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. ❤️

 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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Writer’s Quotes Wednesday

 

This has been my submission to Silver threading for Writer’s Quotes Wednesday. Please stop by and be inspired by all the lovely talent who link up. Thank you. ❤️ 

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I’m not ready to say goodbye

  
When I got the news today my knees hit the floor and I cried with a vengeance. No I screamed in my head you weren’t supposed to die! Someone so loving, giving, caring with the biggest, most beautiful heart wasn’t supposed to leave this earth. Now that you’re gone, I’ve held my children tighter. Knowing that you won’t be physically there to hold yours tears me apart. This wasn’t supposed to happen. I just sent you a message last week telling you how I loved and missed you. 
You drove that stretch of road so many times, for so many different reasons. Why should today be any different? Why would this trip from point A to point B be your last? Life just isn’t fair sometimes, people are born and people will die everyday. But not you, or never should’ve been you. Thinking of you alone and tumbling through the air as your vehicle left the road fills me such heartache I can scarcely breathe. Even now the tears fall silently down my face thinking of my memories of you. 

If I could write a book I would fill it with my thoughts of you. The way your eyes danced when you were mischievous, the way your laughter bubbled out of you with abundant joy. The way you made me feel when you hugged me so tight. How you’d say “Mama we can get through anything, because we’re survivors, it’s what we do!” And I know it’s your words ringing true in my head and heart today. 

I would fill each chapter with your wisdoms, all the times I quoted you for your brilliance. And how when you get so excited and start talking a mile a minute, I would from and I’d say “breathe love, you’re not going anywhere.” I was wrong you always were going somewhere as you filled up your life and love with people who adored you as much as I did. You never said no, or turned anyone away. You’d drive across the province to lend a helping hand, make your kids happy, make life easier for someone else it was your way. Anyone who experienced your love was changed forever. 

Even now I read all the kind and wonderful words people have left behind. They too are mourning your loss. They won’t see your beautiful smile when they walk through the doors of your work. Greeting them with warm hellos and how are you today? Your bosses were blessed to have you as long as they did, and I was so happy that they told you so. You mattered to many, and not only your family mourns you but a whole community does. 

To touch so many lives and hearts for your short time on earth was a gift. You filled my life with sunshine and love. And my children adored you as I do yours. What will happen to them now that they’re gone? They will never have to question your love for them. They felt that in everything you did. From the sweet little nicknames you gave them, to teaching them independence, to your beautiful smile and Mama bear hugs. I pray that they will all stay together to heal in their grief. You etched an imprint on their hearts that will never fade or be replaced by another. You were their North Star guiding them to safe harbour. You were their quiet place when the world was noisy and annoying. 

You were their safety net when others let them down. Who do they follow now that the light has burnt out in your eyes? My answer is no one, you were their light, love, soft heart, their Mother; there will never be another. You were the yin to my yang, and talked me off the ledge plenty of times in that gentle way you had. I still remember the first time we met. How you smiled that mega watt grin and said hello and extended your hand to me. I was new to town and knew no one. You looked at my son in my arms and stroked his cheek and I felt safe with you. You patted his head and said “so blonde, and so beautiful just like his Mama.” And in that instance I fell in love with your kind spirit. 

As our friendship grew stronger my love and admiration for you did too. That moment that you called me by my childhood nickname I was taken aback. I told you I hadn’t heard it since my Mom died how did you know? You said “it just fit, it was perfect it was who you are.” And then I gave you a nickname and I never called you anything but. We bonded over so many things, but the loss of our Mothers affected our whole beings. You knew of that pain of wanting the one and only women we had ever loved and trusted, more than anyone in the world to hold us. You had been a few years into your grief, and I was year into mine. 

You saw the pain in my eyes that I tried to hide from others, but you recognized it instantly as you had your own. I was coming back to town soon and I knew I was going to see you. I was going to pop into your work and surprise you. I knew I could do that because you were never a slave to social media, and how you gently teased me about “my need for my social newsfeed.” I picture the look on your face as you looked up to see who was coming in the door, and how you’d run out and give me the tightest hug. Now I will come back and see you one last time, as my heart is stacked with pain and remorse. I don’t want to say goodbye to you. I’m not ready, prepared, or able to do so. Today when you left the world a small fragment of me went with you. To a place I pray is your happy place. 

We talked about heaven and what you thought was waiting for you there. How you hoped it would have beautiful mountains, lakes and trees that you so dearly loved in your town. I was so sad when I had to leave you behind when I moved away. I wouldn’t have got through those four months of solo parenting while my husband worked away, without you. When I asked your help you told me “I love you and I love your son’s I will help you, we will make this work.” And how my kids loved when you and the girls would come over. The dance parties, games, the singing, and cupcakes. I always seemed to have a never ending supply of happiness when you were around. And after the kids went to bed the copious amounts wine we would drink and the laughs we would have. 

I don’t want to say goodbye to you it’s just too hard to even mouth those words. I’m devastated like your family is, they had you longer so I don’t even feel a right to my feelings. How do they go on without you? When can they speak your name without dissolving into tears like I do? Thinking of not seeing that mischievous grin or hearing infectious laughter makes me want to scream it’s just not right, or fair! Somehow life will go on, people will go to work, kids will go to school, the earth will keep spinning on its axis. Even though I feel it’s all off kilter and imbalanced waiting for you to come back. 

I feel you nearby watching and waiting not able to take your journey to the other side. You remain fixed until you know everyone is ok. This is how you were in life, and I wouldn’t expect anything less from you in death. I’m just not going to get over losing you. There will be a space in my heart that is the shape of you. You were such an amazing friend, sister of my heart, Mother, daughter sister, Aunty, and cousin. There will never be a day where I speak your name and the memories of wonderful you will come flooding back. I hold those close to my heart for that’s all I have left now. Until we meet again my sweet friend, I will keep you and your family in my heart and prayers always. ❤️

 

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Friday’s Feats and Fails

Oh another week flew by and it’s already Friday, how does that keep happening? Monday seems to be the longest day then there’s must see TV in between there and wahoo Friday Funtime.

FEAT

It was a beautiful day this past Friday and my kids and I went and played at the park. A new one had been set up in the neighborhood, so it was awesome to have a new place to play. The bonus was everyone was having fun including me, while chasing my kids up and down the slide. Usually my Mad dog wants to stay and play for hours and my Captain is tired after a long day of school. But this time it was a win/win for everybody. And we walked home and the Captain had a great day. It makes me smile and breath a sigh of relief for him as the bullying incidences have been hard on all of us.

FAIL

I had a great weekend because my sister and brother in-law came to visit. The only fail was I didn’t get all my housework done or my hot tub set up. Plus I was up late on Saturday night and a sloth the next day. But really who cares, I got to watch movies and drink wine with my sister so it’s all good. Besides she comes to see me and my family not my house. 😉

FEAT

Sunday wasn’t very productive but I learned a new dance at theatre practice and I was proud of myself because I nailed it. While some others were struggling with the routine I wasn’t, so I was able to help out a little. Sometimes I feel like a piece of furniture there without a speaking role so it was nice to feel useful. Monday was awesome, my hubby let me sleep in and I got caught up on housework. My poor l little boy caught a cold so he had hot chocolate and snuggles with me. I love days like that, I just get all warm and fuzzy feeling so loved. 💗

FAIL

I found out on Sunday night my best friends Mom passed away. It literally shattered my heart. I could feel all my bestie’s pain as I have walked this path myself. And they were very close, like my beloved Momma and I were. After My Mom passed, Lucy said I would never be alone because I had her. And they got to know each other very well living in the same facility. I took great comfort in knowing I was so loved and looked after, at that time I was feeling such despair. So I couldn’t sleep much all week so I wrote a blog and dedicated it to Lucy. My bestie was very touched and I offered to sing at Lucy’s funeral. She was a precious gem of a lady so I’m honoured to be able to do that for her and her family. Such an emotional week already then my Captain came home and told me he got bullied again!!! He also said that the administration staff don’t consider what’s happening to him as bullying. Because it’s not consistent, and only happening with different kids, so they spoke to him about coping strategies. Well I was waiting for the last incident to be resolved and now I have to deal with this new one. WTF is going on with kids today? What gives them the right to physically harm my kid?!!! I told my son exactly what I felt and I probably should’ve used more discretion. Because his response was “wow Mom I didn’t know you could say all those swear words all at once!” Yeah I’m a truckers daughter and I have the potty mouth to prove it. 😏

FEAT

On Thursday I had a meeting with the school staff and I made a point of telling them how well liked my son was in his previous school. The questions I brought up was what’s going on with yours? And do I have to come supervise him on the playground? We disagreed on the actual term of bullying. Never the less they’re recognizing it as a problem, and maybe he needs someone help transitioning to his new school. Do you think? I just want each and every kid that physically hurts my son to know that there are consequences. And the school assured me that’s what’s happening. Community service seems to be the go to punishment of choice. I don’t care if these brats are scrubbing toilets or picking up garage, stay away from my son!!! So now the administration want to help my son with some sensory needs as he’s been complaining about too much noise and commotion in class. I got through the meeting without cursing, crying, and put some a strategies in place to help my Captain, so way to go Redneck Mama!!!

FAIL

Since the Captain has started playing hockey he’s loving it. As well being tired, sore, and moody. So little Mad dog is home being sick and miserable and big brother is grumpy. Boom!!!! The two of them get sick of each other and epic melt down was the result. It was so bad that I had to leave the house. I should’ve been more patient, but I’m emotionally worn out this week, so my patience bucket’s empty.
I ended up taking the youngest out to McDonald’s play land and he had fun after being cooped up inside. I was glad he was feeling better too, since that means I can catch up on some zzzz’s myself. The Captain got to spend one-on-one time with his Dad, watching hockey and being a man cub in training. So in the end everyone got what they wanted. We all just had to blow up with each other so that part was a fail. With great emotion comes great passion so when we know better, we do better.

FEAT

Well here it is Friday and my kids and I took a road trip so I could be with my bestie and her family for the funeral. I was able to get a amazing sitter and attend the viewing tonight. I truly felt Lucy at peace and she looked so beautiful, having the best sleep of her life. There was a few tears, hugs, and some laughter as the family was sharing stories. I kept thinking how it was only a few years ago that was I was there trying to be brave, and mourning the loss of my parents. I kept hearing songs of my Mom and Dad’s favorites. A little Charlie Pride and Elvis Presley are so good for the soul. Music is a wonderful sensory and healing experience. I’m thankful to God everyday, I have it in my life to cope with my daily struggles. So tomorrow I will honor lovely Lucy with love, pride, and a gift of song. 💓

Today’s submission to Friday’s Feats and Fails brought to you by the fabulous http://www.morethancheeseandbeer.com. Check out how her week was, and all the other talent that link up. Hugs. 💗

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