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. ❤️

The birthday party

I was so excited when my son received an invitation to his new friends birthday party. Having a child with autism, ADHD, and Sensory Processing Disorder (SPD) birthday parties can be a double edge sword. Firstly, there’s the question of is he going to to be invited to any parties and secondly, do I stay for the party to assist him when he needs help?

The day arrived and I had done all the preparations with my son with a social story, drawing out a schedule, and keeping my visuals handy in case plans had changed. He was quite excited and I needed to drive around the block a couple of times till he can process his feelings.

We arrived at the birthday boys house and was met at the door by the parents. I explained I would stay for 30 minutes until my son felt comfortable then I would quietly leave. I knew I’d be the only parent there as by the age of 6 or 7 it’s a drop off and pick up event.

I haven’t been able to do that with my son in a neurotypical setting there’s a lot of variables to consider. Is the birthday fun going to be too overstimulating for him, will he understand that he can’t open the presents, and lastly will he understand when it’s time to leave.

I sat quietly on the couch making small talk with the parents and surveyed the yard where a nerf gun war was taking place. I had to firmly and directly tell my son the rules as he wasn’t interested in leaving the well stocked toy room. He eventually made it outside and joined in the fun that the other guests were having.

I didn’t want to be that type of parent helicoptering around my son son so I made myself as inconspicuous as possible. With the play getting more intense I could see my sons eyes glaze over and I knew it was time to switch to another activity. That didn’t work out so well so I joined in with playing a football game and hoping my son would want to play as well.

The distraction worked and we were happily tossing the ball back and forth when it was time to come in to have snacks and open presents. My son wasn’t interested in eating but I had begged him to have some carrots as it will fill his sensory seeking need once the game was cut short.

All the kids gathered around and off my son disappeared to a bedroom to have some quiet time. I followed behind him to let him know I was there to help him and the kids were watching the gift opening. He had no interest in me being there or seeing the presents. He asked me to leave and said “I’m fine Mom I got this.”

As I prepared to leave I gave the parents my contact info in case I was needed earlier before pickup. My sons words of I’m fine echoed in my ears as I drove away. I prayed he would be as I wasn’t even close to being okay with leaving him behind.

I spent some time with my older son and then it was time to pick up his brother. I had made sure that I gave him 10 minutes to prepare himself to leave as I followed him to get his shoes and goodie bag. I set the timer on my phone and stood at the door as he got ready to go. As I turned to thank the family for having him at the party he bolted!

Luckily it was within the house and I could get to him quickly. I knew he was having a hard time with transitioning from leaving the party so I remained calm. He professed how he didn’t want to go and I told him all the reasons why we had to leave. I was doing my best to allow him time to process and reached for his hand only to be shot in the throat with a nerf gun.

I was taken aback and started coughing as I unprepared for that impact to my vocal chords. Much to my dismay this whole scene of me chasing him to get the gun and get him out the door was witnessed by all the guests in attendance. I’ve come to a point where I’ve been judged for my parenting that I only care about my child not others opinions.

In that moment I wanted to save my son from any future scenes of chaos and I have pulled him along and carried him out the door. I learned from this experience as it was the only thing I could do in order to help my son. Now I make sure we have a game plan in place and keep the party time to no more than 2 hours.

If things go south as my son reacts to transitioning I have my phone as timer, a little white board so I can draw out the plan ahead of time, and another activity to do as soon as we leave. As I reflect back I know now I was caught up with my son fitting in with his classmates and be like all the other typical kids.

Neurodiversity allows for thinking outside the box and my son is all about doing that in his own way with his stellar imagination. I realized that my need for him to be comfortable at the party spoke volumes about my fear of the unknown.

Now I meet my son where he’s at and time has proven to be the best teacher as well as steadfast love. If I focus on the things he can’t do like stay at a birthday party without me, then how will I celebrate the successes he has that he’s achieved in his own.

I’m happy to say there’s been other birthday parties and he’s felt comfortable enough to ask me to stay or ask to leave if it’s too sensory overwhelming for him. He’s grown and changed so much since that first birthday party and I know no matter what obstacle he faces he’ll be fine, and he’s got this.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by the Sensory Spectrum and the Mommy Evolution. Click on the link 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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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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Autism and my family’s journey 

It’s been almost 1.5 years ago that my youngest son was diagnosed with autism and a rare neuro developmental disorder called 16p11.2 proximal duplication. Which makes him so rare is that not all 16 th chromosomal abnormalities develop into any other genetic anomaly and in some cases it does. He’s in the 1 % where the duplication develops into autism affecting his central nervous system, auditory system, visual system, as well as his sense of taste and smell.

Essentially the disorder means that he has an extra band of DNA in the 16 th area of his chromosome. We all have one individual band on each side of our long and short arm of our chromosomes.  In my son’s case he has 3, one on his left arm and 2 on his right. All this extra genetic material can manifest into other disorders such as ADHD, ODD, OCD, and mood disorders such as bipolar depression, schizophrenia, and learning disabilities.

My son can also be affected medically with auto immune disorders, spinal growths known as chiarri and a possibility of tumours. I just learned of his diagnosis almost 1.5 years ago which led to the diagnosis of autism level 3 stated in the DSM 5. Which means he’s needing substantial support for resistant and persevasive behaviours.

I will admit when I heard his pediatrician give his diagnoses I cried and I shook so hard that I fell off my chair! I completely lost control while the doctor said she was sorry over and over again. What was she sorry for? Her world didn’t change in an instant? This is my first time writing about it as I had to process it.

In the meantime I’ve gone into my “Mom research mode” and learned more of how to help my son.  I recently met with a geneticist for counselling and she provided me with some more information.  She was impressed that I was aware of so much already. I was left on your own after my son’s paediatrician left her practice so I didn’t have a choice.

I’ve always referred to my son as my SPD (Sensory Processing Disorder) Superhero now he’s my champion. I never knew what his life would hold for him as I held him in my arms when he came into the world. He was a tiny 6 lb, 2 oz bundle of joy with a fighting spirit. Now he’s grown into a strong, independent, precocious, fun loving, six year old boy. He has had a lot to contend with in his young life. Along with his autism and rare diagnoses he also has other disorders.

The first discovery after his assessments was Global Developmental Delay. Meaning he has a severe deficit in two or more motor skills. This label phases out after the age of 5 developmentally as a child ages. My son has a severe recessive speech deficit and moderate expressive language, as well as severe fine motor skills and moderate gross motor skills delay. He’s verbal but needs instructions broken down for him in a way he can understand. All this new information leads to yet another diagnosis of Intellectual Development Delay

For eg: First, Then, and After. Which helps him process things better with his executive functioning skills. He also has asthma and Obstructive Sleep Apnea that’s controlled with medication. He’s a sensory seeker and has sensory processing disorder, in particular Sensory Modulation Disorder. He can’t spin in a circle in one direction for too long as it overstimulates his vestibular sense. I have to make sure he spins clockwise and counter clockwise or he’s crashing into walls and people. When he was a toddler I used to have to duct tape a body pillow to the wall so he wouldn’t injure himself!

His proprioception sense is weaker so I use a lot of visual spatial concepts and cues to help him understand. He gets very visually overstimulated so I use a white board or visuals to help keep him on task. He’s also wearing his glasses in school to help with that. He has also completed a one year developmental therapy contract having a Behavioural Aide and psychologist working with us in our home. As well as an Educational Aide at school and a Community Aide to help with the social and behavioural aspect.

We use a white board inside and outside the home using the first, then, and after sequence of events. We visual cues (tapping body parts), stating the name of each body part in motion, and crossing the midline, and using visual pictures. My son responds very well to all the above as well as repetitive speech. I’ve seen him struggle with leaving the house to happily going on an adventure.

Every Dr’s appointment, geneticist visit, hospital checkup, and ride to school is an adventure for him. The reason why is because I make it this way by using social stories, sentence strips, and role playing to help him motor plan and process the visual and auditory information. We work diligently to not overwhelm or overload him sensory wise. Our life isn’t easy by no stretch of the imagination but it’s manageable and we share love, laughter, learning, and joy.

From the first time he opened his eyes and looked at me I knew it would be him and I against the world. Now with support, education, awareness, and acceptance we’ve found our special needs village and for that we’re grateful.
Welcome to the Voices of Special Needs Blog Hop. A monthly gathering of posts hosted by the Sensory Spectrum and 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 months Voices for Special Needs Blog Hop click Here.

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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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The Haircut

I see the long shaggy hair covering his eyes and he’s bent over trying to put his Batman in his Bat mobile. He’s getting so frustrated because he can’t see what he’s doing and this task is taking too long to figure out. I gently offer to help him and he runs away in anger and slams his door. He’s only four and already acting like a teenager. I pick up his toys, walk to his room and gather him in my arms. 

  
I wrap his blanket around him holding him tight in my Mama bear hug. Deep pressure soothes him and I rock until he stops crying. I brush the hair back from his eyes and I say the dreaded words “oh honey it’s time for a haircut.”

 Soon his body tenses and he’s ready for fight or flight. I rock him and tighten my hold till his fear ridden body is limp in my arms. 
The next day I tell my husband our son needs a haircut. He shakes his head and says “well I don’t want to do it.” Neither of us do it’s a two hour ordeal and the emotions overflow and we’re all stressed. We take turns holding our sweet boy who will turn into a howling banshee any moment. It’s my turn to perform the task of completing a decent haircut. 

I assemble my tools scizzors, buzzer, guards, comb, spray bottle, and a cloth. He will not wear a cape so we strip off his shirt and wrap a towel around him. I place his blanket in a clear plastic bag to protect it but so he’s still able to see it. Next I grab the iPad, thermos of water, and a bag of lollipops. 

I call my husband to help wrangle our son and it’s easier to catch a greased pig at a BBQ! He holds him tightly and I begin wetting down his hair. I’m being very careful to not spray his face at the same time singing his favourite song while his Dad finds him his favourite superheroes on YouTube. I begin to comb his hair and I cautiously snip his bangs. This is not an easy task as I venture close to his eyes. 

I comb his hair out a few more times and move to the sides. I gently approach his ears and I’m holding my breath while I cut around this delicate area. Next I move to the back of his head making sure to work quickly now as he starts to wiggle. I move over to other side and you can hear a pin drop as I cut around the other ear. The hair starts falling and covering his face and blanket in the plastic bag. 

I quickly blow it away and brush off his lap. He starts in with a low growl and I back off completely gently soothing him with my singing.  I carry on only to reach an impasse as he doesn’t want to sit any longer. I bribe him with a lollipop and ask his Daddy to hold him in his blanket bear hug. Instantly he’s soothed and I continue cutting. I’m not a hairstylist I have no professional experience whatsoever. Other than cutting his big brothers hair in the classic “page boy” style.

 I comb out his hair and continue cutting until he gets excited with the video and jerks his head and shoulders around. I narrowly miss stabbing him in the back of the neck! I tag team out with my husband and we trade spots. He plugs in the buzzers and I brush the hair away from our sons face and body. I prepare him for the buzzing sound and hold on to him tight because I know this is going to be a bumpy ride. 

His Dad works quickly and efficiently as I tighten my grip and sing louder overtop of the sound of the buzzers. He’s on my lap wiggling out of my arms and it’s like holding a bag of snakes! We’re almost in tears and we quickly wash his hands and face that are covered in hair. I pick up the hand mirror so he can survey our work and he starts to cry he wants all his hair back. A full sensory meltdown ensues while he can’t process what happened and why I can’t put the hair back. This is the invisible cloak that he wears as he tries to process all eight of his senses. 

I can only imagine what this has felt like for him. As much as we prepare him for haircut time it’s still unbearable. We let him run free and then I change him into his pyjamas while I make him a snack and give him something to drink. He sits at the table singing away between bites and I look at his happy face in awe. Just moments ago I imagined that the clippers felt like hot razors attacking his scalp as his body, brain, and central nervous system were in overload. He finishes up his snack, I wash his hands and face and hug him so tight while telling him how proud I am of him. 

He cuddles up with his Dad and watches a cartoon before storytime. I clean up the mess in the kitchen, sweeping, making lunches, and pour myself a stiff drink. I go downstairs and sit and sip while glancing up at my son and his Dad nestled together in the recliner. My husband says “thank you for being a brave boy for Mommy and Daddy.” 
His eyes well up with tears and he holds his Daddy’s face in his little hands and says “you hurt me Daddy.” I watch my husband’s face crumple and we look at each other and silently agree that this will be the last haircut he ever gets at home. This is our life with Sensory Processing Disorder. 

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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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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My SPD Superhero

  
I don’t sleep a lot I haven’t for a long time. It started out as a child staying up late with my Mom watching old black and white classic movies and grew into an insomnia diagnosis when I was thirteen. Fast forward to my life as a parent, I gave birth to babies that didn’t sleep through the night until they were almost two! Cue sleep deprived Mombie living on caffeine to survive those long days of daylight. I’ve always been comfortable with my company being me and the moonlight but months turn into years and I yearn for a solid nights rest. 
We are a sensory related family my son’s and I all have Sensory Processing Disorder (SPD). I have written about it before on my blog, this is a recent Post.  This leads to having sleep, eating, and feeling comfortable in our skin issues.  Nearly two years ago my youngest son started snoring. Now for a toddler who hasn’t slept through the night consistently this was alarming. He has an open mouth posture, oral fixation, and hypotonia of his jaw but snoring was new to me. I started on a long journey of finding out the why, what, where and how of this new path. 

I went through the channel of seeing my family Doctor who referred me to an ENT (Ears, nose, and throat Doctor) who told me there wasn’t anything he could surgically do for my son because he had a long tongue and he couldn’t see him using a CPAP with a sensory issue! I didn’t take to this lightly and spoke my peace and moved on to seek out other help past the no I was given. There is nothing to make you feel more helpless and hopeless than watching your child stop breathing in your arms! 

I moved away and after a lot of research, prayers, and sleepless nights I found a sleep specialist and a Center that treats children. I’m happy to share I struck gold with this Doctor! I learned more in a twenty minute consult than I did with any other professional. We’ve been seeing her for a year now and she’s been working  amazing feats with my son and has led us on a path to health with a medication regimen, sleep therapy training for his SPD, and now a poly sonogram sleep study. 

  
My son has superhero powers to live with all the conditions he has and more that we’re discovering since he was given the diagnosis of global developmental delay. Which is leading us to a referral for Autism Spectrum Disorder (ASD) to a neuropsychologist.  This sleep study was not easy to prepare for even with a social story to create an expectation and outcome. I didn’t know what to expect even with research done, because I had never experienced this with my son I was so grateful that our sleep technician at the clinic was amazing and walked us both through it.  

As he was seated to get outfitted with sensor pads, the glue that had to be dried with an air compressor, (which wasn’t tolerable for his auditory hypersensitivity) and the extensive amount of wires he was hooked up to, he was as patient as he could be at the age of four. I held my hands over his little sensitive ears and sang really loud over top of the noise. Those wires became connected to a electronic box that became connected to a computer. It was comical to see me running down the hallway to the bathroom  as he was connected and tethered to the portable box. He was mischievously running fast just to see if he could make me trip. My little boy is quite the practical joker!

  I was glad to share in his giggles because it was masking my fear. The worse part was watching the nose clip go up his nostrils and the plastic piece that would hold his mouth open to measure his oxygen saturation. He didn’t like the clip that was placed on his finger so it was changed to something else. He was taped, wrapped with a belt to hold sensors in place and pads were placed on his legs to measure his limb movements and determine if he had restless legs syndrome. I explained all this was being done to help him sleep better and give him superhero powers!

   I pulled every trick out the book I could think of he was dressed as Batman and I wore his mask as Bat Mom. Our sleep tech gave him an Avengers pillow case to sleep on and I gave him his medicine for the night. I told him I loved him and it hurt like hell when he told me he didn’t love me. I knew it was pain, discomfort, and his fear talking but that didn’t make it hurt any less. We read stories until he got drowsy and then he had a bathroom break and off to sleep he went.

  
I stayed across from him listening to every sound he made while our wonderful sleep technician showed me all his vitals on the screen and what was being monitored. I barely slept that night even though I was in the safest place and situation where I could. The next morning he woke up in a great mood considering it was 6 am it was shocking to me! My son is very sensory overloaded when he awakes but he knew he was safe and Bat Mom would be there at his rescue. 
   One of the staff brought in doughnuts and I let my no sweets for breakfast rule slide. He earned those doughnuts and Timbits for all that he endured in one evening! I let him pick what he would have for breakfast and we went to our favourite restaurant for pancakes. He was in his Batman costume which drew some hard stares. I just smiled, I knew they were all looking at how awesome my son, my SPD superhero was. I love him so much and I’m so proud of him. Now we do our best to make sense of his sleep study results of Obstructed Sleep Apnea (OSA)  and seek out another course of action towards sleep filled nights for us all. 

 

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrumand 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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