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. ❤️

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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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 for Saturday Stream of Consciousness and the prompt was most/least. Using one or both words.

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As I sit here listening to the ticking of the clock I contemplate all the changes in my life. It all started when I was born,,I came along the last of 6 kids and changed my sister’s life. She wanted a baby brother and she named me Jimmy. When she found out I was a girl she said “take that one back to the hospital, and bring me a Jimmy.” Out of the mouth of a precocious 4 year old this sounds hilarious. Time went on and I had more changes to deal with. I was 4 now and my parents were separating. I wonder what I could do to fix things so things wouldn’t change, and why did my Dad have to leave. So I lived with my Mom and my sister during the week and had visitations with my Dad and step family on the weekends. At first it was too much change to deal with and I acted out and rebelled. Change meant adapting, change meant frustration and tears, change meant anxiety. We took many family vacations over the spring and summers. I travelled a lot of amazing places in the United States, seen a lot of wonderful things, and met some very special people. I’m Canadian so that’s par for the course, we’re a friendly bunch. I’ve never adapted well to change, it’s just so hard for me to except the sands of time carrying on, and everything changing. Elementary school was a big change for me. In Kindergarten I had to leave my Mom’s side and that was difficult. We had carved out a routine while my sister was away at school. It was only a half day so we would still had our lunch and tea parties in the afternoon. We would go for walks, sit in the field read books, or go cloud watching. I’d throw the ball for my dog Bo, as I watched him run for hours. He’d collapse in my arms and is hug him so tight.
Life was great, I entered Grade 1 and I stayed in school full time. I had made friends so I didn’t mind this change as much. I missed my Mom but I knew I would see her after school and the little girl she was babysitting. We became the best of friends and she was like my little sister. I felt grown up and important, since I rode the bus to and from school with my sister. And I learned how to read, and I loved my teacher. She made books come alive like my Mom did. With her expressions and her tone of voice when reading. I then discovered I could do that, by making the words in my mind create a story in my head. I felt incredible and invincible and I actually liked this change when the print became powerful. I entered Grade 2 and things really changed not for the better, but for the worst. My teacher was tall, loud, mean, and scary. She bullied and ridiculed me on a daily basis. She was very strict, and we had alphabetical attendance taken every morning. No talking, no laughing, just listening. Well I was chatty so I got stuck in the back of the class by her desk so I’d be quiet. I’d talk and she’d hit me on the head with her pencil. I sucked in math and she’d read out everyone’s math score alphabetically at the the of the day. Everyone that is but me, I’d hear mine last 2/20 she’d boom out the score. I’d lay my head on my desk and cry just like clockwork. Then the bell would ring and I’d be on my way home. Back to my safe place my Mom and my books. When a story, a nice cup of tea and a treat would take me away from the pain and onto my next adventure. I started math tutoring with 3 other boys from my class where I was teased and bullied. I had enough so I started fighting back. Being bullied every day I began to get very angry and very vocal. That teacher hit me, pushed me, yelled at me too many times and I took action. The next thing she knew she was in the principal’s office with my parents and my principal. She was there begging for her job while my Dad was raging over her and making her cry. He never wanted to see me hurting , and my Momma bear would do the hurting to defend her cub. The next few years were a blur as I grew up and my social skills increased, and my reading and writing skills grew stronger. I had to face another teacher who was a bully. A lot of time I would ignore her and retreat into the world I could create with my pen. I was a modern day hero writing adventures for my characters taking them on journeys I wished I could take. Over the years in school friends were made and lost, boys were discovered, young love blossomed, and hearts were broken. So much change as I grew from a young anxious child to a tough talking adolescent. No one got me hurt me anymore or I’d do the worst back. I got to Grade 8 when I was bullied again. I retreated into my books and writing as a means to escape. I wanted to become a writer and my Mom supported and encouraged me on this endeavor. With a lot of change, I left that school and those memories behind. With some bumps in the road, more changes of being the new kid, I made it through high school. I was proud to hold my diploma and go to college. After that experience I took a long distance writing course until I ran out of money. So I had to get out in the real world, find a job, and a place to live. Although this change from a cushy cared for life happened, a brave independent one took it’s place. I met and fell in love with my husband, had our precious sons and we built a life together. He likes change, he believes it keeps things new and exciting. I still don’t adapt as well to it, but I don’t fear it as much as I did in the past. In the nearly 9 years of our marriage we’ve moved 4 times for his career. And here I am, yet again the new kid on the block. But there’s also a change in me, I’m an adult and I’m brave and courageous. And I now see my daily life as an adventure instead of a challenge I must conquer. I’m becoming stronger, perusing my love of writing again, and becoming like my characters I wrote about so long ago. And I really love this change, this new me, I’m discovering in life and in print. Thank you for supporting me on this amazing journey. Cheers and hugs to all of you brave souls that are following along. ?

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