Misophonia: When your child suffers from sensory issues
As a mother, what was it like discovering your son has Misophonia?
Truthfully, it was both joyful and devastating if that makes sense. The joy was that we finally found out we were not alone and that this was an actual condition. Shortly after the joy, came the pain. The pain of knowing this was, in the eyes of the medical community, an obscure condition. Little was known, few recognized it and the prognosis was not good with few treatments available and chances of success with them fairly low. Every parent wants their child to be successful and happy and I think you go through a grieving period when you find out that this is going to be far more difficult than you ever imagined for them.
Has it been hard to adjust?
It’s like both your entire lives revolve around misophonia. It’s constant accommodating and as a parent, who is the main trigger, you are constantly walking on eggshells and he, as a child who loves you so much, is ridden with guilt.
How far do you go to accommodate your son?
There are many accommodations. The one thing I know and am cognizant of is that he doesn’t want to be this way and we’ve learned despite people telling me otherwise, that being tough and exposing someone to triggers does not work and is truly a horrifying experience. We eat separately, we only go to restaurants if he is in a particularly good frame of mind and feels he can cope with it and he still sits at a different table by himself or with a friend. I’ve moved his bedroom from one side of the house to another in order to give him some peace in the summer because people are active outside in their pools and hot tubs. We have lots of headphones. I attempt not to yawn ever in front of him or cough if at all possible. I pin my bangs out of my face when he’s with me because a visual trigger is me moving my hair out of my face. For appointments and trips longer than twenty minutes I have my dad or a friend drive him. I do my transcription late at night after he’s in bed so that he doesn’t hear the keyboard clicking. I do not take calls at night so he doesn’t have to hear my voice. I try not to have guests over because the conversations, laughing and other noises will trigger him. He has tv to sleep at night because it drowns out the noise. I don’t wear heels around him.
What advice would you give other parents who are discovering that their children have issues with sensory processing?
I think firstly, be supportive and not angry. Don’t take it personally. It is easier said than done when you are being yelled at for coughing or sniffling but honestly if the child could turn this disorder off they would and it’s very painful for them as well so be supportive. Try to accommodate but also make sure that you continually keep the conversation open about coping mechanisms. It’s vital that you both try to compromise and work towards a more peaceful way of living. The other advice I would give is to communicate with your friends and families so that they can also have an understanding and will try to accommodate as best they can and so you have some support. Reach out to support groups and share your successes and concerns so that you are not isolated and your child isn’t either. Also, and this may seem like common sense, monitor diet and sleep routine. A good diet and lots of rest are very helpful in managing symptoms. Stress is not our friend! I would also say don’t lose hope as difficult as things may be. There will be successes and as we reach out to each other and are open about the condition, we will gain awareness and the medical community will eventually catch up.
Does your son use any coping methods?
Headphones on occasion however this has been a real struggle. His first thoughts are that others are making the sounds on purpose and that they should simply stop. We are working on that. Right now we try breathing techniques and distraction. So if he’s feeling particularly triggered he may politely leave the space or he is to do a word search or work on his Rubik’s cube to distract his mind from the sounds. Again, he’s young and we really struggle with this because he wants to be around everyone and wants everyone to stop what they are doing and it’s not always possible to do so. It’s a day to day battle and some days are better than others.
Has your son’s education suffered from the disease?
Yes and no. Academically he does well. I’ve educated the school officials as much as possible about misophonia and they are trying to be as accommodating as possible. He gets quiet space for tests and a peace pass to leave the class briefly when he needs to. Socially it is an issue sometimes as being around other kids can be tough. He has a select group of friends who don’t trigger him or at least try not to and are understanding of his disorder. It’s a little more challenging with Declan because he also has Tourette’s with a nasty vocal tic if triggered. It’s taken us time to develop a social network of kids and even adults who understand. I would say certain subjects have suffered. His science has suffered because his science teacher doesn’t believe in accommodating. He feels that people have to get along in the real world so this is helping to make him successful. We often have “ discussions” about his lack of accommodating and feeling it is more controllable than it is. I will be glad when he has a different science teacher.
What would it mean to you, if you could have this cured?
Having a cure for misophonia would mean everything to me. It would mean a happy future for my son. It would mean we could take our life back and be close again. It’s not like we aren’t close now but the disorder has been integrated into every moment of our days and nights and it can’t help but cause fatigue and resentment. I can’t do the fun things with him all the time. We manage but I would so love to take a holiday with him. Drive long distance in the truck and go to restaurants and just do things that other families do. People don’t understand when you can’t sit at the same table to eat. They don’t understand when you can’t take a holiday together. They don’t understand that you can’t sit in a plane beside your son as much as you love him and want to. Having a cure for misophonia would mean no more walking on eggshells trying to protect your loved one. It would mean no more begging neighbors to be quiet. It would mean no more explaining to restaurant staff to not make a big deal but sit your child at his own table. No more weird looks. Most of all, my son and I could be best friends again. It’s not like we aren’t. I think miso has drawn us closer in other ways because although I’m the main trigger, I’m also the one who understands but it’s far from perfect. I would love for us to both live life and not have to live around it.
The full version of this article is included in our August 2015 magazine.