When you have a child like Gavin, life is exceptionally challenging. Any one of his individual challenges would be difficult on most families. The combination of his physical and mental health issues makes things……um…what’s another word for impossible?
Even after having moved Gavin to his grandparents life has gotten any less challenges.
What a lot of people don’t understand is that when you send a child away because of safety issues, like we did, you often times simply trade one problem for another one.
I know that seems counterintuitive but it’s so very true.
Here’s a fee examples of what I mean.
Since moving Gavin out of our house, his health issues have been infinitely more difficult to manage. Without the first hand knowledge of his symptoms, we never know for sure what’s going on and how to address it.
Because of the time and energy involved in caring for Gavin, we have literally tapped out the last of our help. Between my parents and Lizze’s parents, someone always has Gavin. The ones that don’t have him at any given time, are usually pretty spent and aren’t able to offer much in the way of help outside of what they are already doing.
I can’t blame them. I mean, Gavin can be absolutely exhausting, even when he’s doing okay.
The major downside is that the other boys seem to get cut off from their grandparents because Gavin takes up so much of their time and energy.
This is really hard on the boys because they simply don’t understand.
This also translated into almost no breaks for Lizze and I because there’s nowhere for the boys to go. We won’t send them to a strangers house and my siblings are all hands off aunts and uncles.
We can’t even send Gavin anywhere else because of how complex he is. With his medical issues, no one wants the liability and if we could get him someplace, they aren’t qualified to deal with his life threatening health issues that can literally pop up at any moment and often without any warning.
This is really one of those lose lose situations that come along with being a special needs parent.
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I know Gavin has recently been having an increase in difficult behaviors and low threshold for anything remotely stressful. Did you check to see if it could be side effects of the water pills he takes? I know this sounds weird, but one of the moms in my PANDAS support group has a daughter with dysautonomia, and she was having an increase in aggression, tantrums, difficult behavior. They found out it was side effects to the water pill she was taking, called Diamox
I know you said no strangers, but does Ohio offer respite care? Those people are highly qualified individuals trained to handle disabilities. Both Mental and physical. You get to interview them first, and they spend some time with the kids, while you watch, and you can always say no if you don’t like them. I’m in PA and they offer state funded respite care, so you don’t pay a dime. Maybe you could look into it? Just a thought. And as always, your family is in my prayers!
I agree. My oldest is medically complex, and very frightening at times. We’ve had bus drivers scared he died on the bus. My family is 100% hands off, and the only input they like to offer is how it’s too much for them. But in 7 years, I have found two people I trus enough to help out. It is not easy, and not fun. But do-able. You’re infinitely blessed by having two sets of involved grandparents.
Another question … Of Gavin gets Medicaid, why doesn’t he get nursing hours or PCA hours? They dole them out in tiny increments, but you get them for med preparation, ADLs, pretty much anything he requires assistance with.