Our webinars focus on misophonia, research, parenting misophonia kids, and dispelling myths on misophonia. Hosted by Dr. Jennifer Jo Brout (head of the IMRN, founder of the Duke Misophonia and Emotion Program), these webinars are crash courses on misophonia for parents, providers, family-members, clinicians and sufferers alike.
Parenting is tough without any special challenges. Parenting a child with misophonia comes with extra challenges, but this does not mean that you are without hope, and you are certainly not alone in this struggle! The following resources can be helpful for parents of children and teenagers with misophonia. With the right amount of tools and support, your child can learn to cope and manage misophonia in day to day situations.
www.Misophoniakids.com is a website focused on children with misophonia. It will be updated frequently, including when new research is available.
Free Misophonia Parents’ Guide
This free guide is available for parents’ as a basic introduction to misophonia. It can be downloaded here: //www.misophoniainternational.com/product/misophonia-guide-parents/
Sensory Diet by Susan Nesbit, O.T.
This free sensory diet is a template for activities that can help your child avoid “meltdowns” and “shutdowns” that come with misophonia. It can be downloaded here: //www.misophoniainternational.com/product/sensory-diet-susan-nesbit/
Misophonia Guide for Doctors
This guide is useful to print and bring to your child’s medical provider to explain misophonia. It can be downloaded here: //www.misophoniainternational.com/product/misophonia-guide-doctors/
Misophonia Provider Network
The site www.misophoniaproviders.com helps parents and patients find providers in their area. It is updated regularly.
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 (//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: //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: //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.
For the past week and a half, one of my relatives has been talking to me about my career. She took me to lunch and asked me what my plan for the future was in terms of my degree.
Before this happened, I had been questioning my degree and wondering if I made a mistake. I realized I wasn’t happy with the volunteer work I was doing that I thought might help with getting a job with my degree, and job searching was frustrating to the point where I gave myself panic attacks. This also made me more high-strung, stressed, and my misophonia was triggered more than usual.
When my relative asked me initially about my future through Facebook messenger, I decided to, with the help of my friends, research some things related to my degree so I could have something to talk about. I’ll tell you what I told them: this relative has been, and still is, emotionally abusive to this day. She will jump to conclusions, refuse to believe she’s wrong and make me feel terrible, thinks she knows what’s best for me all the time and talks to me as though I’m still a child, and generally wants to stay in control of every aspect of my life. My friend put it simply: “She sounds like my dad. Childish”. At one point, she knew what was best for me. Now, I think she’s having a hard time letting me go.
Back to the present. My stress is already up to at least 40% in anticipation for what she’s going to say to me, and my anxiety level is steadily rising. Of course, this doesn’t make my misophonia any better either, so I have my headphones on. My relative and I are sitting there waiting for our food and she opens with a question asking me what I’ve been doing in terms of my degree.
I pull up a few screenshots on my phone of some of the things I researched and read them to her, feigning interest. After I’m done, she immediately shuts down one of the three for various reasons. I take a deep breath and just nod in agreement. We talk about the other two, and we boil it down to one. Well, she boiled it down to one.
After we ate our food, she asked me what steps I would take to move forward in getting that job. I said what she wanted to hear, and then we went over interview techniques and how to answer questions. This was probably the only helpful thing I got from her.
After she took me home, I was mentally exhausted. Despite having zero interest in what we talked about, I knew I still had to move forward with the steps. I had to, or she’d give me hell.
I struggled with anxiety and depression for the next week and half. After all, she didn’t care about the fact that I had my own freelance work with San Diego newspaper and my own small business. We had talked about my freelance briefly and she said that I wouldn’t be successful unless I was super well known. In my head I thought, “Well, how do I work to be more well known?” And she left it at that and moved on. We also never talked about my partner, which might have been for the best honestly, but she never brought him up. Or marriage, which is something he and I want to do. I didn’t get help in the areas I wanted/needed help in, and it hurt, and I felt like a worthless piece of trash. I was also triggered more than usual throughout that week and a half, and more irritable/emotional. When for “me time” I normally watched my favorite let’s players on YouTube, I found myself not being able to because I was triggered by them more. I felt so alone and neglected.
I’m still struggling, but I’m not feeling as bad anymore. Just the other day, my partner commented while we were sitting on the couch that I had a certain comfort about me. I gave him a funny look and asked “Really?” He said “Yeah, you’re normally looking around and alert. Now you just look comfortable.”
I think that’s proof I’m starting to feel a little better, and that I’m accepting the fact that while my relative doesn’t support me, my partner does. And his family. And my dad. And my friends. I have tons of support in other people, and it’s comforting to know that. But what helped the most were a few quotes:
If you’re going through hell, keep on going. Don’t slow down. If you’re scared, don’t show it; you might get out before the devil even knows you’re there.”
That’s from a country song called “If you’re going through hell” by Rodney Atkins. That helps me push through the worst of my depression and anxiety.
And my favorite:
Make your own sunshine.”
Sometimes I change it to “Be your own sunshine” with the idea that I can do this. Who I used to rely on as a primary source of hope and encouragement (sunshine) is gone. I have accepted that and am moving forward, and am being my own source of hope and encouragement.
The point of this post is that you know what you need best. I didn’t figure that out until now. I know what I like, and what I want, and what I need; in terms of what I want to do with my life, who I want in my life, and what I need to do to manage my misophonia. And it might be difficult for me to follow through with that because of my relative breathing down my neck, but it’s possible. I will persevere. It’s my hope that, if you’re struggling right now, that what I have to say helps you start really looking at your life and what you feel is best for you.
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.