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. ❤️

#Mondaymusings-Lets talk about mental health on #Bellletstalkday

 
I have a story to share I always have. I have a big heart and a big vocabulary and I’m always up for a honest, open discussion. Yet the one thing that always silenced me was my depression. To speak of it meant a horrible feeling of shame that washed over me. I have struggled with the stigma of it since I was very young. I was four years old when my parents separated and with that brought an immense sadness. 

I had no control of it but I was glad to see the fighting stop in my daily life. There were still tears, prayers, and long heart to heart talks but the hurtful words thrown about so carelessly were gone. My Dad took on another life and family and my Mom was forced to make a life as a single parent to two little girls who needed her. She struggled with mental health too, sleeping at odd hours of the day, angry outbursts, tear filled days and nights as her heart was broken over her failed marriage. 

I saw it all, heard the stories, and did my best to comfort her. Being empathic I could feel every emotion and it was like a double edge sword living with this pain. I was so young and impressionable and yet I was growing wise to the ways of the world. I grew up like any other typical kid living in this  existence as I fought with the sadness and anger that would overtake my heart. The world was too loud, confusing, chaotic, and busy. I didn’t know how to cope so I turned to prayer, songs, and my faithful books. 

I grew into a sullen teenager and battled with anyone who would talk to me. My poor Mom didn’t know what to do and so we attended family therapy. I soon started having nightmares as triggers from my childhood came back to haunt me. I would go days on end not sleeping which means my Mom did do. I was finally diagnosed with clinical Depression and Insomnia 

I refused medication as I had such a fear of being drugged into what I call the “Ritalin generation.” It seemed like any child who couldn’t sit still, thought outside the box, and expressed a volatile opinion was put on the token drug of choice. I wasn’t going to be a statistic so I chose to take a more natural route. 

My Mom supported me with this as I changed my nutrition plan, got more exercise, and took Valerian and other herbs for my lack of sleeping pattern. It was a dark and confusing time in my life and I coped with it the best I could. I soon matured into an adult and had years of journals that commemorates that confusing chaotic time in my life. As I grew older graduated and attended college my mental health issues came back full force. The stress of deadlines, securing a student loan to attend school, and maintain a relationship took it’s toll. At the age of twenty I was diagnosed with Generalized Anxiety Disorder.

I also experienced a lot of death in my life losing both my Grandparents, parents, and my step sister all before I was the age of forty. I suffered with Post Partum Depression which I had with both of my babies and it was dark, devastating tunnel of grief and despair. What I hadn’t know that it was being overshadowed by Sensory Processing Disorder. I would come to know that when I took the journey with my children to a diagnosis.  Who both have two types of SPD, (also known formerly as Sensory Integration and Sensory Dysfunction Disorder) Sensory Defensive Disorder which means avoiding all sensory input to the central nervous system and  Sensory Modulation Disorder which is the opposite, it’s the seeking out of all sensory input to the central nervous system. 

 

Clara Hughes

 
I’ve learned a lot as a Mom to children with complex needs and I’m now referred to as a walking medical dictionary by my therapist. I’ve come to know from my experience that being a special needs parent is not for the faint at heart. We’re all struggling in our ways with parenting, making our marriages a priority, and trying to carve out some me time. Some of us struggle, swear, drink, and eat too much. I believe others do too they just hide it better. I still have another leg of my journey to take with my children as more letters of the alphabet are discovered with each diagnostic test and assessment. Since I’ve introduced therapy with a psychologist, a psychiatrist, occupational, physical therapists,  and speech and language pathologist their future is looking brighter with early intervention. 

 

Clara Hughes speaking candidly about her mental health

 
I advocate strongly on their behalf and my own and I share this glimpse into our lives for #Bellletstalkday. This is a mental health initiative in my country Canada and for every talk, text, tweet, and share Bell will donate five cents to Canadian Mental Health. Last year the campaign raised over $500,000 and I had the fortunate experience of meeting one of the spokespersons former two time Olympian Clara Hughes. 

Please share, talk, text, and tweet the hashtag #Bellletstalkday to erase the stigma of mental health and bring it into the spotlight than having it shrouded in darkness and fear. One random act of kindness can do so much to help others like one ripple across the water that can create a wave of understanding. 

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. Today’s co-hosts are Everyday Gyaan and Living My Imperfect Life

Use our #MondayMusings badge to help other bloggers join in too.


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Writer’s Quotes Wednesdays and #Bewow

Inspiration finds me in the most opportune times. I talk about and study neuroscience as the research captures my fascination. I’m never at a shortage of knowledge or picturesque opportunities for growth as I fill my days with wonderful words from poets, philanthropists, personal development specialists, free thinkers, and listening and sharing with the young and amazing minds of my children. Today is one of those days where the words flow, the ideas form, and creativity is ignited. Thank you for sharing this moment with me today as I submit my meme to Silver Threading and #Bewow linkup. Please follow the link and be inspired yourself. ❤️

  

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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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 I know what I’m fighting for, my peace of mind

I have been in a journey for the last three years. It’s been a long hard battle with my youngest child to discover what I always thought, he has a neurological disorder. I have known as a premature baby he would have developmental delays. He was speech delayed and that was something I started working on since his birth. I read stories, described my daily activities, and sang to him all the time. His first words were Mama, Dada, hi, bye, and Baba (for brother). 

I was happy he was able to say these small words at 18 months. I was using sign language with him at a 12 months, but he only used a few signs for food, sorry, thank you, and happy. When it came to pronunciation is where he struggled the most at 2 years old. So I worked with him turning b’s into d’s and emphasizing the ways words sounded. I went through the process of registering him for evaluation when he was 2.5 years old. My Dr. gave me some pamphlets, and it was my health nurse that let me know about a child development agency I could contact. 

So far my son has had two family doctors, a pediatrician, developmental pediatrician, an ENT, and a children’s sleep specialist. He has also worked with a child development councillor, occupational therapist, and speech and language therapist. Because the first pediatrician didn’t classify him as having ASD we weren’t offered any help. We were moving to a new province so I could access resources there. Here we are another year into our journey and I have him re-evaluated for autism. He tests low for that criteria, but higher for ADHD. 

Since he’s only four, children in Canada aren’t tested till they reach the age of six. I’ve filled out enough paperwork, blood tests, and questionnaires to fill a filing cabinet! Even though my son has been delayed in some skills he has reached them. His recent accomplishments have been becoming potty trained. We worked on this for a year establishing sensory awareness so he would know what his body needed to do. I jumped for joy when he was able to catch a balloon followed by a ball on his birthday.  He also started dressing himself and putting on his own shoes on the proper feet. 

If his pants end up on backwards as well as his underwear I still celebrate his accomplishments. After filling out new paperwork I feel that these huge accomplishments have been negated. Due to having a delay his fine motor and gross motor skills have been affected. This has led to a diagnosis of global development delay. To hear those words in the office hit my heart like an out of control freight train. Knocking me off balance in this carefully, constructed, world we’ve built to keep him calm and regulated with his sensory integration disorder. 

Now I’m given a list of OT’s (Occupational therapists) to contact to get a consult. I’ve been told he needs OT, PT, (physical therapy) and SLP (speech and language therapy) immediately. I have been his Mom OT, PT, and SLP for the last eighteen months. Now I have to step aside and let the professionals do their work. This is so hard giving up this control of the life we have. I knew my son couldn’t hold a pencil properly so I have him practice drawing letters and numbers in sugar, to get the feel of the movements. 

I also found out he can’t balance on either foot, jump with two feet together 20 inches. I didn’t see these as detriments just something that needed fine tuning. So I started doing yoga with him to help him work on his balance. Which is due to a weaker vestibular sense affecting his inner ear and brain. Instead of jumping two footed I had him skip instead. I wanted and needed him to feel proud of these developments instead of being told he was just delayed. We have been a strong team working, playing, and discovering new and exciting things. 

This new frontier that we’re embarking on is scary one. His thyroid levels (TSH)  are higher than normal so he has to be tested every three months in case the Free T4 (affecting development) are out of their expected range. It’s known as sub clinical hypothyroidism and a definition that basically means “don’t worry till both TSH and Free T4 are high.” Global Developmemtal Delay can be caused by many factors such as fetal alcohol spectrum disorder FASD (caused by a Mother drinking excessively during her pregnancy), a genetic defect known as Down’s Syndrome, Fragile X syndrome Frag X (which is an inherited cognitive impairment Disoder). It can also be caused by medical problems encountered with prematurity, and no known cause. 

I can rule out FASD, I had a healthy pregnancy I was just very sick throughout my first trimester. My son doesn’t have Down’s syndrome as I had no markers for it in my genetic testing. He was born one month premature after my one and only beloved Mama, died in my eighth month. My pediatrician thinks he may have Frag X and the only way we can determine that is with genetic testing. 

I have put that on hold for now since that’s not a decision I can make for him as a young child. Once that test is administered it follows a person for the rest of their life. It can affect him applying for life insurance. Once the blood test determines whether someone has Frag X or not, those results always have to disclosed. If my son is a candidate for this impairment he got it from me. Only a Mother can pass it along to the male, and a Father can pass it along to a female. I have felt enough guilt in my life due to his premature birth. I can’t make a heavy decision like this that will affect him for his lifetime! 

I’ve spent a few sleepless nights going over this again and again until my sleep deprived brain scream enough I can’t take it anymore! He is being tested for allergies to see if that’s the cause of his sleep disorder he was diagnosed with last year. After those pending results we will have to do a private sleep clinic. I can only imagine how stressful that will be with his sensory disorder. Being hooked up to machines to monitor his every move and watched all night while I’m by his side. I already get anxious and feel heart palpitations coming on just thinking about it. 

I don’t even know how to talk about this so its just easier to write about it. I don’t have many people in my life that understand all these conditions and disorders. And if I did I moved away from them, which leaves me floating adrift in a lonely sea of doubt and anxiety. I know what I’ve been fighting for all these months, it’s my peace of mind. It’s to know that my son will get the resources and services he needs to prepare him for preschool and beyond. This is a very precarious time as the end of the school year approaches for my oldest son. My husband and I are determined to give them an amazing summer holiday as we were moving last year. And really the last two weeks were fun when we took time off from unpacking. Now we’re settled in our new home and province, and we’re going to be tourists and go on an adventure of discovery and fabulous fun! 

Now I know I’ll also be interviewing OT’s, setting up funding applications, and preparing my son for preschool. As well as my oldest son for his new adventure into the next grade. I know what all the sleepless, stress filled, long nights of staring at the vast emptiness as my tears cloud my vision are for. It’s to see light at the end of the long, dark, windy, tunnel. And if I can’t see it then  I’m getting a shovel and digging underneath, until I see what I so desperately need to lift me up out of this pit I’ve stumbled into. 

This has been my Sunday confession with More Than Cheese and Beer please check out her confession, anonymous ones on her Facebook page, and all the other talent who link up. Thank you. 💝

 

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#1000 Speak Compassion-nurturing 

 At this moment in time I could use some nurturing. My heart has suffered from being judged, my body from pushing it to the limit of injury, my soul from putting myself last on the list of life’s priorities. It’s been my own doing, I put myself out there and recieved ridicule and embarrassment. I allowed it to hurt my heart and make me feel cheap, dirty, and ashamed. There is a thing about being too honest especially on social media.

I started a new workout routine as I’ve been living with chronic pain for the last five years. And slowly it’s grinding away at all the wonderful things I’ve accomplished over that time. The nurturing place where I housed my children and now my back is full of white hot pain if I do too much. Lifting my child who is showing all the signs of a sensory meltdown as he runs through a parking lot. Carrying him to bed after he’s so wound up from seeking sensory input all day he crashes in my arms on the couch.

Picking him up and cradling him like my little Joey and I’m his kangaroo Mama keeping him safe from a world that’s too loud, busy, bright, and at the same time beautiful in it’s simplicities and complexities. I exercise to keep myself fit, healthy, and fabulous. I started a new workout routine and matched the instructor for move for move. No matter how fast or extreme it would be in the long run. What the end result was an aggravated old back injury from a bulging disk, and not being able to walk properly for three days!!! What was I thinking I asked myself as I had to hobble around with a cane and parent from my couch?!

I wasn’t thinking about my age that’s for sure. I was thinking of who I was before when I was the fitness instructor with seventeen years experience. Who gave those intense workouts and also participated in them. It’s been a humbling experience as I recently started a fitness challenge and I’m on the sidelines cheering everybody on. I have an invitation to start a free one week bootcamp in my town. I look at each day mocking me and my lack of flexibility. How is it possible after ten years of teaching I could become so inflexible? Easy enough I allowed my mind to become that way being a right fighter, and my body became rigid and immobile.

I need to nurture that part of my myself that makes me feel whole again. I write, read, whine onto my digital paper and drink copious amounts of wine to dull my pain. Who knows of this push and pull existence that I put myself through time and  time again. It’s you my dear readers who have followed along with me on my journey through heartache, grief, self loathing, and sometimes redemption. I lay myself bare and venture out into the world when it seems to be less cold, hard, and judgemental. This is my life as a Mom with children with special needs.

You can’t see my son’s conditions but if you push them to the limit they’ll bleed through with their reactions to noise, over stimulus, and disapproving stares. One has a disorder called Sensory Avoidance. I refer to it as his needs are like a bucket of water and everyone puts in a cup throughout his day. When he’s home from school his sensory bucket is overflowing. and he needs to empty it out and self tegilate with calm and quiet time. I give him this time to decompress as I know it’s essential to his psyche and mental health!


My other son has the opposite disorder he is a seeker of sensory input and it’s referred to as Sensory Modulation. His condition I refer to as having an empty bucket that he fills with cups of water all day long with every interaction, noise, and stimulus. Each time his bucket is almost full he dumps it out and has to start all over again. So this is the push and pull of my son’s existence. One wants to avoid all contact until he’s regulated and able to fill up his bucket. The other is constantly dumping it out and finding new ways to fill it!

They both empty my patience bucket on a regular basis, and I need to fill it back up again with things that help. Like quiet time to myself, being able to read, write, soak in a bubble bath until  enveloped in the softeness and luxury. Closing my bedroom door each night and cuddling into my love my husband, my soft place to fall. He holds me and nurtures me and my hearts love bucket is full of self worth, respect, consciousness, and unconditional love. And I’m refreshed and restored and able to face another day. Whether it’s full of fighting, auditory hyper sensitives, food texture issues, sensory seeking, or sensory avoiding.

We all need to be loved, respected, accepted, loved, and nurtured. Please take that time to give your body, mind, and soul are crying out for. Don’t be like me who pushes and pulls into the core of my existence till my broken, weary, sleep deprived shell of a human body can’t take it anymore. Find those ties that bind you to the ones you love, absorb their love and strength, full that love bucket, and be more than, better than, stronger than the pain that threatens to grind you down. Love, nuture, take the steps to self care, and truly cherish that reflection that stares back at you from the mirror of your life.

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Open 

Trigger alert: If you’re suffering from any mental health issues pertaining to cutting or suicide. Proceed to read with caution. I discuss both in text openly. 

My life is an open book I’ve acted like I’ve had together but I really don’t. I’ve found out it takes a village to raise a child. And how lonely life can be when you don’t have a village. I’ve been open about not feeling like an adequate parent, good wife, or being a lousy friend. I have retreated into my world of words and writing, and have tried to make sense of the chaos before me. I’ve advocated for mine and my children’s mental health and have been told to hurry up and wait. Last week after an epic blow up between my oldest son and I, I put all my fears aside and phoned the mental office office. I was told to come down between the hours of 11 am to 3 pm and someone would have a meet and greet with me. 

This is how mental health is dealt with in my province. You’re set up to meet with someone who greets you and sees if you meet the criteria for obtaining services. So I went down there last Friday only to be told the Doctors aren’t seeing anymore walk ins today. That’s the worst lunch bag let down for the week. After talking my son into agreeing he does need help I leave empty handed. Today after battling with him to get up and go to school he decides not to go. I can’t deal with it after being up late myself with his brother having nightmares. I go back to bed, only to be woken up and blamed by my oldest for not going to school.

 I tell him just go eat and get dressed you’ll only be a little late. Then the fight begins that I failed him yet again, and he’s not walking into school late! I get a much anticipated call from my respite worker and I end up telling her everything that I didn’t get to tell her yesterday, with both of my children being home. My Captain (my oldest son, if you’re new to my blog) has been off for a week of school. This has been due to a teachers convention and after eight days of constant battling I NEED A BREAK. Yesterday I drive around in a new neighbourhood looking for a birthday party he was supposed to attend. I couldn’t find the location and my GPS was zero help.

 So I only had respite for a short amount of time as I had my youngest at home. I came home feeling defeated and tried to throw myself into busy ness of housekeeping so as to not start yet another arguement. There’s always something brewing on the horizon and then it came time to get ready for hockey practice. I asked my Captain to get his gear ready, while I quietly and quickly got his brother and I ready to go. We were set to leave when the comments started we’re going to be late, I wish Dad was here, I don’t want to go to hockey. I’ve been walking the thin parenting line between crazy and sane and I blew up and said get out and get your gear in the truck. He refused so I threw his bag on the lawn. Then I proceed to chase my youngest son down the block as he just wants to run away from all the noise. In the midst of my incessant parenting tantrum I lose my keys so I’m frantically looking for them.  

I find my back up set but it doesn’t allow me to lock my door with the key. Useless I know but key fobs are expensive to replace. So my crazy train is loaded up and we arrive at practice. Yes we’re five minutes late, and I just want to run away and hide somewhere. On the way home after practice I encounter a near accident as a racing truck passes five vehicles and is on coming into my lane!  I’ve got my music cranked and I’m singing Paradise by the Dashboard light. When the part of the song sung by the female lead Patti Russo comes on and says Stop right there, a voice inside my head screams the same. So I slow down and head towards the ditch just in time to see this truck fly past me and into the other lane. 

I’m literally shaking as I get home and start preparing dinner for my kids. I listen to them outside chatting while they gaze at the stars. Soon it’s bedtime and I settle in trying to process my day.  Thinking about everything crammed in my brain, it took me a long time to stop shaking and fall asleep last night. Hearing the alarm go off at 7 am after maybe four hours of sleep is like a jackhammer in my head. This morning when my son refused to go to school I said fine you don’t go to school then you go talk to a therapist. I arrive at the office only to be told they are full with walk ins. I don’t take this well at all, I complain you told me this last week and now you just opened up and your full? I have and will always be the squeaky wheel who gets the grease so I continue to triade. The receptionist sees I’m not leaving so she phones the office down the hallway to let them know I’m there.  

I walk over there with my shrieking sensory child who just wants to go home and explain I want to see someone. I’m once again told I can’t and to come back tomorrow. Well the quickest way to ignite the Irish fire inside of me is to tell me I can’t do something. This is unacceptable for urgent care should I be a cutter or slit my wrists would that get me seen faster? That line of questioning and behaviour got me seen faster than taking no for an answer. I have a therapist come to meet me who says I have a few minutes of her time. So I proceed to get my kids in the office while they play with Lego. So I tell her the quickest way to get help is to act crazy. She appears taken back at my honesty, so I spew on and say I’m an open book what do you want to know? I introduce her to my kids and proceed to tell her of the life we’re living.

 I’m told I’ve come to the right place, I’m very well versed, and educated. In another time and place had I known if I’d be walking this path to mental health, I would’ve studied to be an neurologist. Anything to do with the brain fascinates me, neurological disorders, psychiatric illness, all the labels and letters associated with mental illness.  I research about them all and I just want to know more. Being educated, articulate, well versed, helps me as an advocate for mine and my children’s mental health helps everyone. Now I walk a different journey to allowing this help to transform my family. From chaos to calm, from anger to happiness, from power struggles to peace. I’ve found the quickest way to get help is to stop acting like I have it altogether. So why do I tell you all this today? Well it’s simple I live my life like a open book, I can’t hide away from it anymore welcome to my book of life. Today I start to write a new chapter of hope, help, and resolution. I really think my guardian angel drinks if I was her I would too. Cheers to you Mom and thank you for saving our lives. ❤️

This has been my submission to Ash’s Sunday Confessions on http://www.morethancheeseandbeer.com. Please check out her story, the anonymous confessions, and all the other talent who link up. Thank you for following along on my journey. 💓

Today I’m linking up with http://silverliningmama.com for her conquer challenge for the month of February. 

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This could be heaven, or this could be hell

The floor feels cool on my skin as I lay here with my cheek pressed into it. I’m lying here trying to ground myself, regulate my senses, and to stop the earth from spinning. I go to rise but I can’t move, my tear stained face is stuck to the linoleum so I’ll lay here longer. I’m trying to process everything that was said, all the questions I was asked, how many times I tried to get my son to stop opening the door to escape.

I had a meeting with a new pediatrician and she was assessing my sons for developmental disorders. First my youngest didn’t even want to stay in the office. He was scared and kept running away. He wasn’t interested in the toys or snacks I brought he just wanted to leave. As the meeting went on he felt my energy becoming more and more tense because he was at the point where he was stimming.

So he rolls on the floor seeking sensory input in this tiny office. So I gather him up and bounce him on my knees and encourage to play with some toys. This is the first Ped clinic I’ve seen without toys. The Dr brings in a magnetic wall picture and he plays with that for awhile. With his sensory condition he doesn’t sit still at all and its worst in new situations. He grows bored of the picture and tries to climb up onto the counter. I proceed to pick him up and rock as I would at home. Giving him deep pressure hugs the whole time and whispering I love you you’re safe in his ear over and over again.

My heart is aching as I feel his heart beat like a rapid fire drum solo. My hands are clenched around his back and I’m not letting him go till he’s ready. Then it’s time for the Dr to give him an exam and he won’t let her touch him. So we settle for him sitting on the bed and more he relaxes with a massage and input that his senses are craving. Then my husband arrives and we tag team out, and he takes the littlest home and I take the eldest in for his appointment.

I finish up with the Dr with my youngest information and we start my oldest sons questionnaire. As ten minutes ticks by , I can sense and see his boredom. So I hand him my phone to keep him occupied. He’s slouching and then hunched over building his mine craft world as I’m fully into the questions. Then my battery dies and he’s back to frustration and a loud audible sigh escaped his lips. Well that’s enough for the Dr to say something about his disrespect not being appreciated.

I’m mortified I wonder who is this child and what have you done with mine? My Captain who’s polite, respectful to his elders and obeys authority. Well not today he’s too tired, bored, and frustrated as he has to endure hearing me talking about him. Which always makes me uncomfortable, but if I don’t he won’t get the help he needs. So she starts asking him questions, as he plays with the fidget in his hands keeping him calm and regulated.

He talks about his nightmares, anxiety about new friends turning into enemies, Pokemon cards, and being bullied in his new school. My heart grows heavier with each admission of his truth. I have to hold myself together, as I feel I could crumble like powdery snow on a warm winter day. We reach the end of our appointment and make another for the physical exam. I receive information and paperwork and drive us home. Inside the truck I firmly but gently ask him how he could correct his behavior for his next visit.

He tells me he’s sad all the time, and always does the wrong thing and it’s all his fault. Then the tears start to flow, both his and mine. As he pours out his heart about how he can’t get his brain to stop and then he says the wrong thing. I tell him I understand and I love him, followed by his admonishment that I don’t get it, and no I don’t! I don’t fight or power struggle I just let my silent tears fall down my face. We arrive home in time to quickly get him ready for hockey practice.

I’m grabbing his gear and getting him dressed and he’s yelling and saying he’s tired, he doesn’t want to go, leave me alone etc. If his team didn’t need him for an upcoming tournament I would’ve let him stay home. But I knew he’d feel better after moving, occupational therapy induced exercise, and being with his team mates. After he leaves with his Dad, I set my little one up with a movie. I proceed to close my door and sit on my floor and cry.

So this brings me back to where I am lying, while my tears fall into a puddle on the floor. I’m trying to process it all as the Dr said my sons require further testing for what she suspects is ASD, OCD, ODD, and ADHD. The letters start to swim around in my head as I struggle to lift myself off of the sticky linoleum. I know whatever the outcome is my sons are more than a label put on them. Letters+a label = equals funding. So I’m able to put them into cutting edge programs like Brain Gym, workshops about art therapy, and neurology. And to also cover travel expenses back and forth to appointments.

So that’s a good thing, it’s just hearing the words and applying them to my precious kids doesn’t compute with me. I think back to when my youngest Mad dog (I’m using nicknames I assure you to protect their identities) was called a mystery when I had him assessed last year. He was given the label of Sensory Modulation Disorder (seeker of sensory input). Further testing could be required if I had wished. So here we are today finding out something I’ve known all along and just got confirmation.

I need something desperately to get back the respring in my step. To make me hit the ground running, and onto my next advocating adventure. Something to make me smile, laugh, and feel happy that I’m breathing the God given air into my lungs. But today my super Mom cape is in the dryer and I’m feeling weak and vulnerable. I need to grieve for the regular life I envisioned for my sons.

And as I dry my tears, I know I have my bunker punk family rallying and supporting me. As all those awesome autism and neurotypical parents have given me hope, information, guidance, understanding, and most of all their love. For this support will lead me to taking it one day at a time. While I retrace my thoughts back to my happy place, and get the spring back into my step. 💖

This has been my take on the daily prompt Re-springing your step

Re-springing Your Step

as part of my Blogging 101 assignment. Thank you for being here and sharing my journey. 💗

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*Image used with permission from http://www.simpleeserene.com. Photo found on SubbotinaAnna/shutterstock.com

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Life with my sensitive child

Tomorrow I have a meeting and I’m feeling very nervous about it. I’m asking for help for my son. I’ve been his Mom OT (occupational therapist) for a year now. I’ve wrote about his sensory “diet” before with exercise, deep pressure massage, skin brushing, and joint compressions. I’ve recently started using essentials oils and adding in more vitamins, and Epsom salt baths. I also use PECS (picture example cards) for transitions. He knows when we’re leaving for school, choices to make after we’re home play Legos, Color, cartoons etc. He knows what we do for quiet time, read, cuddle, yoga, or IPad time. He knows when his meal, snack, and bath times are. Now this may sound very structured and read that I’m a anal retentive control freak. I assure you this is not the case, he needs to know everything about his daily life as change is his nemesis. For some people change is comfortable, adaptable, and like an elixir in life. Not to my son, with his SPD (Sensory Processing Disorder) it’s one of the most terrifying things to experience. With the traffic jam in his brain while trying to process his five senses, as well as the proprioceptive and vestibular ones, is a lot for him to take in. He gets exhausted as I can see how he struggles with a world that can be too indifferent, too loud, too bright, and too busy for him to live in. I keep him regulated as much as I can, and when I know there’s going to be a change I prepare him with social stories, plenty of positive feedback, and sensory tools like fidgets and things for him to safely chew. When we recently went away for the weekend we talked extensively about our trip beforehand. He knew we would drive there, stay at a hotel, go swimming, and watch hockey. When we arrived at the hotel my husband and our oldest son went for lunch. We decided to go swimming since we ate at the hockey game. I got our luggage upstairs and to the door and walked in. My sweet sensitive boy wouldn’t come, in he told me he was scared and stayed in the hall. I had to sit and hold him, assure him he was safe and I would protect him. As he’s very sensory he’s also highly sensitive to the spirit world and sees what others don’t. So it took me a half an hour to talk him into the room after blessing it and asking whoever was there to please go. If you’re still reading you’re probably thinking get that Mom a Xanax STAT!!! I get my son more than any other person on the planet, being empathic I feel what he sees. And sometimes I’ll see it too if I’m tuned right in. After all was settled we went for a swim and soak in the hot tub. This is just what the doctor ordered as we both felt refreshed and rejuvenated. So back to the room to shower and change and go for dinner. We walked over to McDonalds home of holy grail of chicken nuggets. The only chicken my son will eat by the way. We get our food and sit down to eat and then my son is upset. He wants to have his drink which I say after and I substitute for his water. Yes I get your typical 3 year old reaction of Noooooooo!!!! Then he just escalates from there as this McD’s doesn’t look like ours back home, why can’t he play, followed by crying and whining. As his frustration grows I’m almost packed up our food and ready to go. This time he’s in full sensory overload and the whole restaurant is there to watch the show! I’m dodging slaps, punches, and scratches, and yes I’m frustrated as well. I pick up my son and ask him to use his words and tell me how he feels. He says “I’m so scared Mommy I want to go home!” So back to the hotel we go, I held him in my arms and hugged him so tight. My heart was breaking for my sweet boy as he shared with me all the things he was scared of. Too many transitions in one day, tired, travelling, hungry, boom sensory overload was the result. So after I had him regulated and calm we watched cartoons and used my Sesame Street app called Breathe to help. Which brings me to the meeting I have tomorrow, I’m asking for help with my sons needs. It’s not easy for me to ask for assistance but yet here I am doing it. I’m scared of handing over the reins of his primary care but I’m also exhausted. I’m tired of being the Mom who’s worn out, with bags under my eyes that now are a set of luggage! I’m tired of being the only one advocating and protecting my bear cubs. I’m tired of everyone around me getting more sleep than me, and telling me I look tired!!!! One thing you NEVER $@@@%# say to a sleep deprived Mombie!!! I’m tired of staying up late after my sons naps out of sheer exhaustion. I’m tired of feeling lonely and missing feeling special, for a date night with my husband. I’m bone tired of having to sleep with one eye and one ear open, when the dreaded Obstructive sleep apnea takes over and my son wakes up scared, coughing, because he’s stopped breathing. I feel like the most impatient, misunderstood, pathetic, angry Mom. Who in my worst moments swears and yells at the my precious sons when my patient bucket is empty. Most of all I’m tired of struggling and surviving on vapors of sleep. It’s hard for me to accept some days this is my life, because I wanted to be so much for my children. So I’m asking for help for the Calvary to come in and join me on my team of no sleep or “barely enough to function sleep.” It breaks me to hear my son snoring and knowing that soon he’ll stop breathing. And I will run to him while he’s crying and alone for those moments. I feel like the oldest saddest woman, who’s only nice thing I do for myself was go see my favorite band Fleetwood Mac in concert. And it took nearly 2 years to do that, since the last concert of theirs. So that leaves me lying awake, watching my son sleeping peacefully, and praying it will continue throughout the night. And my heart lies here on my sleeve open, exposed, and bleeding, while my tears silently fall on my sons cheek.

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*Image used with permission from the wonderful http://www.bravegirlsclub.com*

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