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. ❤️

It takes a village

I recently took a physical for life insurance purposes. My nurse was kind and polite and when I was asked why do I take an anti-depressant when your otherwise healthy? I simply replied “I’m a special needs parent who’s always advocating, teaching, learning, researching, and loving my family I have to cope somehow.”

The look of surprise that crossed his face was something that I’ve seen before. I’ve had people ask me how do you do it, deal with autism, ADHD, ODD, SPD, and a genetic neurological disorder that affects everything from motor skills, to recessive language delay, to selective eating issues due to textures, smells, and shapes of food.

I have no other answer other than I don’t think about it I just do it. All of it needs to be done always. I need to advocate for my children so that they can have access to resources, funding, and therapy inside the school system and outside within the community. I need to keep up with the latest research on my son’s genetic disorder so I know how to help him specifically and what other co-morbidities I need to be aware of. I also need to teach him about number and letter recognition so he can begin to print what he knows. I have to deal with regression as it’s the part of his brain that’s affected by his micro-duplication.

I need to check, double check and help my son re-learn when he’s lost his ability to process what he’s learning in school. He’s come a long way with his progress from screaming if I tried to help him hold a crayon in preschool to printing his name confidently in elementary school. Now his world’s growing bigger as he attempts to make sense of all those letters on the page and learn to read. I remember what joy I felt when my Mom introduced the magical world of books to me.

I long to see that light in my son’s eyes that I know appeared in mine. Yet I see him stumble on three and four letter words and in frustration throw the book across the room. At the moment we’re working on his reading comprehension so that he can create the story from what he sees illustrated on the page. As for the phonics and word recognition I’m using a multi-sensory approach as well as his special education resources teacher does in the classroom.

1. First I print the word then I get him to to tell me the letters and we sound it out and say it together.

2. Next I have him build it with his alphabet letters on the line below.

3. After he prints the word with his pencil.

4. Then we go over the word and use it in a sentence and repeat with the remaining words.

Sometimes he only has enough patience for three words but to me it’s quality over quantity. I learned the Write, build, print method from an amazing website called Understood. I love this website as I now have a resource that’s there to help us both on our learning journey.

When I see the furrow in my son’s brow as he concentrates to maintain his alligator grip on his pencil I marvel at his independence. He sings a little song as he does so. Alligator grip then my pencil doesn’t slip. Then when he’s completed his task his beautiful smile makes his whole face light up. I’m excited to incorporate building Lego into his learning as we work on math next.

I have five months to prepare him to catch up with his peers and continue onto the next grade. He has an excellent team at school who’ve been there to help with his frustrations, transitions with the use of visuals and successes. My son teaches me just as much as I’m teaching him this why I choose medication for myself and seeking the guidance of a therapist.

No parent is an island and it takes a village to raise a child. When it’s a child with special needs it takes strength, courage, and a bigger, non-judgemental village. I need to be able to cope with this roller coaster of a life we lead. I need to stay on task and ten steps ahead of a sensory overloaded meltdown. Most importantly I need to take care of myself and repair what I feel is broken. My mental health and the well being of my children depend on it.

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

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Monday Musings-The Aftermath of Time

It takes two minutes to return a smile, a lifetime to grieve a loved one, and thirty seconds for panic to set in when your child’s missing. People can vanish without a trace, be lost and never found, die of sudden or natural causes and we’re left to wonder about time. The time we could’ve spent sharing our love and appreciation with that person, a better use of the time spent with them not knowing it would be the last time we would see them. 

It’s happened a lot in my life-loss and the grief’s felt like a never ending cycle of turmoil and pain. Ever circulating and appearing in my life for a personal loss of life or one shared with a friend. Time where you wish you hadn’t said words in anger, fear or mistrust. When you could see past your very human ego to forgive instead of forming the words of negativity and pain. Forgiveness really is an art form, to move past the pain inflicted on your psyche and spirit. To turn the other cheek and give kindness when in your heart you know it’s the right thing to do. Forgiveness solves many problems but what happens to the person who releases the one who caused the indiscretion in the first place? 

Do they simply forgive and forget words that sliced through their heart like a serrated knife? Do they move on and feel their spirit lighter with an air of peace? Does the simple act of saying “I forgive you” imply that they understand why the hurt was inflicted upon them? Here lies in the struggle, I personally find it difficult to forgive. I was raised with an armour of stubbornness and tenacity that’s made it difficult to make that choice to forgive. I feel weak and vulnerable, to relent to pain caused to me. I’m human yet moving past the pain to divinity is better for my soul. 

I recently had an argument with my son and in his preadolescent mindset he chose to walk away then help resolve it. We were in a city we had never been to before and on our way back to the hotel we were staying at. He thought his Dad and I were being unfair so he stomped away. I had no idea where he was going or if he knew how to find his way back to our hotel. It was a dark yet a well lit parking lot but to see him run away like that was heartbreaking. I was feeling more scared then angry as I ran after him and he disappeared!  

My family and I entered the hotel and I couldn’t find him anywhere. My lungs were ready to burst as it was cold night and my asthmatic symptoms were setting in and I frantically searched for my son.  I asked the front desk staff if they had seen him and they replied they had not. The woman said “do you need a key card” and I replied “no I just need my son back now unharmed!” I made my way to the elevator to see if he was waiting for me while my husband and youngest son went ahead to our room. 

For fifteen heart stopping minutes I had no idea where my oldest son was. Was he hurt, was he kidnapped, was he lost and searching for me? By the grace of God he was found when another friends parent saw him waiting in the hallway and took him back to our room. I quickly jumped in an elevator and as my mind raised all I could think of was the last time I saw him. The hurtful words that were exchanged, the look of anger on his face, and how lost I felt when I couldn’t find him. I should’ve took back those spiteful words of anger said, I should’ve recognized he was frustrated and needing to be heard than reacting to his outburst. I needed to make better use of my time with him letting him know even though I disagreed I still loved and respected him. 

When I got to my floor I burst out of the elevator like I was on fire and ran to my room. I opened the door and grabbed my son up in my arms in a hug that needed to last a lifetime. He squirmed away from me then eventually relaxed into my embrace as the tears flowed. I tried to talk but my words were halted by my sobs. 

What I managed to convey to him was that I was so worried that something could’ve happened to him. With the last words we had spoken to each other in emotion were not what we meant to say. Yet it’s true as the adage says we always hurt the ones we love. Why is that easier option then to just agree to disagree and come up with a solution? There were apologies given and received and for the rest of the weekend he wasn’t out of my sight. Except to play hockey and use the dressing room facilities. Forgiveness was difficult but necessary to give in order to value each other and our relationship. 

I never want to go through that heart wrenching experience again! I feel like it aged me by ten years and took time off my lifespan. It all begins and ends with time.  I’ve learned a valuable lesson to curb my temper and refrain from spouting words of anger and angst in the heat of the moment. My son has learned that a moment of negativity can cause him to make a poor choice yet he’s willing to admit his mistake and learn from it. Time it’s the deciding factor of all our words, actions, and transgressions. And I for one will be using my time more wisely with my friends and loved ones. You just never know when that time will run out and regret will take its place. 

Would you like to take part in #MondayMusings? Our host is Everyday Gyann read her post to see how to slow down and get creative. 
Here’s how it works:
Write a post sharing your thoughts with us – happy, sad, philosophical, ‘silly’ even. Make it as personal as possible.

Use the hashtag #MondayMusings.

Click on the Everyday Gyann link then add your link to the linky below

Use our #MondayMusings badge to encourage other bloggers join in too.

Visit and comment on the posts of other bloggers linked here.

Share the love.

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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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The Haircut

I see the long shaggy hair covering his eyes and he’s bent over trying to put his Batman in his Bat mobile. He’s getting so frustrated because he can’t see what he’s doing and this task is taking too long to figure out. I gently offer to help him and he runs away in anger and slams his door. He’s only four and already acting like a teenager. I pick up his toys, walk to his room and gather him in my arms. 

  
I wrap his blanket around him holding him tight in my Mama bear hug. Deep pressure soothes him and I rock until he stops crying. I brush the hair back from his eyes and I say the dreaded words “oh honey it’s time for a haircut.”

 Soon his body tenses and he’s ready for fight or flight. I rock him and tighten my hold till his fear ridden body is limp in my arms. 
The next day I tell my husband our son needs a haircut. He shakes his head and says “well I don’t want to do it.” Neither of us do it’s a two hour ordeal and the emotions overflow and we’re all stressed. We take turns holding our sweet boy who will turn into a howling banshee any moment. It’s my turn to perform the task of completing a decent haircut. 

I assemble my tools scizzors, buzzer, guards, comb, spray bottle, and a cloth. He will not wear a cape so we strip off his shirt and wrap a towel around him. I place his blanket in a clear plastic bag to protect it but so he’s still able to see it. Next I grab the iPad, thermos of water, and a bag of lollipops. 

I call my husband to help wrangle our son and it’s easier to catch a greased pig at a BBQ! He holds him tightly and I begin wetting down his hair. I’m being very careful to not spray his face at the same time singing his favourite song while his Dad finds him his favourite superheroes on YouTube. I begin to comb his hair and I cautiously snip his bangs. This is not an easy task as I venture close to his eyes. 

I comb his hair out a few more times and move to the sides. I gently approach his ears and I’m holding my breath while I cut around this delicate area. Next I move to the back of his head making sure to work quickly now as he starts to wiggle. I move over to other side and you can hear a pin drop as I cut around the other ear. The hair starts falling and covering his face and blanket in the plastic bag. 

I quickly blow it away and brush off his lap. He starts in with a low growl and I back off completely gently soothing him with my singing.  I carry on only to reach an impasse as he doesn’t want to sit any longer. I bribe him with a lollipop and ask his Daddy to hold him in his blanket bear hug. Instantly he’s soothed and I continue cutting. I’m not a hairstylist I have no professional experience whatsoever. Other than cutting his big brothers hair in the classic “page boy” style.

 I comb out his hair and continue cutting until he gets excited with the video and jerks his head and shoulders around. I narrowly miss stabbing him in the back of the neck! I tag team out with my husband and we trade spots. He plugs in the buzzers and I brush the hair away from our sons face and body. I prepare him for the buzzing sound and hold on to him tight because I know this is going to be a bumpy ride. 

His Dad works quickly and efficiently as I tighten my grip and sing louder overtop of the sound of the buzzers. He’s on my lap wiggling out of my arms and it’s like holding a bag of snakes! We’re almost in tears and we quickly wash his hands and face that are covered in hair. I pick up the hand mirror so he can survey our work and he starts to cry he wants all his hair back. A full sensory meltdown ensues while he can’t process what happened and why I can’t put the hair back. This is the invisible cloak that he wears as he tries to process all eight of his senses. 

I can only imagine what this has felt like for him. As much as we prepare him for haircut time it’s still unbearable. We let him run free and then I change him into his pyjamas while I make him a snack and give him something to drink. He sits at the table singing away between bites and I look at his happy face in awe. Just moments ago I imagined that the clippers felt like hot razors attacking his scalp as his body, brain, and central nervous system were in overload. He finishes up his snack, I wash his hands and face and hug him so tight while telling him how proud I am of him. 

He cuddles up with his Dad and watches a cartoon before storytime. I clean up the mess in the kitchen, sweeping, making lunches, and pour myself a stiff drink. I go downstairs and sit and sip while glancing up at my son and his Dad nestled together in the recliner. My husband says “thank you for being a brave boy for Mommy and Daddy.” 
His eyes well up with tears and he holds his Daddy’s face in his little hands and says “you hurt me Daddy.” I watch my husband’s face crumple and we look at each other and silently agree that this will be the last haircut he ever gets at home. This is our life with Sensory Processing Disorder. 

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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Monday Musings-Triggers of the Past

What is it about the past that activate the triggers in your mind from childhood? It’s like those thoughts lay in a locked  box deep inside my brain then something happens and then they’re triggered, and opened up to sift through like a filing cabinet of memories. I recently woke up with a stiff neck and had to spend most of my day resting and stretching my overworked muscles. 

I started a new fitness program and I was overzealous about it and this is the result. I have to remember I’m not twenty anymore and take it at a less than frantic pace. All I could think about as I lay there feeling sorry for myself was how much I loved to climb as a child. You could find me in trees, on top of the roof of my house, and sitting on my Mom’s upright piano. 

There was one time I was climbing like usual after I bounded out of the house after breakfast. I reached out to grab a branch and instead I grabbed a snake! You can imagine my fright as I felt helpless and plummeted to the earth below. I lay there listening to my bones crack I wondered if I could walk and if that snake was going to land on my head. I could see it still in the tree hissing at me like something out of Disney’s Robin Hood. 

I never did like that character Sir Hiss as my Mom and Gram had a fear of snakes and all I knew was to fear them as well. My Mom came outside to check on me and saw me lying on the ground. She started screaming, crying, and praying as she tried to find help. All my siblings had left for school and my Dad for work. So she picked me up and brought me into the house. 

She laid me softly down on the couch and covered me with my favourite blanket. She put a cool washcloth on my forehead and began to check my head and neck for damage. I was so sore and had a big goose egg on the back of my skull. It hurt to move my neck so I just laid there while my sweet Mama cried and prayed over me. 

We lived in a rural community so to find anyone home to take me to the Dr was a slim and none chance. My Mom gave me something for the pain and turned on the tv. She had put my favourite show Sesame Street on and I listened and drifted off to sleep. I survived that fall and many others because I was a climber. Now I have my own child that loves to climb bookshelves, the back of the couch, on top of his bike, and has yet to climb a tree. 

This is what I thought about as I lied there in my bed having my pity party unable to turn my head while my sweet little boy looked after me. I don’t do helpless and sick very well, I don’t suppose any of us does. I just wish for my Mom to look after me like she did so long ago. But time has passed on and with it her life has too so I end up wistfully missing her and her tender loving care. 

Childhood triggers fill my mind with memories of good days and bad. Songs, games, and old friendships that were so important to me. I think of that old red house that reminded me of a barn on a farm. With the big heater with the stove pipe in the middle of the room. I think of the many hours spent there on my beloved Mama’s lap as she rocked me holding me tightly in her arms. I wish I could go back there for another day feeling that loves and cherished. Instead I lie here in my bed stiff and sore cuddling my child. Who will grow up and have these memories of special times with his Mom. 

This brings to mind a poem to fill my wistful grieving heart. 

Forget not that the earth delights to feel your bare feet and the winds long to play with your hair.

Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.

Ever has it been that love knows not its own depth until the hour of separation.

-Rumi

This has been my late edition of #Mondaymusings as I was searching for the linkup that is now being hosted at Everyday Gyann if you’d like to join in here are some tips to take part in #MondayMusings? Here’s how it works:

Write a post sharing your thoughts with us – happy, sad, philosophical, ‘silly’ even. Make it as personal as possible.
Use the hashtag #MondayMusings.

Add your link to the linky which you will find here and on the post of a co-host.

Use our #MondayMusings badge to encourage other bloggers join in too.

Visit and comment on the posts of other bloggers linked here.

Share the love.

  



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Monday Musings Worry

Waiting for days on end for news that I’m praying will be positive instead of negative. I watch my son’s behaviour to indicate if he’s having seizures and I’m missing out on documenting them. My mind can go in a thousand different directions without hearing any results for a month. And trust me it has, is this how my life is supposed to be in constant worry for his health? 

I never knew when I rubbed my belly at eight months protecting him from the news of my Mom’s death that I would be in this state of mind now. I never knew with him arriving at thirty-six weeks we would encounter all these medical issues. I wasn’t prepared for my one and only Mom’s death, nor ready to to give birth prematurely. 

I went home from the hospital reeling with grief while my baby had to stay behind in the NICU (Neonatal Intensive care unit) I had a four year old son and a husband that needed me and I felt so torn. All I wanted was my Mom to hold me and tell me everything would be alright. But I didn’t have her then and I don’t have her now. 

Being a special needs parent feels a lot like venturing out on a lonely road to find my happy, peaceful place in my mind and body. A lot of the time reading and researching helps so I know how to approach Dr’s and specialists with my questions. What is the reason that my son’s Global Developmentally Delayed, why does he struggle so much with basic concepts of visual spatial relations and verbal fluency with his conversational speech? 

Why does he suffer with anxiety, OCD, and possibly ADHD behaviours?  I’m told he was born early so he would be delayed to reach his developmental milestones. Which is half true he sat up and crawled later then his peers, but walked early and ran laps around me by the time he was fifteen months. Yet there are challenges, his speech was delayed, he had a high threshold to pain, but a weaker immune system and was sickly as a baby. 

Life has turned into a system of checks and balances he’s been tested for genetic disorders, allergies, and I’ve completed many developmental questionnaires. To date he’s had a polysonogram and an EEG that will be followed by an MRI and surgery to help improve his severe Obstructive Sleep Apnea Disgnosis. He has a wonderful therapy team that is helping him succeed so I question myself what do I have to worry about? 

I worry for his future will he hold down a job, graduate and go to college, meet someone special and fall in love? What will it be like when he does and he gets his heart broken? How will he cope with his anxiety, how will I? Will he still be living with us or in assisted living? I pray he will be continue to be his own success story as I cheer every accomplishment he makes. The latest is remembering words to the Christmas carols he practiced in preschool. As well as being able to sing Head, Shoulders, Knees, and Toes while performing the actions. 

When we would sing that song before he’d get so confused and start yelling and putting his hands over his ears to block out all the excess information flooding his brain. I had to explain to his preschool teachers that the song irritated and I think even scared him. It broke my heart to see his reaction so after three months of therapy he can sing the song with a smile on his face. Then I think you don’t have anything to worry about he’ll be fine. I’ve heard this from well meaning people in my life and I always say he will be with the proper early intervention in his life. 

The call I’ve been waiting for finally came in today after waiting for thirty long days! The results were great there’s no seizure activity but his brain will need to be assessed at his MRI. So I arm myself with Teflon encased around my heart, cover myself in prayer and I realize I’m not emotion or bullet proof but I have God and a wonderful support network on my team. I will help my son get through this with love, acceptance, and prayer. I’m a warrior, and I love homand I may get knocked down with worry but I will always get back up ready to fight. 

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. Write Tribe is going through some maintenance so it will be hosted at a different website for a few weeks. 
Today’s Monday Musings is co-hosted by Crazy Little Family Adventure and Everyday Gyann please check out their posts and all the other talent that link up. 

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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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Writer’s quotes Wednesday and #BeWow

This week has been busy with my oldest son’s hockey season starting. Between school, preschool, and hockey I spend my time driving up and down the highway. My youngest son who struggles with Obstructive Sleep Apnea had to get a polysonogram. 

  

I watched with nervous anticipation as the lab tech hooked him up with sensor pads and wires. I did my best to assuage his fears. I told him that his magic wires would hook him up to the computer to give him superhero powers. For all he’s had to endure medically, his bravery gives me wings to fly, he is my superhero  ❤️

  
This has been my submission to Silver Threading and Bewow linkup for Writer’s Quotes Wednesday. This is where I find love, hope, and inspiration. Please give this talented group your reader love, thank you. 😘

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Wearing my heart on my sleeve 

I’ve always been an emotional person the wear my heart on my sleeve kind of gal. There’s times where I think I need to have a thicker skin or put my heart away so I don’t get so easily hurt. It comes part and parcel with being empathic I feel people’s feelings, and I can “touch” people’s energy. I know when someone isn’t good for me or my loved ones and I can stay clear. 

I do my best to give people the benefit of the doubtand not judge a book by its cover. It will still happen to me and someone I love, that’s the way of the world unfortunately. Today was just like any other day before preschool filled with excitement an anticipation.  My son loves going to school and he wears and shows his feelings with his whole body. He was so excited to stomp up the stairs and count with me. He loves seeing his teachers and playing with his favourite toys there.  For the last month him and I have considered this a safe, fun, and educational place. Today though something happened and I’m still trying to process it. 

I have something brewing in my mind and my heart. If I don’t get it out I think I will combust! I was sure as I mulled it over to see how I could’ve handled it differently it would evolve into a blog post at some point. Today I was waiting with my son for preschool to start. There was a couple of families there and a little girl was staring at my son. He was standing there stomping as it’s his new thing that he does to feel comfortable in his environment, to gain sensory input. It’s an eclosed narrow hallway so his stomping is quite loud with its sound vibrations. 

I asked him to please quiet his feet inside and a classmate of his looked at him and announced to her Mom that he was crazy. The Mom (who did not acknowledge me besides with nervous laughter) said to another parent at that age crazy is good. I stood there stupefied, angry, and hurt for my son. I told him you’re awesome and don’t let anyone change that! My son isn’t crazy he’s very busy and full of kinetic energy and must move to learn. He has Sensory Processing Disorder #SPD and this how his eight senses react to sensory input. 

We all know we have our five basic senses of touch, taste, sight, hearing, sound, and smell. There’s many more types of senses but I’ll focus on the other three I was referring to:

  1. Propriocepetion- gives you the ability to know where your body is in space within your environment in relation to your other body parts. Think of the song Head, shoulders, knees, and toes. 
  2.  Equilibrioception- relates to our vestibular sense that’s found in the inner ear. This sensory sense is all about our ability to balance and have agility. 
  3. Interoception- relates to our body’s sensory system to know when we’re hungry, thirsty, or the urge to eliminate. 

My son is constantly seeking sensory input as all these senses build up inside his brain, body, and central nervous system and cause a traffic jam. Some of his senses are strong and some are weak and how he needs to seek out input looks different to everybody.

 This misguided observation we encountered didn’t bother my son at all. He doesn’t see himself any differently from other kids. He continued stomping while I stood there stewing in my furiousness for this hurtful remark. He made music with his feet, all be it loud music and made a little girl dance. Then that started a chain reaction and another classmate started twirling and he was still smiling and stomping. 

Although I saw his happiness I felt my heart crack for my child. He’s not different he’s different abled and is receiving therapy from his team so that he can function better in a world that can at times misunderstand and judge him. On Oct. 8 th it’s Sensory Processing Disorder Awareness please spread the love, awareness, and educate for SPD. 

   
  

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