School Placement: A Parent’s Experience Navigating the Process
By Cheri McLane, Metrowest Regional Coordinator, Family TIES of Massachusetts (FCSN)
Educational inclusion is a wonderful opportunity for students, teachers, and administrators to learn and enrich their lives. Ideally, this would be the case for every student with special needs and their local school. Unfortunately, a variety of factors may make this ideal unattainable in some circumstances.
Life was on the upswing when our social butterfly, Julia, attended integrated public preschool. Julia has Prader Willi Syndrome (PWS) and chronic hip dysplasia. Classes were small and quiet. Teachers connected with and motivated our daughter. She flourished. After preschool, the shift to mainstream public education was daunting. Her educational profile is complex. It includes poor short-term memory, impaired information processing and analytics, and cognitive delays. Her physical needs also warrant attention. Our district proposed a new program at her neighborhood elementary school. Even with aide support, Julia’s reactions to this over-stimulating environment were predictable. Even with professional trainings and countless progress meetings, her needs were misunderstood.
The administration repeatedly proposed an in-district behavioral program. Through years of cumulative classroom data, they demonstrated that no amount of rewards or consequences would ever change Julia’s genetic predisposition to react emotionally to the demands of a fast-paced classroom. Julia attended an integrated third grade classroom, but the writing was on the wall. Our vision for our daughter changed.
Failure to understand the full impact of a child’s medical diagnosis is stressful and may lead to dissension around school placement. In January 2014, our district expressed concern about their ability to meet Julia’s needs in-district. The district focused on Julia’s behavioral issues and proposed several schools. These schools mainly serve students with different needs than Julia, those who have experienced trauma, abuse, neglect, PTSD, and mental health challenges. These programs did not offer the therapeutic services or medical expertise that Julia requires.
Our list of private special education programs differed hugely in terms of mission, population, and services. We agreed with Julia’s specialists that she should be placed with students whose primary diagnosis includes cognitive delays and medical complexities. Meanwhile, Julia languished in her school placement for the rest of the academic year.
The expression “the grass is always greener” comes to mind. We eventually realized that our greatest challenge was not obtaining an out-of-district placement, but finding the right school – one that was willing to give Julia a chance to prove herself!
The Steps We Took
We felt the full weight of finding the right school for Julia as the process dragged on. The district suggested home-schooling for Julia in September if programming was not in place. We broadened our search by talking with all of Julia’s care providers. We spoke with her doctors, therapists, neuropsychologist, advocate, DDS (Mass. Department of Developmental Services) liaison, support groups and parents. Prader Willi Syndrome National was invaluable in providing support and resources.
We visited three special education schools that have experience with PWS and two behavioral schools proposed by the district. We brought a list of questions we prepared to each visit in order to observe and collect information. The key to this process was creating a “data dump.” This was a chart listing each program and checking off the various components. That way, we were able to have an apples-to-apples comparison. We could hone in on the programs that met her highest-priority needs. This tool helped alleviate some of the stress of the process.
The comparison chart narrowed our selection to two schools, one recommended by her primary care physician and one by her DDS liaison. Both schools could support her academically and were interested in meeting Julia. After her interviews, we decided that one school offered a more rich and social school life for Julia. After last year’s tumultuous school experience, we held our breath during Julia’s trial week.
We bet on our understanding of Julia’s needs and found a school that understands her genetic condition and brings out the best in her. We are so grateful her new program was willing to give her a chance. Despite the tremendous financial and emotional toll it took to get here, Julia’s new school feels a bit like winning the lottery!
For a similar school comparison tool, visit http://maaps.org/for-parents/program-check-list.