Jsack's Mom's Blog

Sharing my heart, tears, and love, one story at a time. ❤️

My SPD Superhero

on November 10, 2015

  
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!  


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34 responses to “My SPD Superhero

    • jsackmom says:

      Thank you so much for kindness. 😃

      Like

      • 2l2phant says:

        Thank you for showing us how to live 💕 too often we take for granted those that are given to us to teach us what love truly is💕

        Liked by 1 person

      • jsackmom says:

        I have tears in my eyes this morning as I’m on my way to another medical appnt. Thank you for showing me that our journey is heartfelt 💗

        Liked by 1 person

      • 2l2phant says:

        You area mighty role model!!!!!

        Liked by 1 person

      • jsackmom says:

        Thank you so much! I’ve felt like a glorified failure because I couldn’t solve my son’s struggle. I just keep pushing through even if it’s my own self limiting beliefs that hold me back. He will helped he deserves to have a peaceful nights rest after two years! ❤️

        Liked by 1 person

      • 2l2phant says:

        Hallelujah !!! May you both sleep soundly and dream with grand adventures waiting at every corner!!!

        And by the way, it’s completely the opposite of what you’ve said 💞 it’s because you were obedient to the call of seeking help for your hubby …. You ARE a TRUE HERO!!!

        All the hero movies have their struggles but they prevailed valiantly !!! Even Jesus asked that the Cup be taken from Him. Yet, He followed through to save the World.

        The enemy wants us to lose hope, to not see ourselves as victorious. But we have a God who loves us Exponentially!!!!!

        Liked by 1 person

      • jsackmom says:

        Oh wow I thank you so much I’m humbled by your fervour! It’s been a long journey and God has held my hand on every step of it! I’m so grateful to have found the professionals that have been willing to help my son. It’s prayers being answered in every moment in time. Even the road blocks and struggles I’ve survived have taught me to just keep trusting in God and his greatness in our lives. 💖

        Liked by 1 person

  1. 2l2phant says:

    What mighty superheroes you are!!!!!

    Liked by 1 person

  2. Praying for you, Supermom, and your little superhero, that you receive answers soon and the solutions are as non-invasive as possible. We hurt when they hurt, something no child understands until they become a parent.

    Liked by 1 person

    • jsackmom says:

      Thank you so much sweet Angie. It’s a process of meeting him at his comfort level and then proceeding with more tests and X-rays My heart does hurt as his Mom and his love of life and everything it has to offer is a testament to his strength. ❤️

      Like

  3. 80smetalman says:

    Well done to your little Batman and his Batmom.

    Liked by 1 person

  4. He earned a bakers dozen of doughnuts! What a strong and sweet boy you have.

    Liked by 1 person

  5. Diane Cherney says:

    A superhero son has superhero parents! He is in great hands! Love you all😊

    Liked by 1 person

  6. Still. Not. Sleeping. over. Here. (My guy is 14.) This morning way before reading this I was thinking about the impact this lack of sleep has had on me for over a decade now. thanks fo0r sharing your story. Your little guy IS a superhero!!!!

    Liked by 1 person

    • jsackmom says:

      Thank you so much. 14 years is a lifetime of sleep deprivation! After my son is set up for treatment I will be getting a sleep study next. As my specialist says it’s all genetic. I wish you and your son some restful night soon! ❤️

      Like

  7. Ashley Stewart says:

    My son has Spd as well, diagnosed last summer, right before his 3rd birthday, though the signals have been there since he was 18 months.
    He also had the sleep study and was diagnosed with OSA. The Dr suggested having his tonsils removed (his were slightly larger than normal). The difference has been amazing. The only time he snores now is if he has nasal congestion, although he is a mouth breather.

    Liked by 1 person

    • jsackmom says:

      Wow Ashley you just described my son’s journey! All the signs were there at the same time. We’re going for surgery as well for the tonsillectomy and adenoidectomy. Peaceful restful nights ahead are within reach! I have a mouth breather too, so we’re ruling out asthma and seizure as well. Thank you for sharing your story. 😊

      Like

  8. Sensory Mom says:

    Very interesting! I’d love to hear more about the sleep training therapy, I have never heard of that before. We don’t get a lot of sleep in our house either! We’ve been using the dream pad since August (it gives the nervous system a message at night, it’s music in a pillow) from ILS (Integrated Listening System) (Music therapy) and that has been the biggest help so far!

    Liked by 1 person

    • jsackmom says:

      The sleep training therapy appeals to my son’s need for sensory input so I do some focused relaxation with him as well as deep pressure massage. We make the “pizza” using his chest, tummy, and back, and go through all the steps of making a pizza. The mixing, kneading, rolling, chopping, baking and cutting a piece of pizza. Both my son’s respond really well to it and crave it if I’m not home to put them to bed. I’ve just recently read about ILS, the dream pad sounds like something I should look into to. Thank you so much for sharing that info with me. 😊

      Like

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