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 thoughts on “ I know what I’m fighting for, my peace of mind”
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!! ?
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. ?
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!
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. ?
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.
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. ❤️
You’re very welcome and lots of cyber hugs from me
Thank you Mike, lots of cyber hugs sent back to you too!!! ?
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.
Thank you so much Dyanne, for the beautiful compliment. I’m hoping for a smooth transition too. ?
Hi, I recently nominated you for a small challenge https://mynameistune.wordpress.com/wp-content/uploads/2015/06/16/3-days-3-quotes-challenge-day-2/
I love quotes Eman, I will check this out. ?
Tht will be awesome…
Sorry I will get on this challenge today. I had to catch up on my household chores. ?
No problem ….I cant wait to go through your quotes
I’m seriously a quote junkie, I follow a lot and put them in my quote book. I also like to make up my own as well. ?
Thts a great hobby…. I love collecting Beetle Bailey comics. Have you ever heard of them?
It really is yes I’ve heard of Beetle Bailey and I love Rin Tin Tin. ☺️
Wow I love Tin Tin too. *smile*
I remember introducing my son a few years ago and he was like wow he’s so cool for a cartoon character. ?
Hahaha, I’m glad he liked it….Im amazed at how many memories our brains can store. You can remember what you did when you were 5 years old
And you can follow almost 30 different Tv shows simultaneously
Yes it’s so true, I’m a lot older than most parents so my memories go back to Gilligan’s Island, Happy Days, and Three’s company. Netflix and Youtube are a cornucopia of information and childhood memories revival. ?
Hehe, those shows definitely show some age 🙂
They do, but I’m like fine wine I get older and better. ☺️
That’s wonderful to hear.. What’s the time there?
I’m bragging but it helps when I’m feeling less than confident. It’s 10:26 am here and I’m hoping the sun will shine soon. ☀️
Its 7.30 p.m here. Im sad that Sunday is ending.
It’s Father’s Day here and I’m looking forward to a special dinner with my family. ?
It was also Father’s Day here yesterday, although it’s usually not a big celebration here in Kenya.
It’s all about the Dad’s day sleep in, catch a nap, eat drink and be merry. ?
Oh i totally get it now…
I was hoping to sleep in but my kid didn’t get the memo that Mom’s and Dad’s can sleep in on Dad’s day. ?
Its cool…I’ll be patient
Lol I wish they would invent a machine that does all the chores in the house including scrubbing your back.
That would be wonderful, I’ve been searching out quotes, running a blog promotion, and parenting on the fly. Time for some R&R tonight, I’ll post before the day is through. ?
Okay, Don’t feel rushed though. Take your sweet time. What’s R and R?
I posted my first quote now to work on a second one. R&R= rest and relaxation. ☺️
Thats great, I’ll just hop over and give your post a like.
Aha, I understand now
Thank you so much Eman, I hope you don’t mind the nickname I always give them out to people I chat with. ?
No problem. I don’t mind at all. Its a cool nickname.
Oh I’m glad, it’s just my way of connecting almost everyone I chat with has one. ☺️
I love it. A nickname always makes one feel nice /really important
I agree, and thank you my phone started it first and didn’t want to type your whole name. So I thought well that’s kismet and then E-man was born. ?
I would also be too lazy to type a long name like Nicodemus or Barnabas.
You’re very welcome.
Me too, I’m glad I don’t have that long of a name. ☺️
Hahaha, Im happy about it too….Lol
7 letters is enough. ?
So Jeanine is there any short-4m of your name?
Yes see above. ^ ?
Oh cool, I have seen.
My Mom gave all her kids nicknames. It’s strange for me to be called by anything other than Mom, Mommy, or Mama. ?
I’m sure it’s because you are a mom now, thats why. Maybe some of your friends call u so and so’s mom?
Oh yes my kids have nicknames in my reality and my blog as well. ?
J or Jsack work for me. I don’t see my comment above replying to your question so I’m answering it here. ?
No problem…oh J is way too short. 🙂
I had family that used to call me Jeanie. ✨
Nice. Why are you using past tense?
It was my Dad and my Grandpa both deceased now that gave me the nickname.
May their souls rest in eternal peace.
Thank you so much, they were the greatest men I ever knew. ❤️
I feel that what my loved ones instilled in me are the best part of me. Both of these men had great strength, fortitude, and tenacity. ❤️
I think there was a slight problem with my internet so my comment failed to be posted. Anyways I prefer the full Jeanine
It’s all good I prefer the amazing J super wonder. ?
Haha, alryty then. I’ve duly noted that.
I’m a modest super hero without a cape. I can be incognito that way. ?
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
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. ❤️
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. 🙂
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. ❤️