A mile in my shoes – why this #SpecialNeeds #Dad is Heartbroken, Overwhelmed and Terrified

One of the things that stress me out the most is Gavin’s health problems.  He’s like a walking time bomb that could go off for any reason and at any time. 

We can do things to sorta limit the risks but we can do nothing to eliminate them. 

I wanted to give you a chance to sorta step into my shoes and experience a few minutes of what it’s like to raise a child with severe Autonomic Dysfunction.  What you are about to watch is a brief video from today’s Martial Arts promotion and 8th grade graduation. 

Gavin had a normal morning and wasn’t experiencing any noticeable issues before school today. 

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When the event began around 9:30 am and Gavin walked to his seat at the front of the room, I could see that something wasn’t right.  However, once he sat down he looked better. 

After a few minutes of introductions, it was time for the Martial Arts demo.  This is where the video picks up and the problems become much more obvious. 

My son experiencing Autonomic Dysfunction:

Gavin looks very lethargic, unsteady, disoriented and on the verge of passing out. 

Lizze and I watched him very, very closely and came very close to pulling the plug on the demo for him.  However, we knew how important it was to him that he did this. 

Unfortunately, the reality is that if he’s going to go into a crisis, there’s very little if anything that we can actually do about it. What happens to him is so incredibly rare that there’s almost nothing concrete known about the how’s and why’s.

Anyway, he ended up stabilizing and completing the demo and graduation ceremony. 

It’s important to be very clear as to why this is such a big deal and causes me so much stress.  When a crisis is triggered, his brain basically stops controlling many of his Autonomic functions.  His blood pressure crashes and his heart rate sky rockets in order to try and compensate. 

When this occurs, all that can be done is supportive care.

His life is literally in jeopardy every single time this happens.  We had a really close call about 2 years ago where we almost lost him. This is very serious stuff and it’s extremely stressful as a parent to see him go through this.  It really is heartbreaking, overwhelming and terrifying.
Like I said, we lucked out today and he’s doing okay.  It could have been much much worse. 

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

Update: If you like this post, check out these as well. Click —–> Here <—– for my Top Posts.


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Raynette Jones

i know this is so scary for u

Lost and Tired

Thanks Raynette. Your kinds words are always appreciated.

Carlye Read

My 13 year old daughter is diagnosed with Aspergers, Dysautonomia, ADHD, bipolar, generalized anxiety disorder, dyspraxia….there’s more, but those are the biggies. She has also gone from 115 pounds to 89 pounds in about 8 months and is back wearing children’s size 10. Her last big autonomic flare landed her an ambulance ride because she passed out in the shower, hit her head, neck, and shoulder and inhaled water before we found her unconscious. We also have many school problems and are sitting in summer school because a 504 wasn’t enough and she doesn’t qualify for special education. I’d like to see a study of comorbidity with autism and autonomic dysfunction. We met a 14 year old a few weeks ago with almost the same issues, down to the same meds.

Lost and Tired

Thank you for sharing. It’s a long and unpredictable road. Gavin’s last major crisis almost had him in the PICU. We honestly didn’t think he was going to pull through. It’s so nice to meet you, I’m just sorry it’s under these conditions. Please feel free to contact me if you need to talk.

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