In the advent of Gavin not medically stable enough to finish out the school year a few things have changed and a few problems have emerged. The most obvious thing that has changed is that Gavin is home everyday.
The school hasn’t finished setting up the visiting tutor just yet.
In light of the shift in the amount of time that Gavin is now home, some problems have developed. For starters, Gavin being home has completely disrupted Emmett’s schedule and shifted the dynamic.
The routine that we struggled so hard to get Emmett onto, has now been thrown out the window because the routine didn’t involve Gavin being home during the day.
Emmett‘s not adjusting very well. The screaming and aggression have significantly increased and Lizze typically gets assaulted at least a few times a day.
The struggle with Emmett is just a piece of the puzzle. The bulk of it is comprised of all the thousands and thousands of pieces that make up the puzzle we call Gavin. I don’t even know what to do anymore because there doesn’t seem to be any rhyme or reason to his behaviors or his medical issues..
The latest medical crisis centers around his autonomic nervous system. Basically, it’s not working correctly. He is on blood pressure medication in order to keep his pressure from crashing, when he sits or stands. It gets worse when he eats because he falls asleep as a result of his blood pressure dropping.
The meds seem to be helping as he hasn’t crashed since he’s been home. He falls asleep all the time but at home, we can accommodate that.
The problem is that until we figure out the exact cause, we can’t do much to address this, aside from treating the symptoms. We don’t know whether to let him sleep the day away or try to keep him active. We give back to Akron Children’s Hospital in a week to learn some of those things.
With all the added stress in the house, of course, Lizze body picks this time to go into the worst fibro flare I think I have ever seen her in.
I just started a new job as a professional blogger of a company that specializes in providing social skills resources to therapists, doctors, special needs teachers and parents. I have deadlines and not enough time to get anything done, especially in light of everything else that’s going on.
It never ceases to amaze me how a single event, like Gavin no longer being able to go to school, would be such a disturbance in the force. 🙁
**Thanks for reading**
-Lost and Tired
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From the outside? Your life is insane and you need/deserve help. No one can do everything. Can't you get some nice aspiring 20-something special ed teacher to come for at least a couple of hours in the afternoon? You'd be able to work or sleep and it might be good for the kids to have a new regular face in the mix. It takes a village, even if you have to pay a few of the villagers.
Are you familiar with the wiggles. Their lead singer Greg Page has Dysautonomia. It took him
Out of work for over 5 years but he claims he’s Learnt to handle it.
It looks like he’s done some websites online
When I search his name and Dysautonomia
Maybe it may give you ideas.
Can you get some sort of in-home help? Even a couple hours a week might allow you to finish all the things you need to get done?
You need to get some help in your home. Are any of your kids on Medicaid or have a Medicaid waiver? Either one of those should provide some home health aides. I only have one kid on the severe end of the spectrum and some days I can hardly get it done, and I have help.
You guys are in my thoughts and prayers. I know what it's like though, Serenity is home almost all the time now because of the school situations. Last week was heck for her though, my son was sick, my husband was sick, and I was out of town. School didn't happen on Wed and she ended up getting a decision to not do end of grade testing with her because her behavior was so out of it. Now that Caleb is back in school, she's fine (except right now cause she has decided to put on her swim suit and that she wants to go outside to play in the sprinkler – the most awesome thing in the world as far as she is concerned). Hope they can figure out Gavin's issues and stabilize him soon.