Emotionally exhausting but the best medicine for my soul

Cami Fawzy (right) is a faculty assistant at the University of Maryland University College and the mother of two sons, the youngest born with Down syndrome. In addition to being a passionate advocate, Cami is the leading the Coded Generations documentary project. You can view a trailer on the film’s website at https://www.codedgenerations.com/. Cami recently attended the TASH Capitol Hill Day and we are publishing a post from her blog with her permission. Read more from Cami and support the documentary at the Coded Generations website.

If I would have to describe the experience in a nutshell I would say “emotionally exhausting but the best medicine for my soul”! For me, the worse feeling is to feel powerless when it comes to my children and although I went to advocate on behalf of TASH it was this organization that gave me the opportunity to feel empowered, to feel that I have a voice when it comes to my children’s wellbeing. However, while doing this with my children in mind I do hope it will benefit many others who cannot have their experiences heard or shared.

We visited the offices of our senators and representatives to discuss the TASH public policy agenda related to four areas: protecting students with disabilities by restricting the use of restraints and seclusion, promoting inclusive education practices, supporting competitive and integrated employment for transitioning youth and adults with disabilities, and ensuring that Medicaid resources are used to support people in their communities instead of in institutionalized settings. We also attended a panel who provided a Congressional Briefing on the current issues with restraint and seclusion practices, demonstrating the flawed thinking of schools and residential settings and how these practices actually cost money and hurt people.

I was pleasantly surprised with the knowledge many congressional staff had about the Keeping All Students Safe Act (HR 1381) and their willingness to discuss with the legislators to co-sponsor this law that will keep so many children safe in our public schools. On the other hand though, I thought our delegation surprised most people we met with when we started to talk about the ESEA-The Elementary & Secondary Education Act. Most people expect an organization advocating for the rights of people with disabilities to go talk about IDEA and it was surprising to hear us dedicate some of the valuable meeting time to talk about an education law that refers to general education. Well, this is where the argument came in. As long as we see GENERAL EDUCATION and SPECIAL EDUCATION as two parallel systems, there is no way to see REAL INCLUSION happening at the implementation level. Experience is showing us that only when school administrators and general educators think of children with disabilities as valuable stakeholders of their school they think about and put the effort in providing the necessary school accommodations, instruction & curriculum modifications to ensure their success. However, how can we, parents, advocate at the school level for an inclusive education culture when teachers and school administration training in best practices in inclusive education is elective and mostly ignored even when they have children with disabilities in their classes/schools as IDEA requires. IDEA enables parents to advocate for their children to be placed in the Least Restrictive Environment, meaning general education as much as possible based on the child IEP. At the same time, under IDEA, parents can ask school administrators and teachers to adapt the environment and modify their instruction but to what extent this actually happens is a very different story for those educators who either do not understand or accept that students with disabilities actually BELONG to them, and they should at least be trying to include them.

The sad part is that those educators ignore the fact that such modifications would benefit many others in the school and would ultimately contribute to an inclusive culture that will provide the best example all children could carry through their adult lives. One of the parents in our delegation has her son bussed across town to be in a school that provides accommodations for children with autism because the neighborhood school is not “equipped” to do so yet. Another one advocated for 8 years for her daughter to be removed from a special school into a general education school only to see her now in a self contained class able to be around typically developing children in the lunch room, at a separate table of course. To me the ironic thing is that while my son attends a general education class with supports, the lunch room is among the most difficult to navigate due to his messed up hearing and consequent sensory integrations issues, making noisy, chaotic rooms full of kids/people truly painful experiences. He is not the only one and if given the opportunity to have lunch with some friends in a quieter place would not only allow him the learning experience we send him to school for but would also teach his typically developing friends what it takes to have a fun, positive experience with him. …and who knows, maybe one of them might open a restaurant and provide a “quiet” area where many people like his friend could actually come and enjoy a nice meal, a romantic experience or simply a regular night out with friends in a place that accommodates their needs and welcomes all clients….but maybe that is too far to think!  

Unfortunately, having children with disabilities in public schools that do not really welcome them and provide the necessary supports and accommodations is a HUGE problem that surely results in poor educational outcomes and unfortunately, many times worse: restraints & seclusions. It was so hurtful to listen to the panel’s arguments against restraint and seclusion in public schools and I truly hope that people leaving that congressional briefing walked out with at least one important argument: Restraint and Seclusions are NOT therapeutic techniques and do only HARM. I kept thinking about the need for these methods and the argument that they are meant to “protect the child from himself/herself or others”. However, Joan Gillece, SAMHSA’ Project Director, cleared the only little doubt I might have had when she argued that when a child is in danger we would immediately respond and hold to protect the child anyway and once that moment passed, why would we have “trained” personnel continue to restraint or seclude the child for one extra minute more? That extra minute or many more that follow are only the bases for future emotional trauma and more behaviors! For a reveling report, please visit TASH’s site  and download the parent prevention guide! It is truly unfortunate to see the level of abuse taking place in our US public schools and I challenge you to watch through the Jeremiah’s Video on the Families Against Restraint and Seclusion website (disclaimer: I was only able to watch the first 3 minutes)!

 Thank you TASH!