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. ❤️

Miss 

What did I miss today with my head in the clouds or my nose in a book? Sometimes life travels at the speed of light and I have to slow things down and appreciate those moments that might pass me by. 

It feels wonderful to unplug and feel the smooth pages of my next adventure to get lost in. I can go to any coffee shop, restaurant, or theatre and find people with faces in their phone scenery. When I look up at the sky and see the endless possibilities as the sun sets to signal the end of a day. 
Or the beauty of a sunrise as I’m traveling down the road to my next destination. Feeling that sun kiss my face and bathe in it’s stunning glow is a gift from heaven. I can read, write, and wax poetic about this feeling yet to experience it puts all my efforts to shame. I will miss experiencing my children’s giggles as they entertain each other with their antics on a long road trip when we’re awake before the sun. 

I have to look up and see the tapestry of my life that I’ve woven carefully with each golden thread. Friends that smile and wish you all the best and reach out to me and I feel that happiness. What will I miss if I give into my fears and let the anxiety overwhelm me into tears. I would miss that special moments between my love and I those conversations that help me when I want to cry. 

Life is too short to keep my head down and try to escape. When I look up I can see smiles instead of judgement. It’s easy to get lost and think it’s all in my head. When I get too introspective and have nothing but dread. 

This stream of conscious thought has turned into something more. Free running thoughts untangling themselves from the jumble in my mind to turn into poetry or prose. It all feels the same as when the feeling takes over and I’m held captive with how healing my words have become.

 These mindful moments have taught me to look up instead of down, look within instead around. Let love heal you, when you’d rather run and hide. You’ll never know what you’ll miss if you give into foolish pride. 

This Saturday stream of conscious thought is from the lovely Linda G Hill. Today’s word prompt is miss and this is my version as I write on a family road trip. Thanks for journeying with me today as I clear out the cobwebs of my mind. 

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Sometimes I feel like I’m losing my mind

It’s confession time I have been marking the days off on my calendar with a big red X. Three guesses on why I’m doing that? Yes you guessed right if you’re Canadian, it’s back to school time. It’s been a long fun summer but it’s time for pencils, books, and learning the fine art of listening again. 

My oldest son is very excited about this school year and having a new teacher. To ease his anxiety filled mind I requested a meet and greet as soon as school was out. It was wonderful as his teacher is new to the school and that made him feel better knowing that. This year my son is not the new kid on the block and that’s a comforting thought. 

As the bullying he had to endure last year made for a difficult start. I spent so much in the vice principal’s office you would think I was staff! Now this month of August has left us with the last few dog days of summer before school’s in session. I wanted to make this an amazing summer for my kids because last year we were moving. 

I have things up my sleeve planned to surprise them. Yet I have to do this strategically as my oldest doesn’t like surprises and will ask 52 questions before we leave the house. My youngest loves the act of a surprise initially, but with his sensory processing disorder this makes transitions very difficult for him. I load up the kids and my truck and I tell them we’re going on an adventure. Sometimes that’s enough to cause them excitement or for me to be incessantly asked are we there yet? So it ends up working either way the stress of keeping a surprise, organizing my family to leave the house, is either a positive experience or negative one.

 I always prefer it to be the former than the latter, and if it doesn’t work out I at least gave it a try. Sometimes all this thinking wears me out, and I feel like I’m losing my mind! Do you know when you have a dream and you don’t want to wake up because it’s so wonderful than the reality you’re living? Sometimes I have those moments, and other times I feel like I had a dream I didn’t plan on dreaming.

 I don’t know if that makes sense when you’re reading it, but it makes sense to me as my stream of conscious thought keeps unravelling one layer of yarn at a time….

This is my submission to Stream of Conscious Thought I’ve had a brief hiatus from participating so I’m happy to be back to where the thoughts flow and the talent oozes from this creative place. Please check out this haven, and see if you can guess today’s prompt. 😉

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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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Gamble

I’ve been living the life of a gambler. I’ve been running on empty for a long time thinking that I can continue this way. I’ve been going on whiffs of exhaustion and sleep deprivation. Reacting strongly with my emotions and easy trigger finger of blame. I have spent more time looking at a bottom of a wine bottle with only tears and rambling writings to show for it. I have spent nights in overwhelming valley and vacationed at heartbreak hotel. I’ve given my power away only to feel like a shell of my former self. 

I have decided enough is enough since my crazy train has run off the rails. I’m taking a gamble on myself and putting myself on my list of priorities. Self care will be my goal each and everyday. I will exercise to walk, run, move my body to feel good. I will get more rest, even if it’s not a lot of sleep. I will find a routine that works for me. I will have fun again as me not just Mom. Where I can laugh, love, find my hobbies that make me happy. I will be with others who share these common interests. I will begin to create again to draw, paint, scrapbook, and craft with my kids and on my own. Art is the way to my heart’s inspiration, love, and light. 

  
Eating well and maintaining a balanced diet of healthy foods will feed my body and nourish my mind. I will be kind to myself, by putting myself first, seeking guidance from my family and friends, and counselling from my therapist. I will get outside and explore my new town and surroundings. I will bask in the fresh air and the sunshine, and get my hands back in the dirt with my love of gardening. I will seek daily ways to relax, not just when the stress is choking me physically and emotionally. I will not gamble with my health and happiness again. I deserve to be fully, completely, safe and comfortable in my skin. 

 I will participate in my yoga practice, keeping mindful with my deep breathing and my temper. I will put my deepest thoughts that aren’t meant to be published in my journal. I will read to fill my mind with beautiful words, my heart with the longing to write my own words to inspire, and my soul with the love of making those chapters part of my being. And when the world is too much for me to handle I will sink into my loves arms and find my solace and believe in myself again. I vow to make my self care an integral part of me that it won’t be a chore, a list of demands to meet, it will be my gift to me. 

This has been my submission to More Than Cheese and Beer please check out her anonymous Sunday confessions and all the talent who link up. Thank you. ❤️

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