27. It’s Time to Join Stuff

“It’s Time to Join Stuff”

This year, I’ve made a pact with myself that I would get more involved in things around me, especially pertaining to special education. The kids being a bit older makes that easier because their own schedules are busier, and plus A is less stressed about us showing up at his school, which always helps.

I admit I’ve held myself back also because we have had such a fractured and wary relationship with our school system, and after all the peer nastiness I’ve seen G endure, I had, besides a handful of much loved friends who are exceptions, also lost all interest in socializing with people in our immediate vicinity. I cannot emphasize enough how strongly I feel that culture shock regarding my expectations of schooling has played a part in me walling myself off. New Jersey can be an aggressive, off-putting place for someone from a less confrontational culture, and some days, I just don’t have it in me to pretend that I enjoy the vibe.

But since last night was our town’s SEPAC (Special Education Parent Advisory Council) meeting, and the organizers are such great people, I decided I would gird, well, the bits that get girded, and attend. SEPAC is a mandated thing for school districts in New Jersey, which is a really cool way of saying “You have to give families a chance to tell you what they really think of special ed.” Haha. Some towns have more active SEPACs than others, and one of the reasons I showed up was because the people who run ours are really trying, and as weary and isolated as special needs parents can get, we are shooting ourselves in the feet if we don’t try to make some connections with one another. Thus begins “Project Community Engagement” and I will see where it carries me! I tend not to be a joiner, but one must be optimistic.

Last night’s speaker was Karen Antone, a parent group specialist from SPAN (Statewide Parent Advocacy Network). She very kindly gave me permission to write about her presentation, which was called “Parent Involvement in Special Education: Overview of Your Rights.” Thank you, Karen!

The talk began with a flyer that gave some guidelines about how to successfully build and maintain a good SEPAC. I was filled with mixed emotions about some of the points, but found them wonderful in theory. We should not run it as a support group to air our gripes, apparently, which I confess made me laugh, since I’ve never seen a gathering of special needs parents that wasn’t on some level a huge group confessional. But keeping the focus on school district policies is the productive way forward, I agree with that. SEPAC should also be sure to include families of kids who attend school outside the district, like A, who is in a special ed school.

My mixed emotions were flying free when I read about how SEPAC must strive for diversity, and that it should “create opportunities for active participation.” The cultural differences cannot help but be at play here, since some of us just aren’t able to be as forceful and tend to get talked over, and a couple of times in the past, even had our talking points taken from us and explained FOR us by other attendees. While these may seem minor to some people, they frustrate me a great deal, and form part of the reason I tend not to participate in town happenings.

Many of the ideas brought up by Karen are things that my husband and I have learned from experience and from our own reading, but Karen’s strength lay in giving lots of examples of how to apply the ideas to improving our kids’ IEPs, and how to be part of a less contentious, more harmonious relationship with the child study team. Again, I felt a lot of mixed emotions, not just because you have to know the correct jargon, otherwise your suggestions tend to get smiled at and ignored, which is a really cold way to treat people who bring less knowledge of special ed law to the table, but also because, until A left the district, we had never really experienced an IEP meeting where we felt like truly equal participants.

As our kids move up through the school system, we all learn more skills, and I enjoyed listening to Karen narrate how she used some of that wisdom to make things better for her own kids. It’s really important that our kids not just get shoved along from grade to grade, but that they make some real progress, and also that they are prepped for the task of becoming productive adults. Karen explained very well the distinctions between IEPs and 504s, and the different federal laws that shape their implementation, and she described what a good high school program between ages 18 and 21 should be doing to help shape the future–vocational training, job coaching, and courses for college prep, if relevant. For beginners to the special ed process, this is good information to have.

Some of the suggestions for how to participate more productively in our kids’ education were really helpful. Karen encouraged us to fill out those positive student profiles every year, and also showed us an “All About Me” form that will help our kids’ bus drivers to understand how to handle them a little better. I have to think about that for a bit. As much as I love A’s new school, I am finding his bus peeps a tad disconnected, and that is not reassuring when your kid is non verbal and prone to impulsive behaviors.

I was intrigued by the finer point-type suggestions. For example, we knew to write in that A needs assistive technology, but Karen said that if needed, we should also ask for teacher training for said technology. This was an issue when A was in district, and we didn’t know we could ask for that. Of course, it bugs me that unless we say the words, no one feels compelled to act, but the wheels of special ed turn thusly, so we must have a spirit of acceptance. Karen also told us that we can “partially” sign an IEP if we disagree with one or two points. I’m glad to know that.

Attending in-person talks tends to give a clearer picture because of spontaneous discussion, and such was the case last night. For those of us who have kids out of district, you could see us all shifting uncomfortably when Karen brought up the fact that transitioning the child back into the district is always the goal of the school, and our job is to make sure that it is achieved appropriately. At least for us, the decision to send A out wasn’t undertaken lightly, and we would be shattered if he were brought back to the way things were. I don’t even want to go there in my mind, which may be cowardly, but so be it. Moving on for now!

A teacher from our district who was at the talk mentioned how frustrating it is that the standardized state tests are not modified for special ed kids, and how the level of abstract thought required to do well made the students feel very demoralized. Karen mentioned how teaching test taking skills could be written into an IEP so that students can be taught to succeed. If we can’t avoid tests, we can at least learn to pass them? I thought that was a reasonable suggestion for an unavoidable pain in the hiney. A doesn’t take the mainstream tests, but I can understand this concern for anyone whose kid has to cope with testing anxiety of the special needs variety.

We then moved on to the “how to bring a spirit of meeting halfway to the IEP process” part of the talk, and a little tableau began to play out right in front of us as we sat there. A mom who was attending the talk had brought her teenage son with special needs with her, and as the time passed, he grew restless and began to forage for snacks. I was very moved to see all the case managers who were attending the talk step into action. They took turns to redirect his behavior, hid the snacks so that he wouldn’t overeat, and when he began to spill crumbs and milk around out of frustration, they all stood up en masse and cleaned up without a word. It made me tear up. Their kindness made it possible for the mom to listen to the whole talk, and really served as a wordless reminder of how parents and school can come together and form a community.

There were some excellent suggestions given about how to work cooperatively with the child study team, such as how to phrase our expectations; the importance of letting the team present suggestions also, and not just insisting on our way; and knowing the law so that we can help our kids, and not so that we can be in a perpetual fight. Karen said that instead of, say, pushing for extra speech therapy in our kid’s weekly schedule, perhaps a social skills group at lunch that works on reciprocal language would help a kid make friends and lessen the chances of being ostracized or bullied. Sometimes the problem is social just as much as it is academic.

It was evident from my own internal barometer, and also from watching other parents’ reactions, that we’ve all occasionally had our efforts to meet halfway met with the doormat treatment, so clearly we were a tough crowd. But it’s always good to hear a speaker’s perspective, especially someone who has attended her own kids’ and other people’s IEP meetings, and has a good knowledge of our rights. Some gray areas that stood out to me were the Extended School Year options; bus transportation that enables our kids to have access to inclusive activities being so restrictive that we are often required to be extremely free during the workday, which is not practical for a great many families; and the right to program access. In theory, our kids can be part of whatever they want in their town, but in reality, this can take lots of pushing and shoving and reminding people of laws and rights.

There were some good side discussions about the value of forming social clubs so that our out-of-district students can get to know peers in town. In our town, this is another gray area. In our family’s experience, we have had to look further afield for such opportunities for our kids because of small town dynamics being too exhausting for us to navigate, and also because there is a noticeable amount of religious self-segregation in our town, and how are we to navigate peer friendships for our kids if the adults have so little in common, and so little investment in bridging those gaps. As our kids get older and have hobbies that draw them to likeminded people, perhaps it will become easier.

But I will say that we were all there with the intent to try again and to have faith in one another. I was met with an atmosphere that was welcoming and convivial, and can say with certainty that I found my cautious foray back into SEPAC to be rewarding. It’s important to seize all opportunities to empower ourselves as special needs families, and not just say “empowerment” as a feel-good word. So I’m trying! I’ll let you know how it goes.


2 thoughts on “27. It’s Time to Join Stuff

  1. Great job describing the meeting in such rich depth. Your account brings together a lot of threads – the emotional, physical, legal and social challenges that you face as an autism family on the intersections of policy and community. I’m really glad to hear that you’re stepping out into this. I think you have a lot to contribute, and I’m getting the feeling that these sorts of spaces could really do with a diversity of voices – even ones like yours which start soft but grow in conviction.

    Liked by 1 person

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