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. ❤️

My SPD Superhero

  
I don’t sleep a lot I haven’t for a long time. It started out as a child staying up late with my Mom watching old black and white classic movies and grew into an insomnia diagnosis when I was thirteen. Fast forward to my life as a parent, I gave birth to babies that didn’t sleep through the night until they were almost two! Cue sleep deprived Mombie living on caffeine to survive those long days of daylight. I’ve always been comfortable with my company being me and the moonlight but months turn into years and I yearn for a solid nights rest. 
We are a sensory related family my son’s and I all have Sensory Processing Disorder (SPD). I have written about it before on my blog, this is a recent Post.  This leads to having sleep, eating, and feeling comfortable in our skin issues.  Nearly two years ago my youngest son started snoring. Now for a toddler who hasn’t slept through the night consistently this was alarming. He has an open mouth posture, oral fixation, and hypotonia of his jaw but snoring was new to me. I started on a long journey of finding out the why, what, where and how of this new path. 

I went through the channel of seeing my family Doctor who referred me to an ENT (Ears, nose, and throat Doctor) who told me there wasn’t anything he could surgically do for my son because he had a long tongue and he couldn’t see him using a CPAP with a sensory issue! I didn’t take to this lightly and spoke my peace and moved on to seek out other help past the no I was given. There is nothing to make you feel more helpless and hopeless than watching your child stop breathing in your arms! 

I moved away and after a lot of research, prayers, and sleepless nights I found a sleep specialist and a Center that treats children. I’m happy to share I struck gold with this Doctor! I learned more in a twenty minute consult than I did with any other professional. We’ve been seeing her for a year now and she’s been working  amazing feats with my son and has led us on a path to health with a medication regimen, sleep therapy training for his SPD, and now a poly sonogram sleep study. 

  
My son has superhero powers to live with all the conditions he has and more that we’re discovering since he was given the diagnosis of global developmental delay. Which is leading us to a referral for Autism Spectrum Disorder (ASD) to a neuropsychologist.  This sleep study was not easy to prepare for even with a social story to create an expectation and outcome. I didn’t know what to expect even with research done, because I had never experienced this with my son I was so grateful that our sleep technician at the clinic was amazing and walked us both through it.  

As he was seated to get outfitted with sensor pads, the glue that had to be dried with an air compressor, (which wasn’t tolerable for his auditory hypersensitivity) and the extensive amount of wires he was hooked up to, he was as patient as he could be at the age of four. I held my hands over his little sensitive ears and sang really loud over top of the noise. Those wires became connected to a electronic box that became connected to a computer. It was comical to see me running down the hallway to the bathroom  as he was connected and tethered to the portable box. He was mischievously running fast just to see if he could make me trip. My little boy is quite the practical joker!

  I was glad to share in his giggles because it was masking my fear. The worse part was watching the nose clip go up his nostrils and the plastic piece that would hold his mouth open to measure his oxygen saturation. He didn’t like the clip that was placed on his finger so it was changed to something else. He was taped, wrapped with a belt to hold sensors in place and pads were placed on his legs to measure his limb movements and determine if he had restless legs syndrome. I explained all this was being done to help him sleep better and give him superhero powers!

   I pulled every trick out the book I could think of he was dressed as Batman and I wore his mask as Bat Mom. Our sleep tech gave him an Avengers pillow case to sleep on and I gave him his medicine for the night. I told him I loved him and it hurt like hell when he told me he didn’t love me. I knew it was pain, discomfort, and his fear talking but that didn’t make it hurt any less. We read stories until he got drowsy and then he had a bathroom break and off to sleep he went.

  
I stayed across from him listening to every sound he made while our wonderful sleep technician showed me all his vitals on the screen and what was being monitored. I barely slept that night even though I was in the safest place and situation where I could. The next morning he woke up in a great mood considering it was 6 am it was shocking to me! My son is very sensory overloaded when he awakes but he knew he was safe and Bat Mom would be there at his rescue. 
   One of the staff brought in doughnuts and I let my no sweets for breakfast rule slide. He earned those doughnuts and Timbits for all that he endured in one evening! I let him pick what he would have for breakfast and we went to our favourite restaurant for pancakes. He was in his Batman costume which drew some hard stares. I just smiled, I knew they were all looking at how awesome my son, my SPD superhero was. I love him so much and I’m so proud of him. Now we do our best to make sense of his sleep study results of Obstructed Sleep Apnea (OSA)  and seek out another course of action towards sleep filled nights for us all. 

 

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrumand The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!  


34 Comments »

Writer’s Quotes Wednesday and #BeWOW

Today I feel inspired about things I’ve overcome and feel stronger about what’s to come. I felt that when I woke up this morning and I’m determined to take that vibration into the rest of my day and make great things happen! 😃

  
This is my submission to Silver Threading and #BeWoW linkup at Writer’s Quotes Wednesday. Please check out this amazing mixture of talent, prose, and poetry each week. Thank you for reading mine today. 😘

6 Comments »

Writer’s Quotes Wednesday

My heart and my world have been filled with sadness. I sit here in my grief feeling thankful for my memories I shared with my beloved friend. Today I’m thankful that God gave her to me for albeit a short time. She was my gift and I was blessed to be in her golden chain of friendships. 💖
  
This has been my submission to Silverthreading please have a look at her quote and all the other talent that linkup, thank you. ❤️

9 Comments »

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. 💓


8 Comments »

Writer’s Quotes Wednesday

IMG_3742

This has been my submission to http://silverthreading.com. Please check out her beauty and all the other talent who link up. Thank you. 💖

2 Comments »

Space

I need some space, so I can read, write think, and sleep for more than five hours a night! I fantasize about checking into a five star hotel and doing exactly that! I love my family and my friends but sometimes I just need to get away and let my creative ideas flow. I’ve always liked having my late nights.

When everyone else sleeps I’m at my best in the midnight hour. I weave stories, ideas, and thoughts into conduits from my past to tell my tales. Then the darkness starts to turn to light and I head to my bed only to sleep for moments. Then the glaring light of reality rears its ugly head and I have to get out of bed and start my day. My kids need to wake up, get fed, and go to school that’s my life as a parent. Which I do with all my love and honour as their Mom.

Now I must put my dreams away up high on the shelf. I need space to let the ideas turn into my reality. The thoughts filling my head space need to clear so I can continue working on my book draft. I have so many goals and aspirations for myself. I want to feel personal success whether that’s writing a prize winning novel, Nobel peace prize for neurology research, or keeping up with my laundry.

I want the space to think clearly, save money, and travel to places I’ve only read about in my books. I want to stand at the Eiffel Tower looking out onto to Paris and see how the lights of the city glow. I want to run through the fields of green in Ireland and stand above the Cliffs of Moher in County Clare, Ireland as the oceans waves pound against the coastline.

2015/01/img_3303.jpg

The Eiffel Tower as seen from the Champ de Mars.

2015/01/img_3301.jpg

Looking North towards O’Brien’s Tower.

2015/01/img_3302.jpg

Looking South towards Loophead.

2015/01/img_3303.jpg

Lighthouse at Loophead operated by the Commissioner of Irish Lights.

Ireland photos taken by Bjørn Christian Tørrissen and Eiffel Tower photo by Benh LIEU SONG. These were found on http://www.wikipedia.org and used in compliance to Creative Commons Attribution laws of copyright.

Where does my time, space, and dreams begin and my goals end? Where does my path occur and how does it fit in with the loom of time? If those threads were cut and my fate changed would I choose a different path? No I don’t believe I would, I have always wanted to be a Mom.

I have let Motherhood envelop my life with the greatest love I’ve ever known. With this love my heart grew three times it size. The love I feel for my children inspires me daily. The gratitude I feel for my husband for the love he gives me, and the space to write out my dreams, and catch up on the sleep I miss is abundant. And the one thing about hotels I can always check in to find my centre, gain balance, and relax. Then it’s time to check out feeling refreshed and ready to take on the world.

This has been my submission to Ash’s Sunday Confession at http://www.morethancheeseandbeer.com
Please check out her confession and all the other talent who link up. Thank you for being here today. 💗

6 Comments »