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. ❤️

Ten Things of Thankful Successes and Springing Ahead

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I will start out my thankful list by being really honest I loathe the spring time change. I love to sleep, day time naps especially since my youngest son has severe sleep apnea we’re awaiting surgery to repair. Knowing it was coming around the corner of losing that hour filled me a sense of dread. I had intended to change my clocks then my son woke up and needed some cuddles. By the time I got him settled we both fell asleep. Waking up Sunday on my couch and disoriented because I had no idea what time it was is quite a trip. I persevered to get through the day as it was beautiful and sunny and I couldn’t waste a moment of it. So onto to the thankfuls with your co-host of TTOT Fly on our Chicken Coop Wall
I’m thinking of my successes this week on this Sunday where I take 20 minutes for me to write this blog, tuck my kids into bed and get in one last kiss. They’re my biggest successes in life as well maintaining a loving relationship with their Dad. Today was a beautiful sunny day so we went to spend it at the zoo. Laughter, sunshine, and watching the Penguins swim after my happy boys as they played made me giggle and smile. The biggest successes in life are made up of who I love and who loves me. 💖

 

Penguins get very hot when they swim so they cool off by fanning their wings out at their sides.

 
I’m thankful that my family therapy program is going well and there’s been a lot of progress with adjusting and changing troublesome behaviours. I feel more confident about keeping myself in check and not overreacting and letting a trigger affect my progress with a difficult situation. I’m noticing the good and ignoring minor behaviours and dealing with major ones immediately. 

I’m thankful for the consistency, calm approach, and compassion that I’ve been able to tap into have been the greatest keys to our families success. We’ve been having regular family meetings and checking in with each other to talk about our feelings. Each of us feels heard and understood and then we usually play a board game or Wii after. 

  
I’m thankful for being consistent and getting four workouts in as well as some resistance training and yoga to build and stretch out my overworked body. It’s been a long slow recovery with my neck injury in January due to how stressed my central nervous system was. I’m happy to say I’m back to feeling 90 % better and know I’ll be back to more cardio and strength training soon. 

I’m thankful I did take the time to rest and recuperate when my body said enough. I’m not always the best at slowing down because the routine and nervous energy has been something I’ve thrived on. I’m learning daily what I can and can’t do and running on empty in my food fuel or emotional tanks is detrimental to my well being. 

  
I’m thankful that I started a new parenting group and I’ve met some like minded parents looking for strategies and I’m refreshing skills that I haven’t been using. I also attend a support group for parents of anxious kids and it’s been a tremendous support and lifeline for my family and I. One major thing I’ve learned is how difficult it is to have my mind and body in a fight or flight response. As well as anxiety lies to us and we are the truth of our feelings. Taking the six second approach to engage my senses I’m able to help myself and my children go from intelligent brain to primal. 

I’m thankful for beautiful weather and I got outside to do walking everyday this week. The sunshine’s an elixir in my life and I feel so much better if I get my vitamin D fix. It always feels better when I walk and I’m able to clear my head when life situations overwhelm me. I see and hear messages that I wouldn’t by being preoccupied. 

 

Angel wings in the sky

 
This week marked a very special occasion as my cousin’s daughter turned one! I’ve written more about her story last year Here and the challenges this sweet baby girl faced. With an incredible, tenacious, Mom with the strength of a warrior guiding her through life and a patient hard working Dad as well a ton of love and support I see nothing but success for Amazing Grace. 

 

Photo courteousy Love by Krista Evans and used with permission

 
I’m thankful that my son had a fun game to round out his hockey season. Both Atom and Novice teams were matched up and the kids had a blast playing against each other. Next season most of them will be reunited on the sane team as Atoms. I’ve come to know a few of these players and their families and my family and I feel blessed to have made some amazing friends. 

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I’m thankful for visiting with my friend, chatting over wine, and enjoying some relaxation in my hot tub. As a special needs parent my days are busy with therapy lessons, school, hockey, and medical appointments. When I put those things all aside and focus on my self care the results are positive for all my family. I feel better knowing I’m taking care of myself and my happiness and that makes me a better person, Mom, wife, and sister! 

I’m thankful that I dropped all of the housework chores and took advantage of a beautiful +15 sunny day. We went to the zoo and had a fabulous time. I watched my kids interacting with the Canadian geese who were almost domesticated with how tame they were. A few of the exhibits were closed due to maintenance and the gorilla family were celebrating a new baby. We were able to see a live cam of the Mama and her little baby cuddling. It melted my heart and made me think of how I cuddled my own growing precious son’s. We’re really not that much different from animal kind and human kind when we all are united in love. 

A Mother’s love 💖

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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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