A (Typical) Day in the Life of a Parent of a Child with Autism

Manoans and I went through an absolute rollercoaster over the last couple of weeks, and I wanted to talk about it here, as I feel it’s an important and teachable moment for other parents in our position.

Nearly five years ago now, Manoans’ sister took the Witchling out to see a movie. She was two years old at the time. It was her first time since being an infant that she was going to the movies, and she was super excited to be going with her auntie. When they were about to go into the theater, however, the Witchling had a meltdown, planted her feet in front of the door, and started screaming and crying. She refused to go any closer to the doors of the theater. The situation got so bad that her aunt called her husband to come and get the Witchling. As soon as she was away from the theater doors, she was perfectly fine.

Noise-canceling headphones weren’t far behind that incident. We didn’t have any idea of what was going on, just that our Witchling hated loud noises and environments. It wasn’t until two years later, when she was four, that we were told she was on the Autism spectrum. Fast forward another two years, to September of 2021, and she was also diagnosed with ADHD.

What is Autism?

For those that may not know, autism (or Autism Spectrum Disorder), as defined by AutismSpeaks, “refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication.” The article then goes on to say that autism is often accompanied by sensory sensitivities and medical issues such as seizures, sleep disorders, and mental health challenges like anxiety and attention issues. Per the CDC, autism affects approximately 1 in 44 children in the US and is 4 times more common in boys than in girls.

Autism is defined as a spectrum disorder, meaning that it will not affect everyone that has it in the same ways, and affects the way they learn differently, as well, depending on each individual. It could affect someone in severe ways, and cause extreme developmental delays, or you might not even be able to tell someone is on the spectrum at all.

According to the CDC, ASD is now made up of three conditions that used to be diagnosed separately, but are now all considered part of the same spectrum disorder. These conditions are autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome.

And ADHD?

Now, on the other hand, ADHD is something that almost everyone has heard of, I think. The CDC defines ADHD as “the most common neurodevelopmental disorders of childhood.” Some symptoms include having trouble paying attention, trouble with controlling impulse behaviors, and being over-active.

But how do you tell between ADHD and what’s normal for a young child? For one, kids with ADHD never grow out of it. For another, it will cause many issues at school, and even at home and in their social life. They may talk too much, they may fidget or squirm constantly, and they may have trouble taking turns and getting along with others. Children with ADHD may be constantly moving, running, jumping, and/or climbing. They may have trouble with controlling their impulses, and you may find them interrupting or grabbing things from others more often than not.

There are three types of ADHD, according to the CDC. There’s Predominately Inattentive Presentation (when the individual may find it difficult to finish tasks, gets easily distracted, and forgets details of daily routines), Predominately Hyperactive-Impulsive Presentation (when the individual has trouble with impulsivity and feels extremely restless), and Combined Presentation (when both inattentiveness and hyperactive-impulsivity present equally in the individual).

What on Earth is Sensory Processing Disorder?

Now, if you do a decent amount of research into autism and the sensory overload issues that accompany it, you may eventually find yourself confronted with another condition known as Sensory Processing Disorder.

Sensory Processing Disorder (SPD) is slightly different than ADHD or ASD. SPD is defined by FamilyDoctor.org as “…a condition that affects how your brain processes sensory information (stimuli).” Stimuli includes information you receive from sights, sounds, smells, touch, and taste. According to SensoryHealth.org, there are actually eight sensory systems in our brains, and on that list they include “vestibular” (contributes to balance and orientation in space), “proprioception” (sense of muscle and/or joint movements), and “enteroception” (sensations related to the physical condition of the body).

SPD means that you either overreact or underreact to certain stimuli, although overreaction and oversensitivity seem to be more common. In someone who has SPD, they can actually present both underreactions and overreactions to different stimuli, as well. Maybe they don’t react to the cold the way that another person would, but then they react to loud noises as if they’re physically painful. SPD has been linked to other conditions, such as ASD, and is also known to show up by itself, presenting with symptoms that are not explained by other conditions.

At this time, SPD is not considered an official medical diagnosis.

But What Does This Have to do with the Witchling?

As I stated above, the Witchling has needed noise-canceling headphones for going on five years now. And she’s needed them for various reasons, such as whether the environment simply was too loud, or if it was just too chaotic for her brain to be able to process everything. We were worried that she’d have issues with the environment when we put her into school, and worried that those issues might, in turn, lead to behavioral issues and meltdowns throughout the day. We wanted to make sure that she had access to her noise-canceling headphones if needed, to hopefully avoid some of these issues.

There’s a program here in Nevada, at least in Clark County, called “Child Find.” Its purpose is to help parents get their children tested for disorders such as Autism and ADHD at an early age, so parents can get their children the help they may need to succeed while in school and out in public. Per a report conducted by the UNM Center for Development and Disability, the earlier the diagnosis of a developmental disorder, such as autism, the better for the child. Research shows that early diagnosis and appropriate interventions help to improve many symptoms of the disorder, including, but not limited to, cognitive functions, interpersonal skills, and school placements while reducing what is referred to as “problem behaviors.” You can find the mentioned report here.

Part of the “appropriate interventions” to help children succeed, both in and out of school, are IEP and 504 plans. As far as I can tell through research, IEP and 504 plans are offered in every school district throughout the United States.

What is an IEP?

An IEP, or “Individualized Education Program,” is a legal document that is covered by special education law, also known as the Individuals with Disabilities Education Act (or IDEA). IDEA was originally passed in 1975 and has been amended about 20 times since then, with the latest amendment being done in 2008. According to an article on the subject from APA.org, IDEA “ensures that all children with disabilities are entitled to a free appropriate public education to meet their unique needs and prepare them for further education, employment, and independent living.”

The IEP, as I stated above, is a legal document that is created for eligible children who attend public schools, which also includes charter schools. Children who are eligible include, but are not limited to, children diagnosed with autism, children diagnosed with ADHD, children diagnosed with physical disabilities, and children diagnosed with emotional disorders. You can find a longer list of eligibilities here. The IEP is offered to families free of charge and outlines goals and support services that may be needed for the child with the IEP to succeed in the public school setting. It is important to note that private schools, at this time, are not required by law to offer special education programs, although some private schools may choose to do so. If your child will be attending a private school, they may not have access to an IEP.

What is a 504 Plan?

Section 504 is located under the U.S. Rehabilitations Act of 1973. As stated here, the U.S. Rehabilitations Act of 1973 prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment, and in the employment practices of federal contractors.

The 504 plan is designed to help parents of students with physical or mental impairments work with educators to design customized education plans for their children. The 504 applies to both students in public schools, including charter schools, and also includes private schools, only if the private school is publicly funded. The eligibility is worded a little differently for the 504 than it is for the IEP. The eligibility basics for a 504, listed here, are if the student has physical or mental impairments that affect or impair any of their abilities to breathe, walk, eat, or sleep; communicate, see, hear, or speak; read, concentrate, think, or learn; stand, bend, lift, or work. The 504 plan helps create an education plan similar to an IEP, but for children in the regular classroom setting.

But What is the Difference Between an IEP and a 504 Plan?

The main difference is that 504 plans create an education plan for children in the regular classroom setting, whereas IEP students are typically in specialized classes and programs, such as being in a primary autism class, or, for example, occupational or speech therapy through the school. Another difference is that a 504 plan is monitored by the classroom teachers, whereas there is additional school staff assigned to a team for a child with an IEP. The additional staff include teachers, a psychologist, a physical, occupational, and/or speech therapist, a special needs educator, and a vision or hearing specialist. IEPs require a Special Education Instructional Facilitator, or SEIF, to attend and conduct IEP meetings, as well. Whereas parental approval and involvement is required for IEPs, these are not required for a 504 plan. It is highly recommended, though, that parents are involved with their students’ 504 plan and its process. Please note, as well, that if a student has an IEP, they may (and can) also benefit from having a 504, as well, if they’re moving from the special education setting to a regular classroom.

The Struggle

Since the Witchling has been in school, Manoans and I have been advocating for her to have access to her noise-canceling headphones during the school day. We never thought we’d run into opposition. We were requesting something that would help our daughter be successful in school, and that would help her have fewer meltdowns and behavioral issues. We have asked multiple times for the headphones to be added to her IEP. And, instead, what we’ve run into is excuses as to why we should “hold off” on adding them to her IEP. Excuses like wanting to be sure she hears the teacher, and that the classroom isn’t that noisy.

I would say that, technically, we’ve been advocating for this for two years. She started Pre-K when she was four. It was offered through the school because she was eligible for an IEP. She started Pre-K in 2019, and then was sent home in March of 2020 due to the pandemic. We didn’t really attempt to advocate for her noise-canceling headphones during the 2020-2021 school year, mostly because she was at home for most of it, doing school on the computer. She didn’t go back to in-person school until, I believe, the fall or winter of 2021, when the 2021-2022 school year started. She couldn’t have been more excited to go back to in-person schooling.

However, both we and her teacher noticed, almost right away, that she had difficulties processing the chaos of the classroom, even though her primary autism class only had eight students at the time. So we began asking again for the headphones to be added to her IEP. And, again, we were met with opposition to the request. The main “reason” for not wanting to add her headphones to her IEP seemed to be a concern that she wouldn’t be able to hear the teacher. We did make the mistake, however, of letting the teachers and SEIF dictate what was going to go into her IEP.

This all culminated in a review/revision meeting for the Witchling’s IEP that was held on 03/21/2022. I attended by myself, as the idea was only to add more General Education minutes to the IEP. The Witchling has been doing so well, especially after her ADHD diagnosis, in the primary autism class that we decided to try and exit her into the General Education classroom primarily. Before this meeting on 03/21, the Witchling had approached me on multiple occasions to ask that she be allowed to bring her noise-canceling headphones to school. She said that the General Education classroom was too noisy for her to handle. I felt terrible and told her when she asked that I would talk to her teachers about it and see what we could do about it. But just the fact that she, at six years old, was recognizing that she couldn’t handle the noise level in the classroom, that she recognized that she was getting overwhelmed, is amazing for a child her age, with the difficulties that she has.

So I made a promise, both to her and myself, that I would bring it up at her next review/revision. But, when I did, I was once again met with opposition. I felt like I’d just been pounced on by a pack of wild, hungry animals. All at once, from three separate people, I received more “reasons” as to why we should “wait” to add the accommodation of noise-canceling headphones to our daughter’s IEP. A grace period was asked for, so one of them could speak with the Witchling about her headphones, as well. Feeling cornered, I once again caved.

And then we’d had enough.

I explained what happened in the meeting to both Manoans and his sister, and they were just as livid as I was. Manoans’ sister offered her advice, and to help me compose an email that would broker no room for argument about getting the accommodation added. The first thing she told me to do was to send an email, to all of the IEP team members involved, and ask why they were denying the accommodation. She said that it had to be worded just that way, that it was super important. And within ten minutes, I received multiple emails detailing why the accommodation wasn’t being denied, just that they had requested a grace period to see if the Witchling could be successful without it. I realized I’d cornered them without even trying, or really understanding what was going on. Manoans’ sister and I spent most of that night composing the perfect email, with just the right wording, about how the accommodation needed to be added to the Witchling’s IEP as soon as possible, and how the accommodation would work. On 03/30/2022, the two-year battle of trying to get the headphones added was over. The wording was literally copied and pasted from the email I sent out to the IEP, and that was that. Or, it should have been.

Not Out of the Woods

Manoans and I thought we could finally breathe easier, knowing that the Witchling would have unrestricted access to her headphones, and at her discretion to decide when she needed them. We remind her every day before school, and have let the before/after school program called Safekey know that she can use them freely, when she decides she needs them. Or so we thought.

Apparently, in Safekey, she’s been refusing to use her headphones, even though she’s been given the go-ahead from us. She’s been refusing to wear them at school, too. We were even advising her to wear her headphones around her neck all day, so she had easy access to them and so she didn’t need to disturb classes to pull them out of her backpack. But she hasn’t even been doing that.

When we asked her why, the Witchling said that she was told by one of her teachers that it’s against school rules to wear her headphones around her neck. And this isn’t the first time she’s been told this. Before we were finally able to get the headphones added to her IEP, she came home saying that the same teacher had told her that she couldn’t have her headphones at school, because she needed to be able to hear her teachers. If they are refusing to adhere to her accommodations in her IEP, that is against the federal law, and the school and the teachers can be sued for it.

Needless to say, another email was sent. The email we received back has turned the situation into a “he said, she said” scenario between our daughter and her teacher, which I am far from pleased about. But we have been assured that her IEP is being followed, but that our daughter is refusing her headphones.

Tips and Tricks: Navigating an IEP and its Meetings

I honestly have no idea where we’d be without my sister-in-law. She’s been such a help, and an amazing resource for information regarding IEPs, the meetings, and how the system works. I was inspired, not only to share what Manoans and I have been going through but also the tips and tricks we’re picking up along the way from his sister. My goal is that someone, somewhere, will find this information useful and will be able to avoid the pitfalls Manoans and I have fallen into.

1. Get EVERYTHING in Writing

The first, and probably the most important tip I have, is to get everything in writing. An IEP is a legal document and binds the school to adhere to what is in it by law. You want a record of everything. Manoans and I didn’t take that to heart when we were first advised to do this. As a result, the first two years of us asking for the Witchling’s headphones to be added to her IEP are pretty much null and void, because there’s no written record of the requests. If you’re making a request or adding or taking something out of an IEP, request it in writing. Get the responses to the request in writing. And keep everything.

2. Know Your Rights as a Parent

You can find a list of some of the most crucial parental safeguards regarding IDEA and IEPs here.

3. Be Polite, but Firm

Remember that you are in charge, especially for younger children. If your child needs an accommodation, don’t let someone talk you out of that request. Phrase the requests and responses in such a way that the team feels like they’re included in the decision, but so they also know that you’re not budging.

4. Review EVERYTHING

Make sure you review absolutely everything, and that it’s worded either exactly as you want it to be, or so that it’s at least worded to the benefit of your child, and not to the benefit of the educators or the school. When trying to request an earlier meeting to get the Witchling’s headphones added to her IEP, one of the members offered to “grant her access” to her headphones but to wait on putting it into the IEP until a later date. This benefits more the school and the educators than it would have benefitted our daughter. It would have left the decision of whether or not she was overwhelmed up to the educators, and provided them with full opportunity to deny her request to use the headphones, especially since they were suggesting not putting it into the IEP. What it basically meant is that at the teacher’s discretion, she would be given access to her headphones if they decided it was necessary. Not at her discretion.

5. Ask for Reasons as to Why a Request is Being Denied

What I found out from Manoans’ sister is that, when a request is actually denied to be put into the IEP by the team, they have to provide a reason for it in writing. You can then take that denial and the reason behind it to the school board for an appeal of the decision. Hence, the panic when I asked to be informed why our request for the headphones was being denied. Remember to word it specifically as to why the request is being denied.