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. ❤️

A Mother’s guilt

I’m at my wits end with my oldest son. He said he had a sore throat so I let him stay home from school. The rules are rest, rehydrate, and relax. He had helped clean up the basement so I allowed him a movie with his little brother. I’m upstairs cleaning, laundry, dishes and I go to check on him and he’s downstairs playing video games. I walk into the room and he’s pretending to be sleeping!!!! I told him get up and go to bed. He starts to argue that he was having quiet time because his little brother didn’t want to watch a movie.

So I sent him to bed and I continued folding laundry. Then I can hear him out of his room. I’m ready to lose it I’ve sent him to bed twice and he’s come back out. First he was playing hockey with the Mad dog so I said get to bed! He says I’m hungry; then get your food and get to bed!!!! So he says forget it I’ll just starve you don’t care! So then he’s there for 10 minutes and he comes back out again to ask his brother to go downstairs to watch a movie. Get the $@@% to bed now I bellow!!!!

What is wrong with my kid? He won’t listen, he doesn’t respect me, then he tells me he’s getting yelled at school by five people. And one is supposedly his teacher. Well I’ll be addressing this and I will be sending him to school tomorrow because if I don’t I might just duct tape his mouth shut!!!!!
I don’t know where I went wrong we used to be so close. Then I was so sick and sad when I was pregnant with his brother. I carry a lot guilt because my Mom died then I had my baby five weeks later.

Due to the premature birth he had to stay in the hospitals NICU. When I was finally realized after five days, I still went back and forth to the hospital to care for my baby. This is when I feel the disconnect happened. My son was grieving the loss of my Mom, me not being there, and then a little brother who was sick. What had happened in his little world was too much so he turned to his Dad as his saviour and protector. That’s when it all changed between us.

His attitude changed towards me and jealously set in because I was always with my baby. Even though he adored his baby brother. It didn’t matter how much that new love was blossoming and growing, he had lost a part of his Mom. I had to be strong, stoic, and a rock for my children. Meanwhile I was dying and falling apart into little broken, jagged pieces. My heart was shattered I lost my one and only one and I felt like a part of me had died too! Not something a four year boy could understand with his precious heart. So I put my grief on hold to deal with his.

I thought I was doing the right thing as I struggled with intense grief of my own, sleep deprivation, and adjusting to an anti depressant. I didn’t want to be that parent that checked out when my kids needed me the most. It was bound to happen, as I just felt like I was a medicated brain and a body barely able to function. I honestly don’t know how I got through that difficult time. Grief recovery, family, friends, my husband and the love of my sons all played a role.

Life within that little bubble of calm helped me exist. As my body and my brain began to connect as I adjusted to my medication. But my little boy changed as his brother grew up. He got more abrasive with me, his angry tantrums became longer, and I went into research mode. If I don’t understand something I will read until I do. I read books, listened to lectures, attending parenting workshops. In order to understand what had happened to my son. I wish I had looked more into neurology than maybe I could see the early signs of his brain changing.

The ADHD behaviours, dyspraxia, and Sensory Integration disorder were there. He was just so much like me sensitive with an explosive temper that I just saw pain, grief, and jealously. This is when the switch happened, and when I had to fill out recent questionnaires about these behaviours it was hard to hold back the tears. I cried for that little boy who lost his Grandma, Mom, and gained a baby brother. I cried for my lack of understanding, the turmoil, and stress that cyclones around me.

And most of all I cried for that broken relationship between a Mother and her first born. I pray I can repair it before it’s too late and I lose his love and kindness forever. That’s a Mother’s guilt always wearing my heart on the outside of my body. So here I am today parenting through the pain and loving myself and my family with everything I have. Praying for that change to patch my oldest son’s heart back together. That’s Motherhood both beautiful with the moments of cherished gazes and spoken words of I love you. And crushing defeat and frustrating when those words turn to you don’t care, you don’t love me. I put my eyes on the prize and slowly, but carefully walk that tightrope of love and hate for myself.

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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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