House of A Writer

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

on 15 June 2015

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 Responses to “ I know what I’m fighting for, my peace of mind”

  1. Colleen says:

    I was at a loss for words for a little while after reading this .. Then as I was outside watering my garden…….I got to thinking of You , Jeff and your precious Boys!
    Jeanine I believe you are an awesome Mother and doing the very best you can….
    Thank God you can write and express yourself so well.
    You are able to share your concerns with us all and be involved in the support groups to support you in your struggles….
    But at the same time you express your gratitude and realize there is ‘light at the end of the tunnel’.
    You express all this with sensitivity , honesty and often with humour that makes us laugh and cry at the same time!
    Keep on writing my dear Jeanine!! Love You!! ?

    • jsackmom says:

      Oh Colleen my eyes are welling up with grateful tears. I really am doing the best I can. Some days I struggle more than others, but I was always taught to think of the light or see the silver lining. Thank you so much for reading my words and understanding what I’m trying to convey! I love you too. ?

  2. Kristi says:

    Oh, hugs to you. Every person is unique, and every situation different, but I could relate to many of your worries and concerns. One thing I have told myself over the years is that the diagnosis, while giving some insight into how to proceed, does not change who the child is. It sounds like you are a great advocate and parent to your son!

    • jsackmom says:

      Yes I agree Kristi my children will always be those sweet wonderful boys I brought into the world. Labels equal funding, and funding equals services. Thank you for the hugs and the wonderful compliment. ?

  3. 80smetalman says:

    Wow Jeanine, you have been to hell and back! It must be so reassuring to know that there is a light at the end of the tunnel. Saying that you only did what any mother would do would be an insult to all you have been through and fought for for your boys. You have gone way beyond that and have showed many people what a true mother’s love is.

    • jsackmom says:

      Oh Mike I have tears after reading that!!! Thank you so much, that’s all I’ve ever tried to do for my son’s; is show my love through my actions. I pray the next steps of the journey, preparation for preschool and forming a therapy team go well. I’m so close to getting what I need for my kids and peace of mind for me. ❤️

  4. dyannedillon says:

    I can’t imagine anyone being more educated about their child’s health than you. You’ve been a wonderful advocate for him. I hope the transition to outside OT, PT, etc., goes smoothly for both of you.

  5. Laurie Free says:

    Wow Jsacks Mom/Jeanine you are so on top of all of this and wow..what an amazing job you have done in pushing forward to new frontiers in his care and not giving up in being exactly whet your son needs in life. You express the whole situation so clearly. .and what a testament to writing as therapy! # amazing stuff amazing person

    • jsackmom says:

      Oh wow Laurie thank you for the incredible compliment!!! There’s been a lot of times where it was just so hard all I thought about was letting it go. But I knew it was just an overwhelming moment and my son deserved a better opportunity so I just fought to advocate harder. Sharing it here today makes me feel stronger. Thank you so much for reading and sharing your thoughts. You’re an amazing women too. ❤️

  6. You have such an amazing outlook given all that you have been through. Kudos to you for being your son’s best advocate – I think that others reading your story would be inspired by your perseverance. 🙂

    • jsackmom says:

      Thank you so much, I’ve learned a lot in the process of advocating for my son’s. I can get lost in the frustration of it all sometimes, but I never give up. ❤️

Leave a Reply

Your email address will not be published. Required fields are marked *