The Whole Truth
I’ve decided that I’m going to share the things that are currently weighing on my. I welcome your thoughts but please keep any negative comments to yourself.
Until you’ve walked even half a mile in my shoes, you’re not in a position to judge.
Sharing these things is not easy to do. I’m not proud of how we’re struggling but at the same time I am. The fact that we are struggling means we’re still around and that is something I’m quite proud of.
Mine is far from the only family struggling.
My hope is that I can sorta purge and walk away feeling a bit lighter and less burdened. This is meant to provide you all with a bit more access into our lives and help put my stress into context.
Here’s my confession……..
I feel like I’m looking down the barrel of a gun. I’m so completely overwhelmed and quite literally at the point where I just want to say screw it and run away.
Know that I would never do that. Things are just that bad right now that I wish I could.
Lizze is not doing well and quite frankly, that makes my job significantly more difficult because all that much more responsibility falls onto my shoulders. Keep in mind that I’m already stumbling under the weight.
We just finished up being investigated by Child Protective Services because someone (mostly likely someone we know) filed a false report and it trigger an investigation that lasted about 2 months (maybe less). Talk about stressful and disruptive. It doesn’t get much worse than that.
Lizze has at least two major procedures that keep getting put off because things keep getting in the way.
These aren’t life threatening but do contribute in a big way to her overall quality of life.
There’s of course Gavin. I don’t even know what to do anymore. Everything with him is so incredibly complex that simple solutions no longer exist.
The poor kid has so much going on that it’s difficult to even know what to focus our attention on. If we do manage to focus on something, like working on getting him out to John’s Hopkins, for this whole Ataxia-telangiectasia like disease thing, something new rears it’s ugly head.
Unfortunately, before we got anywhere with that, Gavin had a psychotic break. We are currently trying to manage that but we are losing the battle.
Right in the middle of Gavin’s psychotic break, Emmett’s fever flares return. We thought we had said goodbye to those but it appears that we haven’t. In fact, his latest flare is the worst he’s ever had and saw him in the emergency room at Akron Children’s Hospital.
When he’s in a flare, our life is completely put on hold. He’s extremely difficult to manage or comfort and is in a tremendous amount of pain.
His pain is so bad that he was put on a form of liquid vicodin.
These flares last for well over a week before taking 2 or 3 weeks off and then starting all over again. This is so completely disruptive to the entire family but Emmett pays the highest price.
Elliott is lost in the shuffle.
His anxiety is very high and he’s constantly worried about Lizze and Gavin.
I try my best to split myself 3 ways but the truth is, I don’t do that very well. I’ve been doing this for way too long and there simply isn’t enough of me left to accommodate everyone’s needs, least of all my own.
Then of course I still have the everyday life things that I have to deal with.
This blog is one thing that does keep me going. I can vent and walk away, if need be. Fortunately/unfortunately, it’s become pretty big and keeping things physically online, has proven to be a struggle and an expensive one at that.
We have managed to save our house. While that should be a huge relief and it is, our house is falling apart. It’s also located in an increasing more dangerous area.
We don’t let the kids outside very often, for safety reasons and we try our best to avoid our windows. Most of the windows in the boys rooms are covered by furniture.
Knowing this sorta makes saving our house a hollow victory, at least to some degree. We still have a home but no one feels safe. 🙁
Those of you with Autistic children can likely understand how difficult life is when your special needs kids don’t feel safe. It’s a nightmare.
I’m spread so thin that I can’t get anything done.
I have piles of laundry in the basement and a stack of dishes in the kitchen, both of which need my attention.
I’m ashamed to admit that we still haven’t been able to get our gas turned back on. Cooking has been limited to the grill or microwave. We have no hot water and no stove/oven.
I’ve contacted all the support agencies in the area and there isn’t any help.
Do you know how challenging it is to cook for three sensory sensitive kids, one with life threatening food allergies and all with various other food proclivities? Many of you are all too aware of that challenge.
For those that aren’t, it’s extremely challenging and that’s with access to a stove/oven.
The boys are bathing at their grandparents and we’re super grateful for that. Lizze and I are doing the cold shower thing.
I’m still paying off tens of thousands of dollars in legal fees from when we were fighting to protect Gavin from his abusive biological father and paternal grandmother.
We’re behind on the van we had to buy to replace the one that was stolen and totaled. I don’t know how much longer we’ll be able to maintain it, not that it really matters because it’s not running well and needs work that I can’t afford.
I’m trying to hide all of this from the boys but it’s not easy and in Elliott’s case near impossible.
Seeing them struggle as a result adds so much more guilt to the mix.
Like everything else in our lives, there is no simple solution. I’ve recently puts adds back up on this site but those are slow to generate anything.
I haven’t been able to replace my freelance writing job either. Something needs to give because I don’t know how much longer we can keep this up. I do have a project that’s in the works but it’s been met with delay after delay. It will change our lives when it does finally happen. I just don’t know when that will be or if we can survive until then.
I’m buried and everyday it just gets deeper and deeper.
My point isn’t to complain or elicit sympathy. All I’m doing is letting you all into to our lives a bit more than I have in the past. It helps put things into context and aides in keeping the content of this blog in perspective.
This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉
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