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. ❤️

Autism and my family’s journey 

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

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

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

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

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

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

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

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

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

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

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

From the first time he opened his eyes and looked at me I knew it would be him and I against the world. Now with support, education, awareness, and acceptance we’ve found our special needs village and for that we’re grateful.
Welcome to the Voices of Special Needs Blog Hop. A monthly gathering of posts hosted by the Sensory Spectrum and Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo. From Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next months Voices for Special Needs Blog Hop click Here.

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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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