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. ❤️

A-Z challenge Brave

I recently started the blog linkup challenge of all the letters of the alphabet. I started writing them and left them in a draft status. For the next few days I’ll be publishing them and I’m thinking I’m either brave or crazy for doing so.

Word prompts always get my writing creativity flowing and I tend to write whatever pops into my head. Sometimes that’s refreshing and other times it leaves me feeling vulnerable. I recently shared that my son was diagnosed with autism on World Autism Awareness day. I considered writing about it with the beginning A of the alphabet but I chickened out and I wrote about acting instead. It’s a very personal part of my family life to discuss but this is what it feels like to be brave in print.
We started out on this journey two years ago when I was aware of my son’s developmental challenges. He took his first steps early at ten months when we had just moved into a hotel. My husband had just got a job transfer to a new town while we were attempting to sell our house in the previous one. By the time our youngest son was twelve months he was running and had a small list of foods he would eat.
He also wouldn’t sleep for long periods of the night even after cutting out his first nap of the day. I was living on caffeine and Carnation instant breakfast shakes. He was on the move constantly and I would take him to his brother’s school to attend a play group, and there I noticed he wasn’t behaving typically like other children in his age group. I watched as he grabbed toys and played beside me while I participated in craft time and play dough making. He wouldn’t touch any of it nor interact with other children.
He would also have a difficult time with crowds if the classroom was too busy. I chalked it up to tiredness and I’d take him back to our room for nap time. The vacuum would scare him and he didn’t like surprises or things he couldn’t predict. I had always referred to him as my sensitive boy when he was born as he was quiet but could get his feathers ruffled quickly. It got to be exhausting keeping him calm, well fed, and happy as he was easily sensory overloaded.
He was tactile hypersensitive and never liked to touch his finger food, play dough or the rice table. I had at this time become good friends with the facilitator of the playgroup and I asked for her guidance. My son had turned two by this time and had finally started sleeping through the night as we had moved into a rental house when he was eighteen months old. It was an adjustment for our family but one I welcomed after living in a hotel for seven long months! The staff was incredible to us and thought of us like family. They made the long days of dark clouds and rain bearable.
I feel brave for having gone through that experience and yet I had this feeling that my son needed more interventions. With the help of my friend the children’s facilitator she referred me to a child development agency. Then came the next few months of evaluations and questionnaires regarding my son’s development. He was approaching the age of three and still was behind in his gross, fine motor skills, as well as speech delayed.
Those assessments led us to a developmental Pediatrician that diagnosed my son with Sensory Processing Disorder in particular Sensory Modulation Disorder. This is when the central nervous system is seeking out sensory input to deliver that message to the brain and the rest of the body. My son had no fear, he’d climb a six foot bookshelf and jump on to the couch below! He’d also empty every book out of that shelf and dump out toy boxes. I would be in tears trying to put my house back together daily.
In that time I did a lot of reading staying up late burning the midnight oil with learning everything I could about SPD.

My husband had gotten another job transfer out of the province and I was doing my best being a solo parent. The nights were long as my son had begun snoring which isn’t your normal behaviour of a toddler. We saw an ENT that diagnosed him with a sleep disorder but said he was unable to do anything about it.
It was a struggle for the next three months but I persevered found us a house, got us packed up and moved into another hotel while waiting to take possession of our new home. I hardly slept and luckily my son was still napping so I’d catch up on sleep with him.

My oldest son was also suffering with some anxiety and I had to keep reassuring him constantly that he would make friends and enjoy his new school. I got him involved in a summer camp and started moving and unpacking all our belongings.
The next few months I spent my every waking minute making our house a home. The school year started and with that brought some more anxiety in the form of my oldest son getting bullied. I had to deal with this issue for the next three months. The office administration got to know me well as I was always requesting a meeting.

Finally that worked out as I got some school counselling and his teacher to help out.
Meanwhile I was attempting to socialize my youngest son as his vocabulary was starting to increase. We met a sweet friend and we attended a play group. It was very busy, loud, and crowded and my son didn’t do well at all. Nap time was a Godsend as the environment left me feeling sensory overwhelmed as well. After that, we attended play dates with our new friend and her family. It was special to have picnics at the park and birthday party fun.
When my son turned four we started to think about preschool as he was almost fully potty trained. It had taken awhile but we worked all summer towards his accomplishment. We did all the assessments with a speech, physical, and occupational therapist who found out he was Globally Developmentally Delayed. Meaning he had a severe delay in one or more of his developmental skills.
We worked hard to obtain funding and now he attends a wonderful preschool and has funding for a therapy team. He just turned five and will be transitioning to Kindergraten in the fall. With knowing he has autism there’s been a push in the right direction to get him the funding and behavioural aid support he needs. My son has a lot of challenges in life but ones he’s always faced head on with his tenacity and strength. I see a future full of success, determination, and substantial support. He’s our family’s blessing and the sky’s limitless for him and what he will achieve.

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Letting go and Letting God

Today in Canada is #BeIl Lets Talk campaign to raise awareness for mental health. For every tweet with #BellLetsTalk Bell Canada will donate five cents to Clara’s big ride across the northern part of Canada. I’m a great supporter of this cause as it’s one close to my heart. I had a very amazing and fortunate experience to meet one of it’s spokeswoman last year Clara Hughes.

Last year she stopped into the town of Hope, BC while on her ride for Hope to share her message. Clara was on a mission to cycle across the provinces of Alberta and British Columbia to end the stigma associated with mental illness. This year she took a 110 day journey and 11,000 kilometers visiting 95 communities, and over 80 schools along the way.

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She has been the only athlete that had won gold in both summer (cycling) and winter (speed skating) in the Olympics. She has also struggled with her own mental health and she spoke of her journey with courage, kindness, and bravery. She spoke very candidly about herself and I hung on her every word that night. And when I had a chance to meet her and shake her hand I was literally in awe of her beautiful spirit, honesty, and sensational smile. The most recent quote I read of hers is my favorite.

“I cannot be the only one and I’m not the only one trying to make a difference,”
“We have a long way to go but the shift is starting to happen.”

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Today I’m going to share my personal journey with my mental health. I was a happy, curious, bright, and rather serious child. I was in family therapy at the age of twelve to deal with some family issues regarding my parents separation. I was to decide by then who I would choose to live with. I chose my Mom and I grew into a sullen, hell raising teenager who was sent to live with my Dad and step Mom By the age of fourteen, I was diagnosed with depression and insomnia.

I refused to take medicine for it and opted for eating healthier. I struggled with it right up to the age of sixteen. I still opted for no antidepressants and chose a healthier lifestyle. It was when I had graduated, moved out my house and gone to college that I realized I couldn’t keep my demons inside my mind silent any longer. I saw my family doctor and she diagnosed me with anxiety at the age of twenty. I got through my first semester of college and then I decided it was enough and returned to working.

The deadlines, going back and forth to my boyfriends while living on my own, the loneliness and stress got to me so I dropped out. Fast forward in time when I was married and expecting my first baby at the age of thirty-three and I was suffering with anxiety, stress, while working full time on a part time job. My saving grace was my yoga classes that I was teaching at the time. I could relax, meditate, and put myself and my clients first. My son was born via an emergency Caesarean section. About three months into Motherhood I developed Post Partum Depression. It was a difficult journey and I made it through only to have my Dad die two years later.

Grief, raising a toddler, and living far away from my family were the conditions that created a time bomb; that was ticking and waiting to explode! I went into therapy with a PPD support group for two years. I then became pregnant with my second child after trying to conceive for a year when my son was almost four. My Mom became very ill and died while I was eight months along. My world was sent into a tailspin and I prayed I would survive it. My baby was born at nine months, a month premature and spent two weeks in the NICU.

I realized then that no Mom was an island and I went on antidepressants for the first time and enjoyed a bubble of calm while raising my sons. I got through that grief period by attending a grief recovery program and really leaning on my family and friends. I’ve had insomnia since I was very young and gave birth to non sleepers. Eventually my oldest slept through the night at fifteen months, and by the time he was three he was sleeping through consistently. We had moved right after he turned five, and my baby was ten months old. This was our third move due to my husband’s career. 

Life in a hotel, no friends, lack of sleep, lots of stress with an incessant rain clouding my mind and heart; I sank into a deep depression. I found a doctor and she renewed my prescription and then diagnosed me with SAD (Seasonal Affective Disorder). I was only a year into my grief journey with my Mom when we moved into the hotel, while attempting to sell our house in another town. At that time I had noticed developmental issues with my baby at eighteen months. He was meeting milestones albeit later than most. Although he did walk early bouncing between beds in the hotel room. So there were some bright moments for me to hang on to.

I took him to the Doctor and was given a pat answer he’s a busy boy who’s hardly sleeping, you’re sleep deprived here’s a handout. After being fed lip service and sent on my way, I talked to my health nurse and she directed me to resources to look into ideas to help while coping on team no sleep. There was my youngest son speech delayed, having trouble with pronunciation, and moving constantly. Climbing everything, high tolerance to pain, eating ten different foods, and hardly sleeping. Then I began the long six month journey to get him assessed at two and half years, while waiting to see a developmental pediatrician.

He saw Child development counselour, Occupational therapist, Speech and language pathologist, and finally the Development pediatrician. Then with the extensive list of concerns came up he was snoring, he had oral fixation issues, hypotonia of the lower jaw which caused him to stuff his food in his mouth till he choked! I still have to watch him closely when he’s eating. After a thorough assessment the doctor said there’s no doubt in my mind that he has sensory processing disorders with Sensory Modulation Disorder being the official diagnosis. At the time he said he didn’t see any signs of autism, but you may want to have him assessed as he gets older.

So I was relieved to finally have something to work with. I went home googled SPD and took the book Out of Sync Child-By Carol Kranowitz out of the library. I finally saw my child on every page and didn’t feel so alone or lack of a better word, like a crazy hypochondriac dreaming up diagnosis’s for my son. Another month went by while I spent late nights researching and listening to my son on a baby monitor. I was on a waiting list to see an ENT and he was diagnosed with a Obstructive sleep apnea. I’ve been on team no sleep for nine years. Between anxiety, post partum depression, grief, insomnia, and heart ache I’ll admit I’ve wanted to run away and hide.

Here I stand today working through the issues one day at a time; as I take a new mental health journey with my sons and keeping my own sanity intact. I don’t have all the answers but I’ve learned over the years what works and doesn’t work for me. By taking care of myself every chance I get is the key to my emotional stability. By keeping hydrated, eating healthy, taking my vitamins, exercising, and catching up on my missing increments of sleep I’ve started to feel more hopeful than hopeless.

I’ve also started to use essential oils to help my children and myself with our anxiety. As that was what got me off of my antidepressants two years ago. Last night I was anxious and couldn’t sleep, I felt wave after wave of emotional energy coming at me as I recently had a wonderful friend pass on. I held my son who was hurting with his restless legs syndrome, and massaged his feet and legs with an oil blend for pain and let him fall asleep on my chest.

I felt like my heart could just burst from my love, grief, worry, and pain. I thought of my beloved Mama who would say this too shall pass honey child. Don’t forget to smile through it, and take care of yourself too. Day by day I listen to her wisdoms chiming in my head and singing the song I wrote for her. I feel a little more closer to her, God and heaven. And I feel blessed as that’s a team that can help me through anything, by letting go and letting God deal with it.

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Most and Least

This has been the most stressful week I’ve gone through since I got the call that my Dad was in hospice. I believe the feelings that are swirling around in my body and brain are the same. This week I had to sit there while the Paediatrician said “I’m going to say some things that are difficult to hear.” So I replied “just say it Doc I’ve lived through a lot.” So she said I want your children genetically tested and evaluated for ASD.

I didn’t know what to say except I agreed and thanked her for being honest with me. Inside I felt like she had just ripped the bandaid off my broken heart. And it was oozing out the pain I was keeping in there awaiting healing. I walked out of her office feeling the most vulnerable I had ever felt in my life. My kids are my world, and when I first found out that I was expecting each of them I prayed for a healthy pregnancy. I never wanted to see them in pain, suffering or feeling powerless.

So this is the least of their worries as I just allow them to just be kids. They don’t know of the stress, the sleepless nights, the times I’ve spent crying. They know that they get frustrated easy, nightmares awaken them, and change is difficult to comprehend. With my oldest I tell him all our brains are wired differently. He can’t always help what comes out of his mouth, but he should say kind things.

He sometimes asks me why he can’t let go of a thought bothering him, or why he needs his homework to be perfect. The only answer I have is God made us all unique and different. There’s things that really bother me too. But I concentrate on the things that I can deal with. And let go of the things I can’t and let God take care of them. I will admit though this is the most I’ve had to absorb in one day in one week. So I’m praying for strength and acceptance so I can infuse that in my sons.

So where does this leave me? I will be applying for funding, and getting the most help I need for my children, as well as myself. I’ve joined a support group online and I look forward to meeting these other Moms. I’ve also been attending my support groups locally and it’s so gratifying to meet other parents that are walking the same path as me. After the paper work’s completed, and the appointments are made, then I’ll see where we’re at with getting help.

I’ve never been a fan of labels, but in this case it will be what’s needed in order to move forward with a diagnosis with funding. These labels will not define my children or change who they are. They will not change me or my husband either. They will make us the most devoted parents with advocating for them. They will still be happy, healthy, fun loving kids with a few more letters of the alphabet applied. And most of all they’re our gifts from God that were bestowed on us.

I wouldn’t change any moment of their lives or mine. We get the hand that’s dealt to us in life. We can let it define us or let us rise to the occasion. I prefer to feel my pain for a moment, embrace it, and keep moving forward. I owe it to my family to do so, and it’s the least I can do after they blessed me when they made me their Mom. 💖

This has been my submission to
http://lindaghill.com/2015/01/23/the-friday-reminder-and-prompt-for-socs-january-2415/ for Saturday Stream of Consciousness and the prompt was most/least. Using one or both words.

Please check out her gifted writing and all the other talent that links up. Thank you always dear readers, for your love and support. 😊

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