Jsack's Mom's Blog

Sharing my heart, truth, and love, one story at a time. ❤️

It takes a village

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

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

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

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

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

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

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

3. After he prints the word with his pencil.

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

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

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

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

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

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

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You can’t put a square peg into a round hole

img_0990-1I breathed a sigh of relief as the minutes ticked down on the month of November. December 1 st was a Friday so we always celebrate TGIF with a family movie night or a hockey game. November was dark, cold, tiring and trying for our family. My youngest son with autism and other co-morbidities has been struggling in his classroom. Not only there but at home too attempting to get him out of bed, fed, dressed and out the door before the bell rings has become a long drawn out process.

We live where the time zone doesn’t change and it looks like midnight at 7 am when my alarm’s going off. I don’t want to get out of bed either as it’s cold, dark, and I know what I’m going to be dealing with in the next few minutes of alertness. I have enlisted the help of my sons Special Education resource teacher, his Educational Aide and his classroom teacher to work with us on this current obstacle. Last month I saw him fighting, kicking, and pushing open the door while I’m attempting to leave after I drop him off. I’ve had to tear myself away from his grasp as I stand there and attempt to regulate him. He’s in full sensory overload and he hasn’t even got his coat off yet!

A tentative plan was put in place by his OT to have him continue with classroom routine and then have a body break. I had been told it was important to give him this structure. I actually laughed albeit bitterly, as I explained his whole life is structured or there’s utter chaos in his world. Last week I had sat down with my son and told him on weekends we don’t have to talk about school unless her wanted too. Then on Sunday we would go through his school agenda and get his backpack ready to go and read a social story to prepare him. He then told he “I hate school!”

I have to admit it shocked me as this isn’t a word I allow to be used in the home. But when he’s on the playground he’s exposed to a lot more then I know. I then tentatively asked me why he was so upset and the conversation is as follows.

Me-“Why don’t you want to go to school?”

Son- “I hate it there!”

Me- “Why don’t you like it?”

Son- “Because school is hard and it makes my brain hurt.”

Me-…. “I’m so sorry son, I’ll get you all the help you need.”

As I’ve been watching him fall apart the feelings of Mom guilt wash over me like toxic sludge. I throw myself into project after project hoping I can distract myself from this feeling of incompleteness and hopelessness. Will my son always struggle with the basic tasks of getting up and dressing himself. Will he always need more time, visuals, and reminders and extra minutes in his day to process all the information? The answer is yes he has autism and a rare genetic chromosomal disorder as well as other co-morbidities that he’s diagnosed with or may be in the future.

I don’t even know how to describe how relieved I am when I’m alone. When I can sit and not think or feel my anxiety monsters crawling inside my brain telling me I’m not good enough and to try harder at life. I spend everyday thinking, planning, organizing and doing my best to stay 10 steps ahead of a sensory meltdown. Which is worse than a typical temper tantrum trust me on that! Nothing in my life is typical my headspace, my thoughts, even what I have to do on a daily basis to get my kids out the door for school! No matter how many therapists I see for myself or my kids you can’t stick a square peg into a round hole.

Every day it’s the struggle when my alarm goes off and the beeping drives me out of bed stumbling and cursing as I find my way to the bathroom. Then I wake up my kids with repeated requests to get out of bed and start the day. The deep pressure massage and heavy work that I need to do with my youngest son to even get him to move is methodical and precise. When we do finally get out the door and I drop one son off at his school and take a deep breath to drop off the other. I listen to endless whining and crying not to drop my sweet boy off at school.

This takes its toll on me watching him crumble to the floor and beg me not to leave when I drop him off for the day. The behavioural issues that result from his central nervous system being overloaded from a loud and busy classroom are the hardest to deal with. Now that he’s become aware of his differences compared to his peers. The separation anxiety he lives with daily as he clings to my leg reminds me of my own past experience with my Mom. How my son cries at night begging me not to send him to school. And the promises I make him to protect him and keep him safe even from his worry monster as I hug him so close to my heart.

The therapists that expect my son to follow the rules and routines of the classroom don’t know how difficult it is for him. Expecting his atypical brain to comprehend and follow along in a neurotypical environment is like teaching him another language. The use of the visuals, fidgets, headphones, chewlery for his anxiety and even wearing his glasses will send him into a combative mode. Why you may ask, because then everyone can see he’s different abled then them.

He misses his life from before his friends, teachers, and experiences. I don’t blame him I miss those things to yet we need to persevere because him and I are in this together. Autism can be lonely and special needs parenting is definitely the hardest and yet rewarding thing I’ve ever done. The celebrations for milestones reached are joyous and the jealousy for others who don’t get it or don’t deal with this daily is detrimental to my self worth. My son is struggling and my heart’s breaking and I’ll do everything I can to see him smile and like school again. I won’t give up but I will give in to my tears when I can no longer keep them in or hide behind my “I’m fine smile.”Then I pick myself up, put on my teflon armour and face another day. My son is the square peg who I congratulate and celebrate how beautiful and complex his way of thinking is. He encourages me to keep on advocating for his special needs as I’m teaching him the world needs to be more inclusive for him and others like him.

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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Changes

Hello my dear readers how are you all today? My life has been a series of changes and relocations. My family and I moved out to the prairies in the middle of Canada 4 months ago. We’ve been adapting to the climate (it’s drier and colder here) so the cold and flu season has been wrecking havoc on our immune systems. We’ve had an early snowfall and it just keeps coming by the bucketfuls.

As I’ve been making my house a home I’ve also been advocating for educational services for my youngest son with autism. That has been a journey I’ve been on since he was a toddler and one that can leave me elated and depleted all at once. The intervention therapists in this school district do more assessments then hands on work with children. Which is something I’m not used to as my son had a wonderful team at his previous schools.

My son has a wonderful teacher, educational aide and special needs education resource teacher. The Occupational, Speech and Language Pathologist and Physio therapists all work on a consultative basis. They put together a written plan and then the aide and the resource teacher implement it.

They’ve started using visuals in the classroom which are a great support for my son. He needs to see those pictures in order to process what he needs to do for his school day. He’s been doing well as he’s a more visual than auditory learner. There’s also been a few hiccups which means I stay at school and help him and his aide work through it.

He will become overstimulated in an environment that is noisy and will react by stimming (running, yelling, spinning to get sensory input) His central nervous system will go into sensory overload as his Sensory Processing Disorder causes a traffic jam inside his brain and nerves while he’s processing all the input. Then he needs help immediately to help him cope while nerve impulses are firing off inside his brain.

I’m a team player I will do what I can to assess and alleviate the situation and then tag his aide to carry on. It’s so hard to leave my sweet boy when he’s in conflict with his environment and senses yet I know he’s in great hands. I will be relieved after the consultations are done with the professionals and he can start his therapies. He’s been working with his resource teacher and aide on an ongoing basis but to have a Individual Intervention Plan (IIP) will help us all.

I continue to support my oldest son with his school and hockey. He loves his new teacher and is making friends and fitting in well with his student led classroom. I’ve had an opportunity to meet with his teacher and attend some games and practices and meet some of the other parents. I take my hockey Mom role to heart and cheer my son and his team on and off the ice. Yet I’m split in the middle as I have to be aware of how his little brother is reacting to his environment. If it’s too loud, busy and confusing then a sensory meltdown is forthcoming.

I call it the Mom pie syndrome everyone gets a piece then I bake a new one for the next day. Lately I’ve been finding that I don’t have a piece left for me so I need to take my self care into account. I want to be more social yet I deal with my anxiety and tend to shy away from initiating that.

As someone who has both the mobsters of self worth and self esteem knocking on my mind’s door depression and anxiety take the drivers seat while I’m the passenger along for the ride. It’s a vicious cycle I live with and keep on persevering through it. Taking steps slowly and surely is the key to my social success. I’ve done the opposite and have crashed on through like a proverbial bull in a China shop and suffered the after affects.

We spent our first Halloween in our community and I got to meet a lot of my new neighbours. Everyone was kind and welcoming and I felt a surge of feelings of relief when I engaged with them. It’s amazing what cute kids and all of us in costumes will do to raise my confidence.

This year I was a pirate, my oldest a Pumpkin man complete with a suit, top hat, sunglasses and a cane. My youngest was a skeleton complete with a head mask and my husband was a Spider man complete with a suit and a skull top hat. We take turns every year one to stay home and hand out candy and the other to go trick or treating. It was my turn to go out with our sons, even though it was cold they collected quite a haul of candy as we introduced ourselves to our neighbourhood.

Every year we decorate our house and yard as we’re big fans of Halloween and fun ensues as my family tries to out scare each other . The day after the snowfall happened and I was rushing to get decorations inside the garage before they fell apart! I accomplished my task and then shovelled snow until I couldn’t feel my hands and feet then I spent the afternoon underneath my electric blanket till school was out.

As I continue to unpack and organize I also have been decluttering. This is not an easy task for me yet a necessary one. I’ve given away more boxes to the thrift store that I’ve made a new friend there! I’ve thrown away broken toys, picture frames, paperwork and junk in the last two months than I have in my whole life! I want to live my life more simply and being clutter free is the first step to that happiness.

When I can live with this simplicity I’m better off for it. I do better, react better, and feel freer. It’s taken me 5 relocations with 4 being job transfers, to come to this moment of clarity. I’m grateful for it and my family who have lived through it with me and my many “I may need it one day boxes.”

Family is my cornerstone in life- they guide and teach me as much as I do with them. With each move, new home and the changes of scenery the one thing that’s constant is our loving bond.

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A view from the window

Sadie looked wistfully out the window from her comfy chair dreaming of the day she could ride the horses in the field at her neighbours farm.

She knew that the brace she wore to correct her twisted spine from scoliosis would impede her riding ability.

She cursed that wretched brace but was grateful for it as well so that she could walk properly.

Without it she would be sidewinding and shaking up the tumbleweeds like a rattlesnake.

He knew of her love of horses and looking skyward he sent up a prayer that one day she would ride one.

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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 his chromosome. 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, and 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 a 1.5 years ago which led to the diagnosis of autism level 3 stated in the DSM 5 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. 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 yet was impressed that I was aware of so much already. When you’re left on your own after my son’s pediatrician left her practice I didn’t have a choice. I’ve always referred to him as my SPD 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 had a severe deficit in two or more motor skills. He has a severe recessive speech deficit and moderate expressive language. As well severe fine motor skills delay and moderate gross motor skills He’s verbal but needs instructions broken down for him in a way he can understand. 

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. His propriception 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 at homemade outside the home using the first, then, and after sequence of events. Also using visual cues (tapping body parts, stating the name of each body part in motion,and crossing the midline) and 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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Jeanine Lebsack ep 83

Source: Jeanine Lebsack ep 83

Join me while I share the trials and tribulations of my life as a special needs parent. Special thanks to Lose the Cape-podcast for busy Moms for the wonderful opportunity. ❤

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Mother’s Day Beyond the Clouds

Source: Mother’s Day Beyond the Clouds

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You’re my favourite hello, and my saddest goodbye

Gone-your voice that used to fill the room with laughter echoing off of the walls is gone. Never to be heard again, or feel that warm energy emanating from your soul. 

Gone- to live a new life amongst the angels, free of worry, pain, and the strife of the worlds sorrows. There's nothing more but my memories to hold onto and squeeze all the joy and happiness from until it's a worn out rag. 

Gone- 3 deaths in a space of 5 long grief filled weeks, how much more can my poor broken heart take? Every loss reminds me of my own loving parents and Grandparents. Who taught me to be strong in the face of adversity and face my challenges with an iron fist, and to smash any obstacles that stood in my way. 

Gone-the beauty of the storyteller forever silenced and only the loved ones to carry on those tales of family tree origins and how we came to be from our ancestors. Your words that still echo in my ears to this day. While I come to terms with the final goodbye. 

Gone- I look to the stars watching for a sign from you to let me know you've made your journey to be with God. Are you dancing in heaven with a spring in your step from cloud to cloud or singing with the angels chorus of glory and exaltation? 

Gone- to sit on a cloud and not only ponder lifes meaning but to truly find it and realize how much you were trapped on earth in the vessel known as your body. 

Gone-While I feel the need to express how in your body you were somebody special to me. Never will I look upon your face feeling that kindness when I looked at your smile. Never will I look into those sparkling eyes that held wonderment and mischief of a joke you were wanting to tell. 

Gone- to a place amongst the clouds to learn, laugh, and love again while I sit her trapped in my melancholy mood. Seeing your loved ones and being reunited with a heartfelt love of gratitude that shines brighter than a thousand suns. 

Gone-from this earthly plane and lighting up the heavens, but not from my heart. No one will take your place in my dreams, prayers, and aura. 

Gone-One thing that will always remain is my love for you as steadfast as the mountains. Life has to go on even when I don't want it to. Could the earth stop spinning long enough for me to recover? 

Gone-the memories are a comfort at this woeful time yet I'd trade them all in to hear your voice saying how are you. 

Gone-Is the gift our friendship and the special nickname you had for me. I will go on, time will pass, yet it won't heal my gaping wounds. 

Gone-Grief doesn't have an expiry date and I will feel all the feelings and cry all the tears until I'm spent and exhausted of trying to appear as if I'm fine

Gone- I'm not ok, fine, or feel the least bit that I can cope with so much loss. As I sit here in the dark pouring out my heart. I'm crying now and bleeding tears of anguish and pain. 

Gone-There's so much more to say, to write, to spin into poetry. But I'm tired of holding up this armor that I've put around myself. To protect me from lifes cruelties and another possible death. 

Gone-I will have my love and admiration for you until I breathe my last breath and see you again. 

Gone-You're my favourite hello and my saddest goodbye.

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