Editor’s Note: Katie Paulson so graciously shared this blog post with us. You can find this original blog and more like it on Katie’s blog site Without A Crystal Ball.
Back to school is an exciting time for kids as they pick out school supplies, and get to shop for new clothes. Parents are excited to get their children back into a more structured environment, and the endless merry go round of trying to keep their child from boredom over the summer. Pictures start to pop up on social media with countdowns to the school year, and cute photos of children in their new duds holding signs declaring their age, name, and interests fill our feeds. It's back to school more the mainstream, and there is another subset of our population that is sitting at home dreading IEP meetings, worried about their child being bullied, terrified of sending their child on the bus, and concerned about their child's ability to cope and manage to go to school. Parents of children with disabilities prepare for the battlefield every academic year, and they try their best to equip their child with everything they need to be successful. There is always a sinking feeling that the school, the teachers or the staff will somehow fail their child.
In the special needs parenting community, I rarely witness sheer happiness about the upcoming school year. Most of my social media feed is full of parents strategizing how to get through their annual IEP meeting, and hoping they don't forget all the important details. I see grit in their hearts, fear on their faces, and I can sense their nerves as they panic that their child's accommodations will not be satisfied. We have come a long way in this country to help children with special needs, but we still have a long way to go in the public schools. Funding is tight, schools are densely populated, teacher to student ratios are increasing, and in many districts, there is either limited staff to manage the special education program or limited funding - or both.
There is a massive push for inclusion, and to make the children with special needs be with their typical peers.
There is a massive push for inclusion, and to make the children with special needs be with their typical peers. In theory, this is an incredible testament to how far we have come as a society in our fight for inclusion. In some respects, it's a heavily ablest perspective that children with special needs will be able to cope with the stressors of large class sizes, over stimulation in classes, and be able to keep up with the pace of the instruction. Schools have tried their best to assist children in this area by allowing these kids to have para-professionals sit with them, keep them on task, help with their assignments, and minimize their stimulation and distraction. However, there remains a vast majority of children that even with these accommodations still become disruptions to classes, meltdown due to being asked to sit still for longer periods than they can handle or they hold it together long enough while at school and arrive home falling apart at the seams and feeling overloaded and frustrated.
For a parent in this situation, it can feel like there is no compromise. Certainly, for many, it can feel like they are fighting not only for the schools to do what they promise but to ensure their child's education and needs are met. As I have moved through only two years of preschool with my son, I have already had to challenge IEP meetings. There have been weekly and monthly check-ins to make sure IEP goals and directions were being followed. Then there was dealing with my son feeling completely and utterly overwhelmed by the class he walked into every single day. For two months straight, my child would cling to me when it was time to drop him off. He would cry in my arms because he didn't want me to leave him. Several days, I would have to push him off me and run out of the room so he would engage with his peers.
...it became apparent to me that they didn't understand the severity of his illness nor the deficits of his development.
The school tried very hard to meet his accommodations, but about halfway into the year it became apparent to me that they didn't understand the severity of his illness nor the deficits of his development. Privately we had therapists and psychologists advocating for small class sizes for our child, and in meeting with them, they were telling me that my son needed to be in a class with 5 to 6 kids, with low stimulation, room for him to move, and limited noise. I agreed with them 100%, and when I shared these concerns at school - we were told he was too high functioning for the smaller classes and they would provide him a para-professional to keep him on task and from being a disruption. As a parent, I felt like the needs of my child that were recommended by licensed medical professionals fell on deaf ears at the hands of the school administration. I realized then there is no space for children like my son in the public schools.
My child is not only autistic, but he also is g-tube dependent and cannot burp. For my son to be able to breathe and manage his gas, we have to ventilate his g-tube with an extension up to 10 times a day. He has a heart condition, adrenal insufficiency, low tone, and a compromised immune system. When I sit in meetings with the school staff, I know they are trying their best, but a part of me feels like I'm climbing a mountain that is not just steep but rather straight up and down. There doesn't seem to be a feasible solution for my child in the public schools where his medical needs can be met, and his high sensory profile and processing delays can be satisfied. Due to his verbal capabilities and his normal intelligence, he is too high functioning for the smaller special education rooms. On the flip side, his central auditory processing disorder, sensory processing disorder, and auditory sensitivities mean he's not well suited for a typical classroom either. It seems we are at an impasse where he isn't low functioning enough for more one on one instruction in special education classes, but he's also functioning at a reduced capacity to his typical peers.
...I feel I need to pull him entirely from the school system and homeschool him.
My only option at this point is that I feel I need to pull him entirely from the school system and homeschool him. I know many parents flock to this idea and WANT to homeschool. I don't WANT to homeschool; I want him to have a typical life where he goes to school, is involved in activities at school, and plays with friends daily. Based on the current accommodations that are being offered to him, there is no way in good conscience I can send him to a place where he won't have medical assistance for his health. I know that one tiny misstep or a slip or fall by him could mean life or death. Without a guided professional at his side each moment, there is no way I can ensure his safety. There is also no way I can be assured that the large class sizes won't affect his learning and ability to cope with the stimulus. We have come a long way in special education in the last 100 years, but we still have a long way to go. I speak to parents like me every single day that have no place to put their child because schools have no place to accommodate their needs. Yes, they can have plans put into their IEP, but too often, they are not followed or are completely disregarded. I can't even tell you how many friends I have that have had to sue their districts to do what the IEP said it would accommodate.
Today, I sit here frozen as I type this because part of me doubts my skills to be able to homeschool, but I doubt the schools more than I doubt myself. That's a crazy place for me to exist. I am a product of the public school system, and I graduated from a public University. My mom was a teacher and spent her career working in support positions at a public school. My father was a school board member of my school for 20 years. Pulling my son out and homeschooling goes against every fiber of how I was raised and who I have become as an adult. There are thousands perhaps millions of other families going through this same internal battle every single year. I know in my heart, my only choice is to homeschool, and part of me feels like by doing so I am stripping my child of a typical childhood. However, I want my kid to survive into adulthood, and I want him to learn in an environment that is suited for his sensory needs and medical needs. Right now those needs can't be met in our public schools.
Back to school is here, but for many of us in the community, this time of year can be downright stressful. If you have a friend or family member that has a child that has considerable needs, please listen to them, hear them when they say they feel trapped, and try to support the choices they make. Most of us are doing the best we can and making the best choices we can make with what is provided to us at the time. Many of us know we could fight harder, raise hell, or battle it out in court. However, many of us don't have the energy to fight, and the best alternative is to homeschool their child with special needs. My hope in sharing this is that more people become more aware that pushed inclusion of all children is not the best option. I dream of a day where more schools open up specifically for children like mine, where small classes can be accommodated, and where children with medical conditions can be safe. Until then, we will take our fight home and work together, learn together, and start this crazy world called Home Schooling.
Katie Paulson is a Freelance Writer, Blogger and Advocate for Individuals with disabilities. Katie has been featured on The Mighty, Yahoo Parents, Huffington Post Denmark, Mamamia Australia, Firefly Friends, and her family was featured in a Cover story in Fohla Sao Paulo, Brazil. She works tirelessly in her community to improve access and inclusion for children with disabilities. She is founder of a local support network in her community. Her goal is to ensure all individuals with disabilities are given the respect, rights and access they deserve to live a life of inclusion. To read more from Katie visit her blog Without a Crystal Ball.