Jsack's Mom's Blog

Welcome to my blog where I share my special needs parenting journey with my heart, truth, and love, one story at a time. ❤️

The Climb

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 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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