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. ❤️

The birthday party

I was so excited when my son received an invitation to his new friends birthday party. Having a child with autism, ADHD, and Sensory Processing Disorder (SPD) birthday parties can be a double edge sword. Firstly, there’s the question of is he going to to be invited to any parties and secondly, do I stay for the party to assist him when he needs help?

The day arrived and I had done all the preparations with my son with a social story, drawing out a schedule, and keeping my visuals handy in case plans had changed. He was quite excited and I needed to drive around the block a couple of times till he can process his feelings.

We arrived at the birthday boys house and was met at the door by the parents. I explained I would stay for 30 minutes until my son felt comfortable then I would quietly leave. I knew I’d be the only parent there as by the age of 6 or 7 it’s a drop off and pick up event.

I haven’t been able to do that with my son in a neurotypical setting there’s a lot of variables to consider. Is the birthday fun going to be too overstimulating for him, will he understand that he can’t open the presents, and lastly will he understand when it’s time to leave.

I sat quietly on the couch making small talk with the parents and surveyed the yard where a nerf gun war was taking place. I had to firmly and directly tell my son the rules as he wasn’t interested in leaving the well stocked toy room. He eventually made it outside and joined in the fun that the other guests were having.

I didn’t want to be that type of parent helicoptering around my son son so I made myself as inconspicuous as possible. With the play getting more intense I could see my sons eyes glaze over and I knew it was time to switch to another activity. That didn’t work out so well so I joined in with playing a football game and hoping my son would want to play as well.

The distraction worked and we were happily tossing the ball back and forth when it was time to come in to have snacks and open presents. My son wasn’t interested in eating but I had begged him to have some carrots as it will fill his sensory seeking need once the game was cut short.

All the kids gathered around and off my son disappeared to a bedroom to have some quiet time. I followed behind him to let him know I was there to help him and the kids were watching the gift opening. He had no interest in me being there or seeing the presents. He asked me to leave and said “I’m fine Mom I got this.”

As I prepared to leave I gave the parents my contact info in case I was needed earlier before pickup. My sons words of I’m fine echoed in my ears as I drove away. I prayed he would be as I wasn’t even close to being okay with leaving him behind.

I spent some time with my older son and then it was time to pick up his brother. I had made sure that I gave him 10 minutes to prepare himself to leave as I followed him to get his shoes and goodie bag. I set the timer on my phone and stood at the door as he got ready to go. As I turned to thank the family for having him at the party he bolted!

Luckily it was within the house and I could get to him quickly. I knew he was having a hard time with transitioning from leaving the party so I remained calm. He professed how he didn’t want to go and I told him all the reasons why we had to leave. I was doing my best to allow him time to process and reached for his hand only to be shot in the throat with a nerf gun.

I was taken aback and started coughing as I unprepared for that impact to my vocal chords. Much to my dismay this whole scene of me chasing him to get the gun and get him out the door was witnessed by all the guests in attendance. I’ve come to a point where I’ve been judged for my parenting that I only care about my child not others opinions.

In that moment I wanted to save my son from any future scenes of chaos and I have pulled him along and carried him out the door. I learned from this experience as it was the only thing I could do in order to help my son. Now I make sure we have a game plan in place and keep the party time to no more than 2 hours.

If things go south as my son reacts to transitioning I have my phone as timer, a little white board so I can draw out the plan ahead of time, and another activity to do as soon as we leave. As I reflect back I know now I was caught up with my son fitting in with his classmates and be like all the other typical kids.

Neurodiversity allows for thinking outside the box and my son is all about doing that in his own way with his stellar imagination. I realized that my need for him to be comfortable at the party spoke volumes about my fear of the unknown.

Now I meet my son where he’s at and time has proven to be the best teacher as well as steadfast love. If I focus on the things he can’t do like stay at a birthday party without me, then how will I celebrate the successes he has that he’s achieved in his own.

I’m happy to say there’s been other birthday parties and he’s felt comfortable enough to ask me to stay or ask to leave if it’s too sensory overwhelming for him. He’s grown and changed so much since that first birthday party and I know no matter what obstacle he faces he’ll be fine, and he’s got this.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by the Sensory Spectrum and the Mommy Evolution. Click on the link 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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Acting and other lies I tell myself

When I was a little girl I always wanted to be an actress. I remember late night movie watching with my Mom. We loved the classics of Audrey Hepburn, Lauren Bacall, and Marilyn Monroe. I felt happy and safe in that world of film. When I grew older and had opportunities to participate in school plays and Christmas concerts I jumped at the chance. 

 I memorized songs, dialogue, and full scripts for plays. Theatre had always been my first love and I joined a wonderful group and they quickly became my theatre family. I felt so loved and accepted there with my beloved Hope Pact. I sang with such confidence and determination. Then immersed myself into my character enjoying an Irish accent, and learning my lines, songs, while researching the history of my chosen role. 

Life has always been easier when I’m on my stage. I throw myself into the script and I don’t think of any outside influences. Now I still act but I’m in the background singing with a chorus or taking a secondary role. Where did the confidence go, why don’t I sing with grace and passion like I did before? 

Now I feel like I’m really acting avoiding the hurt I feel when someone has wronged me. I don’t lash out I don’t kick ass or take names like my personality would have me do before. I feel but I’m tending to hide the affects of those emotions more. I’ve always been a person who wore their heart on their sleeve. Which is still true but I act like I’m Teflon and things bounce right off of me. 

They don’t though, it’s just this one act play that has become my life of hiding those true thoughts and feelings. Does anyone care about all the tears I cry flooding my fragile ego until it sinks in an ocean of denial? This is my plight one I choose to accept and be proactive to change. Or continue on with acting and wearing those rose coloured glasses that impede my true vision.  The time to be real is now and stop acting like I’m wearing a titanium suit of armour. I will persevere I always do, find my voice again, sing with courage and conviction, and leave the actress on the stage where she belongs. 

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Sensory Processing Disorder in the classroom

My son has had a long journey in his five years. He was born a month premature and didn’t open up his eyes for his first five days on the earth. Even back then he knew he was sensory overwhelmed with his welcome to the world. Most Moms have babies crying when they make their exit from the spa into the brightness of a hospital OR. Not my son he was sleeping in my OB’s arms as he was brought over the sheet to check his vitals. 

From that day forward he found his voice and expressed himself fully with the power of his lungs. He was a cuddly baby that never like to be put down to sleep and was rolling back and forth at 4 days old! Then he grew into a bash and crash toddler that scared me with his antics of climbing up a five shelf bookshelf and jumping onto the couch. Now he’s grown up so much I wish time could slow down and I could swaddle that sweet baby he used to be. 

He’s 5 now and recently diagnosed with autism and co-morbidities to watch out for, and attending kindergarten and I have routine  that I do for him in the morning to prepare him for the day. He’s not a morning person after two years with obstructive sleep apnea so every morning is a little more jarring to his central nervous system. We start slow and easy in the morning with the routine of wake up, eat breakfast, get dressed, and get his backpack ready for school. All shown with his visual pictures to keep him on task. 

Regulation 

 He needs to be emotionally and physically regulated with his central nervous system before he steps into his classroom so I have a morning cuddle with him and give him a deep pressure massage to wake up his senses slowly. He then gets fed, dressed, washed, and then coat, shoes, backpack are put on. If he’s feeling antsy I have him jump on his minitramp for 1 minute. That amount of time can balance him out and then crab walks to the door with some heavy work to prepare him for sitting. 

Stimulation

Now that’s he’s awake and ready to start his day he can become overly stimulated by what he sees around him. I help him focus by putting on his glasses so he can single out each object. His classroom is a busy place so I know this cuts down on all the visual distractions. Noise and commotion are difficult input for my son to process so he has his noise cancelling headphones in his backpack to block out the overstimulation. If he doesn’t wear them he will stim and compete with the noise with his vocal power to cancel out the offending auditory trigger. 

Oral Fixation

My son tends to chew on his sleeves, cuffs, collar of his clothes so after he’s dressed I make sure he has his chewlery. He’s a shark and ocean marine life lover so he has his shark on a cord and wears it as a necklace. He doesn’t always like to wear it but I tell him that sharky’s there to help if he feels nervous. It saves his clothes and gives him the sensory input he needs for his low muscle tone in his jaw. 

Motor Planning

He has difficulties with  transitions so I make sure that I use visual supports to keep him on task. First we use his visual picture cards so he can see his morning routine. Then I draw them on the white board in a 3 step format of first, then, after. As he completes each task he erases it feeling accomplished and ready to start his day. 

Zones of Regulation

Each day my son and I will go through the zones of regulation where he will tell me what each colour is to express a feeling or action. When he’s unable to express how he’s feeling verbally he will tell me a colour. 

  • Blue is feeling sad or tired. 
  • Yellow is feeling scared or nervous. 
  • Green is happy and smiling.
  • Red is angry and frustrated. 

Verbal Diahrrea 

My son enjoys talking so I need to show him how to take turns with having a conversation as his receptive language skills are severe. He can have tunnel vision and want to be the only one talking and expressing his thoughts. I have a Popsicle stick that he coloured with one side is red and the other is green. He holds the stick and when it’s green he’s a go for talking. When it’s red then he has to stop and let someone else talk, namely his teacher. 

The visuals keep him on track and help with his slower processing time. We all know the adage it takes a village to raise a child. When you have a child with special needs that village grows. Now we prepare for him to be assessed by the school psychologist so he can qualify for an aid in the classroom. It’s not an easy process because sometimes my son doesn’t want to be organized and given direction so it becomes more of a dance. He takes a step and we each take turns leading. One thing I know that everything we do is to prepare him for success in the classroom. 

Welcome to the Sensory Blog Hop — a monthlygathering of posts from sensory bloggers hosted by The Sensory Spectrum and 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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Sensory Processing Disorder and me-friend or foes

I’ve shared a lot about what it’s like being a parent to children with SPD. One is an avoider of sensory input and one is a seeker and can’t get enough input in his bucket. He keeps emptying his bucket over and over throughout the course of the day. Whereas his brother after a long day of school has a bucket that’s overflowing and can’t take one more cup of input. This is when Mom becomes the referee and I need to separate my sons before World War 3 happens! I do my best to keep them emotionally regulated but it becomes a full time job and I wind up exhausted and depleted. Like my oldest son I also have SPD Sensory Defensiveness in particular. Loud, sudden high pitched noises bother me, more than one person talking to me at a time is like chaos for my brain and body. My central nervous system processes sensory input most of the time effectively. Then there are those days when the world is too busy, loud, bright, and overwhelming. Sometimes I feel so hypersensitive to the world around me I can hear the energy crackling like a campfire. 

Those are the days I put up my hood and read a good book with a cup of herb tea or escape to my bed with my soft, fuzzy blanket and put on my headphones and listen to my meditation music. I need comfort in those moments when my ears feel like they’re bleeding from listening to my children squabbling over the iPad while three different TV’s are playing in the background. I have to resist the urge to bite my fingernails with the anxiety I feel inside. All I want is to chew on something soft and rubbery like an eraser but I don’t because my kids have gnawed on all the pencils like a couple of beavers. In those moments when I feel like the world is closing in on me and I can’t breathe I rock myself gently and I sing. Whenever I was a little girl my Mom would hold me on her knee and rock and sing with me. She’d rub my back and give me deep pressure Mama bear hugs. I’d give anything to go back to those memories and pluck her out them so I could have her in my comfort zone. But unfortunately that’s not possible as she travels a heavenly path while I’m earth bound. My Mom never made me feel like I was wrong or different. She told me I was a special child of God and my “quirky” nature made me uniquely me. When I was a child I spent a lot of my time reading the Classics like Shakespeare, Dickens, Louisa L. Maycott, and Lucy Maude Montgomery. 

I related so much to those characters who thought out of the box and wrote stories and climbed trees like I did. The poetry and beautiful descriptive writing of William and Charles made me want to write like them and capture the worlds interest with my words. So I wrote getting lost in fantasy worlds, epic battles, and fascinating history. This is when the world was a quiet place as I scribbled away in my notebooks filling pages with my prose and poetry. I’m still like this as an adult where I require quiet time daily and my sons are forthright about asking for their private bubble to decompress in. The stress chemicals can build up throughout the day and we need to release them or end up sending our central nervous systems into sensory overload. No one wants that to happen so we give each other the space that we require. Now you add in a few more letters of the alphabet like ASD, ADHD, ODD, and OCD you’ve got a melting pot of hot soup that no one can handle. Those are the times where I ask my children what they need to make their bodies feel better. Or how fast is your engine using the zones of regulation, of which my youngest son has a thorough understanding of this concept. 

Since facial expressions can sometimes confuse him and his recessive language with conversational verbal fluency is severe. He will then tell me what colour he is or ask me what colour I am. It’s an excellent way for him to communicate and be receptive to others feelings.  A breakdown of the colours and their meanings:

Blue- feeling tired or sad

Yellow-feeling nervous or scared 

Red-feeling mad and angry

Green-feeling happy and smiling

With my oldest son who has a better grasp on receptivity I have a diagram of a thermometer and I will ask him how fast his engine in his car is, and he can tell me or show me using the zone regulation colours. Sometimes are tempers are short, our explanations are long winded, and our bodies not regulated  and we react to the stress and pressure of the hot soup and we blow up. That’s when it’s important to remember forgiveness and our brains are just wired a little differently. It’s amazing what love, a deep pressure hug,  and a cup of hot chocolate will accomplish when words fail to save the day. That’s when I feel that even when SPD appears to be a foe when dealing with the chaos and it’s just too much ; I take that moment to breathe letting myself inhale the positive and exhale the negative and realize that it’s my friend after all guiding my family and I to better days ahead filled with love and patience.
Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and 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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Living in a sensory overloaded world 

Life isn’t always easy and I make the best of it that I can. I don’t think my life is any worse or any better than anyone else’s, it just is what it is. I have never possessed the Staples magical easy button, but if I did look out world! I do daydream about it occasionally to come up with a working model with creativity and a little wishful thinking on my part. 

I’m a product of my own environment and a lot of time spent in my childhood was loud, confusing, and overwhelming. I came into the world and lived in an incubator for a week while I recovered from being sickly and jaundiced. My Mom had a cold and as a result the Dr took extra precautions with me. This was back in the 70’s when it was perfectly acceptable for Mom’s to stay in the hosiptal longer. Going through my own birth experiences I believe whatever emotion, feeling, thoughts, and drugs for pain management are passed from Mother to baby. 

Without having any personal recollection of my time in the spa I can let my imagination wander and say I must’ve loved it. My jaundice was being taken away under the phototherapy lights, I was warm, comfortable, and it was quiet. As I got older I was a child that thrived in peace and quiet because I saw that my Mom did too. She could fill a room with her twinkling laughter and tell a great joke but she loved the quiet of sitting with a good book and enjoying a nice cup of tea. 

We spent many hours enjoying each other’s company with me wrapped up in a world of make believe with my dolls, Sesame Street, Mr. Dress up and The Friendly Giant as my favourite friends. Whenever it would get noisy with having my siblings home I would retreat to my bed and hide under the covers. I had some certain spots for my quiet time up in a tree, in my blanket fort, and when I was very young I was found one time in the dryer sleeping in the warm and cozy laundry. 

When I needed a sensory break from my environment being too cluttered and confusing I would climb. I was confused for being a monkey on many occasions when someone would ask where I was they would see me climbing the tallest tree or onto the horse stock rack then onto the roof of our house!  I was quite blessed by the hand of God that I didn’t fall off and break my neck or worse! 

Now I’m an adult who still loves to climb and build blanket forts with my kids. I have Sensory Processing Disorder and so do my son’s. It’s not anything I could’ve done to change that outcome since it’s neurological. I’ve read enough in the last two years to help me understand my children’s brains and have seen myself on every page! I was quiet, yet boisterous at times, I preferred to read and write stories, or climb trees, and scrape my knees. Just like any other typical child, yet if my world was to loud, bright, crowded and confusing I’d hide away. 

I read that birth trauma particularly placental complications, is known to be a cause of Sensory Processing Disorder according to the book Out of Sync Child by Carole Stock Kranowitcz. If you’re new to this term and haven’t read my blog I will kindly provide you with a definition. 

Sensory Processing Disorder is Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”

*this definition is provided by the website SPD Foundation.*

There are a lot of different processes with SPD where people are affected in certain ways. I’m very visually stimulated and auditory and tactile hypersensitive. Loud noises bother me, I take everything in while scanning my environment, and there’s certain textures I just won’t touch. I’ve lived with this my whole life and  this is known as Sensory Defensive Disorder. My son’s each have the Sensory avoidance and Sensory seeking behaviours.

 I explain it as follows as we each have a bucket that gets filled with each input throughout our day providing for our eight senses to our central nervous system to our brain.  These senses of touch, taste, smell, hearing, seeing, proprioception, interoception and vestibular. 

Proprioception- meaning ones own individual sense of the relative position of neighboring parts of the body, and strength of effort employed in movement. Yes My youngest son isn’t aware of his body in space, and where that begins and where it ends. So crashing into the wall, toys, or his brother are common, and he’s not aware of it until after the fact.

Interoception -is the sense by which one perceives pain, hunger, bowel/bladder control and the movement of internal organs. So in layman’s terms potty training is a bust as of late; my three year old has awareness but no sense of urge control or the urge to eliminate.

 Vestibular- is the sensory system that provides input about movement and a sense of balance. The brain uses information from the vestibular system in the head, to proprioceptive throughout the body to understand the body’s dynamics and kinematics, which describes the motion of objects or groups of objects, without the consideration of causes of motion. Translation meaning when my youngest son is “stimming,” (stimulating all his senses to seek input in his environment) he will spin for an hour if I let him. I prefer swinging-on actual swings- to regulate my vestibular sense. 

 He’s a “seeker”of all kinds of sensory input. Think of it in terms of having a bucket of water with a hole in the bottom, and it constantly needs to be filled up. The clinical definition is Sensory Modulation Disorder. My oldest son has Sensory Defensive Disorder like me. He has a lot of defensive issues with receiving too much input. 

Picture it as a bucket of water that’s constantly filled, and it’s pouring out all over the floor. His issues are predominantly with auditory, visual, and olfactory senses. It’s a full time job keeping all of us sensory and emotionally regulated, but it’s one I do gladly with the help of noise cancelling headphones, regular occupational, physical,  and speech therapy. 

The one thing I’ve come to realize of this journey in our sensory overloaded world is that it does take a village to raise a child, and if there’s special needs involved it grows in size and heart to provide them with success. I do believe that God only gives me as much as I can handle. Sometimes those days are long and difficult and other days are filled with fun and laughter. I’m blessed that they’re also filled with a lot of love, patience, and kindness, and a strong village. 

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by  Sensory Spectrum and 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! Want to join in on next month’s Sensory Blog Hop? Click here!


  

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Monday Musings-Procrastination

Here we are 11 days before Christmas and anyone ready for it? Slowly raising hand in the back of a crowded shopping mall… Actually you won’t find me anywhere near a shopping mall I avoid them like the plague. I’m a very sensory individual so my personal bubble is close like a vest. I have to resist the urge to throat punch most people around this busy bustling season. 

I’m usually quite a calm person but the harried, hectic energy of the holidays sends me into a tailspin! Just driving into a parking lot to mail my Christmas cards is enough to send me into a panic attack as I drive around and around looking for a parking spot. I prefer to do my shopping really early or late at night at a big box store. Then if all else fails I have the online option sitting on my couch and I don’t even have to wear pants! I do though because it’s winter and damn cold in my fridge box of a house. 

 

This isn’t my meme, I found it on Facebook and it’s brilliant dont you think? 😉

 
My husband discovered I turned up the heat last night to a balmy + 25 degrees. Comparing that to 77 degrees Fahrenheit which some states are experiencing this winter! Our Canadian one came upon us graciously and gradually compared to the blizzard of 2014 that had me wearing my winter coat and freezing my ass off in September brrrrrr! 

This year we were blessed with chinooks (a beautiful phenomenon that has warm air meeting cold air and the result is higher temperatures) In October we had a + 20 degree day ( 68 degrees Farenheit) and I set up the bouncy house for my kids. They loved it as did I, it’s a great workout bouncing all my stress away. It was fabulous and fleeting but I enjoyed every minute of it. 

 

This is my meme and an example of the mighty Chinook weather pattern

 
Getting back to the winter and procrastination at hand, I’m not usually a Bah humbug I love Christmas as you can read about here. But I’m a Grinch about shopping it’s either done very early or very late on my time table. This year early didn’t factor into my plans and late well I’m not entirely there yet but I will be soon if I don’t stop procrastinating! 

In my defence though I had the flu bug hit my home like an assault team taking no prisoners. It took down each member of my family with no mercy. I cleaned up enough bodily fluids and wiped down and sanitized every square inch of my household. I was cursing the former owners on their decision to install beige carpeting in my kids rooms! 

Even now my plan was to mail off my Christmas cards and parcels today but my youngest child is sick with a nasty chest cold. I’m doing my best to not share in that misery but my loving little germ factory is crawling all over me as I write this. Sigh I can’t say I blame him though all I want is my Mommy cuddles when I’m sick. But unfortunately heaven doesn’t take drop ins just permanent guests. 

  
I felt I was more on the ball this time then last year. There was a death in my family two weeks before Christmas and with that experience I learned 

  1. That death can devastate you even at the most special time of year 
  2.  That the good really do die young. 

     3.Cancer really, really, sucks. 
This year I had one of my closest friends and a family member die. It’s a time of self reflection, sadness, and also to realize what’s important in life. Not the crossing off every present on my kids list, shopping for family members that can’t shop for themselves, or even passing along my own wish list to my husband. Who was kind enough to buy me some new specs so that I can see properly since my eyes are getting older. 

The list that matters that I’ve lived, loved, and learned from is as follows.

  1. Kindness above everything  is the most important gift to possesses and give freely. 
  2. Gratitude is a game changer in life. If you’re not grateful for what you have, you won’t appreciate what you want. 
  3. Love solves everything, is everything, and means everything. 

It’s like the good ole wise Grinch from Dr. Seuss’ How the Grinch Stole Christmas found out and narrated by the late great Boris Karlov says:

  
It’s time for #Mondaymusings and all you have to do is this list of things. 

Write a post sharing your thoughts with us – happy, sad, philosophical, ‘silly’ even. Make it as personal as possible.
Use the hashtag #MondayMusings and link to this post.
Add your link to the linky which you will find either here and on the post of a co-host.
Use our #MondayMusings badge to help other bloggers join in too.
Today’s Write Tribelink up is co-hosted with The Bespectacled Mother, Vinitha Dileep, and Everyday Gyaan. Thank you to these lovely ladies for co-hosting and letting me part of some Monday magic. ❤️

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The Climb

Life can be an uphill battle where you climb the highest mountain and struggle not to fall off. It also has a funny way of working out, and sometimes you get more than you bargained for. I gave birth to my son a month premature after a very stressful period of grieving for the loss of my Mom. My baby and my other son became my whole purpose of surviving that dark, depressing time. His brother was only four when I had to tell him yet another person he loved had died.
Having a premature baby means so many mindblowing things. First, you have to wrap your brain around the fact that your child is really here! Next, you need to devote every waking minute of getting them healthy enough to take home. I had a son at home to raise and a newborn and he belonged to the hospital until he was a healthy weight. I remember that time like it was yesterday how joyous and stressful it was. The sleep deprived days and nights that followed, as well as all the trips back and forth to the hospital when I was released but my baby wasn’t.

My baby was heavily jaundiced and very sleepy so it was difficult to keep him awake long enough to give him a full feeding. I remember having to test weigh, feed, burp, change his diaper, feed him , then test weigh him again. It was a routine that we followed for nearly two weeks and all I wanted was for my baby to be healthy enough to take home. He never did receive phototherapy even though I saw babies before him able to. It drove me mad with anger as the whites of his eyes were yellow that he was so jaundiced.

Back then all the signs pointed to the fact that something was amiss. He would cry if he wasn’t held snugly skin to skin with me. He loved a tight swaddle but his hands and his feet had to be free. He was undoing his blankets and the nurses kept on saying I wasn’t wrapping him tight enough. I replied “this isn’t my first rodeo so I know how it works.” Little did we know my baby was rolling in his glass bassinet and unravelling the swaddle!

He was only four days old and he still hadn’t opened his eyes. I watched him closely as he didn’t resemble a helpless newborn as his strength was astonishing! He would thrash about in his tiny little home and he seemed happy with the thud it would produce in sound. When he was sleeping he would sleep so soundly I would check to see if he was breathing.

I would venture to his crib side and just sit there in the rocking chair watching him and marvelling at his beauty. He would wake up roll towards me and put his hand on the glass. He didn’t like the bright lights or loud noises that would generate with a room full of babies and people. He thrived on being held snugly and loved to be burped as he would release the biggest and loudest full grown man gas bubbles!

I was in awe and scared for my son as he would get his jaundice test daily and one time the nurse had me hold his leg while she lanced his foot! This was the worst experience as he would thrash about and I would beg her to put him under the photo lights in the incubator. He was strong I was afraid he would hurt himself, yet my pleas fell on deaf ears. Everything pointed to the fact that he was a sensory overloaded child. He would be so quiet then wail for hours. It was almost as if he loved to hear his shrill cry.

The day came where I could finally take him home and he had to pass a few tests before leaving. I remember feeling anxious, excited, and scared of the prospect of taking my tiny baby home. When the maternity health nurse arrived the next day she gave him a thorough exam. She had asked me if I had any concerns or comments because it had been four years since I had a baby at home. I replied:

“I only had one and then I said watch” while I placed my baby on the floor with a blanket.

We then proceeded to see my newborn 11 day old baby roll back and forth from right to left! She was in awe as much as I was and I asked her was this “normal”behaviour for a tiny baby. Her response was:

“we always advise parents to keep their baby’s belted and secure on the change table. Even placing one hand on them just in case. Your baby is not the norm he’s the just in case I spoke of.”

Life with my son’s added up to long days and longer nights and plenty of love. My baby wanted to held 24/7 and I spent a lot of time sleeping in a rocking chair. He also was pacifier dependent and would eat every 45 minutes in a given day. If he was cluster feeding it was less and I was shedding my baby weight quickly. He loved the deep pressure football nursing hold while he was snug to my body. Soft fuzzy blankets rubbed on his skin made him coo, and the feeling of a tremendous “man burp”, and being shushed beside his cheek would lull him to sleep.

When it came to time to introduce solid foods to him he put up such a fuss. Everything had to be mixed with carrots or sweet potatoes. I made all my baby food and he would turn his nose up about the stews, squash, and peas. When he got older and ventured into cubed finger foods he would refuse certain vegetables and fruits. He ate a lot bananas and carrots as they are the only foods he wouldn’t cry over. By the time he was 18 months he was eating five foods and saying two words strung together. By two he had a very limited vocabulary and a small assortment of foods he would eat.

I made the call of getting him assessed for his developmental milestones. I read and researched a lot and came across some information on sensory disorders. I made the referral to a child development agency and found a developmental Pediatrician. That led to the discovery that my son fit the profile of having Sensory Processing Disorder. In particular Sensory Modulation Disorder and was seeking out sensory input to gather the messages in his daily environment from his central nervous system to relay it to his brain.

I had heard of SPD as my close friends daughter was diagnosed with it as well as autism. Now it was affecting our lives as my son was rapidly giving me grey hair with his seeking behaviours. By climbing five shelf bookshelves and jumping onto the couch, then jumping off stairs falling, cutting his head open and crying because of the blood running into his eyes! I took on the role of Mom PHD while I researched ways I could help and to stop him from hurting himself.

His pain threshold wasn’t something I could understand at all. As his older brother could have an injury like a stubbed toe, and you could hear him for miles with his reaction. My youngest son is now a preschooler with a diagnosis of Sensory Processing Disorder and Global Developmental Delay. He now has a therapy team in place with an OT (Occupational Therapist) PT (Physical Therapist) and Speech and Language Pathologist (SLP). I discovered in all the research that I’ve done that early intervention is the key to coping and strengthening neuropathways to form new information and skills in the brain.

He also has an Educational Aid that works with him at preschool. In the course of a two months he’s had a ploy sonogram, genetic testing, EEG, and next week an MRI. He was found to have severe Obstructive Sleep Apnea, and I’m currently awaiting the results of his EEG. He has endured it all like the fighter he is from birth. He’s taught me more about what matters in life and they are  family, love, and acceptance. And what doesn’t matter judgement, deadlines, or a neat as pin home. I know whatever trial we have next to face we’ll solider on through it, and the climb has been worth every moment to helping him live a better more balanced life.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by  The Sensory Spectrum and 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! Want to join in on next month’s Sensory Blog Hop? Click here!

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http://www.inlinkz.com/new/view.php?id=587639

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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!  


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Anonymous 

There are times I put my ball cap on big sunglasses tuck my hands in my hoodie kangaroo pocket and hide out. Sometimes I do this at home or when I go out so I can remain anonymous. I might even look creepy in my incognito splendour, but I feel safe. I like to people watch there I said it, and this is a way I can do it casually. I learn so much about watching people. There’s an art form to it, a nuance that I appreciate. I don’t stare I just watch how people use their body language, talk in public, how they get absorbed in their “face in their phone world.” 

I have always enjoyed this past time and until now I’ve remained anonymous about it. People inspire me I can think up things to write just from seeing people interacting with each other. Sometimes I take notes while I’m sipping my Starbucks, and word prompts or blog ideas pop into my head. I used to go to parks while I was pregnant with my first and watch parents in action. I watched how they held their babies, what kind of strollers they used, how they cooed and kissed their precious bundles of joy. I enjoyed seeing them in those sweet, candid moments in love with their little family’s. 

I was so eager to learn and take mental notes about what kind of Mom I would be. Little did I know that the biological need kicks in whether you birthed your baby or were blessed with someone’s else’s. I just knew what my son needed whether he was comfortable in a football hold, or too hot from skin to skin and he would push his arms up and away from my chest. I would watch him for hours too just before I fell asleep while he was dreaming away in baby land. 

I could watch his body movements, the way his long eyelashes made his tender baby face look so beautiful. The roundness of his chubby cheeks, and the sweet way he pursed his lips like he was about to kiss me. I couldn’t get enough of baby watching when I had my babies. And I made friends with other Mom’s and I watched and admired their babies as well. My second baby loved to wiggle even when he was sleeping. He was in constant motion right before he’d drift off to sleep. His rosy cherub like cheeks looked like two little apples I could nibble on. His lips were always in a full pout, and his soft blonde hair I would stroke and admire his peacefulness. He was so angelic and since he wasn’t much of a steady sleeper I appreciated these moments even more. 

Watching my children while they slept made me appreciate their beauty, calmness, and the tender years that they were at. And how fast they were progressing as they grew from babies, to toddlers, to preschoolers, and off to Kindergarten and leaving my nest. As they’ve grown this made me want to study them as they play. As if I could capture this time of their lives and bottle it for safe keeping for my memory bank. The voices my youngest likes to use with his superhero characters makes me giggle. And the songs and dances my oldest uses to entertain himself and other amazes me with his talent. I also watch them watching me as I’m reading, cooking, or working out, asking me a hundred questions about what I’m doing, and when will I be done. 

As much as I enjoy people watching I’ve given birth to a couple of investigative people reporters. My son’s will give me updates on our neighbours comings and goings. As well as what his dog is up too, sleeping, eating, or sniffing as he sees my youngest staring at him through a crack in the fence. I have to remind my kids it’s not nice to stare at people in public. A passing glance is long enough and adding a smile if someone looks your way can make yours and their day. I’ve received compliments from other people watchers about my son’s. Which always makes me puff up my chest as a Mommy peacock strutting my parenting stuff. 

I’ve been told by little Grandma’s in the grocery store how polite and cute my kids are. How they must keep me giggling with their antics. I’ve nodded, agreed, and have added “yes laughing and a little hair pulling as well.” I used to feel so anxious if someone was watching me with my babies. Almost like they were trying to see where I was doing something wrong, or I would be judged for not doing something right. Igniting  the whole Mom wars debate that I wanted to avoid like the plague. 

It spoke a lot more to my insecurities then what people thought of me. Usually they just wanted me to hurry up in a line up when deciding what meal to order. They weren’t judging me they just were in a hurry with life. And there I was with my baby smiling away at them from my stroller. I got over that after my children started getting older. Now my oldest is quite a handsome boy with brilliant blue eyes, and an easy smile on his lips. 

He captures attention wherever he goes as he’s kind, polite, and always engages someone in conversation. My youngest he’s equally handsome and adorable, but where his brother is my quiet child he is my loud, wild, child. He is a boy very comfortable in his skin. He has no qualms of telling you his name, how old he is, and inviting  you back to our house for a play date. With him everything is an adventure, something fun and exciting waiting to be discovered by him. I love how he tackles life whether it’s scary or challenging  he wants to take a bite out of that experience. 

There are those days I want to be anonymous when he raises hell with being uncomfortable or panicked about something in his environment. This is something he has no control over with his neurological disorder. If sets him off sensory wise then we have some drama to contend with. Those are the times I want to crawl underneath the table and hide under my hat and dark sunglasses. But I don’t, I’ve taught my kids to never shy away from life. I just do my best to handle the situation and regulate my son as quickly as possible. Then we can leave as quietly as we came in or I can be the people watcher, and say “take a picture to remember us by.” Which actually happened in a McDonald’s as there were a few judgey Mcjuderson’s in attendance. Oh to be anonymous, incognito, say what you say, dream what you dream, feel what you feel without a care in the world, and be free. Now if you will excuse me it’s time for my weekly people watching session at Starbuck’s. 😉

This has been my Sunday confession with the loveable More Than Cheese and Beer. Head on over and check out her anonymous Sunday confessions. And all the lovely ladies who linked up today. Thank you,  smooches. 😘

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Ten Things of thankful 

  
It’s my favourite time of the week to link up for Lizzi’s TTOT blog hop. I’m so happy I’m able to participate as I had some WordPress app issues and my post kept getting “eaten” or not being able to upload pictures. Frustrating to say the least, but all is well and I’m back baby! 😉
1. I’m thankful for being able to admit my pain was a heavy burden and I reached out to friends. I was received with so much love, warmth, and kindness I had wished I had done it sooner. 

2. I’m thankful for memories I have of my beloved friend that passed away recently. Even though I’ve  experienced grief so thick it’s felt like quicksand, I have loving memories to hold onto to, and a connection with her family. ❤️

3. I’m thankful I’ve been brave and ventured out of my comfort zone and made some new wonderful friends. It started out as a mystery friend in a Facebook group where I got to spend the last 3 months corresponding with her through cards, letters, and little gifts. The best part was I was a mystery to her and I made my big reveal a week ago. We exchanged texts and met up the next day. We found out we only live less than an hour away from each other. 😃

3. I’m thankful I have a beautiful home, a hard working husband, and really amazing children. They have loved me through my pain, tears, and grief with their love, laughter, and smiles. ❤️

4. I’m thankful that the weather has changed and warmer days and nights are upon us. I was able to get some yard work and some planting done while enjoying the sun. 

5. I’m thankful for when I’m feeling lonely I just have to reach out and someone will be there. Whether that’s online, in person, or at the end of my phone. There’s comfort in knowing that when I feel really sad and out of sorts. 

6. I’m thankful for my family for without them I wouldn’t feel strong enough to keep fighting through my struggles. They lift me up on angel wings when I forget how to fly. 

7. I’m thankful for the sound of my children’s laughter. Hearing it as it wraps our home echoing in happiness and intensity, is like music to my ears. 

8. I’m thankful for the people I have in my life filling it with love, laughter, support, and understanding. You all fill my nightly and daily prayers with gratitude for being a part of my happiness. 

9. I’m thankful for old friendships being renewed again. I spent 2 1/2 hours on the phone last night catching up with a childhood friend I’ve known and loved for 30 years. We have recently moved closer to one another in the last year, and I’m so excited for our family’s to connect. 😃

10. I’m thankful for all you dear readers that come here each week to read my stories and comment and appreciate what I have to say. You make this the best part of my day, next to cuddles with my family. Thank you so much for filling my love bucket to the brim. ❤️

This has been my submission to   Lizzi’s TTOT I’m so thankful for wonderful her and her tribe that have welcomed me into not just a blog hop but a new way of thinking and appreciating everything in my life. 😃🌟

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