many of these I have attended in the last eleven years, I still feel just as vulnerable. I still feel myself on the verge of tears, trying to hold it together, trying to convey to them No, it WASN’T just Nigel’s PERCEPTION that he was being bullied. How could they say that to me? After all that my child has been through? After all the calls they made to me at work, telling me I had to pick him up because of some behavioral issue they couldn’t handle. Because the constant bullying had driven him to such an agitated state that he could not even function. He could not make it through the day. It was not just his “perception.” That much I knew, as I breathed in sharply and felt my heart rate increase and my blood race through my veins at 8:15 this morning. I just looked at the person who said it. And then I looked away.

After that, we discussed his IEP goals, we talked about the social skills class, they asked how he was doing (much better now that he doesn’t perceive himself to be bullied anymore, thank you!), and they provided some math and writing materials that will be helpful for homeschooling. We discussed the benchmark testing he will need to do in the spring. We touched on options for high school next year.  We signed the papers. Said Thank you for coming. Went through the motions.

But at the end of the hour, as I walked out to my car, I realized that even though I had been upset by someone’s insensitive remark, my mantra pulled me through. “In an hour this will be over, and Nigel’s needs will be met.” This is what I say to myself before every IEP meeting. And somehow, no matter what happens, it works. All done IEP.