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. ❤️

Living in a sensory overloaded world 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


  

32 Comments »

#Mondaymusings-Lets talk about mental health on #Bellletstalkday

 
I have a story to share I always have. I have a big heart and a big vocabulary and I’m always up for a honest, open discussion. Yet the one thing that always silenced me was my depression. To speak of it meant a horrible feeling of shame that washed over me. I have struggled with the stigma of it since I was very young. I was four years old when my parents separated and with that brought an immense sadness. 

I had no control of it but I was glad to see the fighting stop in my daily life. There were still tears, prayers, and long heart to heart talks but the hurtful words thrown about so carelessly were gone. My Dad took on another life and family and my Mom was forced to make a life as a single parent to two little girls who needed her. She struggled with mental health too, sleeping at odd hours of the day, angry outbursts, tear filled days and nights as her heart was broken over her failed marriage. 

I saw it all, heard the stories, and did my best to comfort her. Being empathic I could feel every emotion and it was like a double edge sword living with this pain. I was so young and impressionable and yet I was growing wise to the ways of the world. I grew up like any other typical kid living in this  existence as I fought with the sadness and anger that would overtake my heart. The world was too loud, confusing, chaotic, and busy. I didn’t know how to cope so I turned to prayer, songs, and my faithful books. 

I grew into a sullen teenager and battled with anyone who would talk to me. My poor Mom didn’t know what to do and so we attended family therapy. I soon started having nightmares as triggers from my childhood came back to haunt me. I would go days on end not sleeping which means my Mom did do. I was finally diagnosed with clinical Depression and Insomnia 

I refused medication as I had such a fear of being drugged into what I call the “Ritalin generation.” It seemed like any child who couldn’t sit still, thought outside the box, and expressed a volatile opinion was put on the token drug of choice. I wasn’t going to be a statistic so I chose to take a more natural route. 

My Mom supported me with this as I changed my nutrition plan, got more exercise, and took Valerian and other herbs for my lack of sleeping pattern. It was a dark and confusing time in my life and I coped with it the best I could. I soon matured into an adult and had years of journals that commemorates that confusing chaotic time in my life. As I grew older graduated and attended college my mental health issues came back full force. The stress of deadlines, securing a student loan to attend school, and maintain a relationship took it’s toll. At the age of twenty I was diagnosed with Generalized Anxiety Disorder.

I also experienced a lot of death in my life losing both my Grandparents, parents, and my step sister all before I was the age of forty. I suffered with Post Partum Depression which I had with both of my babies and it was dark, devastating tunnel of grief and despair. What I hadn’t know that it was being overshadowed by Sensory Processing Disorder. I would come to know that when I took the journey with my children to a diagnosis.  Who both have two types of SPD, (also known formerly as Sensory Integration and Sensory Dysfunction Disorder) Sensory Defensive Disorder which means avoiding all sensory input to the central nervous system and  Sensory Modulation Disorder which is the opposite, it’s the seeking out of all sensory input to the central nervous system. 

 

Clara Hughes

 
I’ve learned a lot as a Mom to children with complex needs and I’m now referred to as a walking medical dictionary by my therapist. I’ve come to know from my experience that being a special needs parent is not for the faint at heart. We’re all struggling in our ways with parenting, making our marriages a priority, and trying to carve out some me time. Some of us struggle, swear, drink, and eat too much. I believe others do too they just hide it better. I still have another leg of my journey to take with my children as more letters of the alphabet are discovered with each diagnostic test and assessment. Since I’ve introduced therapy with a psychologist, a psychiatrist, occupational, physical therapists,  and speech and language pathologist their future is looking brighter with early intervention. 

 

Clara Hughes speaking candidly about her mental health

 
I advocate strongly on their behalf and my own and I share this glimpse into our lives for #Bellletstalkday. This is a mental health initiative in my country Canada and for every talk, text, tweet, and share Bell will donate five cents to Canadian Mental Health. Last year the campaign raised over $500,000 and I had the fortunate experience of meeting one of the spokespersons former two time Olympian Clara Hughes. 

Please share, talk, text, and tweet the hashtag #Bellletstalkday to erase the stigma of mental health and bring it into the spotlight than having it shrouded in darkness and fear. One random act of kindness can do so much to help others like one ripple across the water that can create a wave of understanding. 

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. Today’s co-hosts are Everyday Gyaan and Living My Imperfect Life

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


26 Comments »

Monday Musings-Christmas in my comfort zone

I’ve always been a traveller during the holidays. Ever since I was four years old and my Mom would have my sister and I for Christmas and my Dad would have us for Boxing Day. This tradition continued for many years until my Dad passed it over to my middle sister and her family. We’re of Ukrainian descent on my Dad’s side so it would be a day consisting of perogie making and eating contests. This was our way of celebrating the Ukrainian Christmas that falls in January. 

My oldest brother always won the record of most perogies eaten at one sitting with fifty-two and our Dad a runner up with forty-nine. I won for the women one year with fourteen eaten and many, many, created in my family’s kitchen. Now that I’m married and have a family of my own I have my own traditions. We do Christmas baking and advent calendars with my kids. I also started the book advent where a new book is unwrapped and read each day up till Christmas. My son’s each get to open a present on Christmas Eve which consists of pyjamas or slippers. This year they each get a family movie night box complete with hot chocolate, DVD, popcorn, and pj’s. 

I’m excited about this new way of celebrating Christmas with my children! I love to see their faces lit up with the joy of decorating the Christmas tree. As well as their amazement when we see how many decorations we piled on that seven foot beauty. We’ve always been the members of our family who lived furthest away but were expected to travel. And so we did just as couple for many years and later as a family of four. My Grandparents and parents were still alive during these Christmases and seeing them was what made my holiday brighter. 

  
After they had passed away in 1991, 1999, 2009, and 2011 our trips back home ceased to happen. It was just too heartbreaking to go back to the same place and see that empty spot at the kitchen table. The last Christmas I had with my Dad my oldest son was two. I remember how special it was to see them together soaking up every precios moment they could together. It was bittersweet as I knew this would be the last time they’d share aholiday together. 

When my Mom had passed I was eight months pregnant with my second son. She had known he was planned for, created, and growing in my belly but never got to meet him or hold him. That last Christmas she spent most of it sleeping as her medication for travel made her very tired. I wasn’t able to travel as I was being watched for complications. The next time I saw her was at her viewing in the church and then her funeral. That wasn’t something I’ve been able to forgive myself for but I know it’s nothing I had control of. In time I will heal and let that go. For now it’s a double edged jagged knife in my heart. That makes it hard to breathe sometimes….

Now my children are growing up so quickly I’d like to freeze time and let them stay little and innocent awhile longer. We travelled to family last year and it took a lot out of us as a whole. It’s not easy to have a busy, loud, bustling, holiday season with sensitive children. Being out of routine, away from their calming and emotionally regulating routine and not sleeping well can lead to sensory overloaded meltdowns. While it’s common for this time of year it’s not always accepted behaviour at one’s home, family relative or not. 

I spent a lot of time outside playing in the snow with my kids. Snowball fights, snowman building, and powder diving kept them happy, calm, and me from losing my ever loving mind! My youngest son with his Sensory Processing Disorder has a lot of food texture issues so I knew he wouldn’t be having the turkey with all the trimmings. No matter how delicious it appeared to be for others he was happy with his peanut butter sandwich and milk. I did not pressure or chastise him for this preference, as this is not how to help him adapt and want to try new foods or food groups. 

Food is not a battle I choose to have with my son. I pick them carefully because at this time of year everything in his environment is a hair trigger to a blow up waiting to happen.  His older brother who’s a Sensory avoider of excess sensory input will cover his ears, beg for quiet time, and get overloaded by the noise and commotion. Then my youngest who’s a seeker of this sensory input who will run, spin, stim, and then fall apart with exhaustion or overload. This is what I refer to as Armageddon implosion, internally they’re struggling so much, and externally they can’t regulate themselves without my help. 

 In 5-4-3-2-1 BOOM 💥 massive meltdown city is where we’re living and it’s not for the weak hearted. This leads to my husband and I watching for the triggers and doing our best to keep them calm or remove them from the situation entirely. That is how we spent last Christmas Eve where I was told my one son needed valium, and my reply was “no he could use some understanding, I’ll take the Valium.” To be honest my wine glass was never empty during that holiday.  We all got to do what we got to do to get through those hellish hours, without judgement. 

Last year was a long, painful, exciting, and exhausting holiday. I got to see family on my husband’s side and mine. My kids were eager to see their aunts and uncles and open up and play with their toys. I was able to sit back and relax and enjoy seeing them happy and regulated around my side of the family. While repeating my mantra there’s no place like home. Because really there isn’t, it’s so rewarding to be able to hang out in your pj’s all day eating popcorn and watching Netflix. I went against my better judgement and did what was expected of me and my kids reacted accordingly. I accept that now, although it was a bitter pill to swallow at the time. 

This year I’m doing what’s best for them and staying home. We just moved and bought our house last year and now after eighteen months we get to have our first Christmas in it! I’m so excited to relax in my pj’s, cook a big turkey with all the trimmings, munch on my holiday baking, and enjoy Christmas movies with my family. I will light a candle for my loved ones who are no longer with us. Yet are now our Christmas angels from heaven sending us love and comfort when we need it the most. I will provide strength to my family and relatives who are walking through the pain of losing their family member as well, and trying to get through the holidays while grieving. 

After all the eating, sharing, and cuddling are done then we’ll roll out of the house after indulging in our holiday feast and go tobogganing and enjoy a bonfire, hot chocolate, and laughter with our friends. I couldn’t be happier about starting to revive this tradition and add some new ones to our family. This year we are travel free, except to the toboggan hill and back. I couldn’t be more happier and excited about revelling in this freedom and joy!  Christmas is where the heart is, and also where my comfort zone resides. 

It’s time for #Mondaymusings and all you have to do is this list of things. 
Write a post sharing your thoughts with us – happy, sad, philosophical, ‘silly’ even. Make it as personal as possible.
Use the hashtag #MondayMusings and link to this post.
Add your link to the linky which you will find either here and on the post of a co-host.
Use our #MondayMusings badge to help other bloggers join in too.

Today’s co-hosts are Happiness and FoodBlogs by EshaEveryday Gyaan thank you for having me in the linkup today. 😃

17 Comments »

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!

http

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

29 Comments »

 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. 💝

 

69 Comments »

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. 

16 Comments »

This could be heaven, or this could be hell

The floor feels cool on my skin as I lay here with my cheek pressed into it. I’m lying here trying to ground myself, regulate my senses, and to stop the earth from spinning. I go to rise but I can’t move, my tear stained face is stuck to the linoleum so I’ll lay here longer. I’m trying to process everything that was said, all the questions I was asked, how many times I tried to get my son to stop opening the door to escape.

I had a meeting with a new pediatrician and she was assessing my sons for developmental disorders. First my youngest didn’t even want to stay in the office. He was scared and kept running away. He wasn’t interested in the toys or snacks I brought he just wanted to leave. As the meeting went on he felt my energy becoming more and more tense because he was at the point where he was stimming.

So he rolls on the floor seeking sensory input in this tiny office. So I gather him up and bounce him on my knees and encourage to play with some toys. This is the first Ped clinic I’ve seen without toys. The Dr brings in a magnetic wall picture and he plays with that for awhile. With his sensory condition he doesn’t sit still at all and its worst in new situations. He grows bored of the picture and tries to climb up onto the counter. I proceed to pick him up and rock as I would at home. Giving him deep pressure hugs the whole time and whispering I love you you’re safe in his ear over and over again.

My heart is aching as I feel his heart beat like a rapid fire drum solo. My hands are clenched around his back and I’m not letting him go till he’s ready. Then it’s time for the Dr to give him an exam and he won’t let her touch him. So we settle for him sitting on the bed and more he relaxes with a massage and input that his senses are craving. Then my husband arrives and we tag team out, and he takes the littlest home and I take the eldest in for his appointment.

I finish up with the Dr with my youngest information and we start my oldest sons questionnaire. As ten minutes ticks by , I can sense and see his boredom. So I hand him my phone to keep him occupied. He’s slouching and then hunched over building his mine craft world as I’m fully into the questions. Then my battery dies and he’s back to frustration and a loud audible sigh escaped his lips. Well that’s enough for the Dr to say something about his disrespect not being appreciated.

I’m mortified I wonder who is this child and what have you done with mine? My Captain who’s polite, respectful to his elders and obeys authority. Well not today he’s too tired, bored, and frustrated as he has to endure hearing me talking about him. Which always makes me uncomfortable, but if I don’t he won’t get the help he needs. So she starts asking him questions, as he plays with the fidget in his hands keeping him calm and regulated.

He talks about his nightmares, anxiety about new friends turning into enemies, Pokemon cards, and being bullied in his new school. My heart grows heavier with each admission of his truth. I have to hold myself together, as I feel I could crumble like powdery snow on a warm winter day. We reach the end of our appointment and make another for the physical exam. I receive information and paperwork and drive us home. Inside the truck I firmly but gently ask him how he could correct his behavior for his next visit.

He tells me he’s sad all the time, and always does the wrong thing and it’s all his fault. Then the tears start to flow, both his and mine. As he pours out his heart about how he can’t get his brain to stop and then he says the wrong thing. I tell him I understand and I love him, followed by his admonishment that I don’t get it, and no I don’t! I don’t fight or power struggle I just let my silent tears fall down my face. We arrive home in time to quickly get him ready for hockey practice.

I’m grabbing his gear and getting him dressed and he’s yelling and saying he’s tired, he doesn’t want to go, leave me alone etc. If his team didn’t need him for an upcoming tournament I would’ve let him stay home. But I knew he’d feel better after moving, occupational therapy induced exercise, and being with his team mates. After he leaves with his Dad, I set my little one up with a movie. I proceed to close my door and sit on my floor and cry.

So this brings me back to where I am lying, while my tears fall into a puddle on the floor. I’m trying to process it all as the Dr said my sons require further testing for what she suspects is ASD, OCD, ODD, and ADHD. The letters start to swim around in my head as I struggle to lift myself off of the sticky linoleum. I know whatever the outcome is my sons are more than a label put on them. Letters+a label = equals funding. So I’m able to put them into cutting edge programs like Brain Gym, workshops about art therapy, and neurology. And to also cover travel expenses back and forth to appointments.

So that’s a good thing, it’s just hearing the words and applying them to my precious kids doesn’t compute with me. I think back to when my youngest Mad dog (I’m using nicknames I assure you to protect their identities) was called a mystery when I had him assessed last year. He was given the label of Sensory Modulation Disorder (seeker of sensory input). Further testing could be required if I had wished. So here we are today finding out something I’ve known all along and just got confirmation.

I need something desperately to get back the respring in my step. To make me hit the ground running, and onto my next advocating adventure. Something to make me smile, laugh, and feel happy that I’m breathing the God given air into my lungs. But today my super Mom cape is in the dryer and I’m feeling weak and vulnerable. I need to grieve for the regular life I envisioned for my sons.

And as I dry my tears, I know I have my bunker punk family rallying and supporting me. As all those awesome autism and neurotypical parents have given me hope, information, guidance, understanding, and most of all their love. For this support will lead me to taking it one day at a time. While I retrace my thoughts back to my happy place, and get the spring back into my step. 💖

This has been my take on the daily prompt Re-springing your step

Re-springing Your Step

as part of my Blogging 101 assignment. Thank you for being here and sharing my journey. 💗

2015/01/img_3286-1.jpg

*Image used with permission from http://www.simpleeserene.com. Photo found on SubbotinaAnna/shutterstock.com

12 Comments »

Living, Loving, and Surviving

There’s a story I’ve never told, well I’ve touched on it in previous blogs but I’ve never told the whole truth of it. I read a blog last night that hit me with glaring, beautiful, inspiration, and acceptance. This blog at http://heysweetlittlething.wordpress.com reached into my heart and held it in the palm of her hand. She wrote a beautiful, brave,poignant, story about her survival with Post Partum Depression (PPD).

It was liked she walked inside my head went into a filing cabinet and pulled out my memories. I had a beautiful pregnancy with my first child. I ate healthy, exercised, rested, worked retail, taught yoga, and rested some more. Everything was on schedule and I was due on Halloween. What you don’t know about me is I’m short, like 5″1 and by the time I got into my eighth month I was all baby. My Dr asked me how I was feeling and how I was eating. I was starting to slow down walk less, and waddle more. I could only eat small portions because there was just no room. I felt like a whale even though I was told I looked six months along then full term. This should’ve been my cue to my first guilt trip entering parenthood.

2015/01/img_3237-0.jpg

Stock Photo found on Pic Collage

So there I was ready to pop and my baby came into the world two days later. He was a very healthy 7 lbs, 10 oz baby boy and I fell in love the moment I laid eyes on him. He was so long, 21 inches, lean and had a purple cone head. Oh wow he was beautiful to me, as I gazed into his eyes and held him in my loving embrace. He was delivered after eleven hours of labour via emergency Caesarean section. He was only in the NICU for a short amount of time until my IV came out the next day. He had a healthy cry and was very resistant to being swaddled, and had to have his hands and feet sticking out. I called him my baby burrito and little jack rabbit, because he had the biggest feet I’d ever seen on a baby. My dear husband and I took him home and became parents, even though we didn’t have a clue what we were doing. He didn’t sleep much and seemed to be clustered feeding all the time!

My Dr noticed at my six week post partum checkup I was struggling and said I could supplement him. I persevered as I wanted to breastfeed, so I survived on very little sleep, and whatever the nutrition had was gone in one feeding. I couldn’t put my baby down for ten minutes without him shrieking like he was dying. I knew of course he wasn’t, so I took to wearing him in my baby Bjorn carrier so I could get laundry and dishes done. He loved it with being so close to my heart, as I did. My husband had gone back to work after two weeks so I had started a routine to be that stay at home Mom. I started to notice things like how emotional I was and every cry would set me off into panic mode. I knew hormones played a huge role but something was off…

2015/01/img_3238.jpg

I remember walking the floor up and down my hallway and around the upstairs and down again trying to get my son to stop crying. I loved him so much and he’d screw up his face and cry until he turned purple. I felt like a huge failure and my heart was breaking with each crying jag. And my sanity was shattering as I was surviving on vapors of sleep. I didn’t know what else to do so I did baby yoga to relief his gas, gave him medicine and rocked him till my body was numb and my ass was square. I then began to lock the doors and check the windows one by one and I was terrified someone was going to break in and kidnap my precious son.

At first I thought this was odd behavior but I rationalized and thought I was sleep deprived and that could make anyone connect with their inner psycho! Then I became possessive and hovered if anyone else held him and I just chalked it up to being a first time Mom. And that could make anyone protective of their first born. Then the day came when my son was three months old and my body was aching from one to many nights in the rocking chair. So I decided to take a bubble bath, I pulled back the curtain and saw this disgusting soap scum bath tub ring and I just lost it! I put my baby in his swing and scrubbed the ring and cried and scrubbed until my bath tub shone, and my hands were raw. I stepped into the tub letting the hot warm envelop and cleanse me from my sins. I loved my baby so much but I couldn’t take anymore sleepless nights. I laid in the tub bawling as my son watched me and rocked back and forth.

Later that evening I was doing my nightly shuffle around the house so my husband could be rested for work. Feed my baby, burp him, change him and try to put him to sleep. He would cry the minute I laid him down and the routine would start all over again. He would eat until I was completely drained, he was like a vampire and could never be full for more than forty-five minutes to an hour. I remember walking past the stairs and thinking if I just fell down them then I wouldn’t have to go through this torture! I never wanted to hurt my baby EVER, I just wanted all the insanity to stop and to finally rest.

I feel such shame and self loathing as I re-read that last sentence. It’s not something I’ve ever forgiven myself for and its been eight years! The next morning I was up when my husband went to work. I told him how I felt and what I was thinking last night. I told him I put our baby to bed in his crib and laid on the floor and cried until I was just an empty shell of a Mom. So my husband called my Uncle and he came over to stay with me so I could get some rest. I called my Dr that day but wasn’t able to get an appointment till the following week so I slept off and on all day, feeding my baby, changing him, till my husband came home. God bless my uncle for being there for me, he saved me that day. As I just wanted to walk out the door and walk away.

The next day my friend and her son’s came over and she took one look at me and said go to bed. And they looked after my baby and brought him to me to feed. She decided to call my husband and tell him I needed a night out and she was concerned about me. I told her how I felt and I couldn’t understand this craziness inside my head. So my husband came home from work, and I was showered and dressed up and ready for a night out. I felt like their was an ice pick plunging into my heart to leave my sweet boy. It had been three months and I never left the house without him. I’m the end I knew it was the best thing for both of us. As I pumped a lot that day, and I knew my friend was an amazing Mom, and my son was in the best of care.

We had a wonderful date night and I felt so relaxed and refreshed. Later that night my husband got up to the what he dubbed the “hockey glide walk” rock, rock, glide, glide, walk around the house. I fed the baby put him back to bed and we all fell asleep! It was miraculous moment in time, later that night I woke up in a panic because I thought my son was in our bed and I was going to suffocate him! I looked at my blankets and I could’ve sworn he was really there and I was going to hurt him. So I sprang out of bed crying turning on lights and looking for him. My husband woke up startled and went to check on our baby and there he was safe and sound, sleeping in his crib.

I called my best friend the next day that lived far away and she said I needed to get out of the house and be around people. She assured me it would be good for me and the baby. I could detect a hint of worry in her voice so I agreed. I went to health unit and there was a few Moms there I had been getting to know. The topic from the health nurse Erin was Postpartum and Beyond. After listening to the discussion and sharing a little of my experience I finally learned what was wrong with me. That day I swear I would’ve kissed Erin, as she saved my life. I had felt horrible for so long then I realized it was my brain chemistry and hormones wrecking havoc with me. After that I went to the library and took any and all books out pertaining to Post Partum Depression. I shared what I was learning with my husband and he could see I had purpose and drive again. Other than being the best Mom I could be for my son. Who I love so much my heart aches with that longing.

My son was growing well and I would lay there on my bed and stare up at the light and watch the fan go round and round. Those were the best times as he was quiet, content, and happy. I had test weighed him at the clinic and then fed him, and he was taking in two to three ounces so the health nurses weren’t concerned. I had kept a food journal since he was in the hospital. Keeping track of how much he ate, what his diapers were, and how long he fed. I had three journals and scraps of papers everywhere so I didn’t lose track. I was able to record it all and take it into my Dr. She said I was very thorough, loving, Mother and I was suffering from PPD. So she gave me the choice to accept medication, nutrition, and therapy. I chose nutrition and therapy and I started attending a support group close by my house.

I met up with the wonderful facilitator and my new friend A from Baby Talk at the health unit was there as well. We were given a manual to read and follow with homework sections. It was about putting ourselves first with rest, proper nutrition, hydration, and socialization. A and I began to bond our babies never slept, ate all the time, and we were walking Mombie’s before The Walking Dead was created as a television series. We spent a lot of time together and she was the one I prayed to God for to help me through my crisis, and gain some understanding. Every since her baby girl reached back and grabbed my son’s giant feet while we were feeding our babies, we were destined to meet.

She is my sister from another mister and we’ve seen each other through another child in our family’s and deaths in our family tree. She has been my rock through thick and thin and her and her family are my own. Even though we live far apart we’re never to far away with social media or a phone call. Our children still have a bond even though they go months without seeing one another. When they are together it’s like they never were apart. Much the same as for us Moms. We walked a very dark path together and have found the light and survived PPD. A. taught me that I’m human being, a wonderful Mom, a loving wife, and a survivor. I admire her courage, bravery, honesty, and the fact that when she wants to give up she admits it, then jumps right into the ring of life again. The journey we take with our children now is a neurological one and we stand by each other sides brave and true.

I owe my survival of Post Partum depression to her friendship, my husband’s unwavering love and support, and the help of my network of kindness from far away. I will agree with Hey Sweet Little Things blog that PPD and any mental health issue are taboo subjects by many in society. They need to be talked about and shared without shame or ridicule. My beloved Mama always said when times were tough life was always better with red lipstick, rouge, and dark sunglasses. And my sweet Gram said that if you had love, laughter, and a cup of tea you could get through anything. I’ve lived my life on these these very wise philosophies. So each day I live, learn, and forgive myself one day at a time.

This story has been written for my Blogging 101 assignment. Getting to know your neighbours by reading their blog and commenting. After commenting write about why it inspired you. Thank you for reading today, and please check out http://heysweetlittlething.wordpress.com. She has a wonderful blog and I’m so happy I found it to start my healing journey. 💓

2015/01/img_0381.jpg

This beautiful art used with permission from Arna Baartz http://www.artofkundalini.com

6 Comments »