Searching for a Box to Think Outside Of

Having a child with special needs can be very challenging. Many times we speak of ignorance and anger about other peoples reactions. It took me many years to truly understand the definition of ignorance and how to deal with it. I am not perfect but I try to ensure that I take every opportunity I have to properly and kindly offer knowledge to others. I used to always think of how hurtful it was to my child and now I often try to consider how the person would feel knowing the full situation.

What many people including myself don't realize is that people usually don't have a clue what your issues are. Yes, they could mind their own business but everyone has a need to help others and sometimes it just doesn't come across as helpful. Sometimes people react to situations that they don't understand because they feel they need to help, without understanding the logistics or facts behind it. This is what happened last week to my son and I.


Last Thursday Charlie had to have an Ambulatory EEG and after he was hooked up we went skating! He was having a blast! After skating for about 40 min the guy on the floor skated up to me and asked what the machine was. I proceeded to tell him and also expressed that he has abscent seizures not grand mal,  that would be dangerous. He skated away and I thought that everything was fine. About 5 min later I noticed the strobe lights had turned off and I had to bring Charlie to the bathroom. While I was in the bathroom with him two girls came into the bathroom to "check on" charlie for the skate rink guy. This baffled me and I told them he was fine. They remained watching him in the bathroom and followed us out. When we exited, there was two police officers walking towards the restroom and asking to talk to me. They informed me that the rink had called for a well child check cause they were concerned about Charlie's safety. When I explained the situation, they told me I didn't need to leave and that we were fine. I decided we were going to leave and I must admit I was very angry. They did refund me upon request, but I felt discriminated against and violated. They took a happy moment with my son and destroyed it. Why had the manager not approached me if they were concerned? Why did the rink guy not express concern?

I wanted to go online and write horrific reviews of their rink describing the incident and labeling it as disability discrimination. I wanted to post on facebook telling everyone about how we were treated. But.... I didn't. I talked to a few close friends, dealt with the rest of my time in Albany and then on Sunday I called the owner. I left a message, half expecting him not to return my call. On Monday he called back and as I started to discuss the issue he remembered it. He stated that he was told that I was trying to trigger a seizure and was never told that he did not had grand mal. Being he only knew about the severe, scary seizures, he reacted on what he thought was happening. He apologized several times and stated that he should have inquired further to know more facts. I educated him on different types of seizures and also gave him a few thoughts on a proper protocol. I informed him that the manager had never approached me and he thought he had. All of my questions were answered and it seemed to be a huge misunderstanding.



In retrospect, I am glad that I searched for a box to think outside of. I am glad that I allowed myself to react with my brain instead of my emotions and I hope you will consider this too. I was able to educate the owner of the rink about seizures, EEG's and the feelings of a special needs child. The roller rink sent us a $50. gift card despite me telling them it was not necessary so Charlie can go and have the experience he should have gotten before.  I encourage you all to do the same. Instead of assuming that the person is being mean, pursue the issue as if they don't know all the facts and was not trying to harm you.

Sensible vs Emotional Brain

As I meander through everyday life, I am often bewildered by my surroundings. Many times I feel as if life is totally passing me by. Sometimes I cant even remember how I got where I am. I keep hearing the words, "You are on autopilot, but a pilot is in control and I don't feel in control so I guess that doesn't work. I am always struggling to figure out where I belong. Most of time I feel like I am being pulled in several different directions.  The control seems lost, emotions raw and stifling and questions still awaiting answers.



Is there a place in this life where I can be me? When will I figure this craziness called life out? When will I find my space in this planet? What box do I fit in? It seems that I have not only lost my identity but also my placement in the social world. Conversations that are so simple, yet forced and usually meandering back to me talking about the only thing in my life that gets focus, my children. Maybe, I don't need one singular box, maybe I am meant to fit into many different boxes. I am not certain that anyone is supposed to fit entirely into one box. However I am struggling to find any box that fits for me.

For many years I thought the autism community was where I fit, but since My Hero Charlie got sick, I don't feel I belong there. I think for the mere fact of trying to relate with people. Not that I am completely disassociated from it and I certainly don't feel like they shun me but it is me personally, and how I am NOT coping properly with my situation. Autism is a huge part of my life but it doesn't even compare to the torture I am witnessing.

I can't wrap my head around what is going on with my son and it really hurts to see other people's children doing things my son was once able to do. I cry when I drive past a park and see kids playing and every time I have to decline a party or event due to his health.  I feel hurt and anger and an inability to allow anyone to even try to relate to my emotions. It makes me cringe whenever someone says they understand and, he will get better. The voices in my head scream and rage that they have no clue. How do they KNOW? I sure hope this is a natural method of coping with grief cause it gets very lonely when you are barricading yourself in.


Seriously, I think I work with two brains at all times. The sensible brain and then my emotional and most times irrational brain. My sensible brain tells me that there are people that understand and love me. That brain know I shouldn't feel the way I feel but that doesn't make it any better. Unfortunately it can not mute the screaming inside my head or numb the pain of my heart. I find myself trying to force a smile amidst company and pulling away from anyone that will see the deep hurt that seems to have become a squatter in my soul. It steals away moments of peace whenever there is a moment to reflect. I wonder if other people have the same issues.

I know this will get better and I will rise to a happier place again. Tomorrow is another day and, setting aside the daily stress, I will attempt to find a small triumph to smile about! We can do this as a family!

Please comment if you like what you read and if you can "relate".  Thank you so much!

Sometimes the truth hurts



I wanted to write to say thank you to all those who supported My Hero Charlie during the blabathon. What started as a 24 hr blab ended up being 223 hours. We raised almost 3000 dollars between monetary donations and supplies bought off the wish list. Although we did not meet my goal, we did leave an impression. We spread awareness and also imprinted my son's image in peoples minds. We brought to light a serious flaw in the health care system and showed raw emotion. As a group we were able to pull together and keep a blab open for almost 10 days! Thank you again to everyone who participated, including those that shared the event.Some question why I ended it if we didn't  complete the goal.


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.

Just one day...



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! 




Cuteness Overload


Just had to share a bit of cuteness


 

 

 

 

Welcome to the world of 24/7 parenting of a medically fragile child


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

Please don't forget about his campaign at:
http://www.booster.com/energize-my-hero-charlie






The Cold Hard Truth


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.

Today he is just exhausted and battling the same headache for the third day. I want to say things are great and he is healthy. I want to post pics of him running around and playing! I want to believe that all of this will just get better. The reality is that this is a nasty disease that is incurable at the moment. 

Does that mean I am giving up hope? NEVER! My hope is that there will someday be a cure and answers, not just for my boy but for everyone that has to face the beast of Mitochondrial disease. Together we can all help give Charlie a better chance at childhood. Please consider joing us on blab.im on February 12, starting at 9:30 am EST for a 24 hour event where we will enjoy the company of others, have some entertainment and interviews while raising money to help provide Charlie with necessary supplements. If you are interested in booking an hour to help a great cause please email me at autismasawhole@gmail.com

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!

Always gotta look in the bright side





I got a new pill crusher that works amazing! 




His Nexium was finally approved!





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


You might be wondering why I talked to him. Well, I have been reading his journey for many years and I am happy to say that he will be joining me on blab.im on February 12, 2016. On that day I will be doing a My Hero Charlie campaign to try to raise money for his supplements and additional needs that are not covered by insurance. 

I am looking for other speakers and hosts. Just someone to entertain, educate, or conversation while supporting my sons needs. If you are interested you can send me an email at autismasawhole@gmail.com or a dm on Twitter. Thanks in advance!

Campaign for help from a desperate mom

Hello, as a single mom of 4, who has always tried to make everything work without asking for help, I surrender! I was told that in order to receive we have to make it known that we are in need and despite my personal pride and desire to do his on my own I know that I can't right now. Going to work is  impossible right now with Charles being so sick and everything seems to pile up. Charles has many needs and supplies that are not covered by his health insurance. He has lost his ability to maintain his bladder, mostly at night, therefore I need to have chucks handy. This is adds a lot of stress which is starting to affect my parenting skills. I have less patience than I typically have and seem to be crying a lot. I am emotionally spent! Over the Christmas season my family was blessed by some very amazing people who gave my children a Christmas to remember and also helped me get a new washer and dryer because mine was broke. I can never thank everyone enough.

I now need to ask for some community support. Chuck Cheese aka My hero Charlie, needs multiple supplements that are not covered by insurance. This happens to many families with children that suffer with Mitochondrial disease. We have T-shirts and hoodies available for purchase as well as a paypal link in the sidebar. Please consider helping to energize my baby so that maybe we can get him into school more and increase his quality of life. I miss my baby before he got sick!
Please click the image below to join this campaign and purchase your shirt or hoodie. They were designed by Doctor Ivan (DoctorIvan.com). Thanks in advance for all of your support and please share the links and this post.