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Coping

How Parents Can Help Their Children With Misophonia

Since misophonia is a lesser-known condition, any parents might feel hopeless upon discovering that their child has misophonia. Unfortunately, there is no official “treatment” or “cure” for misophonia, but this does not mean that parents are in the dark when it comes to their children’s misophonia. While children with sensory needs might have special considerations, they are fully capable of having a happy, healthy, and fun childhood! The following are tips for parents whose children have misophonia.

Learn All You Can About Misophonia
Resources such as misophoniakids.com can help you learn about your child’s misophonia, and what it means to be the parent of a child with a sensory disorder. Since misophonia is a lesser-known condition, it is important to find accurate information. Reading the literature review on misophonia can provide an overview of current research (https://www.frontiersin.org/articles/10.3389/fnins.2018.00036/full). The first step to helping your child with misophonia is to understand that it is not their fault, and that it is not “all in their head”!
Talk to Your Child’s Doctor, even if They Don’t Know What Misophonia Is
While your child’s doctor might not have heard of misophonia – this does not mean that you shouldn’t speak with him or her about your child’s misophonia. Advocacy starts with parents stepping up and taking their child’s needs into consideration. A helpful approach to discussing misophonia with a clinician is to bring a print out (link to doctor’s guide here: https://www.misophoniainternational.com/product/misophonia-guide-doctors/ ) that explains misophonia in a helpful way. Do not be discouraged if your child’s physician has not heard of misophonia – awareness is growing, and by discussing misophonia with your child’s doctor, you are spreading the word!
Discuss Possible Accommodations with Your Child’s School
For your misophonic child, some accommodations could be helpful. Work with your child’s clinician to draft a letter that outlines possible accommodations that could help your child’s learning experience. Samples of these accommodations are: headphones with white noise, the ability to leave class and calm down, stress-balls and other “toys” that help stress management, as well as the ability to test alone.
Make Your Child’s Bedroom a Sensory-Safe Space
Your child will calm down much faster if they have a place that they can go to recover. Sensory information is cumulative, so it is very important to have time to “cool down”. Since your child is not habituating (getting used to) sounds, having a place where they can adjust and go back to a calm feeling is quite important. Sensory tools like weighted blankets (article here: https://www.misophoniainternational.com/weighted-blankets-misophonia), as well as paint colors your child enjoys, stuffed animals, and as much sound-proofing as you’re able to manage, and a white-noise machine, can help your child feel calm in their bedroom, and can lead to less meltdowns.
Try Not to Force Trigger Situations
While some families feel the urge to enjoy “family meals” together, you should consider your child to eat alone if they are triggered by chewing. There are many other family activities such as walks, board games, and television time that can be spent together without forcing the child to endure triggers.
Consider a Multidisciplinary Clinical Approach
A team of audiologists, psychologists, occupational therapists, and other providers might be able to work together to help your child cope with misophonia. You can find providers at misophoniaproviders.com. Different providers provide different levels of support, and by working together, they can come up with a management plan for your child’s sensory disorder.

While misophonia can be hard to deal with, it’s very important that parents remember that while their child is struggling, this does not mean that they cannot enjoy activities. By working around misophonia, children can learn to cope and adapt to the world around them.

Parents looking for more information and help for misophonia can visit www.misophoniakids.com.

Upcoming Webinar: “Parenting Your Misophonia Child or Teenager”

Date and Time: May 21st, 2019 at 7:30PM EST (available for 1 week after for those who can’t make time)

Location: Online Via Zoom (download on registration page)

Cost: $75 per Family

Sign Up: Register Here

April 19, 2019 0 comment

Coping

You Can Go Anywhere with Misophonia

written by Shaylynn H.

Recently I did something with misophonia (and misokinesia) that I had convinced myself for five years wasn’t possible. I took not one, not two, but four flights. Two of which were connections, but still. Due to my sensory processing difficulties I had been convinced that I was locked into a geographic area that’s only reachable by car, and certainly not by bus, which I still won’t use. I learned a valuable lesson from this trip: the things we’re afraid of are often worse in our heads. My fear of traveling wasn’t based on what did happen – it was thoroughly based on what could happen.

As a teenager who was depressed and had heavy anxiety, I always wanted to go to the US. I dreamt of New York – of flying away and seeing the world.

Misophonia made me think that traveling wasn’t possible…

As I flew from Canada to the United States, I made it through customs. I made it through waiting areas by avoiding them. I sat in corners. I ate sushi. I made friends with a girl who worked at the bank at the airport. The trip wasn’t just trigger-light – it was fun. I remembered the girl who loves people. The girl who loves planes and new experiences. That girl was having a blast – despite the anxiety before the trip.

On the plane I survived by wearing an eye-mask, having a neck pillow, and wearing earplugs with noise-cancelling headphones. The trip went by without a scratch. Once I got to the airport, I kept my headphones on and avoided areas with people sitting down (leg shaking is a huge trigger). Since airports are large, this was fairly easy.

The most liberating part of my journey was realizing that I could do it. Despite my misophonia which can be pretty bad, and despite all of the pain and suffering this disorder caused, I was able to fly to wherever I wanted. I can go wherever I want in the world – and I’ll be okay. I am not trapped by this disorder.

It’s important to remember that even though misophonia might feel impossible to live with, we do have choices. We can decide what matters to us and find ways to enjoy the world around us. Yes, we might have to use coping skills and we might have to avoid some situations, but that doesn’t mean that we are unable to go where we want.

It doesn’t mean that we can’t find ways to be happy. To see the world. To look out the outside of the plane window and almost cry for joy as you see New York from the plane for the first time.

March 24, 2019 1 comment

Coping Treatment

Misokinesia

written by Admin

While there is no official scientific consensus on the relationship between misophonia and misokinesia, some researchers and persons have taken to using the term misokinesia (hatred of movement) for visual triggers. It is important to note that this is just a name, and the underlaying mechanisms behind the two phenomenon could be related, or they could be part of a separate reaction. There is even less scientific information on misokenisa than there is misophonia. A sensory diet (which are set activities designed by occupational therapists) can be helpful to prevent meltdowns and shutdowns related to misokenisa and misophonia.

Both misophonia and misokenisa are similar to the subset of Sensory Processing Disorder called Sensory Over Responsivity. Persons who struggle from visual triggers have reported feeling a similar feeling of anger, pain and disgust as that of misophonia.

Visual triggers have a negative impact on the life of misophonia sufferers. Some of the following triggers have been reported by sufferers, some of which are related to the sounds they are associated with (gum chewing) while others are related to movements or sights.

The following visual triggers have been reported, but this does not mean that others are not possible.

Gum Chewing
Swaying
Leg tapping/swaying
Bags swaying
Clocks
Mouths Moving
Pin Wheels
Moving Signs
Flashing/Blinking Lights
Wind Mills

If you suffer from visual triggers, it is important to know that you’re not alone. Like misophonia, there is no treatment for misokenisa, however scientists are looking into this phenomenon.

March 8, 2019 8 comments

Coping

Misophonia House Hunters (Entry 2, Vicki): The Joys of Relocation

written by Vicki Sladowski

House hunting can be a fun and exciting time. For someone who suffers from Misophonia, it can be downright terrifying! Looking for a perfect home is not as easy as it sounds. First, you prepare your wish list, and prioritize your “must haves.” Luckily, with the internet and realtor websites, you can shop online and weed out many homes. The dreaded day will come when you need to go “shopping” and look at these homes in person! When you suffer from Misophonia, you must prepare for the worst and hope for the best.

My husband was relocated to a town over 6 hours from our home, and we were given one month to move out of state. In our case, we did not have the luxury of time on our side.

Ideally, we wanted to build our home, to make sure we had all of the things on our wish list. One major item was specifically designed for me, something we would most likely not find in a pre-existing home, a soundproofed room! My own personal space on the opposite side of the house, possibly a room over the garage that I could go to and just “be” without hearing the tv blaring or my daughter giggling incessantly on her phone. Building a home takes a minimum of 6 months based on the provision that the weather cooperates. Clearly, building a home was not in our immediate future. Sure, we could have opted to live somewhere temporarily while the home was being built, but frankly, I did not want to have to move twice.

After countless hours on realtor websites, we were able to narrow our list down to properties that we were really interested in viewing. Next, we had to schedule showings. Breathe… I was not looking forward to this part. I made sure that our realtor was aware that I had Misophonia. I know! You are probably thinking, why would she do that? She is not going to understand Misophonia! Granted, I put it in the simplest of terms, that I have an extreme aversion to sound that will evoke an immediate fight or flight, and the results would not be good for anyone if I were triggered. With that in mind, our family took our own car and followed the realtor from property to property instead of the traditional ride-along.

It’s actually kind of funny to think about things a normal person would look for in a home. Most people look at the foundation, the mechanicals, neighbors, etc. As a Misophonia sufferer, I am looking at a home for possible triggers, which definitely helped narrow our list down even further.

House #1- This was a nice house but the homes were pretty close to each other. It was literally about a block away from the high school, a plus on one hand, since my daughter is a freshman, but on the other hand, there would be school bells, football games, etc. Reject!

House #2- This was a house I absolutely fell in love with online. As we pulled up to the home, neighbors are not super close, bonus! It is the last house on the block in what would most likely end up being a cul de sac and it backed up to farmland. New house construction sounds? Kill me now! However, the new builds would probably be years down the road as the end of the block was still working farmland, as in harvesting equipment. I am pretty positive that farm equipment would be loud and trigger me. Reject!

House #3- The first thing I see on his block is there are several homes on the block with basketball nets in the driveway! No need to even look at the house, thank you, the last thing I need to hear is bouncing basketballs from multiple houses all summer long.

House #4- Too close to the airport, keep going.

House #5- Another property that I really loved online. There was an issue with the lockbox, and it kept beeping as my realtor tried to retrieve the key. Not good, panic was setting in as tears start welling up in my eyes then suddenly PINCH! What the heck? A wasp just stung me on the back of the neck. Sorry, but I think I am taking that as a sign. Yes, it was without a doubt a sign, we did go inside and the floors were squeaky! Three strikes! Moving on.

House #5- My realtor points out there is a busy street nearby, “you may have a lot of traffic sounds.” Guess we will rule that one out too! At least she was mindful and taking the fact that noise factors were a serious deal-breaker for us.

Our realtor offered to buy us lunch. Gasp! Thank you for the offer, but we really need to be heading home. (I cannot eat in restaurants, but I did not want to go through that whole explanation, sometimes less is more).

I was very fortunate on my house hunting day, none of the homeowners were home and about half the houses we looked at were new construction. We did manage to find a home that satisfied almost everything on my want list, my husband not so much, but he is hardly ever home, anyway! Although it does not have a sound-proof room, it does have a full basement which offers the potential to make the whole level sound-proofed when we finish it.

When you are house-hunting, you are shopping for a permanent home, so it is very important to find not only a place that you love but a place where you can feel safe. This is a long term commitment, so it is pretty critical to make sure this is the right house or apartment for you. Granted, we cannot avoid all triggers but in this case, you are in total control, you know your triggers. Some things to keep in mind when house or apartment shopping are to be aware of any possible triggers and make sure that your realtor is aware of your condition. In our case, we were completely unfamiliar with the area and because our agent knew about my condition, she was able to point out potential triggers. Remember, a house or apartment is not just an address, it is your safe HOME and your home should be a place that you feel safe.

February 17, 2019 0 comment

Advocacy Coping

I think I have Misophonia, what do I do now?

written by Vicki Sladowski

This article is not meant to be medical advice. It was written by another misophonia sufferer and is a candid account of her own experiences. If you are looking for a professional, please go to www.misophoniaproviders.com.

We have all been there, suffering for months, years or a lifetime with this abnormal aversion to sound. One day we decide to call on our friend “Google” and learn there is a name for this affliction. We read an article or two and BINGO! WOW! That is me! A sigh of relief follows with the “now what do I do?”

Our first instinct is to call a doctor because certainly there is a magic pill I can take that will let me eat in the same room with my family without wanting to strangle someone. Chances are that at some point in your life you have mentioned your aversion to sound to one of your medical providers and your concerns were most likely ignored or dismissed. Why? Why didn’t my doctor diagnose me with Misophonia? Frankly, your doctor(s) have never heard about Misophonia

Who can I call? Where can I go for help? Misophonia is primarily self-diagnosed. Why? There are so few providers familiar with this condition. First, ask yourself why? What is the purpose? The reason I ask you that question is simple.

It is very challenging to find a provider familiar with Misophonia. If you are looking for a medical provider to confirm your self-diagnosis for validation, I would not waste your time and resources. There is not an ICD-10 code for Misophonia (The International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) is a system used by physicians and other healthcare providers to classify and code all diagnoses, symptoms and procedures recorded in conjunction with hospital care in the United States.) This does not mean that your condition is not real, it just means doctors are unfamiliar with it.

If you require accommodations for work or school, you will need medical documentation. In this case, I do suggest that you have your diagnosis confirmed. What type of provider can diagnose Misophonia? Here are some options:

NEUROLOGICAL TESTING CENTER- A neurological testing center can diagnose sensory processing conditions and have resources to refer you for follow up care. Please be wary of providers that say that can cure you. I think it is safe to say that ALL Misophonia sufferers are desperate for relief. Some providers will prey upon this to fatten their wallets.

At this time, there is no medication or proven treatment but there are coping mechanisms you can use. Let’s look at some of the resources you can use.0

AUDIOLOGIST- It is unlikely that you will find a private practice Audiologist familiar with Misophonia. Finding providers will require a significant amount of research. Contacting Audiology departments at larger hospitals will increase your chances of finding someone. Your first question should be, “Does the audiologist treat Misophonia patients?” If the answer is no, move on. One wrong move a sufferer will make is taking articles and information on the condition to the provider. This is not going to make your doctor an expert on Misophonia, so why bother? Naturally, it is a good idea to share the information with your existing providers, but you cannot force a doctor to be able to help you after reading a few articles.

What can an audiologist do for me?

An audiologist familiar with Misophonia can diagnose your condition. More than likely it will be coded as something like Abnormal Auditory sensory processing for insurance purposes. They can also prescribe in-ear sound generators, which have been a helpful coping mechanism for some sufferers. Please verify with your insurance plan to see if hearing aids are a covered benefit (they are not covered by all plans.) If they are not covered, the cost starts at approximately $2500. Some providers may offer a free trial for a few weeks. No need to panic, the amplification feature is turned off. The hearing aids will stream very soft sounds, or you can have them programmed to play your colored noises. The pair I was prescribed was programmed with fractal tones and the audiologist followed a TRT protocol (tinnitus retraining therapy).

An audiologist can also make a pair of custom molded earplugs. They are expensive (around $150) compared to over the counter foam or silicone, but I have to say that they are truly a lifesaver. By lifesaver, I mean they have prevented me from murdering my snoring husband in his sleep. 😊 I can sleep very comfortably and do not wake up with sore or tender ears. Soap and water keep them clean and I only keep them by my bedside, so I do not lose them. Additionally, if you do opt to use the in-ear sound generators, they can make the custom molded earplugs to use in conjunction with them.

PSYCHOLOGIST/THERAPIST- These types of providers can help you find some coping mechanisms that work for you. I would recommend finding a provider who works with patients who suffer from sensory issues or autism, I am not saying Misophonia is on the spectrum. I just feel that it is crucial to find someone who can be extra sensitive to your sensory triggers and needs. Remember, we all have different triggers as well as different coping mechanisms, so what works for me, may not work for you and that is okay. For the most part, I have not found any of the coping techniques particularly helpful in the trigger moment, but they have helped me be proactively for various trigger situations. Let’s face it, sometimes we all must go to a place that we know we will be triggered. It is much easier to walk into that situation as prepared as you can be to handle those triggers.

PSYCHIATRIST- Once again, I must warn you. Some psychiatrists can diagnose sensory processing disorders (which Misophonia falls under). Another instance where pre-screening is very important. If you fail to confirm the provider can diagnose sensory processing conditions, you run the risk of having this condition being diagnosed as a mental illness. As such, doctors are so quick to pull out their prescription pad. Mental illness medications and side effects are terrifying. Did you know that one of the side effects of many anti-depressants is suicidal thoughts? If you do not have a mental illness, some medications can cause mental illness symptoms.

I think one reason it is diagnosed as mental illness related is due to the reactions of the triggers. As you know, when you visit a mental health provider, you are typically given a questionnaire asking about your thoughts and feelings. Chances are that your anxiety is higher because you do not know what triggers you may encounter. Often, I have asked, “should I complete this document based on how I regularly feel? Or how I feel when I am triggered?” The reply has been, “do it based on how you feel NOW.” Well, that certainly is not an accurate assessment. Of course, I am triggered, so naturally based on the “in the moment” answers I can understand why the provider would label it as “anxiety” or “depression.” The last new provider that I went to, I tried a NEW approach. I completed this document when I was at home in my everyday mode. I completed a second form while I was recovering from a meltdown. The answers were like night and day. The psychologist was floored that there was such a vast difference in my mental state when I was in trigger mode.

One thing to remember is that there is a difference between general anxiety and sensory induced anxiety. For some reasons, medications have little, if any effect on sensory anxiety.

I am sure there may be other providers out there, my knowledge is still a work in progress, but I wanted to share a few resources available.

Download FREE the printable guide to take to your doctor here.

February 16, 2019 1 comment

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