Over the past six-ish years, we have encountered a situation multiple times in multiple settings with multiple professionals. And the more I ponder it, the more baffled I am. We are on the verge of abandoning yet another activity because of a peer who is in the activity.
Why is one disability given priority over another?
My daughter is sound sensitive. She can't help it.
I do wonder, does my child have misophona?
Misophonia is a disorder in which certain sounds trigger emotional or physiological responses that some might perceive as unreasonable given the circumstance. Those who have misophonia might describe it as when a sound “drives you crazy.” Their reactions can range from anger and annoyance to panic and the need to flee. Dec 18, 2022 https://www.webmd.com/mental-health/what-is-misophonia
The ADA does not identify specific disabilities. Rather it defines a disability as a condition that “substantially limits one or more major life activity.” Misophonia definitely meets this criteria. https://misophoniainstitute.org/workplace-accommodations /
She has responded in anger and panic at times. I do not think the term "unreasonable" fits her situation because the sounds she reacts to strongly are annoying and painful.
She carries noise canceling headphones with her, sometimes foam ear plugs (and sometimes wears both at the same time). My daughter also experiences anxiety, sometimes anxiety about past experiences, and I learned a new term, "anticipatory anxiety". Yes, I have witnessed anticipatory anxiety many times.
There seems to be - from my perspective and many experiences - an unwritten rule that ranks disability challenges. The unwritten rule says that the individual with sound sensitivity is a lower priority than the individual who produces loud noises and the student who is loud always gets to stay and the one who is sound sensitive always has to be the one to leave if headphones do not work in a situation. The resolution is often one-sided.
Background: I homeschooled my daughter and she was not around others with a disability who need higher supports. She was introduced to some higher needs peers the first day of her transition program at the age of 18, where a non-verbal peer who vocalizes painfully loudly was allowed to strike my child three times that first day. Throughout the year, she witnessed this child slapping or attempting to strike the adults while screaming, screeching, moaning in the classroom. Now, when she hears certain vocalizations that remind her of the violent peer, BOOM! she is triggered. There is some trauma for my kid in terms of the vocalizations. I don't know how to undo that. Most of the other peers grew up in a public school setting and dealt on a daily basis with peers who vocalize. They learned somehow to ignore it or were taught to be compliant about not complaining about it. And perhaps my kid is the only one with misophonia.
In the last six-ish years, I have enrolled my daughter in different activities - from public school to private pay activities - where a peer or two in the class were so noisy that my daughter could not cope, even with headphones and earplugs. My daughter and I are told that the noisy, screaming, shrieking, squealing, moaning peers can't help it, their vocalizations are part of their disability, there's nothing much that can be done.
There is an unspoken message, and that is "He can't help it BUT YOU CAN."
Guess what?!?
The sound sensitive one cannot help it either.
The unspoken message to the sound sensitive one is, "YOU *can* help it, do better," becomes her inner voice. No matter how gently "He can't help it," is spoken, the unspoken part is there. And the unspoken part is *wrong*. She can't help it either.There is some shame imposed upon her, perhaps unintentional, but it is shame, nontheless, in the "but YOU *can* help it" unspoken message, and the shame makes the events worse. Where is the empathy for my daughter? Empathy is calming, it can diffuse anger and anxiety. Yes, the peer is loud and is interrupting. Someone please agree with her, confirm her discomfort! When the entire group pretends that the vocalizations are not disturbing, it gaslights my kid.
So the default after a bunch of strategies applied to the sound sensitive one, to the one who is not creating a disturbance but instead is being disturbed by the vocalizations of a peer, becomes the sound sensitive one has to leave. A choice, yes, but a forced choice because the staff will not deal with the noisemaker in a way that allows the sound sensitive child to stay and participate.
This sends the unspoken message that something is WRONG with my daughter. Oh, yes, sometimes, the staff members try. I've seen some of them try very hard, one leader worked to try to lessen some of the sounds, even bringing the individual's mother in for some consultation. Ultimately, the siren sound maker didn't stop making those sounds and we left that activity while paying for an activity my child was no longer attending because of a contract.
However, "Try your the headphones" is the main attempt at a remedy. For ONE or occasionally TWO loud peers. Okay. My daughter is willing to try headphones. Headphones go everywhere with us. We use them to get through errands. Errands are fast, we can get out easily, but the headphones are often not enough for an activity with peers that lasts a lot longer than an errand.
When headphones (or headphones AND earplugs at the same time) are not enough during an activity, she is usually given an opportunity to take a break, to leave the activity, a time out - which looks a little like punishment, when she did NOTHING wrong. Neither of the two can help it but the sound sensitive one is singled out for a break. She faces the consequence of leaving the activity when she did nothing to deserve that -- while the individual whose vocalizations are very loud gets to stay. Do the professionals realize what they are behaviorally reinforcing? They send the clear message to my daughter that the adults who are supposed to help her, support her, protect her, while allowing her to participate, cannot be trusted - which sends anxiety soaring. The noise disturbs others, too, but the class members have been groomed over many years to be compliant with pain and torment in the form of excruciating noises, which is a problem.
Because my daughter's disability is not honored and protected, and hasn't been for many years, when my daughter sees the noisy peer, her anxiety soars because she never knows when the peer is going to sound off and she knows from experience that she will be expected to leave the room or somehow deal with the pain and anxiety the siren noises or screaming or moaning causes.
The history of professionals who let her down is long, where maybe the professionals were caught between a rock and a hard place, but ultimately chose a response that is gaslighting to my kid, a response that does not protect my kid, a response that does not help my kid self advocate. I'm not referring to general classroom noise and chatter. I'm referring to moaning, screaming, shrieking, high pitched vocalizations.
The noise is often ridiculous. Painful. Tormenting. Sometimes not so tormenting or painful, but instead annoying and constant, making it difficult to tune out. Sometimes it is intermittent, and random, like a fire drill, you know it's going to happen, but not when, which fuels anxiety in the sound sensitive individual. But the sounds are acceptable and the sound sensitivity is not - the noisy people don't have to leave, we must try headphones on the sound sensitive person.
But wait - my child's situation is even more complicated. My sound sensitive now-adult child also wears glasses and when outdoors, a hat, (and during COVID, had to wear a mask or shield) adding headphones to all that is a LOT, she is contantly having to adjust the glasses and headphones to keep them in the right place - pretty challenging during an activity. Adjusting glasses and headphones takes a lot of her attention bandwidth and the headphones dampen her ability to hear the leader/teacher and her peers in conversation.
Once the pattern of noise is established, for my child, that person becomes an anxiety trigger, even a fight or flight trigger because that person could begin to sound off at any moment.
Children, babies, toddlers in public are also a trigger, because they could scream at any moment. We deal with this all the time. But we can move to another part of a store and still complete our shopping trip when she cannot leave an activity and still complete that activity at the same time.
Allow me to be absurd for a moment: People would have a fit if I suggested putting a mute or muffler or muzzle on the noisy person, but headphones on the sound sensitive one is considered acceptable. I am suggesting a mute to point out the absurdity, not because I think the vocalizer needs a mute. A mute is not acceptable. But why are headphones acceptable in this situation? If a mute isn't acceptable, headphones are not, either. The noisy person isn't asked to step out, to take a break until he or she can stop disturbing others, no the noisy person gets to stay. The sound sensitive person has to leave. I'm frustrated. I'm tired of it.
Additionally, the parent of the individual who makes excessive, painful noise is behaviorally conditioned that her child will be accommodated, no matter what, and I have been conditioned to have an expectation that my child will not be accommodated.
I've withdrawn her from a bunch of activities because of ONE or TWO peers, sometimes without a refund because of the policy of the organization running the activity.
Self advocacy is, “Because of my disability, I cannot tolerate his/her high pitched squealing. I deserve access to an activity without being disturbed by the high pitched and unusually loud screams, squeals, shrieks, moans of my peer."
Self advocacy pits the sound sensitive one and her mother against the group leader/teacher and against the parent of the peer who makes the vocalizations. I hate that. I hate confrontation. I hate being at odds with another person. This setup is ridiculous because neither individual can help the disability. These situations are such that one wins, the other loses. And in the past, I have chosen to cower, to give up, rather than try to advocate bigger.
We avoid loud events. My kiddo does not like baseball games, basketball games, all sporting events are simply too loud. Loud music, loud cheers, sometimes angry voices yelling, and we cannot expect there to be no music and we cannot expect thousands of people to be quiet. However, in a small activity, when there are ONE or TWO individuals producing the noise, why can't we expect the noisemakers to leave instead of our leaving?
How do we grow self advocacy skills in a situation like this example, especially when the professionals and adults choose a side and they choose the side of the individual who cannot control his or her vocalizations over the one who cannot control the fact that those vocalizations are extremely painful and upsetting?
Why is the disability of the loud, painfully noisy student more important than the student who is sound sensitive? Why is this a THING? How do we make the disability of the sound sensitivity EQUAL, not LESS THAN, the disability of the one who makes the noises? Or how do we shift the burden of protection to the one who IS NOT CREATING A DISTURBANCE? How do we begin to expect a student to learn restraint over his or her own voice and sounds?
My daughter is a participant in an activity with multiple meeting times and after trying for weeks to avoid the peers whose vocalizations are painful to her, we were given permission to switch to a different meeting time and that was a welcome and much appreciated solution; however, this is the only activity where there is an option to choose different times for the same activity, and the move caused my daughter to have to sacrifice another activity.
A PS: We work on this often. We've done lots of things! I don't know what else to try. We completely avoid "sensory friendly" events because those events tend to be attended by lots of individuals who vocalize in ways that are painful to my daughter. We avoid events that are noisy (examples: sports/concerts). We paid ($$$$$) for several weeks of AIT (Berard). Away from an activity and when my daughter is calm, we collaborate on strategies, ideas that would allow her to remain in the activity. We try to choose activities that allow her lots of space to steer clear of the vocalizer (outdoor activities can be easier as she can stay far away from the vocalizer), we practice ways to say, "You're hurting my ears," or "You're a little too loud." We have taken breaks during an activity and tried to return. At home, we run a fan for white noise and we have a noise machine. I have talked to the doctor about suggestions that we have tried. I have purchased multiple brands of very expensive specially made ear plugs that are supposed to help with sound sensitivity - so far, all money wasted. They don't help. She takes headphones and ear plugs everywhere for the random screaming baby or toddler in a store where exposure is brief. (Yes, there have been times when we've had to leave a store without completing our errand when a mother would not remove a hysterical child.) For group activities, I try to arrive a little bit early so that as people arrive, the noise gradually increases around her, as opposed to her walking into an already loud room. On the rare opportunities to see a movie in a theater, we wait until the popularity has worn off and attend in an almost empty theater and I ask the other audience members if I can ask the theater to turn down the volume. They have always given me an enthusiastic, YES, and the movie theater staff have always lowered the volume for us.
Remember in old cartoons, a storyline about an old western, where someone with a gun shoots at the feet of another, making the victim dance to avoid bullets in his feet? Well, I feel like the person dancing, trying to avoid the bullets. We dance SO HARD to try to make it work - but I'm out of ideas.
I don't want to leave activities any more for one or two peers. I want the loud peers to be the ones to leave. I want my child's disability to be a priority.
