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. ❤️

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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A-Z challenge Brave

I recently started the blog linkup challenge of all the letters of the alphabet. I started writing them and left them in a draft status. For the next few days I’ll be publishing them and I’m thinking I’m either brave or crazy for doing so.

Word prompts always get my writing creativity flowing and I tend to write whatever pops into my head. Sometimes that’s refreshing and other times it leaves me feeling vulnerable. I recently shared that my son was diagnosed with autism on World Autism Awareness day. I considered writing about it with the beginning A of the alphabet but I chickened out and I wrote about acting instead. It’s a very personal part of my family life to discuss but this is what it feels like to be brave in print.
We started out on this journey two years ago when I was aware of my son’s developmental challenges. He took his first steps early at ten months when we had just moved into a hotel. My husband had just got a job transfer to a new town while we were attempting to sell our house in the previous one. By the time our youngest son was twelve months he was running and had a small list of foods he would eat.
He also wouldn’t sleep for long periods of the night even after cutting out his first nap of the day. I was living on caffeine and Carnation instant breakfast shakes. He was on the move constantly and I would take him to his brother’s school to attend a play group, and there I noticed he wasn’t behaving typically like other children in his age group. I watched as he grabbed toys and played beside me while I participated in craft time and play dough making. He wouldn’t touch any of it nor interact with other children.
He would also have a difficult time with crowds if the classroom was too busy. I chalked it up to tiredness and I’d take him back to our room for nap time. The vacuum would scare him and he didn’t like surprises or things he couldn’t predict. I had always referred to him as my sensitive boy when he was born as he was quiet but could get his feathers ruffled quickly. It got to be exhausting keeping him calm, well fed, and happy as he was easily sensory overloaded.
He was tactile hypersensitive and never liked to touch his finger food, play dough or the rice table. I had at this time become good friends with the facilitator of the playgroup and I asked for her guidance. My son had turned two by this time and had finally started sleeping through the night as we had moved into a rental house when he was eighteen months old. It was an adjustment for our family but one I welcomed after living in a hotel for seven long months! The staff was incredible to us and thought of us like family. They made the long days of dark clouds and rain bearable.
I feel brave for having gone through that experience and yet I had this feeling that my son needed more interventions. With the help of my friend the children’s facilitator she referred me to a child development agency. Then came the next few months of evaluations and questionnaires regarding my son’s development. He was approaching the age of three and still was behind in his gross, fine motor skills, as well as speech delayed.
Those assessments led us to a developmental Pediatrician that diagnosed my son with Sensory Processing Disorder in particular Sensory Modulation Disorder. This is when the central nervous system is seeking out sensory input to deliver that message to the brain and the rest of the body. My son had no fear, he’d climb a six foot bookshelf and jump on to the couch below! He’d also empty every book out of that shelf and dump out toy boxes. I would be in tears trying to put my house back together daily.
In that time I did a lot of reading staying up late burning the midnight oil with learning everything I could about SPD.

My husband had gotten another job transfer out of the province and I was doing my best being a solo parent. The nights were long as my son had begun snoring which isn’t your normal behaviour of a toddler. We saw an ENT that diagnosed him with a sleep disorder but said he was unable to do anything about it.
It was a struggle for the next three months but I persevered found us a house, got us packed up and moved into another hotel while waiting to take possession of our new home. I hardly slept and luckily my son was still napping so I’d catch up on sleep with him.

My oldest son was also suffering with some anxiety and I had to keep reassuring him constantly that he would make friends and enjoy his new school. I got him involved in a summer camp and started moving and unpacking all our belongings.
The next few months I spent my every waking minute making our house a home. The school year started and with that brought some more anxiety in the form of my oldest son getting bullied. I had to deal with this issue for the next three months. The office administration got to know me well as I was always requesting a meeting.

Finally that worked out as I got some school counselling and his teacher to help out.
Meanwhile I was attempting to socialize my youngest son as his vocabulary was starting to increase. We met a sweet friend and we attended a play group. It was very busy, loud, and crowded and my son didn’t do well at all. Nap time was a Godsend as the environment left me feeling sensory overwhelmed as well. After that, we attended play dates with our new friend and her family. It was special to have picnics at the park and birthday party fun.
When my son turned four we started to think about preschool as he was almost fully potty trained. It had taken awhile but we worked all summer towards his accomplishment. We did all the assessments with a speech, physical, and occupational therapist who found out he was Globally Developmentally Delayed. Meaning he had a severe delay in one or more of his developmental skills.
We worked hard to obtain funding and now he attends a wonderful preschool and has funding for a therapy team. He just turned five and will be transitioning to Kindergraten in the fall. With knowing he has autism there’s been a push in the right direction to get him the funding and behavioural aid support he needs. My son has a lot of challenges in life but ones he’s always faced head on with his tenacity and strength. I see a future full of success, determination, and substantial support. He’s our family’s blessing and the sky’s limitless for him and what he will achieve.

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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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 I know what I’m fighting for, my peace of mind

I have been in a journey for the last three years. It’s been a long hard battle with my youngest child to discover what I always thought, he has a neurological disorder. I have known as a premature baby he would have developmental delays. He was speech delayed and that was something I started working on since his birth. I read stories, described my daily activities, and sang to him all the time. His first words were Mama, Dada, hi, bye, and Baba (for brother). 

I was happy he was able to say these small words at 18 months. I was using sign language with him at a 12 months, but he only used a few signs for food, sorry, thank you, and happy. When it came to pronunciation is where he struggled the most at 2 years old. So I worked with him turning b’s into d’s and emphasizing the ways words sounded. I went through the process of registering him for evaluation when he was 2.5 years old. My Dr. gave me some pamphlets, and it was my health nurse that let me know about a child development agency I could contact. 

So far my son has had two family doctors, a pediatrician, developmental pediatrician, an ENT, and a children’s sleep specialist. He has also worked with a child development councillor, occupational therapist, and speech and language therapist. Because the first pediatrician didn’t classify him as having ASD we weren’t offered any help. We were moving to a new province so I could access resources there. Here we are another year into our journey and I have him re-evaluated for autism. He tests low for that criteria, but higher for ADHD. 

Since he’s only four, children in Canada aren’t tested till they reach the age of six. I’ve filled out enough paperwork, blood tests, and questionnaires to fill a filing cabinet! Even though my son has been delayed in some skills he has reached them. His recent accomplishments have been becoming potty trained. We worked on this for a year establishing sensory awareness so he would know what his body needed to do. I jumped for joy when he was able to catch a balloon followed by a ball on his birthday.  He also started dressing himself and putting on his own shoes on the proper feet. 

If his pants end up on backwards as well as his underwear I still celebrate his accomplishments. After filling out new paperwork I feel that these huge accomplishments have been negated. Due to having a delay his fine motor and gross motor skills have been affected. This has led to a diagnosis of global development delay. To hear those words in the office hit my heart like an out of control freight train. Knocking me off balance in this carefully, constructed, world we’ve built to keep him calm and regulated with his sensory integration disorder. 

Now I’m given a list of OT’s (Occupational therapists) to contact to get a consult. I’ve been told he needs OT, PT, (physical therapy) and SLP (speech and language therapy) immediately. I have been his Mom OT, PT, and SLP for the last eighteen months. Now I have to step aside and let the professionals do their work. This is so hard giving up this control of the life we have. I knew my son couldn’t hold a pencil properly so I have him practice drawing letters and numbers in sugar, to get the feel of the movements. 

I also found out he can’t balance on either foot, jump with two feet together 20 inches. I didn’t see these as detriments just something that needed fine tuning. So I started doing yoga with him to help him work on his balance. Which is due to a weaker vestibular sense affecting his inner ear and brain. Instead of jumping two footed I had him skip instead. I wanted and needed him to feel proud of these developments instead of being told he was just delayed. We have been a strong team working, playing, and discovering new and exciting things. 

This new frontier that we’re embarking on is scary one. His thyroid levels (TSH)  are higher than normal so he has to be tested every three months in case the Free T4 (affecting development) are out of their expected range. It’s known as sub clinical hypothyroidism and a definition that basically means “don’t worry till both TSH and Free T4 are high.” Global Developmemtal Delay can be caused by many factors such as fetal alcohol spectrum disorder FASD (caused by a Mother drinking excessively during her pregnancy), a genetic defect known as Down’s Syndrome, Fragile X syndrome Frag X (which is an inherited cognitive impairment Disoder). It can also be caused by medical problems encountered with prematurity, and no known cause. 

I can rule out FASD, I had a healthy pregnancy I was just very sick throughout my first trimester. My son doesn’t have Down’s syndrome as I had no markers for it in my genetic testing. He was born one month premature after my one and only beloved Mama, died in my eighth month. My pediatrician thinks he may have Frag X and the only way we can determine that is with genetic testing. 

I have put that on hold for now since that’s not a decision I can make for him as a young child. Once that test is administered it follows a person for the rest of their life. It can affect him applying for life insurance. Once the blood test determines whether someone has Frag X or not, those results always have to disclosed. If my son is a candidate for this impairment he got it from me. Only a Mother can pass it along to the male, and a Father can pass it along to a female. I have felt enough guilt in my life due to his premature birth. I can’t make a heavy decision like this that will affect him for his lifetime! 

I’ve spent a few sleepless nights going over this again and again until my sleep deprived brain scream enough I can’t take it anymore! He is being tested for allergies to see if that’s the cause of his sleep disorder he was diagnosed with last year. After those pending results we will have to do a private sleep clinic. I can only imagine how stressful that will be with his sensory disorder. Being hooked up to machines to monitor his every move and watched all night while I’m by his side. I already get anxious and feel heart palpitations coming on just thinking about it. 

I don’t even know how to talk about this so its just easier to write about it. I don’t have many people in my life that understand all these conditions and disorders. And if I did I moved away from them, which leaves me floating adrift in a lonely sea of doubt and anxiety. I know what I’ve been fighting for all these months, it’s my peace of mind. It’s to know that my son will get the resources and services he needs to prepare him for preschool and beyond. This is a very precarious time as the end of the school year approaches for my oldest son. My husband and I are determined to give them an amazing summer holiday as we were moving last year. And really the last two weeks were fun when we took time off from unpacking. Now we’re settled in our new home and province, and we’re going to be tourists and go on an adventure of discovery and fabulous fun! 

Now I know I’ll also be interviewing OT’s, setting up funding applications, and preparing my son for preschool. As well as my oldest son for his new adventure into the next grade. I know what all the sleepless, stress filled, long nights of staring at the vast emptiness as my tears cloud my vision are for. It’s to see light at the end of the long, dark, windy, tunnel. And if I can’t see it then  I’m getting a shovel and digging underneath, until I see what I so desperately need to lift me up out of this pit I’ve stumbled into. 

This has been my Sunday confession with More Than Cheese and Beer please check out her confession, anonymous ones on her Facebook page, and all the other talent who link up. Thank you. 💝

 

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#1000 Speak Compassion-nurturing 

 At this moment in time I could use some nurturing. My heart has suffered from being judged, my body from pushing it to the limit of injury, my soul from putting myself last on the list of life’s priorities. It’s been my own doing, I put myself out there and recieved ridicule and embarrassment. I allowed it to hurt my heart and make me feel cheap, dirty, and ashamed. There is a thing about being too honest especially on social media.

I started a new workout routine as I’ve been living with chronic pain for the last five years. And slowly it’s grinding away at all the wonderful things I’ve accomplished over that time. The nurturing place where I housed my children and now my back is full of white hot pain if I do too much. Lifting my child who is showing all the signs of a sensory meltdown as he runs through a parking lot. Carrying him to bed after he’s so wound up from seeking sensory input all day he crashes in my arms on the couch.

Picking him up and cradling him like my little Joey and I’m his kangaroo Mama keeping him safe from a world that’s too loud, busy, bright, and at the same time beautiful in it’s simplicities and complexities. I exercise to keep myself fit, healthy, and fabulous. I started a new workout routine and matched the instructor for move for move. No matter how fast or extreme it would be in the long run. What the end result was an aggravated old back injury from a bulging disk, and not being able to walk properly for three days!!! What was I thinking I asked myself as I had to hobble around with a cane and parent from my couch?!

I wasn’t thinking about my age that’s for sure. I was thinking of who I was before when I was the fitness instructor with seventeen years experience. Who gave those intense workouts and also participated in them. It’s been a humbling experience as I recently started a fitness challenge and I’m on the sidelines cheering everybody on. I have an invitation to start a free one week bootcamp in my town. I look at each day mocking me and my lack of flexibility. How is it possible after ten years of teaching I could become so inflexible? Easy enough I allowed my mind to become that way being a right fighter, and my body became rigid and immobile.

I need to nurture that part of my myself that makes me feel whole again. I write, read, whine onto my digital paper and drink copious amounts of wine to dull my pain. Who knows of this push and pull existence that I put myself through time and  time again. It’s you my dear readers who have followed along with me on my journey through heartache, grief, self loathing, and sometimes redemption. I lay myself bare and venture out into the world when it seems to be less cold, hard, and judgemental. This is my life as a Mom with children with special needs.

You can’t see my son’s conditions but if you push them to the limit they’ll bleed through with their reactions to noise, over stimulus, and disapproving stares. One has a disorder called Sensory Avoidance. I refer to it as his needs are like a bucket of water and everyone puts in a cup throughout his day. When he’s home from school his sensory bucket is overflowing. and he needs to empty it out and self tegilate with calm and quiet time. I give him this time to decompress as I know it’s essential to his psyche and mental health!


My other son has the opposite disorder he is a seeker of sensory input and it’s referred to as Sensory Modulation. His condition I refer to as having an empty bucket that he fills with cups of water all day long with every interaction, noise, and stimulus. Each time his bucket is almost full he dumps it out and has to start all over again. So this is the push and pull of my son’s existence. One wants to avoid all contact until he’s regulated and able to fill up his bucket. The other is constantly dumping it out and finding new ways to fill it!

They both empty my patience bucket on a regular basis, and I need to fill it back up again with things that help. Like quiet time to myself, being able to read, write, soak in a bubble bath until  enveloped in the softeness and luxury. Closing my bedroom door each night and cuddling into my love my husband, my soft place to fall. He holds me and nurtures me and my hearts love bucket is full of self worth, respect, consciousness, and unconditional love. And I’m refreshed and restored and able to face another day. Whether it’s full of fighting, auditory hyper sensitives, food texture issues, sensory seeking, or sensory avoiding.

We all need to be loved, respected, accepted, loved, and nurtured. Please take that time to give your body, mind, and soul are crying out for. Don’t be like me who pushes and pulls into the core of my existence till my broken, weary, sleep deprived shell of a human body can’t take it anymore. Find those ties that bind you to the ones you love, absorb their love and strength, full that love bucket, and be more than, better than, stronger than the pain that threatens to grind you down. Love, nuture, take the steps to self care, and truly cherish that reflection that stares back at you from the mirror of your life.

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To the woman who judged me #mommitment 

To the Mother who judged me, I lay awake thinking of what you said. How you blurted out your casual comment not knowing it was like a serrated knife to my heart. Or maybe you did know that and didn’t care. It felt like you had an agenda the first time you laid eyes on me. We were on a busy commuter bus, going to the same destination; and I thought I’ll never see you again. But I asked you to back off and you didn’t. This is me wearing my heart on my sleeve and pouring out my pain in that moment. 

The Judgement Bus

How can you sit there and judge me? 

While people just stop and stare. 
I’m shocked by what you said to me. 
I didn’t ask you to share. 
You don’t know me or my child, or what’s his story. 
You just spouted off your ignorance and didn’t even say sorry. 
I was staring at the smugness on your face. 
I said he has autism and his meltdown I wanted to erase. 
I didn’t know what to say as my hot tears stung my eyes. 
I could see you watching my child with disgust, which was no surprise. 
I’ve seen people like you where I have to hold my anger inside. 
Buckle up son, it’s the judgment bus coming through. 
And it’s going to be a bumpy ride. 
I won’t let them see that one shining tear. 
As I could fill an ocean of denial.  Sadness lives here. 

As I look back and read this poem, tears are streaming down my face. I recently became a proud member of The Mommitment Movement, dedicated to putting an end to “Mom Wars.” Its mission is to promote love, acceptance, and kindness instead of judgment. 

I’m adopting the motto, ‘I won’t judge you as a Mom, so please don’t judge me.’ We all came into this world the same way, with a beautiful newborn baby – without an instruction manual. The experience I had on the bus made me realize how much I have to reinforce this positive message in my life. I immediately wanted to hurt her like she hurt me and my pride. My son wasn’t even bothered; just happy to have a seat, and to watch life out the window.  I won’t change my thinking, my thin skin, or the fact that I wear my heart on my sleeve. I will abide by this code in my backyard, while I tend to the flowers I’m growing. I’ll respect your right to tend to your flowers however you see fit. 

After the bus incident, I’m more committed to Mommitment than ever. I can’t change the world around me. I can’t make people accept my son and his special needs. But this is Autism Awareness month, and I can help change his world by spreading more awareness, education, and understanding. Having the force of the proud and powerful Mommitment movement along with a parenting support network behind me, I finally don’t feel so alone on this journey. 

To learn more about this game changing campaign, please read the post that started it all.   

And here you can sign the pledge and be part of Mommittment. ❤️

Next Life, NO Kids
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Writer’s Quotes Wednesday

I light up Blue

  

This has been my submission to https://silverthreading.com for Writer Quotes Wednesday. Please check out her gift of words and all the other talent who link up. Thank you. 💙

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Fridays Feats and Fails

It’s Friday one day closer to the weekend and wow what a week it’s been!!! I’m excited to share it with you. So let’s get to it shall we? I’m so happy and honoured to be co-hosting Friday’s Feats and Fails with the awesome Ash from http://www.morethancheeseandbeer. This is a new adventure for me so I feel giddy with excitement. 😃🎉💃

FEAT-Amazing Grace

My beautiful cousin brought her baby into the world and I haven’t stopped crying since! Amazing Grace was diagnosed in utero as having mosaic triploidy. According to Wikipedia.org research Triploid syndrome is an extremely rare chromosomal disorder. Individuals with triploid syndrome have three of every chromosome, i.e. a total of sixty-nine rather than the normal forty-six chromosomes. There are only sixty recorded cases across the world. Thanks to the research I found on http://www.mommiesofmiracles.com I’m understanding a lot more. These children are blessings, and although there genetically different abled, they are beautiful gifts to the world. 

A Mother’s Love 💗

Amazing Grace was brought into the world on Tues, March. 10 th at 6:04 am she had a healthy delivery and Mom and baby have been doing well. Grace had a defect with her heart diagnosed in utero and no one has known how long she would be earth side. After receiving a heart scan yesterday my cousin was happy to report this morning, that there are NO signs of the defect!!! God is creating miracles for my family daily as Amazing Grace has been defeating the odds against her since her conception. Just yesterday she opened up her eyes for the first time her Uncle held her. Oh and what a beautiful moment that was!  There has been an amazing photographer that has been capturing Grace’s journey with her Mom and Dad. All images are by Love by Krista Evans Photography and she and my cousin have allowed me to share them with you today. 💕

A Father’s Love ❤️

I read all the updates eagerly each moment that my cousin posts them. Today Grace will have a brain scan as she was also diagnosed with agenisus of corpus callosum. According to research from Wikipedia.org (ACC) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. It occurs when the corpus callosum, the band of white matter connecting the two hemispheres in the brain, fails to develop normally, typically during pregnancy. 

Amazing Grace is being tested and evaluated in preparation to going home! She’s  classified as a strong baby, despite the disorders and her early arrival of eight days before her due date. The amount of love and prayers that are surrounding Grace and her parents is incredible! Thanks to Krista at Love by Krista Evans Photography 12,000 people have seen my family’s pictures. To me that means that 12,000 people are joining in prayer power! You can view Krista’s amazing body of work here:

https://www.facebook.com/lovebykristaevansphotography


The love, pride, and powerful energy emanating from this family fills my heart to the brim. 💖

FAIL

I’ve been keeping as positive as I can considering how precious life really is. And my own son has to undergo genetic testing for Fragile X and ASD. According to Wikipedia.org Fragile X  is a genetic syndrome. Nearly half of all children with fragile X syndrome meet the criteria for a diagnosis of autism.[1] It is an inherited cause of intellectual disability especially among boys. It results in a spectrum of intellectual disabilities ranging from mild to severe as well as physical characteristics. I’ve had my moments when I’ve dissolved into tears, yelled, cursed, and locked myself away in my pity party of one.

My incredible family has shown me I can have those moments but I just can’t unpack and live there. So other than not cleaning since last weekend, not keeping up with folding my laundry as that relentless bitch is owning me. I’ve been enjoying the sunshine, adventuring with my kids, and counting my blessings. And really appreciating the miracles in life like Amazing Grace’s journey with her phenomenal parents. The strength they’ve shown has been remarkable. In my cousins words to prepare for a life half way through pregnancy, then a possible death, back to preparing for her baby’s life is an extraordinary blessing. I know God will continue to watch over and bless them as they are all miracles of the heart.  💞

Amazing Grace.💖

FEAT

My Captain’s hockey play off round ended for him last Saturday. It was a disappointing loss with some questionable referee calls that ended in a 2-1 loss. It was an exciting game, but I’ll be honest and say this part of being a hockey Mom really sucks. It was so hard to see those disappointed expressions on those sweet children’s faces. They played a great game though and they still have their practices, parents against the kids game, and windup party to look forward too. It was Father son time the next day as my husband took our Captain to work. They both looked so handsome as they dressed up in a shirt and tie. I haven’t seen my son dressed up since his first communion last year. It struck me how fast he’s growing up! I’m so proud of his accomplishments on and off the ice. ❤️

I have so much pride for my Captain and his team. 😃

We also had a major accomplishment as my little Mad dog and I attended the play group specifically for children with special needs. He loved it there as it was fun and manageable with a small group of kids. The most touching moment was when my son thanked me for his happy. I was in awe of him and his gift of understanding in the moment. After the group we attended the indoor playground and he did very well being around more children and some noise. We were both happy to nap when we got home. 😴

“Thank you for my happy Mommy.”

So here we are back to Friday and since our Netflix is M.I.A. due to Mad dog resetting all the information we’ll be watching movies. My wonderful husband picked up Night at the Museum for family movie night and Mocking Jay Part 1 for after they go to bed. Thank you for being here today and please check out everyone else’s post who links up today. 💕

That’s my Friday’s Feats and Fails how’s your week been?

This is going to be an amazing weekend of watching the currents and the classics. 😃🎉


It’s link up time! Don’t mind the HTML code I couldn’t convert it back to text just click on the link below that say inlinkz. 😉

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Open 

Trigger alert: If you’re suffering from any mental health issues pertaining to cutting or suicide. Proceed to read with caution. I discuss both in text openly. 

My life is an open book I’ve acted like I’ve had together but I really don’t. I’ve found out it takes a village to raise a child. And how lonely life can be when you don’t have a village. I’ve been open about not feeling like an adequate parent, good wife, or being a lousy friend. I have retreated into my world of words and writing, and have tried to make sense of the chaos before me. I’ve advocated for mine and my children’s mental health and have been told to hurry up and wait. Last week after an epic blow up between my oldest son and I, I put all my fears aside and phoned the mental office office. I was told to come down between the hours of 11 am to 3 pm and someone would have a meet and greet with me. 

This is how mental health is dealt with in my province. You’re set up to meet with someone who greets you and sees if you meet the criteria for obtaining services. So I went down there last Friday only to be told the Doctors aren’t seeing anymore walk ins today. That’s the worst lunch bag let down for the week. After talking my son into agreeing he does need help I leave empty handed. Today after battling with him to get up and go to school he decides not to go. I can’t deal with it after being up late myself with his brother having nightmares. I go back to bed, only to be woken up and blamed by my oldest for not going to school.

 I tell him just go eat and get dressed you’ll only be a little late. Then the fight begins that I failed him yet again, and he’s not walking into school late! I get a much anticipated call from my respite worker and I end up telling her everything that I didn’t get to tell her yesterday, with both of my children being home. My Captain (my oldest son, if you’re new to my blog) has been off for a week of school. This has been due to a teachers convention and after eight days of constant battling I NEED A BREAK. Yesterday I drive around in a new neighbourhood looking for a birthday party he was supposed to attend. I couldn’t find the location and my GPS was zero help.

 So I only had respite for a short amount of time as I had my youngest at home. I came home feeling defeated and tried to throw myself into busy ness of housekeeping so as to not start yet another arguement. There’s always something brewing on the horizon and then it came time to get ready for hockey practice. I asked my Captain to get his gear ready, while I quietly and quickly got his brother and I ready to go. We were set to leave when the comments started we’re going to be late, I wish Dad was here, I don’t want to go to hockey. I’ve been walking the thin parenting line between crazy and sane and I blew up and said get out and get your gear in the truck. He refused so I threw his bag on the lawn. Then I proceed to chase my youngest son down the block as he just wants to run away from all the noise. In the midst of my incessant parenting tantrum I lose my keys so I’m frantically looking for them.  

I find my back up set but it doesn’t allow me to lock my door with the key. Useless I know but key fobs are expensive to replace. So my crazy train is loaded up and we arrive at practice. Yes we’re five minutes late, and I just want to run away and hide somewhere. On the way home after practice I encounter a near accident as a racing truck passes five vehicles and is on coming into my lane!  I’ve got my music cranked and I’m singing Paradise by the Dashboard light. When the part of the song sung by the female lead Patti Russo comes on and says Stop right there, a voice inside my head screams the same. So I slow down and head towards the ditch just in time to see this truck fly past me and into the other lane. 

I’m literally shaking as I get home and start preparing dinner for my kids. I listen to them outside chatting while they gaze at the stars. Soon it’s bedtime and I settle in trying to process my day.  Thinking about everything crammed in my brain, it took me a long time to stop shaking and fall asleep last night. Hearing the alarm go off at 7 am after maybe four hours of sleep is like a jackhammer in my head. This morning when my son refused to go to school I said fine you don’t go to school then you go talk to a therapist. I arrive at the office only to be told they are full with walk ins. I don’t take this well at all, I complain you told me this last week and now you just opened up and your full? I have and will always be the squeaky wheel who gets the grease so I continue to triade. The receptionist sees I’m not leaving so she phones the office down the hallway to let them know I’m there.  

I walk over there with my shrieking sensory child who just wants to go home and explain I want to see someone. I’m once again told I can’t and to come back tomorrow. Well the quickest way to ignite the Irish fire inside of me is to tell me I can’t do something. This is unacceptable for urgent care should I be a cutter or slit my wrists would that get me seen faster? That line of questioning and behaviour got me seen faster than taking no for an answer. I have a therapist come to meet me who says I have a few minutes of her time. So I proceed to get my kids in the office while they play with Lego. So I tell her the quickest way to get help is to act crazy. She appears taken back at my honesty, so I spew on and say I’m an open book what do you want to know? I introduce her to my kids and proceed to tell her of the life we’re living.

 I’m told I’ve come to the right place, I’m very well versed, and educated. In another time and place had I known if I’d be walking this path to mental health, I would’ve studied to be an neurologist. Anything to do with the brain fascinates me, neurological disorders, psychiatric illness, all the labels and letters associated with mental illness.  I research about them all and I just want to know more. Being educated, articulate, well versed, helps me as an advocate for mine and my children’s mental health helps everyone. Now I walk a different journey to allowing this help to transform my family. From chaos to calm, from anger to happiness, from power struggles to peace. I’ve found the quickest way to get help is to stop acting like I have it altogether. So why do I tell you all this today? Well it’s simple I live my life like a open book, I can’t hide away from it anymore welcome to my book of life. Today I start to write a new chapter of hope, help, and resolution. I really think my guardian angel drinks if I was her I would too. Cheers to you Mom and thank you for saving our lives. ❤️

This has been my submission to Ash’s Sunday Confessions on http://www.morethancheeseandbeer.com. Please check out her story, the anonymous confessions, and all the other talent who link up. Thank you for following along on my journey. 💓

Today I’m linking up with http://silverliningmama.com for her conquer challenge for the month of February. 

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Most and Least

This has been the most stressful week I’ve gone through since I got the call that my Dad was in hospice. I believe the feelings that are swirling around in my body and brain are the same. This week I had to sit there while the Paediatrician said “I’m going to say some things that are difficult to hear.” So I replied “just say it Doc I’ve lived through a lot.” So she said I want your children genetically tested and evaluated for ASD.

I didn’t know what to say except I agreed and thanked her for being honest with me. Inside I felt like she had just ripped the bandaid off my broken heart. And it was oozing out the pain I was keeping in there awaiting healing. I walked out of her office feeling the most vulnerable I had ever felt in my life. My kids are my world, and when I first found out that I was expecting each of them I prayed for a healthy pregnancy. I never wanted to see them in pain, suffering or feeling powerless.

So this is the least of their worries as I just allow them to just be kids. They don’t know of the stress, the sleepless nights, the times I’ve spent crying. They know that they get frustrated easy, nightmares awaken them, and change is difficult to comprehend. With my oldest I tell him all our brains are wired differently. He can’t always help what comes out of his mouth, but he should say kind things.

He sometimes asks me why he can’t let go of a thought bothering him, or why he needs his homework to be perfect. The only answer I have is God made us all unique and different. There’s things that really bother me too. But I concentrate on the things that I can deal with. And let go of the things I can’t and let God take care of them. I will admit though this is the most I’ve had to absorb in one day in one week. So I’m praying for strength and acceptance so I can infuse that in my sons.

So where does this leave me? I will be applying for funding, and getting the most help I need for my children, as well as myself. I’ve joined a support group online and I look forward to meeting these other Moms. I’ve also been attending my support groups locally and it’s so gratifying to meet other parents that are walking the same path as me. After the paper work’s completed, and the appointments are made, then I’ll see where we’re at with getting help.

I’ve never been a fan of labels, but in this case it will be what’s needed in order to move forward with a diagnosis with funding. These labels will not define my children or change who they are. They will not change me or my husband either. They will make us the most devoted parents with advocating for them. They will still be happy, healthy, fun loving kids with a few more letters of the alphabet applied. And most of all they’re our gifts from God that were bestowed on us.

I wouldn’t change any moment of their lives or mine. We get the hand that’s dealt to us in life. We can let it define us or let us rise to the occasion. I prefer to feel my pain for a moment, embrace it, and keep moving forward. I owe it to my family to do so, and it’s the least I can do after they blessed me when they made me their Mom. 💖

This has been my submission to
http://lindaghill.com/2015/01/23/the-friday-reminder-and-prompt-for-socs-january-2415/ for Saturday Stream of Consciousness and the prompt was most/least. Using one or both words.

Please check out her gifted writing and all the other talent that links up. Thank you always dear readers, for your love and support. 😊

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