Jsack's Mom's Blog

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

This could be heaven, or this could be hell

on January 20, 2015

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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12 responses to “This could be heaven, or this could be hell

  1. sweetpea2love says:

    Long hugs, with the music on low, until your heart feels the music right down to your toes. We dance, spinning around until everything that troubles you is a blur. Only the strength in your body remains to conquer another day. {{{Hugs my dear}}}

    Take care from Laura ~

    Liked by 1 person

  2. Ameena k.g says:

    You are still super mom! ❤ and you know, being able to actually write it all down and share it is strength. Stay strong ❤ wishing you and your “little man” all the very best.

    Liked by 1 person

  3. I cannot say I understand your struggle because I have don’t. I learn more with each and every post all of you Supermom’s post about your struggles with these challenging diagnoses. I can say that my heart goes out to you and I so admire you and all the strength you have. I hope your spring returns soon and am so glad you write about it. Just know that even those of us who do not know your exact experience think of you and pray for your and your family! ❤

    Liked by 1 person

    • jsackmom says:

      Thank you my sweet Lassie. I really appreciate it I’m learning too. If all the information I absorb will help me be a better advocate for my kids than that’s a gift. I need to grieve, patch up my heart, and keep fighting for my sons. Thank you for your love and kindness. 💗

      Like

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