Autism As A Whole

I decided that a break was desperately needed because I was emotionally exhausted. There were many emotions that came into play when I was explaining my story repeatedly. I felt emotions that, typically I can keep under control, but they were activated in full force when I was talking about my son and control was lost. There was also feelings I didn't know existed within me. One of the feelings that sneakily slithered into my thoughts strangling my ability to breathe, similar to a boa constrictor on it's prey was loss. I am not sure if it is a loss of what my son's abilities "should" have been or a loss of the child that was rambunctious and energetic. The boy I taught how to ride a bike and eat with a spoon. These are things he really struggles to do now. I think it is probably a little bit of both if I am to be completely honest. Often I feel angry and I cant figure out why, I chalk it off to me being stressed and overwhelmed. I think that is because I am ignoring the strong emotions that naturally exist, such as the fear of losing my boy. If there are extreme emotions that are not being dealt with, it will show through your daily activities. You may become irritable or depressed and not understand why. I need to be aware and open to deal with the emotional tolls of parenting a chronically ill child who is on palliative care.


Palliative care is similar to hospice but geared around children with chronic life threatening illnesses. They manage pain, provide counseling and intervene with siblings to help them understand the situation. My son started on Palliative Care in July of 2015. This was a disheartening occurrence. As a mom I wanted to see the miracle of him getting better. I wanted to be able to reteach him the skills he had lost and I really wanted to believe the earlier doctors who told me he was "just autistic" and autism causes regression. Today I know they were wrong, the issue was a lot deeper and my emotions are raw and I am angry. Yet another emotion that was opened up during the online event.


I am not angry that I am in this position as a mom. I am not even really angry that I might lose him. But, I am angry that while my eyes were wide open everyone else seemed to be blind to his illness. The blame was often placed on his autism or a psychiatric problem. Sometimes that seems like such a better situation than the one I am in. Instead we deal with Mitochondrial disease which most people do not even know about. Therefore I find myself reiterating it constantly which feels like a fresh paper cut that you pour salt on. I find myself angry whenever the phone rings because I think it is going to be one more person I have to argue with. Between the schools and the insurance companies I feel as if the phone is glued to my head and for some reason no one on the other side can hear my voice. They never really understand or listen, just fumble through policies and reasons they cant help him.  The school will not provide tutoring and the insurance agencies refuse to provide supplements. Both of these items could benefit Charlie. It makes me want to scream to them all that he is not a number. He is a child, MY CHILD, a part of all of our future.


Taking a break from the fundraiser is just an escape from the chaos in my head. It is meant so Team My Hero Charlie can organize, regroup and promote to ensure a positive, loving, and inspirational crowdfunding event.
You can visit the page created or Charlie at www.myherocharlie.com and please share this page. Together we will make a difference.

Charles was not feeling well this morning. He asked me to get him food and by the time I got to his room with food, he was asleep again.  It is days like this that make my heart cry.
I wish he could catch a break!

About an hour and a half later, this is how he awoke. When I called his name he did not respond. I am pretty sure it only lasted about 30 seconds but it felt like an eternity to me. 

Some parents might be used to this but I am not. I do not want to accept this and I wish I could make it go away. Days like this I wish his neurologist was in his room to witness what I am seeing. This whole process is a train wreck. In order to get testing you have to wait till insurance approves it and then you have to wait for the department to have a spot in the schedule. I hate that insurance agencies and pharmaceutical companies ultimately determine what care your child can get. They do this not based on need but based on greed. My son is not a number! I will fight back, but I also have to help him. So: the blabathon will continue. There are many ways to help! There is an Amazon wishlist, a paypal link,a youcaring site, and a booster tshirt campaign. I will post the links below! 

https://www.booster.com/energize-my-hero-charlie

https://www.youcaring.com/myherocharlie

http://amzn.com/w/PTLWOOPLZM21

 

 

 

 

So, my night has consisted of, "I don't feel good" and a constant temperature taken. His temp seems to be running really low which concerns me. He usually runs about 97.2 and tonight he seems to be running 95 to 96.4. I have no clue what that means and I think I'll call the doctor to figure it out but I know that on Monday when he went to school he was running a temp of 98.8. He is probably getting sick. I am so lucky. UGH

Many people ask me how my boy is feeling today and I honestly wish I could say,"He is doing awesome!" But.. The truth remains that he suffers everyday in some way or another.

Please take a moment to look at his booster campaign and if you can, buy a shirt! If not definately share the page and spread the word! I have also placed a paypal donate button in the sidebar. No amount is too small. It takes a village to raise a child and a strong community to build hope and love for each other! Please help me help him!

I got a new pill crusher that works amazing! 

His Nexium was finally approved!

AND.................