Jsack's Mom's Blog

Welcome to my blog where I share my special needs parenting journey with my heart, truth, and love, one story at a time. ❤️

Comfort

There are many things that bring me comfort like being awake late at night while my household sleeps. I like the still quiet of the night and all I can hear is the furnace operating, the wine swirling in my glass, and my fingers upon my keyboard. I like quiet, I like stillness, and when I don’t get it I crave it. Being like this, wrapped up in the moment of peace brings me comfort. I’m bothered by a lot of noise, I tend to be very sensory. I don’t like high pitched screaming, sounds of yelling and slamming doors, or the faucet dripping. This is what I live with everyday. With one child avoiding all the sensory input, because at the end of the day his bucket is overflowing. And then the other child is seeking all the sensory input, because his bucket is empty. 

There will be times at night where it’s so quiet and I’m sitting in the dark sipping my tea and ready to read and I’ll hear the ticking of the clock. I’ll try to focus on the words and then they just jumble together because I can’t get the sound of incessant ticking out of my head. I will go so far as to get a step stool and take down the clock and hide it in a towel in my pantry. Yes, I could just leave the room, but my comfortable spot in my couch with my navy blue fuzzy blanket are much too inviting. After I’ve read enough and I feel sleepy I wander down the hallway and check on my kids. I tuck them in, give a kiss, stroke their hair while they sleep peacefully, and then I carry on to my bed. 

There lies my husband and as I crawl into my special spot, fluff up my pillow, take off my glasses, and begin to curl up into the fetal position and ready myself for sleeping; the snoring begins. First it’s soft than his mouth opens and I hear a loud drawn out excruciating loud, raw, raspy, throat sound. I lie there with my eyes wide open, painfully tired, and yet I can’t sleep with the buzz saw vibrating off the matteress. I jokingly referred to my husband as the logger sawing logs, but  at 2 am it’s neither cute nor do I want to joke about it. This doesn’t bring me any comfort, and I lay there and pray he will roll over and I will be able to sleep in peace. I’m not able to wear ear plugs either because of my youngest son’s sleep disorder. I need to hear him at all times, whether he’s breathing or coughing due to his reflux. 

When the scene changes and it’s time for my husband to get up for work, the alarm clock off at 6 am. I may or may not have had four or five hours of sleep by then, and I want to send that clock hurtling out my front door. Sometimes I might be so exhausted I’ll sleep through it and be snoring loudly myself. Then the second alarm goes off at 7 am to wake up my oldest son for school. Ugh, I don’t want to be up but I drag my tired bones out of bed and walk down the hallway and proceed to wake him up. He’s not an early bird so he fights getting up. I proceed to the kitchen and get his breakfast ready. I curl up on the couch and lay there while we chat about what will happen at his school day. I find comfort in these moments where we talk and my youngest is sleeping and can’t divert my attention. 

Soon he’s off to school with a kiss, hug, and have a good day,  and I put on the kettle and pour a bowl of cereal. I eat in silence while sipping my tea but even the sound of my cereal crunching makes me wince. I went to my Dr in January and told him that certain sounds bother me, then I went on to describe everything that I wrote about here. He writes a few things down and asks me when did I first notice it. I replied that I always knew something was off when I was a kid. As it was hard to eat lunch in my classroom because of all the sounds of my classmates chewing and talking like buzzing bees.  I also was a bus student so riding home on a crowded, loud, bus was torture for me. 

I would rush home as fast as I could and my Mom would make me a snack and a cup of tea. I would find peace and solace in my books and I would read till dinner time. As I got older it became more noticeable. As I’d go cruising with my friends up Main Street and the music  would be blaring. My poor ear drums would be vibrating from it. I tried not to let anyone know it bothered me, for fear I’d be as strange and different. But sometimes it would make me sick and I’d have to go home. I love music, but when it’s so loud that my teeth are chattering I get feeling stabby. 

I remember when my only son at the time was three. He was a great eater and we had just left the grocery store with bags of fruits and veggies. He asked to have an apple so I washed one and was going to cut it up for him. He insisted on eating it like me, so I let him. I watched him as he crunched on this huge delicious apple as big as his head! He was enjoying it and I heard his crunching, slurping, sucking, noises and it made me cover my ears in pain. I got angry and I had to walk out to the patio because I couldn’t stand the sound. I felt a rage come over me and I had to breathe through it. I didn’t understand why something simple as my son (whom I love dearly), eating an apple would provoke such a negative response. 

I found this on Facebook and it really describes how I feel.

I relayed all these stories to my doctor and he says it sounds like you have an auditory hypersensitivity which didn’t surprise me, since my children have it. And he could set me up with a hearing test to rule out what the issue could be.  Then he said something life changing, he asked me if I had heard of misophonia. I hadn’t so he gave me the spelling while I put it into my notes, and I promptly went home and googled it. He told me my symptoms sounded a lot like it. And my anxiety can play a huge role in it as well. 

Misophonia according to www. Wikipedia.org Misophonia, literally “hatred of sound”, is a rarely diagnosed neuropsychiatric disorder in which negative emotions (anger, flight, hatred, disgust) are triggered by specific sounds. The sounds can be loud or soft. The term was coined by American neuroscientists Pawel Jastreboff and Margaret Jastreboff and is sometimes referred to as selective sound sensitivity syndrome. The research I found about this condition is that it’s found to affect the cingulate and insular cortex of the brain. These cortexes are also implicated in Tourette’s syndrome. It has also been described as a developmental, neuroligical disorder, or a Pavlovian conditioned reflex. There’s recent discussion of misophonia as a subset of Sensory Processing Disorder. 

Information provided by http://www.misophonia.com


I know I have this as well as my children without a neurologists diagnosis. My Captain (my oldest son’s nickname) can’t handle too many people talking to him at once, eating lunch in his classroom, or his brothers high pitched squealing when he’s stimming. My Mad dog (my youngest son’s nickname) screams and runs around covering his ears when the water’s running in the sink, the garburator’s operating, or when I’m cooking food on the stove in a frying pan. I can’t stand the sound or seeing someone chewing their food noisily, repetitive body movements, and fidgeting. When we sit down at the table for dinner and my kids start eating like the Simpson’s I tell them to stop. They’re not raised to behave like this so  If it continues, I have to get up and leave the room. If I try and stay and tune it out I’ll get angry and start yelling.

My Captain will chew gum at home as it helps him concentrate when doing a task or his homework. I do allow it but I can’t listen to him or see it, I can’t begin to explain how  it creates such hostility in me. So where does that leave us? I know it’s something I’ll add to my notes when I discuss them with the therapists we will be seeing next week. There are a list of symptoms to differentiate between this condition and others. All information provided by http://www.wickipedia.org

Symptoms:

  • Angered by specific sounds eg: chewing, nail cutting, sniffing, sneezing, chewing crushed ice (my son used to do this and it was nails on a chalkboard) 
  • Fight or Flight reaction eg: sweating, muscle tension, and quickened heart beat. 
  • Some can be affected by visual stimuli while watching someone fidget, or perform repetitive body movements. 

Treatment:

  • Adding noise to a background environment with a sound generator or a fan. 
  • Cognitive Behaviour Therapy (for a period of 6-12 weeks. 
  • Tinnitus Retraining Therapy using sound generators, counseling and allowing noise triggers to be introduced gradually. 
  • A case study was done using Neural Repatterning Technique. Where using auditory triggers (short and quiet) were mixed with visual triggers while talking about positive things, listening to music and dancing. 

I find the more stressed I am the worse the condition can get. So I do my best to keep calm and use my deep breathing techniques, as well as exercise and yoga helps a lot. I find ways to bring me comfort, as well as my children being safe and regulated while their brains are creating chaos for them. I have always believed that knowledge is power, and the more you know, the more you grow so I let this information sink in. And in turn I began to shut out the noises, breathe deeply, smell my lavender oil, and little by little begin to feel more comfortable in my skin. 

This has been my Sunday confession with the awesome Ash from http://www.morethancheeseandbeer.com. Please see what brings her comfort as well as all the talented bloggers who link up. Thank you so much for reading my story. 💓


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Life with my sensitive child

Tomorrow I have a meeting and I’m feeling very nervous about it. I’m asking for help for my son. I’ve been his Mom OT (occupational therapist) for a year now. I’ve wrote about his sensory “diet” before with exercise, deep pressure massage, skin brushing, and joint compressions. I’ve recently started using essentials oils and adding in more vitamins, and Epsom salt baths. I also use PECS (picture example cards) for transitions. He knows when we’re leaving for school, choices to make after we’re home play Legos, Color, cartoons etc. He knows what we do for quiet time, read, cuddle, yoga, or IPad time. He knows when his meal, snack, and bath times are. Now this may sound very structured and read that I’m a anal retentive control freak. I assure you this is not the case, he needs to know everything about his daily life as change is his nemesis. For some people change is comfortable, adaptable, and like an elixir in life. Not to my son, with his SPD (Sensory Processing Disorder) it’s one of the most terrifying things to experience. With the traffic jam in his brain while trying to process his five senses, as well as the proprioceptive and vestibular ones, is a lot for him to take in. He gets exhausted as I can see how he struggles with a world that can be too indifferent, too loud, too bright, and too busy for him to live in. I keep him regulated as much as I can, and when I know there’s going to be a change I prepare him with social stories, plenty of positive feedback, and sensory tools like fidgets and things for him to safely chew. When we recently went away for the weekend we talked extensively about our trip beforehand. He knew we would drive there, stay at a hotel, go swimming, and watch hockey. When we arrived at the hotel my husband and our oldest son went for lunch. We decided to go swimming since we ate at the hockey game. I got our luggage upstairs and to the door and walked in. My sweet sensitive boy wouldn’t come, in he told me he was scared and stayed in the hall. I had to sit and hold him, assure him he was safe and I would protect him. As he’s very sensory he’s also highly sensitive to the spirit world and sees what others don’t. So it took me a half an hour to talk him into the room after blessing it and asking whoever was there to please go. If you’re still reading you’re probably thinking get that Mom a Xanax STAT!!! I get my son more than any other person on the planet, being empathic I feel what he sees. And sometimes I’ll see it too if I’m tuned right in. After all was settled we went for a swim and soak in the hot tub. This is just what the doctor ordered as we both felt refreshed and rejuvenated. So back to the room to shower and change and go for dinner. We walked over to McDonalds home of holy grail of chicken nuggets. The only chicken my son will eat by the way. We get our food and sit down to eat and then my son is upset. He wants to have his drink which I say after and I substitute for his water. Yes I get your typical 3 year old reaction of Noooooooo!!!! Then he just escalates from there as this McD’s doesn’t look like ours back home, why can’t he play, followed by crying and whining. As his frustration grows I’m almost packed up our food and ready to go. This time he’s in full sensory overload and the whole restaurant is there to watch the show! I’m dodging slaps, punches, and scratches, and yes I’m frustrated as well. I pick up my son and ask him to use his words and tell me how he feels. He says “I’m so scared Mommy I want to go home!” So back to the hotel we go, I held him in my arms and hugged him so tight. My heart was breaking for my sweet boy as he shared with me all the things he was scared of. Too many transitions in one day, tired, travelling, hungry, boom sensory overload was the result. So after I had him regulated and calm we watched cartoons and used my Sesame Street app called Breathe to help. Which brings me to the meeting I have tomorrow, I’m asking for help with my sons needs. It’s not easy for me to ask for assistance but yet here I am doing it. I’m scared of handing over the reins of his primary care but I’m also exhausted. I’m tired of being the Mom who’s worn out, with bags under my eyes that now are a set of luggage! I’m tired of being the only one advocating and protecting my bear cubs. I’m tired of everyone around me getting more sleep than me, and telling me I look tired!!!! One thing you NEVER $@@@%# say to a sleep deprived Mombie!!! I’m tired of staying up late after my sons naps out of sheer exhaustion. I’m tired of feeling lonely and missing feeling special, for a date night with my husband. I’m bone tired of having to sleep with one eye and one ear open, when the dreaded Obstructive sleep apnea takes over and my son wakes up scared, coughing, because he’s stopped breathing. I feel like the most impatient, misunderstood, pathetic, angry Mom. Who in my worst moments swears and yells at the my precious sons when my patient bucket is empty. Most of all I’m tired of struggling and surviving on vapors of sleep. It’s hard for me to accept some days this is my life, because I wanted to be so much for my children. So I’m asking for help for the Calvary to come in and join me on my team of no sleep or “barely enough to function sleep.” It breaks me to hear my son snoring and knowing that soon he’ll stop breathing. And I will run to him while he’s crying and alone for those moments. I feel like the oldest saddest woman, who’s only nice thing I do for myself was go see my favorite band Fleetwood Mac in concert. And it took nearly 2 years to do that, since the last concert of theirs. So that leaves me lying awake, watching my son sleeping peacefully, and praying it will continue throughout the night. And my heart lies here on my sleeve open, exposed, and bleeding, while my tears silently fall on my sons cheek.

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*Image used with permission from the wonderful http://www.bravegirlsclub.com*

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