Autism, Back to School, Medically Fragile, Parenting, Public School, Rare Disease, Sensory Processing Disorder

When There is No Place for Your Child with Special Needs in the Public Schools

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.

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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.

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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.

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.

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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 has 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.

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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 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.

We want to know if you are a parent that has felt like this. Have you had to pull your child out of Public​ School? Please comment below!

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11 thoughts on “When There is No Place for Your Child with Special Needs in the Public Schools

  1. Pulled miss 9 also high functioning autism out in May and in the process of trying to work out what is best for my son constantly being bullied his mental health is more important to me then school, he hasn’t attended for 2 weeks.😢

  2. I pulled my daughter out in April. She has anxiety/ADHD/SPD and did do well with an aid but then they hired one without experience and she had many racist incidents that spiked her anxiety. She was equally triggered by gen ed and the SPED room. It is so hard when the one size fits all supports don’t fit for your kid.

  3. My husband and I have had your struggle- out son is 13 (7th grade). I felt nervous and knew he was not getting an education. My son has Executive Functioning Dusorder, Visual processing disorder and a host of medical issues. We have done public, private, homeschool and combinations of both. We have moved twice in hopes of finding a system that would meet his needs. We also have a son 16 months younger who functions well in a normal school environment. It helped me so much, when I realized most schools are able to meet the needs of 80% well. The other 20% have issues. Our sons have to many needs to be successful in the environment most schools offer. Our son, like yours, cannot function well in a regular classroom. The school system gave us a program, that allows him to work independently for math and English. He goes to school for lunch and a small math group. He will also have a “special” music, drama, etc……We are going to try science in a classroom. He likes science and he can do it well. Like you I do not want to homeschool. There is no downtime. My husband travels frequently for work. I got a tutor from a local college. It is cheaper than private school and he actually learns. Homeschooling allowed me to try different methods and through trial and error we both figured out what works for Will. Here are a few lessons I learned:
    1 Learning should be fun. Use Legos, video games, library, museums, movies games
    2. Pinterest is your new best friendThere are uber mommies who have already done the work.
    3. Learning g has not been easy or enjoyable for your son. Make fun a priority!
    2.if you get frustrated take a break.
    4. Give him lots of breaks
    5. There will be gaps but schools and teachers are not perfect.
    6. If it is hard move (concept)on and try again in a few weeks or months.
    7. Find what your sons like trains, Legos, animals and start there.
    8. Throw away your expectations of where he should be. Progress is all you need. Many boys are slow in the early years but catch up by 10 to 14.
    9. Use errands as a way to teach math, map reading, read signs. For example, give him a calculator and let him punch in the prices. Ask him how much did we spend on aisle 3.
    10. My boys had bad handwriting. We traced maps, superheroes, presidents, animals……Typing is so much easier for boys like ours.
    . Don’t buy a curriculum. Wait and see what works for your son. If he is learning numbers, you can ask him athim to hand you 2 cans of corn or 1 loaf of bread. Success will breed more success and confidence. Enjoy your son. It so helped our relationship. In the end things to work out. Will has plans to go in the medical field. Five years ago, I never thought he would graduate 2 nd grade. Be patient with yourself and your son!

  4. This will be our first year homeschooling. My son is 7- diagnosed ADHD, ODD, anxiety and has emotional dysregulation. I am terrified but I feel like this is our best option. My son has several learning delays and gets so easily frustrated when he’s not able to perform, which made public school impossible since my son wasn’t able to get the one on one he needed. Here’s to happy homeschooling!! 💜

  5. This will be my first year homeschooling my daughter. She has severe reading and mathematical dyslexia, anxiety, OCD, and sensory issues. The school informed me in May that they were going to inclusion rooms and I was like, Nope! Not happening. So here we are. Everything you said really hit home! These are exactly my feelings. I wish you NOTHING but the best in your homeschool journey!

  6. Although my children are not medically fragile, they are emotionally fragile and all five have SLD, which means it terrifies every single year to send them back to school. I have homeschooled in the past but also want them to have some semblance of a typical childhood. The battle is real. This year they are off to public school again and I too feel battle weary before the fight has even begun.

  7. I could’ve written this, years ago. My son is autistic, g-tube fed, cerebral palsy, and I pulled him out to homeschool him after attempts at inclusion weren’t meeting his needs. Don’t doubt yourself, you know your child. I homeschooled until he graduated, then he went to college and is now a Rhodes Scholar and we are soon leaving for England for him to study at Oxford. You may be surprised at how it all turns out!

  8. I am dealing with this now, last year in Prek we were blind sided by the intensity of his sensory issues that we did not realize existed till he started school. He is great one on one but if he gets around too many people he gets overloaded and has a melt down that sometimes includes chair throwing and hitting, we did not see this behavior at home and we’re in shock and denial when we were told what was going on and I was convinced it was the schools fault, until I observed a day in his class, I had him tested, they sent me a letter basically telling me nothing was wrong with him, months later I had to go back to and insist they observe him in the class, they told me he had almost tested gifted and it wasn’t necessary, I pulled him out for the rest of the year, now exactly one week after school started he has been suspended already, they do have him in a smaller class but he expressed there was too many people at lunch time and by the time he got back to class the melt down began. The school has promised to find out who dropped the ball and do their best to get him assessed but whether that will happen or work has yet to be seen, I have to work 24 hrs Saturday and Sundays because I can’t get a job during the week because I never know when the school is going to call me.

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