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. ❤️

It takes a village

I recently took a physical for life insurance purposes. My nurse was kind and polite and when I was asked why do I take an anti-depressant when your otherwise healthy? I simply replied “I’m a special needs parent who’s always advocating, teaching, learning, researching, and loving my family I have to cope somehow.”

The look of surprise that crossed his face was something that I’ve seen before. I’ve had people ask me how do you do it, deal with autism, ADHD, ODD, SPD, and a genetic neurological disorder that affects everything from motor skills, to recessive language delay, to selective eating issues due to textures, smells, and shapes of food.

I have no other answer other than I don’t think about it I just do it. All of it needs to be done always. I need to advocate for my children so that they can have access to resources, funding, and therapy inside the school system and outside within the community. I need to keep up with the latest research on my son’s genetic disorder so I know how to help him specifically and what other co-morbidities I need to be aware of. I also need to teach him about number and letter recognition so he can begin to print what he knows. I have to deal with regression as it’s the part of his brain that’s affected by his micro-duplication.

I need to check, double check and help my son re-learn when he’s lost his ability to process what he’s learning in school. He’s come a long way with his progress from screaming if I tried to help him hold a crayon in preschool to printing his name confidently in elementary school. Now his world’s growing bigger as he attempts to make sense of all those letters on the page and learn to read. I remember what joy I felt when my Mom introduced the magical world of books to me.

I long to see that light in my son’s eyes that I know appeared in mine. Yet I see him stumble on three and four letter words and in frustration throw the book across the room. At the moment we’re working on his reading comprehension so that he can create the story from what he sees illustrated on the page. As for the phonics and word recognition I’m using a multi-sensory approach as well as his special education resources teacher does in the classroom.

1. First I print the word then I get him to to tell me the letters and we sound it out and say it together.

2. Next I have him build it with his alphabet letters on the line below.

3. After he prints the word with his pencil.

4. Then we go over the word and use it in a sentence and repeat with the remaining words.

Sometimes he only has enough patience for three words but to me it’s quality over quantity. I learned the Write, build, print method from an amazing website called Understood. I love this website as I now have a resource that’s there to help us both on our learning journey.

When I see the furrow in my son’s brow as he concentrates to maintain his alligator grip on his pencil I marvel at his independence. He sings a little song as he does so. Alligator grip then my pencil doesn’t slip. Then when he’s completed his task his beautiful smile makes his whole face light up. I’m excited to incorporate building Lego into his learning as we work on math next.

I have five months to prepare him to catch up with his peers and continue onto the next grade. He has an excellent team at school who’ve been there to help with his frustrations, transitions with the use of visuals and successes. My son teaches me just as much as I’m teaching him this why I choose medication for myself and seeking the guidance of a therapist.

No parent is an island and it takes a village to raise a child. When it’s a child with special needs it takes strength, courage, and a bigger, non-judgemental village. I need to be able to cope with this roller coaster of a life we lead. I need to stay on task and ten steps ahead of a sensory overloaded meltdown. Most importantly I need to take care of myself and repair what I feel is broken. My mental health and the well being of my children depend on it.

Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month’s Voices of Special Needs Hop? Click here!

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The Tear

What is it about the passage of time? I’ve heard that time heals all wounds, time passes on and time is short. It’s that tear in the fabric of time that intrigues me the most. Where you can be another version of yourself-someone who is stronger and makes better decisions and takes a different path in life.

Like the actress Gweneth Paltrow played in the movie Sliding doors her character was on the subway platform deciding if she should or shouldn’t get on the train. The director portrayed what would happen with her life if she stepped on the subway and who she was and who she interacted with.

It really fascinated me with the twists and turns within the plot of the movie. It showed me that you do have to be careful what you wish for. As I’m watching this the character in my favourite TV show #Thisisus is replaying the memory track of what his life was like before when he was a high school football star and adored by everyone. Kevin had colleges scouting him, a girlfriend who loved him and a close relationship with his family. Then it all came to a crashing end when he was tackled in the big game and suffered a broken leg.

He still had the beautiful girlfriend (who he would later go on to marry and divorce), a strong bond with his fraternal twin sister Kate, an emerging relationship with his adopted brother Randall, and his parents Jack and Rebecca that were there to love and support him to this jagged tear to his football dreams. Yet Kevin can’t see past any of that as he sinks into a depression that goes on to shadow his life in his current phase.

What would’ve his life been like if he avoided that devastating hit that changed his path forever? Would he have gone on to football stardom and become the proud recipient of the Heisman trophy, married the girlfriend and lived happily ever after? Even though he’s a television character Kevin and his life story is enthralling to me that he went onto to what appeared to be a good life making a successful living as an actor while recovering from the death of his Father, the rock in his life.

How would his life be any different if he would’ve just thrown the football, avoided the tackle and never have to lose his Dad at such a young age? It’s the conundrum I’m sure most of us have encountered at some point on our path what if I would’ve taken that subway train, stayed with the ex or gotten that scholarship to college. It’s the tearing of the dream that we have for ourselves that can hurt the most where we feel the regrets of time we’ve lost and where the what if’s eat us up inside.

Is the grass always greener over on the other side of the fence? Not necessarily, should we all just be living the life of our dreams with no regrets or resentments? I’ve always intended to raise my sons to follow their dreams, reach for the stars and be kind and giving human beings. It’s the life that we live that shows us who are true character really is. Excepting the hand we’re dealt and taking the leap of faith and being who we’re really meant to be that matters the most.

I saw myself becoming a famous actress and singer entertaining the world with my talent. Unfortunately I didn’t have the courage to pursue those idealistic dreams and leave my parents and go off to the big city. I didn’t believe in myself as much as I should’ve and that tears at my heart still today. But who am I to say that my dreams shall just wither and die? I can still realize them just in a different way, by performing in theatre and pursuing my passion for storytelling.

It’s the gift of words that sets my heart aflutter now as I’m passing on that love of reading and writing to my sons. It fills my eyes with happy tears as I sit and listen to my youngest champion son reading about Pete the Cat and his buttons as he acts and sings out every page. When I thought his brain might not be able to make sense of the letters with his autism and mental processing speed. Then as my heart swells with pride when my oldest rock star son starts reading me an essay that he’s writing for school and telling me he wants to be a writer like me when he’s older.

I wish for them not to struggle with their identities or what direction they should go career wise like I’ve done. To be able to avoid the “hits” that happen in life the fair weather friends, bullies on the playground, and young love breakups. If I could I’d protect them from it all but then they wouldn’t be truly living and discovering the world for what it is. Their time shouldn’t be spent wondering what if but really experiencing all that life has to offer them from school, friendships, love, and beyond!

It’s in these moments that I know I found the right path and even though my mind can wonder about the what if’s of the world it’s the life that I’m living being the best me I can be that matters. Not the one who made her way to Hollywood to become the actress of her dreams who may have caved in to all the pressure that a lot of celebrities fall under and resorted to drugs and alcohol as a way to cope.

I would rather be my authentic self who loves who I see when I look in the mirror, that prays with my children every evening for a better world for them to grow up in, and loves my husband with everything in me. That’s the bond of family that dreams, pride, fantasies, or ego can never tear away.

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Hotel living 101-special needs parenting

A month ago I embarked on a journey to pack up my truck and my kids and headed out on a new adventure. My husband has been working away for 3 months and after solo parenting, recovery from a broken arm, and listing our house for sale I was done! I counted the days till my kids were out of school and got out of dodge.

Once we arrived tired, sweaty, and dis regulated late at night that's when the real fun began. It was a long trip and after listening to my kids nit picking each other for 7 hours. I arrived disheveled and I needed a time out. I love my children but I was "needed out" and wanted to forget my name was Mom. But who would answer if I don't? My husband was off limits as he was attempting to sleep with working the next day. I went into action mode and set up the pullout couch for the kids. I jumped into my pyjamas and crawled into bed. My youngest son was stimming and in need of sensory input and regulation so we needed to fill that asap!

I walked around the hotel and read books and gave him deep pressure hugs that only his Mama can give. Inside I was praying for him to go to sleep as he jumped out of my lap and rolled around on the floor. I felt the need to explain to the front desk hotel staff that my son has autism and not able to follow the quiet time rule after 10 pm rule. He gave me a nod of understanding and I carried on with my regulation methods.

Finally by midnight my son was sleepy so I put him to bed. Meanwhile my brain was on hyper drive as the events of the day piled up and reduced me to tears. I lay there on the cold bathroom until my crying subsided then fell into bed into a deep sleep.

I woke up in the morning feeling like I had ran a marathon then someone had run me over and left me for dead. I needed to eat, shower, brush my teeth, and unpack. Breakfast was complimentary and a Godsend. My youngest son was fascinated with the pancake machine as he pushed the button an they fell onto his plate. Thank God for these little gifts as this held attention long enough for us to get through breakfast and back to our room.

5 ways to survive hotel living special needs style

*Beforehand research your list of hotel options and book one with pool, gym, and spa facilities. Luckily my husband's company took care of that for us in advance.*

  • Swim daily and spend as much time there as you can in order to wear your children out. That includes numerous trips to the water slide and to the hot tub. Water can have a regulating affect on children with sensory disorders if there's no Sensory Defensiveness present and they're comfortable being immersed in a pool.
  • Invest some time in the gym. I go there weekly with my kids to work out. Even at the ages 10 and 6 there's machines they can use like the treadmill, elliptical, spin bike, and free weights. It's a wonderful way to feel healthy and deal with stress.
  • Provide sensory friendly cut up fruit and vegetables for snacks. The crunchy foods provide the sensory seeking benefit as well as toning the jaw muscles. With my sons hypotonia condition in his jaw this is a huge benefit to his sensory diet.
  • Cut back on junk food for snack time. My kids tend to be sponges for everything they absorb like sugar and food dyes. Trust me you don't want a sensory overloaded mind and body meltdown within close quarters in a hotel room!
  • In one word Netflix plus additional DVD's, colouring books, crayons, felts, wipe board books, and washable markers on those inside days when you're too tired to move.

Maintain your children's sensory diet even while on vacation. Move as much as possible explore your local parks, playgrounds, and the city itself. On days when the weather's miserable have board games, puzzles, crosswords, and structured time on electronics. I stress this one as you don't need to struggle with the affects of a dopamine crash after a limit is not followed. We also signed up for the Kids Bowl Free summer program and that's fun for the whole family.

My kids became very creative through the pleas of I'm bored and built themselves and indoor bowling alley that kept them entertained for a few hours. They also did some crafts, painting, and worked on maintaining fine motor strength playing with thinking putty and play dough. Our favourite thing to do is play make believe as they pretended they were superheroes and the world was being covered in lava. I watched my kids jump from bed to bed and marvelled at their imaginations.

After a month of hotel living I'm confident I made the right choice to reunite as a family. I wanted my kids to have a fun summer instead of being stressed about keeping a clean house for showings while attempting to sell. Now I spend my spare time reading, writing, organizing housing information and counting off the days till our new homes possession date then the fun starts again with packing and unpacking. Whatever comes our way we'll get through it as being together as a family is the best place to be.

Come to the Voices of Special Needs Blog Hop. A monthly gathering of posts hosted by the http://www.thesensoryspectrum.com/and http://www.thejennyevolution.com/category/voices-of-special-needs/

Click on the links below to read stories from other bloggers about having a special needs kiddo. From Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next months Voices for Special Needs Blog Hop. Click http://www.thesensoryspectrum.com/sensory-blogger

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Acting and other lies I tell myself

When I was a little girl I always wanted to be an actress. I remember late night movie watching with my Mom. We loved the classics of Audrey Hepburn, Lauren Bacall, and Marilyn Monroe. I felt happy and safe in that world of film. When I grew older and had opportunities to participate in school plays and Christmas concerts I jumped at the chance. 

 I memorized songs, dialogue, and full scripts for plays. Theatre had always been my first love and I joined a wonderful group and they quickly became my theatre family. I felt so loved and accepted there with my beloved Hope Pact. I sang with such confidence and determination. Then immersed myself into my character enjoying an Irish accent, and learning my lines, songs, while researching the history of my chosen role. 

Life has always been easier when I’m on my stage. I throw myself into the script and I don’t think of any outside influences. Now I still act but I’m in the background singing with a chorus or taking a secondary role. Where did the confidence go, why don’t I sing with grace and passion like I did before? 

Now I feel like I’m really acting avoiding the hurt I feel when someone has wronged me. I don’t lash out I don’t kick ass or take names like my personality would have me do before. I feel but I’m tending to hide the affects of those emotions more. I’ve always been a person who wore their heart on their sleeve. Which is still true but I act like I’m Teflon and things bounce right off of me. 

They don’t though, it’s just this one act play that has become my life of hiding those true thoughts and feelings. Does anyone care about all the tears I cry flooding my fragile ego until it sinks in an ocean of denial? This is my plight one I choose to accept and be proactive to change. Or continue on with acting and wearing those rose coloured glasses that impede my true vision.  The time to be real is now and stop acting like I’m wearing a titanium suit of armour. I will persevere I always do, find my voice again, sing with courage and conviction, and leave the actress on the stage where she belongs. 

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Celebrate Blogging Linkup Party #20

WELCOME TO THE PARTY!!!
Is it just me or is November flying by?!
I can’t believe Thanksgiving is less than a couple weeks away.
This past weekend we did our thankful jar and made some
leaf rubbing books. 

I also did a little Christmas shopping! I got the kids Christmas
pajamas, Christmas books, advent activity books and other little things.
I love a Target Christmas run…don’t you?!-Arianne

LET’S START CELEBRATING…!
Grab a button for your blog sidebar!

CELEBRATE BLOGGING LINK-UP PARTY!

CELEBRATE WITH US…JOIN OUR FACEBOOK GROUP:
FOLLOW OUR PINTEREST BOARD:
We pin every link to our board every week!!!

ARIANNE FROM FAMILY JOYS:

JEANINE FROM JSACK’S MOM’S BLOG

BIBI FROM SIMPLE SUMMIT:

SHANNON FROM CRAFTY MAMA IN ME:

MARILYN FROM FINANCIALLY SHOPPING:





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photo
Arianne
Family Joys

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Sensory Processing Disorder and me-friend or foes

I’ve shared a lot about what it’s like being a parent to children with SPD. One is an avoider of sensory input and one is a seeker and can’t get enough input in his bucket. He keeps emptying his bucket over and over throughout the course of the day. Whereas his brother after a long day of school has a bucket that’s overflowing and can’t take one more cup of input. This is when Mom becomes the referee and I need to separate my sons before World War 3 happens! I do my best to keep them emotionally regulated but it becomes a full time job and I wind up exhausted and depleted. Like my oldest son I also have SPD Sensory Defensiveness in particular. Loud, sudden high pitched noises bother me, more than one person talking to me at a time is like chaos for my brain and body. My central nervous system processes sensory input most of the time effectively. Then there are those days when the world is too busy, loud, bright, and overwhelming. Sometimes I feel so hypersensitive to the world around me I can hear the energy crackling like a campfire. 

Those are the days I put up my hood and read a good book with a cup of herb tea or escape to my bed with my soft, fuzzy blanket and put on my headphones and listen to my meditation music. I need comfort in those moments when my ears feel like they’re bleeding from listening to my children squabbling over the iPad while three different TV’s are playing in the background. I have to resist the urge to bite my fingernails with the anxiety I feel inside. All I want is to chew on something soft and rubbery like an eraser but I don’t because my kids have gnawed on all the pencils like a couple of beavers. In those moments when I feel like the world is closing in on me and I can’t breathe I rock myself gently and I sing. Whenever I was a little girl my Mom would hold me on her knee and rock and sing with me. She’d rub my back and give me deep pressure Mama bear hugs. I’d give anything to go back to those memories and pluck her out them so I could have her in my comfort zone. But unfortunately that’s not possible as she travels a heavenly path while I’m earth bound. My Mom never made me feel like I was wrong or different. She told me I was a special child of God and my “quirky” nature made me uniquely me. When I was a child I spent a lot of my time reading the Classics like Shakespeare, Dickens, Louisa L. Maycott, and Lucy Maude Montgomery. 

I related so much to those characters who thought out of the box and wrote stories and climbed trees like I did. The poetry and beautiful descriptive writing of William and Charles made me want to write like them and capture the worlds interest with my words. So I wrote getting lost in fantasy worlds, epic battles, and fascinating history. This is when the world was a quiet place as I scribbled away in my notebooks filling pages with my prose and poetry. I’m still like this as an adult where I require quiet time daily and my sons are forthright about asking for their private bubble to decompress in. The stress chemicals can build up throughout the day and we need to release them or end up sending our central nervous systems into sensory overload. No one wants that to happen so we give each other the space that we require. Now you add in a few more letters of the alphabet like ASD, ADHD, ODD, and OCD you’ve got a melting pot of hot soup that no one can handle. Those are the times where I ask my children what they need to make their bodies feel better. Or how fast is your engine using the zones of regulation, of which my youngest son has a thorough understanding of this concept. 

Since facial expressions can sometimes confuse him and his recessive language with conversational verbal fluency is severe. He will then tell me what colour he is or ask me what colour I am. It’s an excellent way for him to communicate and be receptive to others feelings.  A breakdown of the colours and their meanings:

Blue- feeling tired or sad

Yellow-feeling nervous or scared 

Red-feeling mad and angry

Green-feeling happy and smiling

With my oldest son who has a better grasp on receptivity I have a diagram of a thermometer and I will ask him how fast his engine in his car is, and he can tell me or show me using the zone regulation colours. Sometimes are tempers are short, our explanations are long winded, and our bodies not regulated  and we react to the stress and pressure of the hot soup and we blow up. That’s when it’s important to remember forgiveness and our brains are just wired a little differently. It’s amazing what love, a deep pressure hug,  and a cup of hot chocolate will accomplish when words fail to save the day. That’s when I feel that even when SPD appears to be a foe when dealing with the chaos and it’s just too much ; I take that moment to breathe letting myself inhale the positive and exhale the negative and realize that it’s my friend after all guiding my family and I to better days ahead filled with love and patience.
Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

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Ten Things of Thankful-Feeling prayful

There are times in life when some things just don’t make any sense. Death for one isn’t something I can fathom. Whether a loved one is young or old, natural causes or sudden tragedies it tears at my empathic heart. My husband and I recently lost a friend this week. The sadness overtakes me as this special soul leaves behind a beautiful, caring wife and three amazing kids. I think about the last conversation we had, the laughter, the reminiscing, the hugs of let’s keep in touch. Just when I start to ride a grief wave another loss happens, and I’m threatened to be pulled under by the melancholy cloud of darkness. I don’t think I’m supposed to understand death I’ve lost too many people to count in the last ten years. I’m beginning to believe that I’m just supposed to survive the affects of death and keep learning and appreciating the life lessons I’m taught. I will now begin to attempt to find some thankfuls as part of Lizzi’s TTOT linkup and glean a silver lining in a dark cloud. 

I’m thankful that even though it’s been a difficult week my husband has been able to talk about his feelings. He attended his childhood friends funeral while I attended an appointment. He told me it was good to see old friends and there’s comfort in knowing how many turned out for the sad day and how loved our friend was. 

I’m thankful that I kept my head and my heart busy with baking, walks in the sunshine, and movie time cuddles. My oldest (Captain) went with his Dad and spent time with family. The youngest (Mad dog) stayed home with me and enjoyed having me all to himself. 

I’m thankful that my Mad dog is making great progress with his behavioural aid sessions. His fine motor skills are improving so next we will continue working on having him sit for longer periods at circle time. It’s a large part of preschool and kindergarten and I want to prepare him for when he attends his new school. I’m so proud of his accomplishments in the last six months. ❤️

I’m thankful that I had silly, sweet, text conversations with my Captain while he was traveling with his Dad. We chatted from everything about wrestling (he’s a John Cena and Shane McMahon fan), Donald Trump versus the world, and how he wants to surprise his brother with the best beef jerky on the planet. I sure love my son and his creative mind! ❤️

I’m thankful for healthy meals, daily exercise, and relaxing in my hot tub with my family. When I have these things in my life everything just flows better and I feel so happy and loved. My fitness journey is ongoing and I strive to grow stronger in mind and body everyday. 

I’m thankful for catching up on housework, the dreaded laundry monster, and enjoying some beautiful summer weather. My moods are really tied to how much vitamin D I’m getting so the sunshine’s my elixir in life. 

I’m thankful for earth day this week. My Mad dog and I went for a walk by the river with his behavioural aid. We skipped stones jumped from rock to rock and took in the beauty and appreciation of our home. I’m grateful for the fresh clean water, the plants and trees providing me with oxygen and the flowers blooming and letting me enjoy their fragrance and aromatherapy. 

I’m thankful for reading, writing, and accomplishing my work tasks. I still have a few things to catch up on but I’m crossing things off my list and that’s a win/win in my world. Organization has never been my strong suit but as I see my piles of clutter becoming less I feel more in control of the direction I’m taking. It’s the old adage “cluttered space equals a cluttered mind.”

I’m thankful that I was able to apply that mindfulness to eliminating my digital and online clutter as well. Now that I’ve deleted data, cleaned up email accounts, and uploaded pictures onto my computer my phone/office is running at the speed of light! It’s amazing what a good feeling of satisfaction that can generate. 

I’m thankful for late night cuddles when my son can’t sleep. Late night talks and tuck ins when they miss me when it’s time to go to sleep. I’m getting to a point now where they don’t need me as much, especially my Captain. It’s so rewarding to see them growing and discovering the world and still wanting me by their side to chat about life and it’s mysteries. 

I’m thankful we had a successful follow up appointment with my youngest son’s sleep specialist. Since his diagnosis of autism in February and asthma in March we’re solving more health mysteries. The asthma medication has improved his breathing and shrunk his tonsils so much she doesn’t think he needs surgery! Now I will push for the MRI and see what’s going on inside his brain in regards to where the sleep apnea is originating from. Central sleep apnea is a a very serious condition-whereas the brain isn’t communicating with the heart and lungs about getting sufficient oxygen intake. Knowing my son is safe, breathing and sleeping properly is an answer to my prayers. Thank you to all you sweet souls who have expressed concern, said prayers, and empathized with us on this long, sleep deprived journey. This is the best outcome and update I could ever hope and pray for! I’m so thankful to God for these blessings. 💖

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Ten Things of Thankful-feeling the love

I’ve been thinking lately about the things that make me hapy. I always count my family, friends, and my ability to see the light in a grey cloud. I lived costal for nearly three years and one thing it taught me was to appreciate the sunny days when they happened. This was supposed to be part of the TTOT linkup but a faulty phone app froze and I missed the deadline. I’m going to post it anyways because life’s too short to not be thankful for my blessings! 

I’m thankful for a enjoyable spring break with my kids. It rained a couple of days but the last four have been perfect. We went for walks by the river, played in the backyard, made crafts, relaxing in the hot tub, and today was a perfect day for a water gun fight. And also seeing a sunset like this tonight. 

 
I’m thankful for learning how to paper mâché with my son’s behavioural aid. Even my oldest got into the fun as well. I’m excited to reveal our project for you next week. 

I’m thankful for getting caught up on laundry and housework over the week. You can’t tell I did much now so I’ll be back to the grind tomorrow. 

I’m thankful that my kids had a great experience at their dentist. The staff was friendly, professional and polite. Watching soccer on the flat screen was a big hit with both my boys and led to some interesting conversations. The office having IPads in the kids room was also a big hit with my kids. I was so impressed with how the staff addressed my concerns regarding my youngest son’s autism and comfort level. I’m so happy we found an office that’s close to all our other professional services. 

  
I’m thankful for relaxing, watching movies, learning Minecraft techniques, and baking with my son’s who are full of energy. We had a great time and I got a break this weekend from being there entertainment director. 

I’m thankful for sunny days, visiting with the neighbours, and digging in the dirt. It’s so exciting to see that spring has finally sprung    Now I’m anxious to get out and garden as soon as the morning frost disappears. Mother Nature has a sense of humour to be desired. 

 I’m thankful for coming to the blog to tell you what makes me happy and gives me a thankful heart. 

I’m thankful for you my dear readers and making it to 600 of you lovely followers. I’m grateful you like to pop by and read what I’m musing about. 

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I’m thankful for finding a local special needs community. A few faces I recognized from moving here and I look forward to making new friends for myself and my family. Special needs parenting can be lonely and isolating so to find others like our family is a blessing indeed. 

I’m thankful for having wonderful friends who invite me out to have fun, chat, and remind me that I’m not alone in life. Even my friends who are farther away who check in with a text, message, and a phone call just to see how I am. 

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Monday Musings A-Z challenge-Compassion


I was raised to have a compassionate heart. My Mom was a big believer in showing compassion instead of anger. She didn’t have an evil bone in her body and she believed that people judged others by what they saw in themselves. I still carry this belief and honour her memory by teaching my children the same. Some have called me naive because of this truth I hold to dearly. That’s one’s opinion but not my truth.
It will still baffle me as an adult when some members of society don’t show compassion. I see it in daily life when someone driving cuts off another car. I see it in a long lineup when someone throws their money at a cashier. I observe it in a restaurant when dining out with my family when my son becomes disruptive at the table.

The reason is he has autism, and he doesn’t sit still for long. Ten patrons can turn into twenty and he becomes visually overstimulated to his environment. He also “stims” when his body is seeking sensory input to regulate his central nervous system. He does this by jumping, rocking or dancing on the spot. I see the looks, overhear the whispers and take him outside to shake his wiggles out. I don’t attempt to try to shush him out of embarrassment because it can escalate matters quickly when he feels he’s not being understood.

This is why we eat at one restaurant in our town. The food’s amazing and we’ve become wonderful friends with the owners during our time here. They know my family and they know of my son’s autism. If things are loud and crowded in their establishment my husband will go in and order us take out. If we make a plan to phone ahead we put in our order so that it arrives when we walk in the door. I’ve been at this game changing strategy  for awhile now as he had a diagnosis of Sensory Processing Disorder first at the age of 3.

I had to prepare him for the world as it can be too loud, bright, and busy. I don’t feel that anyone owes my son any special favours all I would ask for is compassion. I recently shared on a Autism page of my son’s diagnosis. It was World Autism Awareness day and I felt brave sharing something so personal to our family. I made the mistake of not wearing my armour in sharing my son’s story. I had briefly discussed the judgements that we’ve received and even a personal attack on my parenting him through a sensory meltdown.

What I forgot in that moment of courage was that anything put out there on the Internet can be judged. That came to pass and I was stunned by the commenters lack of compassion. I thought to myself I don’t know this person’s story and yet she believes that she knows mine in one paragraph. I stayed in my #Mommitment mind, I may be judged on my words but I know my spirit. I didn’t reply and I was blessed that the admins of the page deleted the comment and left my story up.

It was liked and shared a few times and I felt relief that I wouldn’t be having to face that hurt again. It was such a strange feeling to be put on the spot like that from another parent. I will admit there’s a lot I still need to learn and not everyone wants to Light it up blue for autism awareness. Not all organizations are everyone’s cup of tea but I learn something from each of these groups and I gain support, understanding, compassion and that virtual hug of not feeling so alone. I just learned today from a amazing blogger friend  that autism by definiton means “to be alone.” This brought tears to my eyes and made me realize I never want that to happen to my sweet son.

My son has autism, but I don’t believe it defines him as a person. His precious giggle when playing hide and seek with his brother. His beautiful smile when he tells me he loves me with a sound, words, or a kiss. These things define him and when the world has gotten to loud and crowded for him and he reacts to his environment by melting down; he’s not being a brat, this is not a temper tantrum, all I ask is for a little compassion and understanding. It helps the eye of the society storm feel a little less scary to navigate.

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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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