By Joanne DeSimone
As an advocate, I help parents and district case managers find appropriate placement options for their students. As a special educator and parent of two children with disabilities, I use the knowledge I’ve acquired from sitting on both sides of the table.
When parents call me for placement options, I especially lean on the experience I had with my younger son, who is on the autistic spectrum. I found that the only thing worse than watching him struggle in a failing school placement was feeling as though we’d run out of options.
After nine-and-a-half years, it is still easy to recall my son’s long and difficult kindergarten experience. I knew what my son needed, and after months of school tours and rejected applications we finally found a good fit. But by the time we won our legal battle, all the available seats were filled. In desperation, we moved from our home state in order to accommodate our son’s needs. Relocation made sense for us because we needed a wheelchair accessible home for our older son, who has cerebral palsy. Yet, moving isn’t feasible for everyone.
While there’s no perfect science to finding the right school, there are some key factors and questions to consider. It’s important to remember that there is a continuum of placement options, including the general education classroom, integrated settings, resource room, self-contained classrooms, private special education schools, and home or hospital settings. School teams are legally required to consider all options and explain their recommendations. A good way for parents to engage as an equal member of their child’s study team and ensure they can make fully informed decisions about program recommendations is to visit a variety of placement options. Additionally, I suggest contacting the school’s SEPAG (Special Education Parent Advisory Group) and PTA, and searching for school parent groups on Facebook in order to get another parent’s perspective.
In an effort to develop and maintain a successful individual education plan, I strive to keep an open, ongoing dialogue with my sons’ teachers. Parents and teachers have different perspectives, insights, and skills. I remember, as a new teacher, thinking I understood all I needed to know about working with families. When my oldest son was diagnosed with cerebral palsy, I realized how little I knew about what it meant to have a child with a lifelong disability. My naiveté didn’t come from a lack of care or dedication. I believe it came from lack of connection and dialogue. A teacher only knows what’s in a child’s chart and what a parent wishes to divulge.
Avoid an “Us against Them” Mentality
When a child struggles in a school placement, it’s easy to adopt an “us against them” mentality. I find it’s easier to avoid this by reminding myself to foster that collaborative relationship with both my sons’ school teams all year long. I need their educational knowledge and they need my parenting expertise. In moments of tension I remind myself that we all have the same goal of supporting my sons in their efforts to succeed in school and beyond. I’ve found great success in approaching team members by saying, “We both want the same thing, now what can we do to make it happen?”
When a parent calls me for placement options, one of the first things I ask them to do is to describe their ideal program. I find this strategy helps to home in on the child’s learning style, recognize the strategies that enable the child to be successful, and prioritize their needs. My goal is to get an accurate picture of the whole child, not just their classification and diagnosis. For every disability there is a spectrum of ability, so the goal is to find a program that can accommodate the child, not the label placed on them.
I sometimes compare school tours to house tours. When you find the right home, you can feel it in your gut and you start imagining where your furniture will go. In the right school, you get a glimpse of your child belonging. While I enjoy when a school passes the gut-feeling test, the teacher in me likes to keep realistic expectations. I don’t expect a school to meet 100 percent of the items on my fantasy school wish list, but I do try to gauge if a program is forward thinking. When I toured a prospective school for my older son, the principal detailed plans for a vision therapy room and a sensory integration room. While the school’s strong sense of community had impressed me, I was even more delighted by their progressive attitude. Children’s needs change over time. It’s good to know how flexible the school can be in order to meet a child’s growth.
It is often said that special education isn’t a place, but a service. I see this service as a fluid work in progress. Sometimes you have to pick your battles. Just because there’s one bad teacher or problematic situation doesn’t mean you have to give up entirely on a placement. By all means don’t ignore a problem, but like Mr. Rogers said, “Look for the helpers.” Hopefully, you have been able to maintain ongoing, open communication with several team members. Rely on those positive relationships as much as you can.
My son had a situation where one teacher refused to follow his IEP modifications. I watched his grades plunge from week to week. Part of me worried that this teacher’s behavior would not be an exception and so I questioned the nature of his placement. But one team member was working as hard as she could to rectify the problem. Together we came up with several options, presented them to my teenage son, and gave him the power to choose. Although I wasn’t happy with the situation and it didn’t work out the way I’d hoped, I used it as a teaching opportunity. Now my son has a better understanding of his IEP and how to advocate for himself without being adversarial.
Document School-Related Interactions
I do advise documenting all school-related interactions. Buy a big binder. Communicate as much as possible with your school team in writing, and save everything. Not only are you creating a running record that could be used at IEP meetings or a formal hearing, you will also have an accurate, detailed book of your child’s educational history. Memory is a funny, unreliable thing. Give yourself a break by recording events as they happen.
Finding the right school fit is perhaps most stressful during the transitional years. Change is hard on a child, and it’s no easier on parents. When a child is thriving and a parent has a good relationship with the school team, it’s scary to move on to the unknown. If a child is struggling, it’s difficult to imagine progress in light of ever increasing academic expectations. The goal is to meet the child where they are, but also to support and expect measureable progress.
Like many students, my younger son struggled in his first year of middle school. Uncertain about staying with his program, we toured a second in-district option. The choice was still unclear, so I requested sample homework materials for both programs in several subject areas. Making side-by-side comparisons helped us to see which program would be most appropriate.
Another thing I did to lessen my anxiety during middle school and high school transitions was to work on giving his future school team the most accurate picture of my son I could. The truth is, good teachers do more than simply abiding by an IEP. Think of all the things you do as a parent in order to make the day run smoothly. It’s probably more than you give yourself credit for. I told his teachers, “Imagine a complete stranger reading this IEP and include everything you do that contributes to his current success.”
For me, transitions were also difficult because as my sons got older I worried more about graduation and the future. While fostering independence has always been a goal, teaching self-advocacy takes a stronger priority by the time a child is in high school. My goals and my sons’ goals aren’t always the same, and I’ve had to learn how to step back more and give them a stronger voice. After so many years of advocating, it takes a conscious effort to hand over responsibility to my children, but that’s been the goal all along. The more they speak for themselves, the clearer their strengths and challenges are.
All of this is to say that the better a team understands the whole child, the more likely the correct school placement will be found.
About the Author
Joanne De Simone is the Outreach Coordinator of the Alliance of Private Special Education Schools of North Jersey. She is a special educator, advocate, and writer. Her essays have appeared in several publications, including The Washington Post, The Huffington Post, Literary Mama, Brain, Child Magazine, and The New Jersey Council on Developmental Disabilities’ blog. She is working on a memoir about reconnecting to the lessons she learned as a modern dancer in order to balance her sons’ medical and educational challenges. Joanne blogs about special needs parenting at Special-EducationMom.com.
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