J-Bear and Me

learning to navigate the world, j-bear style

Tag: struggles

Candle in a Hurricane

It has been a long, hard summer.

The problems started in the spring. Brooklyn got so sick, then on June 14th she returned to 4 Paws for Ability. She is still there today. The turmoil that caused for J is powerful. He has been extremely aware of where I am and what I am doing since then, allowing no other to put him to bed unless I am physically not there… and even then, it is only when he is at his grandparents that it is allowed. He is stressed about routine changes and about things he trusts to be there just not being there. There are not words said to express this, it manifests in near all he does.

Now, the start of kindergarten presents more changes and challenges. This, the uncertainty about what will happen with Brooklyn, the fact he is getting his 6 year molars early and all that fun stuff has combined into a perfect storm. I am fighting to not just keep my own candle lit in a hurricane but to also keep his from burning all around him. His pain turns into meltdowns. His fear turns into meltdowns. His heartache is loud, gut wrenching and soul ripping to witness.

The whole time it takes all that I have within me to just tell him I am here, that I love him, that I will always be there for him and that we will be okay somehow. This is not the person he is. This is not the charming, adventurous, sweet, compassionate, gentle and caring little boy talking. This is anguish talking; fear and anger and sorrow and confusion all meshed together into this horrible wretched beast that plagues him without relief. His world as he knew it was upended, and it continues changing, and the work we do to warn and prepare him only goes so far when one has a taste of loss in their mouth.

I try not to talk about meltdowns a lot because how fair is that of me to do so? I do not photograph them. I do not video them*. I do not record them because “that’s real”. Those are his lowest points… I would never want someone transcribing every detail of my worst moments, I can’t do that to him. Yet, here I am, acknowledging they do happen and that we are struggling and struggling hard right now. It does not help that he caught a back to school bug either, but that’s honestly the least of his worries.

Every morning though I wake up to him being eager to hug and letting me know that my little boy is right there, ready to try again with the new day before him. He tries, so I try too. There may be more upsets to his apple cart in the near future but, all things willing, we will finally get him to a calmer, more comfortable place very very very soon. I apologize for being vague, the moment I have concrete facts I’ll happily share them as I always do.

Dark Sides

When I go silent it’s typically because what I have on my mind might be hard to write.

You see, parts of this journey aren’t for the public to consume. I try to keep them private, and most of them I do. This one though, it’s tough. Do I hide the truth of our experience or do I share some of it so that other parents know that hey, they are not alone, or that other autistic people know that hey, there are people who don’t demonize?

We’ve entered a stage that when my son melts down, he lashes out. That’s easy to pass off considering his tender young age but it’s what happens. For a child of his size, he is strong. He belted me across the cheek with a small die-cast Thomas train a few days ago and I still bear a bruise and scratch.

This is where awareness becomes key: Understanding what happened, understanding why it happened and of the utmost importance understanding that there is a stark separation between reflexive actions and intentional.

My son did not stand there, contemplate what to do and make the executive decision to bruise someone. If you know J, the idea he could ever do that would just seem as likely as seeing an elephant sprout wings and fly. It’s hard to explain this to people, how episodes like this can happen, because they’ve never had these moments while I have.

I know he was so panicked and so overwhelmed at the moment he did it that he wasn’t seeing me. He was feeling endangered, sad, frightened, angry… He was feeling a confusing and upsetting jumble of emotions. This isn’t speculation, this is the tale as it was written in the moment. It was all there in his sounds, actions and reactions. And I was struck. And it hurt, I won’t lie. I was stunned by the blow… But moments later, he was shoving himself into my arms, burying his head against me and seeking squeezes for comfort.

Panic, fear, dismay, anger, horror, confusion… These are powerful things. We live in a world of overwhelming stimuli if you  have any single sensitivity, now imagine being wired so that you have many, while being largely desensitized in other areas. It’s easy for him to get overwhelmed. This is going to happen. He is going to lash out again during the journey from now to adulthood. It’s going to take time, care, love and patience to get him to a point where he learns coping mechanisms that help him to be highly less likely to find himself in such a terrible place.

I don’t want to paint rainbows and fairy tales about our life, but I do want to paint hope. He and his peers deserve that, as do all of us. It’s not an easy road but it is a worthy road, a road that will lead to an amazing journey and one I am keen to see more of. Some days he’ll wear casts from jumping on beds and others, I’ll wear bruises from Thomas trains but it all heals and we’ll both be just fine.

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