Autism As A Whole

I always try to live each day as a new fresh start. Another day of adventure and experience. I try so hard not to let the thoughts of what if creep into my thoughts. It isn't as easy as it sounds. I usually end my day saying tomorrow is another day. I try to allow my children to experience life without restraint because I know time is precious. Lately however, I find myself stuck.

I know in my heart that those wonderful moments of adventure are going to turn into several days of agony for my little man. For example, yesterday evening I met up with my sister for a walk on the rail trail. I thought it would be great t o get them out in the fresh fall air. I asked Charlie several times how he was doing and he insisted he was fine. The minute we got in the car he was crying his legs hurt. Then everything hurt. Today, he stayed in bed till noon and now lays on the couch. Exhaustion sets in and keeps him for days. It was only about a half hour walk.


This whole situation sucks and no words of encouragement can change that. I just have to keep reminding myself of the smiles and strength this little man holds. He can do this and I will stand by him and help him.

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.

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!

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.

Just had to share a bit of cuteness

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