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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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 in the classroom

My son has had a long journey in his five years. He was born a month premature and didn’t open up his eyes for his first five days on the earth. Even back then he knew he was sensory overwhelmed with his welcome to the world. Most Moms have babies crying when they make their exit from the spa into the brightness of a hospital OR. Not my son he was sleeping in my OB’s arms as he was brought over the sheet to check his vitals. 

From that day forward he found his voice and expressed himself fully with the power of his lungs. He was a cuddly baby that never like to be put down to sleep and was rolling back and forth at 4 days old! Then he grew into a bash and crash toddler that scared me with his antics of climbing up a five shelf bookshelf and jumping onto the couch. Now he’s grown up so much I wish time could slow down and I could swaddle that sweet baby he used to be. 

He’s 5 now and recently diagnosed with autism and co-morbidities to watch out for, and attending kindergarten and I have routine  that I do for him in the morning to prepare him for the day. He’s not a morning person after two years with obstructive sleep apnea so every morning is a little more jarring to his central nervous system. We start slow and easy in the morning with the routine of wake up, eat breakfast, get dressed, and get his backpack ready for school. All shown with his visual pictures to keep him on task. 

Regulation 

 He needs to be emotionally and physically regulated with his central nervous system before he steps into his classroom so I have a morning cuddle with him and give him a deep pressure massage to wake up his senses slowly. He then gets fed, dressed, washed, and then coat, shoes, backpack are put on. If he’s feeling antsy I have him jump on his minitramp for 1 minute. That amount of time can balance him out and then crab walks to the door with some heavy work to prepare him for sitting. 

Stimulation

Now that’s he’s awake and ready to start his day he can become overly stimulated by what he sees around him. I help him focus by putting on his glasses so he can single out each object. His classroom is a busy place so I know this cuts down on all the visual distractions. Noise and commotion are difficult input for my son to process so he has his noise cancelling headphones in his backpack to block out the overstimulation. If he doesn’t wear them he will stim and compete with the noise with his vocal power to cancel out the offending auditory trigger. 

Oral Fixation

My son tends to chew on his sleeves, cuffs, collar of his clothes so after he’s dressed I make sure he has his chewlery. He’s a shark and ocean marine life lover so he has his shark on a cord and wears it as a necklace. He doesn’t always like to wear it but I tell him that sharky’s there to help if he feels nervous. It saves his clothes and gives him the sensory input he needs for his low muscle tone in his jaw. 

Motor Planning

He has difficulties with  transitions so I make sure that I use visual supports to keep him on task. First we use his visual picture cards so he can see his morning routine. Then I draw them on the white board in a 3 step format of first, then, after. As he completes each task he erases it feeling accomplished and ready to start his day. 

Zones of Regulation

Each day my son and I will go through the zones of regulation where he will tell me what each colour is to express a feeling or action. When he’s unable to express how he’s feeling verbally he will tell me a colour. 

  • Blue is feeling sad or tired. 
  • Yellow is feeling scared or nervous. 
  • Green is happy and smiling.
  • Red is angry and frustrated. 

Verbal Diahrrea 

My son enjoys talking so I need to show him how to take turns with having a conversation as his receptive language skills are severe. He can have tunnel vision and want to be the only one talking and expressing his thoughts. I have a Popsicle stick that he coloured with one side is red and the other is green. He holds the stick and when it’s green he’s a go for talking. When it’s red then he has to stop and let someone else talk, namely his teacher. 

The visuals keep him on track and help with his slower processing time. We all know the adage it takes a village to raise a child. When you have a child with special needs that village grows. Now we prepare for him to be assessed by the school psychologist so he can qualify for an aid in the classroom. It’s not an easy process because sometimes my son doesn’t want to be organized and given direction so it becomes more of a dance. He takes a step and we each take turns leading. One thing I know that everything we do is to prepare him for success in the classroom. 

Welcome to the Sensory Blog Hop — a monthlygathering 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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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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Living in a sensory overloaded world 

Life isn’t always easy and I make the best of it that I can. I don’t think my life is any worse or any better than anyone else’s, it just is what it is. I have never possessed the Staples magical easy button, but if I did look out world! I do daydream about it occasionally to come up with a working model with creativity and a little wishful thinking on my part. 

I’m a product of my own environment and a lot of time spent in my childhood was loud, confusing, and overwhelming. I came into the world and lived in an incubator for a week while I recovered from being sickly and jaundiced. My Mom had a cold and as a result the Dr took extra precautions with me. This was back in the 70’s when it was perfectly acceptable for Mom’s to stay in the hosiptal longer. Going through my own birth experiences I believe whatever emotion, feeling, thoughts, and drugs for pain management are passed from Mother to baby. 

Without having any personal recollection of my time in the spa I can let my imagination wander and say I must’ve loved it. My jaundice was being taken away under the phototherapy lights, I was warm, comfortable, and it was quiet. As I got older I was a child that thrived in peace and quiet because I saw that my Mom did too. She could fill a room with her twinkling laughter and tell a great joke but she loved the quiet of sitting with a good book and enjoying a nice cup of tea. 

We spent many hours enjoying each other’s company with me wrapped up in a world of make believe with my dolls, Sesame Street, Mr. Dress up and The Friendly Giant as my favourite friends. Whenever it would get noisy with having my siblings home I would retreat to my bed and hide under the covers. I had some certain spots for my quiet time up in a tree, in my blanket fort, and when I was very young I was found one time in the dryer sleeping in the warm and cozy laundry. 

When I needed a sensory break from my environment being too cluttered and confusing I would climb. I was confused for being a monkey on many occasions when someone would ask where I was they would see me climbing the tallest tree or onto the horse stock rack then onto the roof of our house!  I was quite blessed by the hand of God that I didn’t fall off and break my neck or worse! 

Now I’m an adult who still loves to climb and build blanket forts with my kids. I have Sensory Processing Disorder and so do my son’s. It’s not anything I could’ve done to change that outcome since it’s neurological. I’ve read enough in the last two years to help me understand my children’s brains and have seen myself on every page! I was quiet, yet boisterous at times, I preferred to read and write stories, or climb trees, and scrape my knees. Just like any other typical child, yet if my world was to loud, bright, crowded and confusing I’d hide away. 

I read that birth trauma particularly placental complications, is known to be a cause of Sensory Processing Disorder according to the book Out of Sync Child by Carole Stock Kranowitcz. If you’re new to this term and haven’t read my blog I will kindly provide you with a definition. 

Sensory Processing Disorder is Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”

*this definition is provided by the website SPD Foundation.*

There are a lot of different processes with SPD where people are affected in certain ways. I’m very visually stimulated and auditory and tactile hypersensitive. Loud noises bother me, I take everything in while scanning my environment, and there’s certain textures I just won’t touch. I’ve lived with this my whole life and  this is known as Sensory Defensive Disorder. My son’s each have the Sensory avoidance and Sensory seeking behaviours.

 I explain it as follows as we each have a bucket that gets filled with each input throughout our day providing for our eight senses to our central nervous system to our brain.  These senses of touch, taste, smell, hearing, seeing, proprioception, interoception and vestibular. 

Proprioception- meaning ones own individual sense of the relative position of neighboring parts of the body, and strength of effort employed in movement. Yes My youngest son isn’t aware of his body in space, and where that begins and where it ends. So crashing into the wall, toys, or his brother are common, and he’s not aware of it until after the fact.

Interoception -is the sense by which one perceives pain, hunger, bowel/bladder control and the movement of internal organs. So in layman’s terms potty training is a bust as of late; my three year old has awareness but no sense of urge control or the urge to eliminate.

 Vestibular- is the sensory system that provides input about movement and a sense of balance. The brain uses information from the vestibular system in the head, to proprioceptive throughout the body to understand the body’s dynamics and kinematics, which describes the motion of objects or groups of objects, without the consideration of causes of motion. Translation meaning when my youngest son is “stimming,” (stimulating all his senses to seek input in his environment) he will spin for an hour if I let him. I prefer swinging-on actual swings- to regulate my vestibular sense. 

 He’s a “seeker”of all kinds of sensory input. Think of it in terms of having a bucket of water with a hole in the bottom, and it constantly needs to be filled up. The clinical definition is Sensory Modulation Disorder. My oldest son has Sensory Defensive Disorder like me. He has a lot of defensive issues with receiving too much input. 

Picture it as a bucket of water that’s constantly filled, and it’s pouring out all over the floor. His issues are predominantly with auditory, visual, and olfactory senses. It’s a full time job keeping all of us sensory and emotionally regulated, but it’s one I do gladly with the help of noise cancelling headphones, regular occupational, physical,  and speech therapy. 

The one thing I’ve come to realize of this journey in our sensory overloaded world is that it does take a village to raise a child, and if there’s special needs involved it grows in size and heart to provide them with success. I do believe that God only gives me as much as I can handle. Sometimes those days are long and difficult and other days are filled with fun and laughter. I’m blessed that they’re also filled with a lot of love, patience, and kindness, and a strong village. 

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by  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! Want to join in on next month’s Sensory Blog Hop? Click here!


  

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Monday Musings-Christmas in my comfort zone

I’ve always been a traveller during the holidays. Ever since I was four years old and my Mom would have my sister and I for Christmas and my Dad would have us for Boxing Day. This tradition continued for many years until my Dad passed it over to my middle sister and her family. We’re of Ukrainian descent on my Dad’s side so it would be a day consisting of perogie making and eating contests. This was our way of celebrating the Ukrainian Christmas that falls in January. 

My oldest brother always won the record of most perogies eaten at one sitting with fifty-two and our Dad a runner up with forty-nine. I won for the women one year with fourteen eaten and many, many, created in my family’s kitchen. Now that I’m married and have a family of my own I have my own traditions. We do Christmas baking and advent calendars with my kids. I also started the book advent where a new book is unwrapped and read each day up till Christmas. My son’s each get to open a present on Christmas Eve which consists of pyjamas or slippers. This year they each get a family movie night box complete with hot chocolate, DVD, popcorn, and pj’s. 

I’m excited about this new way of celebrating Christmas with my children! I love to see their faces lit up with the joy of decorating the Christmas tree. As well as their amazement when we see how many decorations we piled on that seven foot beauty. We’ve always been the members of our family who lived furthest away but were expected to travel. And so we did just as couple for many years and later as a family of four. My Grandparents and parents were still alive during these Christmases and seeing them was what made my holiday brighter. 

  
After they had passed away in 1991, 1999, 2009, and 2011 our trips back home ceased to happen. It was just too heartbreaking to go back to the same place and see that empty spot at the kitchen table. The last Christmas I had with my Dad my oldest son was two. I remember how special it was to see them together soaking up every precios moment they could together. It was bittersweet as I knew this would be the last time they’d share aholiday together. 

When my Mom had passed I was eight months pregnant with my second son. She had known he was planned for, created, and growing in my belly but never got to meet him or hold him. That last Christmas she spent most of it sleeping as her medication for travel made her very tired. I wasn’t able to travel as I was being watched for complications. The next time I saw her was at her viewing in the church and then her funeral. That wasn’t something I’ve been able to forgive myself for but I know it’s nothing I had control of. In time I will heal and let that go. For now it’s a double edged jagged knife in my heart. That makes it hard to breathe sometimes….

Now my children are growing up so quickly I’d like to freeze time and let them stay little and innocent awhile longer. We travelled to family last year and it took a lot out of us as a whole. It’s not easy to have a busy, loud, bustling, holiday season with sensitive children. Being out of routine, away from their calming and emotionally regulating routine and not sleeping well can lead to sensory overloaded meltdowns. While it’s common for this time of year it’s not always accepted behaviour at one’s home, family relative or not. 

I spent a lot of time outside playing in the snow with my kids. Snowball fights, snowman building, and powder diving kept them happy, calm, and me from losing my ever loving mind! My youngest son with his Sensory Processing Disorder has a lot of food texture issues so I knew he wouldn’t be having the turkey with all the trimmings. No matter how delicious it appeared to be for others he was happy with his peanut butter sandwich and milk. I did not pressure or chastise him for this preference, as this is not how to help him adapt and want to try new foods or food groups. 

Food is not a battle I choose to have with my son. I pick them carefully because at this time of year everything in his environment is a hair trigger to a blow up waiting to happen.  His older brother who’s a Sensory avoider of excess sensory input will cover his ears, beg for quiet time, and get overloaded by the noise and commotion. Then my youngest who’s a seeker of this sensory input who will run, spin, stim, and then fall apart with exhaustion or overload. This is what I refer to as Armageddon implosion, internally they’re struggling so much, and externally they can’t regulate themselves without my help. 

 In 5-4-3-2-1 BOOM 💥 massive meltdown city is where we’re living and it’s not for the weak hearted. This leads to my husband and I watching for the triggers and doing our best to keep them calm or remove them from the situation entirely. That is how we spent last Christmas Eve where I was told my one son needed valium, and my reply was “no he could use some understanding, I’ll take the Valium.” To be honest my wine glass was never empty during that holiday.  We all got to do what we got to do to get through those hellish hours, without judgement. 

Last year was a long, painful, exciting, and exhausting holiday. I got to see family on my husband’s side and mine. My kids were eager to see their aunts and uncles and open up and play with their toys. I was able to sit back and relax and enjoy seeing them happy and regulated around my side of the family. While repeating my mantra there’s no place like home. Because really there isn’t, it’s so rewarding to be able to hang out in your pj’s all day eating popcorn and watching Netflix. I went against my better judgement and did what was expected of me and my kids reacted accordingly. I accept that now, although it was a bitter pill to swallow at the time. 

This year I’m doing what’s best for them and staying home. We just moved and bought our house last year and now after eighteen months we get to have our first Christmas in it! I’m so excited to relax in my pj’s, cook a big turkey with all the trimmings, munch on my holiday baking, and enjoy Christmas movies with my family. I will light a candle for my loved ones who are no longer with us. Yet are now our Christmas angels from heaven sending us love and comfort when we need it the most. I will provide strength to my family and relatives who are walking through the pain of losing their family member as well, and trying to get through the holidays while grieving. 

After all the eating, sharing, and cuddling are done then we’ll roll out of the house after indulging in our holiday feast and go tobogganing and enjoy a bonfire, hot chocolate, and laughter with our friends. I couldn’t be happier about starting to revive this tradition and add some new ones to our family. This year we are travel free, except to the toboggan hill and back. I couldn’t be more happier and excited about revelling in this freedom and joy!  Christmas is where the heart is, and also where my comfort zone resides. 

It’s time for #Mondaymusings and all you have to do is this list of things. 
Write a post sharing your thoughts with us – happy, sad, philosophical, ‘silly’ even. Make it as personal as possible.
Use the hashtag #MondayMusings and link to this post.
Add your link to the linky which you will find either here and on the post of a co-host.
Use our #MondayMusings badge to help other bloggers join in too.

Today’s co-hosts are Happiness and FoodBlogs by EshaEveryday Gyaan thank you for having me in the linkup today. 😃

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The Climb

Life can be an uphill battle where you climb the highest mountain and struggle not to fall off. It also has a funny way of working out, and sometimes you get more than you bargained for. I gave birth to my son a month premature after a very stressful period of grieving for the loss of my Mom. My baby and my other son became my whole purpose of surviving that dark, depressing time. His brother was only four when I had to tell him yet another person he loved had died.
Having a premature baby means so many mindblowing things. First, you have to wrap your brain around the fact that your child is really here! Next, you need to devote every waking minute of getting them healthy enough to take home. I had a son at home to raise and a newborn and he belonged to the hospital until he was a healthy weight. I remember that time like it was yesterday how joyous and stressful it was. The sleep deprived days and nights that followed, as well as all the trips back and forth to the hospital when I was released but my baby wasn’t.

My baby was heavily jaundiced and very sleepy so it was difficult to keep him awake long enough to give him a full feeding. I remember having to test weigh, feed, burp, change his diaper, feed him , then test weigh him again. It was a routine that we followed for nearly two weeks and all I wanted was for my baby to be healthy enough to take home. He never did receive phototherapy even though I saw babies before him able to. It drove me mad with anger as the whites of his eyes were yellow that he was so jaundiced.

Back then all the signs pointed to the fact that something was amiss. He would cry if he wasn’t held snugly skin to skin with me. He loved a tight swaddle but his hands and his feet had to be free. He was undoing his blankets and the nurses kept on saying I wasn’t wrapping him tight enough. I replied “this isn’t my first rodeo so I know how it works.” Little did we know my baby was rolling in his glass bassinet and unravelling the swaddle!

He was only four days old and he still hadn’t opened his eyes. I watched him closely as he didn’t resemble a helpless newborn as his strength was astonishing! He would thrash about in his tiny little home and he seemed happy with the thud it would produce in sound. When he was sleeping he would sleep so soundly I would check to see if he was breathing.

I would venture to his crib side and just sit there in the rocking chair watching him and marvelling at his beauty. He would wake up roll towards me and put his hand on the glass. He didn’t like the bright lights or loud noises that would generate with a room full of babies and people. He thrived on being held snugly and loved to be burped as he would release the biggest and loudest full grown man gas bubbles!

I was in awe and scared for my son as he would get his jaundice test daily and one time the nurse had me hold his leg while she lanced his foot! This was the worst experience as he would thrash about and I would beg her to put him under the photo lights in the incubator. He was strong I was afraid he would hurt himself, yet my pleas fell on deaf ears. Everything pointed to the fact that he was a sensory overloaded child. He would be so quiet then wail for hours. It was almost as if he loved to hear his shrill cry.

The day came where I could finally take him home and he had to pass a few tests before leaving. I remember feeling anxious, excited, and scared of the prospect of taking my tiny baby home. When the maternity health nurse arrived the next day she gave him a thorough exam. She had asked me if I had any concerns or comments because it had been four years since I had a baby at home. I replied:

“I only had one and then I said watch” while I placed my baby on the floor with a blanket.

We then proceeded to see my newborn 11 day old baby roll back and forth from right to left! She was in awe as much as I was and I asked her was this “normal”behaviour for a tiny baby. Her response was:

“we always advise parents to keep their baby’s belted and secure on the change table. Even placing one hand on them just in case. Your baby is not the norm he’s the just in case I spoke of.”

Life with my son’s added up to long days and longer nights and plenty of love. My baby wanted to held 24/7 and I spent a lot of time sleeping in a rocking chair. He also was pacifier dependent and would eat every 45 minutes in a given day. If he was cluster feeding it was less and I was shedding my baby weight quickly. He loved the deep pressure football nursing hold while he was snug to my body. Soft fuzzy blankets rubbed on his skin made him coo, and the feeling of a tremendous “man burp”, and being shushed beside his cheek would lull him to sleep.

When it came to time to introduce solid foods to him he put up such a fuss. Everything had to be mixed with carrots or sweet potatoes. I made all my baby food and he would turn his nose up about the stews, squash, and peas. When he got older and ventured into cubed finger foods he would refuse certain vegetables and fruits. He ate a lot bananas and carrots as they are the only foods he wouldn’t cry over. By the time he was 18 months he was eating five foods and saying two words strung together. By two he had a very limited vocabulary and a small assortment of foods he would eat.

I made the call of getting him assessed for his developmental milestones. I read and researched a lot and came across some information on sensory disorders. I made the referral to a child development agency and found a developmental Pediatrician. That led to the discovery that my son fit the profile of having Sensory Processing Disorder. In particular Sensory Modulation Disorder and was seeking out sensory input to gather the messages in his daily environment from his central nervous system to relay it to his brain.

I had heard of SPD as my close friends daughter was diagnosed with it as well as autism. Now it was affecting our lives as my son was rapidly giving me grey hair with his seeking behaviours. By climbing five shelf bookshelves and jumping onto the couch, then jumping off stairs falling, cutting his head open and crying because of the blood running into his eyes! I took on the role of Mom PHD while I researched ways I could help and to stop him from hurting himself.

His pain threshold wasn’t something I could understand at all. As his older brother could have an injury like a stubbed toe, and you could hear him for miles with his reaction. My youngest son is now a preschooler with a diagnosis of Sensory Processing Disorder and Global Developmental Delay. He now has a therapy team in place with an OT (Occupational Therapist) PT (Physical Therapist) and Speech and Language Pathologist (SLP). I discovered in all the research that I’ve done that early intervention is the key to coping and strengthening neuropathways to form new information and skills in the brain.

He also has an Educational Aid that works with him at preschool. In the course of a two months he’s had a ploy sonogram, genetic testing, EEG, and next week an MRI. He was found to have severe Obstructive Sleep Apnea, and I’m currently awaiting the results of his EEG. He has endured it all like the fighter he is from birth. He’s taught me more about what matters in life and they are  family, love, and acceptance. And what doesn’t matter judgement, deadlines, or a neat as pin home. I know whatever trial we have next to face we’ll solider on through it, and the climb has been worth every moment to helping him live a better more balanced life.

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! Want to join in on next month’s Sensory Blog Hop? Click here!

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http://www.inlinkz.com/new/view.php?id=587639

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Wearing my heart on my sleeve 

I’ve always been an emotional person the wear my heart on my sleeve kind of gal. There’s times where I think I need to have a thicker skin or put my heart away so I don’t get so easily hurt. It comes part and parcel with being empathic I feel people’s feelings, and I can “touch” people’s energy. I know when someone isn’t good for me or my loved ones and I can stay clear. 

I do my best to give people the benefit of the doubtand not judge a book by its cover. It will still happen to me and someone I love, that’s the way of the world unfortunately. Today was just like any other day before preschool filled with excitement an anticipation.  My son loves going to school and he wears and shows his feelings with his whole body. He was so excited to stomp up the stairs and count with me. He loves seeing his teachers and playing with his favourite toys there.  For the last month him and I have considered this a safe, fun, and educational place. Today though something happened and I’m still trying to process it. 

I have something brewing in my mind and my heart. If I don’t get it out I think I will combust! I was sure as I mulled it over to see how I could’ve handled it differently it would evolve into a blog post at some point. Today I was waiting with my son for preschool to start. There was a couple of families there and a little girl was staring at my son. He was standing there stomping as it’s his new thing that he does to feel comfortable in his environment, to gain sensory input. It’s an eclosed narrow hallway so his stomping is quite loud with its sound vibrations. 

I asked him to please quiet his feet inside and a classmate of his looked at him and announced to her Mom that he was crazy. The Mom (who did not acknowledge me besides with nervous laughter) said to another parent at that age crazy is good. I stood there stupefied, angry, and hurt for my son. I told him you’re awesome and don’t let anyone change that! My son isn’t crazy he’s very busy and full of kinetic energy and must move to learn. He has Sensory Processing Disorder #SPD and this how his eight senses react to sensory input. 

We all know we have our five basic senses of touch, taste, sight, hearing, sound, and smell. There’s many more types of senses but I’ll focus on the other three I was referring to:

  1. Propriocepetion- gives you the ability to know where your body is in space within your environment in relation to your other body parts. Think of the song Head, shoulders, knees, and toes. 
  2.  Equilibrioception- relates to our vestibular sense that’s found in the inner ear. This sensory sense is all about our ability to balance and have agility. 
  3. Interoception- relates to our body’s sensory system to know when we’re hungry, thirsty, or the urge to eliminate. 

My son is constantly seeking sensory input as all these senses build up inside his brain, body, and central nervous system and cause a traffic jam. Some of his senses are strong and some are weak and how he needs to seek out input looks different to everybody.

 This misguided observation we encountered didn’t bother my son at all. He doesn’t see himself any differently from other kids. He continued stomping while I stood there stewing in my furiousness for this hurtful remark. He made music with his feet, all be it loud music and made a little girl dance. Then that started a chain reaction and another classmate started twirling and he was still smiling and stomping. 

Although I saw his happiness I felt my heart crack for my child. He’s not different he’s different abled and is receiving therapy from his team so that he can function better in a world that can at times misunderstand and judge him. On Oct. 8 th it’s Sensory Processing Disorder Awareness please spread the love, awareness, and educate for SPD. 

   
  

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