Does Not Make Sense to Me

My adult child who has a disability draws SSI, not the full amount. Even if she did draw the full amount, that is not enough to pay for rent on an apartment or house in the area where we live. Housing. Not enough for housing. What about food, clothes, electricity, transportation, gas, necessities like sanitary napkins, toilet paper, cleaning supplies, soap, shampoo, etc? A state waiver would pay for caregivers if we could find caregivers to hire. She expresses a desire for a part-time job, but there are many complications. First, are her sensory issues, and illness. If a crying child comes within hearing distance, she's done. Finished. She has enough food allergies that most restaurants would not be an option. Autoimmune issues knock hospitals and nursing homes off the list. In the past, she takes a lot longer to recover from an illness than the rest of the family, and she too dysreulated even with a mild cold to be able to work a job those days/weeks. Thus, the list of opportunities grows shorter and shorter. I found a help wanted ad for a greeting card stocker, 20 hours a week, in just two stores, $11 something an hour. Hmmm. She likes to organize, she'd probably be good at this, and I think she'd be able to take a break and go outside if a screaming kid came within earshot. But according to SSI rules, if I understand them correctly, individuals are allowed to earn $65, and then SSI is reduced a dollar for every two dollars earned. She would come out ahead a little bit, in terms of money, but still not enough to live on. I do not understand the concept of reducing the already small SSI in the event the individual gets a $14,000 year job.

Charcuterie Spreads

Y'all. I have a confession. I think I am the only one in the whole world who thinks this. I do not understand the popularity of the charcuterie board, spread, plate. There. I said it. Deli meat full of nitrates and nitrites, mostly pork, a variety of dry crackers, cheese cubes, olives, y'all, it is a sodium fest, too and (gasp)  I don't think that is attractive to serve. Yes, I'm in the  minority. I'm also Picky Penny. I don't like olives, don't care for most dips. I look at those big spreads and think, "That's a lot of work for something that is gonna send people home hungry."  I attended an event where the host did not have any butcher paper and improvised using solid red gift wrapping paper. Innovative. Actually very pretty. However, the grease from the deli pork pieces seeped onto the paper and it wasn't appetizing and I don't think the gift wrapping paper is food safe. Winter charcuterie boards are interesting with out of season fruit on board, again, not attractive or tasty.

Classic Strep

"CLASSIC STREP". We saw a new doctor today. Private pay. Children with PANS/PANDAS grow up into adults with PANS/PANDAS.

This is what we've been dealing with on and off since MARCH, y'all. Ulcers all over the mouth and throat and tongue for over three months with behavioral symptoms of strep.

You cannot imagine my frustration and anger with mainstream medicine right now, multiple providers (five of them at three facilities). "No need to test again; the first test was negative." No need to test nasal passages or draw titers, even when Mom suspects that this is strep because these are THE behaviors that come with strep. 

Let's try an SSRI for it instead, they said. (poppycock, I say) 

Six weeks or so later, "It's happening again," I say, thought the clinic portal. 

"I'm sorry it's happening again," one nurse replied. 

"Would you like a referral to V?" the other nurse replied 

"Yes. Who there treats this underlying autoimmune issue?" 

 "I don't know anyone who does. You can still try the SSRI" (and ignore the underlying medical condition) 

Here we are AGAIN. More ulcers. More strep behaviors, just in time for an appointment with a specialist who knows autism, PANS, PANDAS, Lyme. Doc got to see it all in person and when he saw the her mouth, first words were, "CLASSIC STREP." Finally. Finally. Someone who gets it. 

Why is mainstream medicine SO. FAR. BEHIND? Why is there no one in the 'fabulous' (sarcasm) teaching hospital who knows this? Why has my kid had to be in pain for so long? Why are they suggesting an SSRI without looking into the underlying illness and autoimmune conditions?

 '

Dear Emma Thompson

My daughter who has autism also has had PANS and PANDAS for years. She had it long before we had a name for what it is. If you are not familiar with PANS and PANDAS, in a layman's nutshell, illnesses cause the body to attack itself in the form of inflammation in the basal ganglia, part of the brain. The inflammation causes OCD - for my daughter - repeating intrusive thoughts. My theory is that my daughter must have been flaring when she watched Pixar's "Brave" for the first time. The scene where Elinor throws Merida's bow into the fireplace is intense, and very badly scared my daughter, so much, that during a flare, sees this scene in her mind over and over and over, and feels the emotion of it. We have dealt with it for TEN. LONG. YEARS. We've seen multiple doctors, mainstream and functional/integrative. None of them have been able to stop the flares.

We're battling it again. We've had a rough couple of weeks. My daughter said she wanted to write a letter to Emma Thompson. I said, "Write one. I'll put it on my blog."

Here you go, dear daughter. Here is your letter to #EmmaThompson (and #BrendaChapman)

Dear Emma Thompson: My name is A and let me tell you something. Every since you were in the 2012 Disney/Pixar film, "Brave", as Elinor, I just hate her, because of her actions, her voice when she got angry, and your character threw Merida's bow in the fireplace. Your performance as Elinor scared me for 10 years now. I wish you would write me back and say you are sorry for traumatizing me. Heck, her anger makes me wanna be mean right back at people, like my own mom and dad!

I don't know if an apology from Emma Thompson would actually help, but my daughter thinks it would relieve the intrusive thoughts. 

And now that my daughter is an adult, I suppose the disorder is called Encephalitis, now, and not PANS and PANDAS, although the symptoms are exactly the same. Crossing the age of 18 did not change anything, medically.

 

Questions - When One Disability is More Important Than Another

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.

As I continue to teach my daughter to SELF ADVOCATE, why at the same time are we encouraging her to somehow find a way to deal with the painful situation OR be the one to leave?

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.