The boys were all away for a little while today. Lizze hasn’t been doing so well and I wanted to try to get her out for a bit and distract her from life as well as from her pain.
I took her to see The Campaign.
She loved the preview but actual movie, not so much. I thought it was friggin hilarious but I like movies like The Hangover and Old School.
It was nice to get away, even if she ended up not loving the movie.
The stress of everything is waging war on her body, and right now, the stress is winning.
The other night, Elliott and Emmett witnessed Lizze crying from all the pain and that was very hard for them to see. They are worried about their Mommy and so am I.
As of this moment I’m declaring War on Stress. That means that any and all preventable stress will be dealt with swiftly so as to prevent it from taking root. This by no means includes the boys.
Gavin’s behaviors are another story.
Anything that adds to her continued deterioration will simply have to stop. I realize that this is going to be a very broad spectrum war. Having said that, anything that can be done, will be done.
That will include things like, building new or better coping skills. Discovering and taking full advantage of anything that can provide an outlet or distraction. Things like Lizze’s passion for photography will be fostered.
We will tighten things up at home and get back into the school routine as that is quickly approaching.
The biggest thing that is going to happen is that we are going to reprioritize many things in our life. If it’s not essential to the core function and survival of the Lost and Tired family, than it will be placed on the back burner, indefinitely.
We already have to much on our plate and it’s high time that we shed some unnecessary burdens.
By dumping everything we can, we will be able to better focus on the boys and Lizze as well. To often I find myself overwhelmed because I’m literally being torn in to many directions.
Things have got to change and change soon.
I want to work with Elliott and Emmett to keep them moving forward. Gavin will on a much tighter leash. I know that sounds bad but his behaviors are the largest source of stress we endure, and it literally affects all of us.
I’m going to make it a point to explore any and all options that can help us accomplish this goal.
The bottom line is that we have endured all we can physically endure. Lizze’s body has turned on her and the E’s are carrying around way more stress and anxiety than is acceptable.
I will be meeting with all of Gavin’s doctors and specialist to find out how they recommend we precede. No one in this how will live in terror any longer.
I will also be injecting myself into Lizze health care. She typically likes to handle that on her own. However, things are simply out of hand and I’ll be dammed if I’m going to stand by an watch this happen. That will begin in the morning with a phone call to pain management and inquire as to why they are not treating her pain.
I’m also going to find Emmett a preschool and get him back into that environment. If the school treats him as he has been treated in the past, I have my attorney on speed dial.
As far as I go, I will be doing my best to save up for a treadmill. Until that time arrives, I will do everything possible to get back in shape, lose weight and get my cholesterol back in balance.
That about sums everything up. Right now I’m pretty fired up and I to get the Lost and Tired car back onto the road and heading in the right direction.
This was posted via WordPress for Android, courtesy of Samsungs Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.
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The absolute best thing you can do for both yourself and your boys is to teach them better coping techniques.I have found of all the things my parents taught me to deal with my Aspergers Syndrome, coping techniques are the one thing I use every single day and make my life easier, not to mention the lives of everyone around me.
@Ruedii you are absolutely right. 🙂
I cannot believe that no one has ever told you about these services!!! I checked out the Ohio DODD website http://providersearch.dodd.ohio.gov/ and they have the information there. You may even be able to get help for Gavin. I hope that this proves to be extremely helpful to you and that relief is soon to come. I have spent 8 of the 9 years of my aspies life treading the waters of eating issues and then found out that speech pathologists help with food issues. I was so ANGRY that no one ever told me this. Now that she is almost 10 her brain is completely turned off to trying new food. She has also dropped foods within the last year so she only eats about 10 foods. I almost feel like the medical community has ruined her. They have most certainly failed her. I would have suggested this sooner but I thought that maybe you may have chosen to turn these services down. Please keep us posted on your findings.
Rob, I applaud this decision. We only have three of us with autoimmune, and nothing like dysautonomia. I cannot fathom what you all are going through. It's incredibly stressful. I have heard a few things in regards to fibro that might possibly help Lizze. There is a strong link to illnesses as a trigger, like Epstein Barr or Lyme, to name a few. Also I have heard about Kutapressin helping quite a bit. Its a shot you take either daily or weekly. The last is Minocycline, which is often used as an anti inflammatory for a number of autoimmune diseases. Antibiotics can be used quite successfully to treat autoimmune disease and keep it from progressing. It is often used as more of an alternative treatment, and has actually also proven successful for neurological conditions, by lowering neuro inflammation.
@rmagliozzi Thank you for sharing that 🙂
just a question/thought, do the boys get any respite or hab care from the state?
@JenniferWhynott nope. Why..
Well I am a certified respite/hab worker and what I do is help families that have special needs care for their children. I come into the home and work on behavioral goals and then there are times where I just play with the kids to give parents a break from having to be on the clock 24/7. The state should cover this kind of care for all 3 of your children and possibly extra services for Lizze like housekeeping. If any of your children are on state aid I would check into this so that you guys can have a daily break to recharge your batteries and alleviate your stress. You may even be able to have a family member certified to care for your children and they would get paid for their care
@JenniferWhynott I'll be checking into that ASAP. Thank you very, very much 😉
Also check local Freecycle online groups where people offer stuff they don't need or want. We once found an organ the church kids needed for a Halloween party, then just gave it away when they were done. No money involved! I know there are many unused tredmills sitting around somewhere !
@KathyKohlBuehler I'm doing that right now 🙂
Rob, have you tried putting an ad on Craig's List for a treadmill? I see them listed here occasionally, people just wanting to get rid of them, free. I think they get them and then realize they either don't have the room, or simply don't use them. You could also check classifieds in your local paper.
@hudginsvicky I'm gonna keep an eye out. Thanks 🙂