Advocating For Accommodations At School

School starts next week! Can you believe it's time again already? I love summer but with the high HIGH temps we’ve had this year I haven’t enjoyed a lot of time outside so it doesn’t feel like back to school time for me.

Regardless, back to school is always busy but whether or not it's “exciting” may vary based on whether you have a “neurotypical” child, a “neurodivergent” child, or a child with special medical needs. School systems are designed for what I call the square peg child – the average child who has no special needs and checks all the boxes for “normal," whatever that really means. If you have a square peg child, back to school is likely a very easy process of buying clothes and supplies and getting back into routines. But when you have a round peg child – one that isn’t “normal” by the current societal norms, one who needs a shot with meals, who has unexpected seizures, one who struggles to read or write, or who struggles with any of the other things that are considered “typical or normal” then back to school can be a nightmare.

I have 4 daughters and while they are generally, happy and well behaved kids, none of them are what I call a square peg child. My oldest daughter is off the charts smart but struggled socially. By third grade we learned she had ADHD which presents differently in girls than boys. Girls typically aren’t the run around like a motor kind of kids, they tend to struggle with social self control and organization. Thankfully with well-planned routines, staying highly structured, and medication for a period of time her symptoms were controlled and she didn’t need accommodations. However, daughter number 2 wasn’t so lucky.

I learned education law and how to advocate for the round peg kids because of child 2 who was diagnosed with Type 1 Diabetes at age 4. At the time she attended a private Catholic school that wasn’t subject to all the federal laws on education accommodation. However, we were blessed and St. John Nepomuk embraced my daughter’s illness with open arms accommodating everything she needed. As we moved into public schools there were more challenges and we needed to take advantage of the federal laws.

My younger 2 girls have been through a lot of trauma in their life due to circumstances with their biological mother. The littlest one deals with ADHD and tics. We are still working to figure out what works best for controlling her symptoms and accommodations needed in school. It has been particularly challenging as she hasn’t had a normal school year since pre-kindergarten so she has the challenges of COVID delays along with ADHD.

Number 3 has always been very sensory and has a lot of anger to process. The anger causes her to become frustrated easily and she is likely to shut down when she is unsuccessful. While she doesn’t have a particular medical or learning disability diagnosis, she requires accommodations and planning for reactions. We are very specific with clothing purchases and finding ways to help her cope with triggers which might be something as small as the way her pants feel when they rub against her leg because stimulation and sensation can be a driving force for the anger or outburst.

In the grand scheme of things 3 of the 4 children have relatively minor issues to deal with in school. The second oldest had to have a 504 plan. A 504 plan is an educational plan for disabled children who do not qualify for special education but still require accommodations to ensure they receive a Free and Appropriate Public Education (FAPE). Every child is constitutionally entitled to FAPE and what constitutes a FAPE is evaluated on an individualized basis. Therefore while there is standardization in school for the square peg child, a round peg child is supposed to receive individualized education. What most parents will tell you is that the round peg student is often overlooked and swept under the rug.

Children with a medical diagnosis but not a learning diagnosis are entitled to a 504 plan. A 504 plan is based on Section 504 of the Rehabilitation Act of 1974 which along with the Americans with Disabilities Act prohibits discrimination against students with physical, mental, and learning disabilities. The purpose of the 504 plan is to ensure that school is accessible to these children and that they are not excluded from participating in and receiving a FAPE. The purpose of the 504 plan is to keep the disabled child in the classroom as opposed to leaving the regular classroom for the special education classroom.

In our instance, the 504 plan acted to ensure that my daughter always had access to food, water, the restroom, the ability to communicate with me, the ability to administer insulin in the classroom, and that she was given extra time on tests and homework. These were accommodations needed to attend to her fluctuating blood sugar and its effects. So long as she could address her blood sugar she was fully able to function in the classroom environment.

If a medically disabled child also has learning disabilities then they are going to be placed on an IEP instead of a 504 plan. An IEP is needed when a child needs more than an accommodation described above – they truly need the way their education or educational environment is experienced altered to fit their needs. Children on IEP’s need alteration to their educational environment and expectations. The littlest one is likely to need an IEP to deal with her ADHD and tics because the tics come out when she is stressed which flairs her ADHD symptoms. This sometimes requires that she be taken out of the environment that is too stimulating for her and be placed in a calmer environment with less distractions and stressors.

An IEP is an Individualized Education Plan. An IEP is developed by a Team of teachers, counselors, and the parent to ensure that a child receives a specialized education. It is a written plan for the child’s education with defined educational goals. It also identifies all special education services for which a child is eligible. An IEP also identifies what accommodations a child might need to make learning better (ie snacks, technology, low stimulus environment, etc) along with the child’s current level of performance and goals for the child’s progress. An IEP is developed in accordance with the IDEA (Individuals with Disabilities Education Act). Schools must evaluate students and provide these services to the parents at no cost if the child has a disability that qualifies him or her for an IEP.

There are different legal remedies and processes available to parents depending on if their child is on an IEP or 504. I am most often called in to assist parents when a school fails to provide necessary accommodations to a child on an IEP. Because children on a 504 have a medical diagnosis it's usually pretty easy to get a school to comply with a doctor’s orders. Most seem to understand that lack of compliance can immediately cause a child to lose their life, so compliance is generally offered and not demanded.

However, there is a more narrow approach to children on IEP’s. First we have to break stereotypes that many educators have that the behaviors a child exhibits are the result of bad parenting or the child intending to defy instructions or orders. Second, we have to overcome financial obstacles as most schools lack sufficient funds to provide all the things necessary to truly provide the required individualized assessments, education plan, or to implement the plan. Last but not least, sometimes no matter how hard the school or parents work, the child may simply be incapable of learning in a traditional way or environment and a proper alternative environment is not found or utilized. A child who needs an IEP but cannot get the services he or she needs to learn, generally does not feel the impact immediately. Instead, the impact of the denial of services is seen over their lifetime as they fail to progress and become active and productive members of society. Many may not be able to hold jobs because they didn’t learn basic math and language skills. Others may not be able to control outbursts or stress. This impacts their ability to form relationships outside their family. These children who are not educated properly and on an individual level lose their life over time every time the square peg system fails them.

If you have a child who is not square peg, its vitally important that you learn the rights that both you and your children have in regard to services available. The best advocate a child has is their parent. The best parent advocates find the law and work to enforce the school’s obligations to provide the needed services. This is a hard role to play but one that well serves a child who struggles with learning in our narrow educational environment.