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

I talked to Rob Gorski (@The_Autism_Dad)! 

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!

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.

Lately blogging seems a bit boring. I am not sure how much I can say that isn't as repetitive as a kaleidoscope pattern. Everyday I awake to hearing the same words, "I don't feel good." The fact that I cannot help him feel better tears me apart inside. Chuck Cheese has been on a modified school schedule since last year and he still can't maintain that. The school will not provide tutoring despite the constant absences. Therefore I have resorted to sending him regardless of how he is feeling only to receive a phone call to pick him up before he even hits the three hour mark when he would be getting on the bus anyways. I feel stuck! I feel angry that I can't do more! I feel like everyone in any form of power only looks at him as a number and I am a small voice that never gets heard. I MUST BE HEARD! I am going to scream and shout until things change! He deserves to be a kid again.

For those who are not aware, my family was hit with a medical emergency. I think I need to start at the beginning but it is hard to determine when that was. About 2 years ago my daughter suddenly had an onset of asthma. It seemed to have worsened within a year. Her pulmonary function tests were at 48%. We were seeing multiple specialists and they all said it was asthma. Fast forward to July 1, 2014.... Krystal was extremely tired and laid down on the couch. Her breathing was very labored and she was in a lot of pain. I rushed her to the er where they took a chest xray and determined she had a pneumothorax on her left side. They inserted a chest tube and transported us to Albany. They transported without suction! When we arrived they did a CAT scan which showed a blockage. The blockage was a golf sized tumor blocking airflow to both the upper and lower lung. We spent 5 days in the PICU. While in the PICU she had a bronchoscopy to clear her airway, a toilet broncoscopy to clean out phlem as well as debulking to take another biopsy and clear the airway more, and the chest tube removal. She was ready to go home! We were discharged thinking we would have biopsy results within the week but it didn't happen. About a week and a half went by with both myself and the primary calling everyday and we finally got results. The tumor was malignant but they didnt know what kind so they had to send it off to a better hospital. The other hospital said that they didnt have a large enough sample but again it was malignant and seemed low grade. They also said they thought it was a salivary gland tumor. We were told to have her exercise her lungs. This made her have a lot of pain and she was very off balance and dizzy. She is still extremely tired! Today we received another phone call regarding a recent CAT scan. They feel they need to remove the entire lung as it seems there are more tumors encased in the lung. They still feel it is low grade and they said that they thought they were all salivary gland tumors. I cannot wrap my head around this.....

After many opinions, everyone has come to the conclusion that her left lung must be removed. My Mama Bear instincts are numb. I wonder if I am making the right choice and I know that the consequences of my choice falls entirely on me as a single mom. I am so scared but I need to stay strong for her. She told me that she would rather go through chemo than possibly lose her voice. She has an amazing high soprano voice and singing is her dream! They all seem to think that we are dealing with a salivary gland tumor but they are not certain. There are more than one tumor and originally they were only dealing with one. They will run more biopsies after the lung is removed and she will be followed up with oncology.

We went to the doctors and surgery is scheduled for August 4th. I really thought that knowing we were moving forward would make me feel better but now I dread that date. The thought of wheeling her into the operating room and giving her that final kiss before surgery really scares me. I hate this whole process. She however seems really calm about it all. I wonder if I would feel differently if she were reacting in some way. I feel like I need her to need me. When they are really little they need kisses and they need you to hold them when they are sick but she is so distant from it all. I have a counselor set in place for her whom we will meet on August 1st. I hope that will help her through this. Life is hard enough for a teenager to cope with but when you add a serious health issue it just intensifies it! I have faith that she is a strong girl and she is a fighter. I am just a nervous nettie!!

As the days creep closer my nerves twist a little more. I would think it would ease a little with all of the support and hearing success stories. Something deep in my gut just feels a little off and honestly, I hope that feeling is wrong. I hope they go in and find exactly what they "think" they will find and nothing more! Fear drives me in many ways. I find it keeps me on my toes and makes me a lot stronger than I feel. Krystal reminds me every morning how many days we have till surgery. I try my hardest to hide my fear and emotions regarding it all.

Our family has been through so much in the past 8 years and this just seems so damn surreal and unfair. How can one family go through so many hardships? Where is my light? Sorry if this is such a somber post but I just needed to vent and this is the only way I can deal with my emotions.

Krystal is an amazing 15 year old. She has two autistic brothers and both have other medical conditions as well. She copes with the autism, tourettes, Cri Du Chat, and Mitochondrial disease, and she does it with a smile! She treats her siblings with such love. Yes, she can be that typical teenager that you want to hang by her toes but she has a love that cannot be defined in words. When asked in the hospital "If you could have one person visit you, who would it be?" She answered her youngest brother Charlie. Charlie is the hardest child to have a relationship with as he is very autistic and can be quite mean. But... She loves him.Her sister Jocelyn and her have become such amazing advocates and they also love each other beyond words! Jocelyn hasnt left Krystal's side this entire time! I am just completely amazed at the young lady that I have managed to raise all by myself!

My sister is California started a GoFundMe site to help with the costs incurred during this difficult time, you can find that below. I would also like to invite anyone to send her cards of encouragement and love to help her have the strength for a strong and quick recovery.
The address to send cards is: 
PO Box 584, Hurley, NY 12443, 
and they can be addressed to Krystal Long.
Thank you and much love!

My mind probably looks a little like this;
and I don't do drugs but within the last 8 years I seem to have lost so much cranial function it is insane.

I make coffee and forget to drink it, I have left my keys in odd places, lost large amounts of money, and forgotten about many important dates.

Early onset Alzheimers?? Most likely not! Stress does many things and then your body sends warning signals out to inform you that the stress is too much. It could be memory loss, pain or even headaches. Your body has to cope as well and that is how it deals with Stress.

Does any of that rubbish help me?? Nope! I know I am way too stressed but I do not know what I am supposed to do to relieve that stress.
My stress will not go away but I can start trying to alleviate some daily stressors and take some time to relax at the end of the day! 

My memory isn't the only thing suffering though. Emotionally I can not handle ANY extra added stressors. If I lose my keys, I am a blubbering mess. If I can't find the hairbrush, tears.... Ugh. Last night I went into the living room to lay on the couch and tripped on a glass full of water and it spilled all over the floor. What do I do?? Stomp my feet and tears!!! Ugh.. This woman needs to find a human dehydrator cause I am sick of tears!

So, emotionally I think I am shot but we must go on and continue going! I will be okay, I just have to reground myself and find ways to cope with the insanity and the constant stress that comes with parenting2 special needs boys, one being medically fragile as well and two teen/preteen girls !
People wonder why my hair is almost white!!! Every strand tells a story!

Every day holds an adventure they say..... Well, with children like mine that is most definitely true. So much happens and I feel like I am on a never ending roller coaster. I have days when all I want to do is cry and the next day I might be fine. People look at me and ask me how I manage and others tell me how strong I am, but they really do not know. Unless you walk down my path, will you ever understand??

My eyes shed many tears, yet you feel I am strong. My heart hurts beyond any pain I have ever felt, yet you feel I am stronger. My mind shuts down and I can't remember and it takes notes, alarms and friends to remind me of things, yet to you, it appears I am managing it all. My house is cluttered and I have no clue where to start. There are days I feel like my whole life is falling apart! Strong??? It isn't all strength. I don't really have a choice. I do it because I have to!

When I gave birth to my four children I vowed to each of them that I would NEVER give up on them and I would ALWAYS be there. No matter what life hurls at me I cannot stop. Sinking is not an option. I wish everyone could really see how my mind NEVER shuts off. I constantly wonder what more I can do and how I can help them.  Was there something I could have done differently and Is this my fault run constantly in my head like a hamster on a wheel. If only everyone really knew.

It takes a lot to write and it is hard to express how I really feel about it all. My son appears to be in good health and with all my heart I wish that were true. I wish the doctors could figure it all aout and this nightmare could be over. But, Reality is that this is a path I must take, a road that needs to be traveled. There has to be a reason I have to endure this pain. You might think this is about "God", and I guess in a sense it is something like that. Whatever "God" is for you, I believe in harmony, spirits, energy and fate. Whatever is at the end of this, there is a lesson to be learned and I will be a little stronger even when I feel the weakest.