Understanding our own Mortality

It is sometimes hard to understand why and it is one of the greatest mysteries as to when, where and how. We all know we have to face the reality of our own mortality and must eventually make peace and accept the inevitable that we too will die one day. Life is unpredictable for most of us who are blessed to be born and live our life as God intended us to. I sometimes wonder what it is like for someone who is diagnosed with a terminal illness and is given a finite time to live. In essence they are aware now as advised by medical doctors that they will die. Is it any easier for them now that the mystery is gone to some degree? Does knowing you will die in a certain time frame make it any easier or does knowing make you feel more anxious and depressed? Does someone in this situation start to feel sorry for them self and lose hope or do they try to manage to smile and live what ever amount of time they have left? It's really hard to know unless you are in that situation. I also wonder what it is like for someone who had been told they would die in a relatively short time frame but wound up beating the illness and making a full recovery. What is it like for them now that they had cheated death? Do they feel invincible or do they still wonder if they will eventually run out of time and will die as they had been told?

Does knowing allow you to be prepared and try to capture the remaining moments in a more special way. The make a wish foundation allows for children who are diagnosed with a terminal illness the chance to live a dream before they die which is very special and heartwarming. Although it is very difficult to face the end for someone we love we try to live and accept the situation as best we can for the sake of the person who is going through it and we try to support them as best we can and love them and hold them for as long as we can holding back our tears.

I believe when it is our time to die we will instinctively know it and hopefully we will have experienced a full life filled with love, happiness, joy, success, friendship and a loving family. We know that the hardest part in coming to terms with this is that we will no longer be an integral part of the lives of others who mean so much to us. If we have children we will worry for their care and their future. If we have to die when our children are still young then it is a tremendous burden we take with us and how can we die in peace with so many unknowns. I believe the younger we are when we die the more we feel that we had not been given the chance to live and do all that we wanted and hoped to do. I feel for young children who die so young never really experiencing life. It must be such a heartbreak to the parents when they lose a child. How can a child be so brave knowing they will die? I have seen children in the cancer ward undergoing chemotherapy treatments but they still manage to smile and are happy when their family and friends visit and bring them a present as they are still kids though they are faced with such a hard thing to deal with. A part of me cries for them as I realize they are most likely going to die young.

I will never forget attending a funeral of a friend's baby daughter. She had just celebrated her second birthday but had lived all her days under nurses care due to a seizure disorder. Her parents were very loving and caring and so devoted to their baby girl. It was the hardest thing seeing the little white baby coffin and the precious family pictures. I cried many times that day as I tried to offer words of consolation to my friend and his wife. The tragedy affected me so much that I had to get away so I went to the happiest place on earth. I went to Disney World to try to find a sense of happiness as I felt so sad for my friend and his family after losing their beautiful little baby girl. It was such a heart break to me as I was good friends of the family.

The tragedies that surround death are also heart breaking. We hear it every day or sometimes come upon it as we drive past an accident scene. It really makes you wonder why. It just seems so hard to comprehend how one moment someone is saying good bye to their loved ones and the next they are fighting for their life or are pronounced dead at an accident scene. They had no way of knowing this would be their fate until the moment up until it happened. What could be going through their mind at that instant in time.

What goes through the mind of someone who decides they had enough and feels their only way out is suicide? It is very sad when someone feels so alone and in despair that the only way they will escape their pain or hopeless situation is by taking their life. The hardest thing to come to terms with is the loss of a loved one to suicide. I have tried to put my father's tragic death into proper perspective and I feel very sad of the circumstances surrounding it as I wonder if the outcome could have been different if I had sat and spoke with him that fateful day. I try to find solace but a part of me feels the pain that he could not express to us. I have gone through so many emotions and feel guilty that I wasn't there for my father in his greatest time of need.

I also felt that way when I visited my mother at the hospital when she lost her will to live and just withered away. I tried to be strong and made my daily visits to see her even though I felt the situation was bleak. It is so very difficult facing the reality that you are about to lose someone very special to you. You try to believe that everything will be ok and you hope and pray for that but you know in your heart that you are about to lose your loved one. When I found out my mother had died I just cried and cried and I really never did get to say goodbye as I had wished to. I visited her every day but she was not aware of our visits. On occasion though I did feel her faintly squeeze my hand but I could tell her body was so weak and it was just a matter of time. My mom was only 50 years old when she passed.

I have experienced death of loved ones through the years and as I spend time with my wife and son I try to hold on to these precious moments and enjoy them because they are fleeting. Our son is special needs and is autistic and he has difficulty in social situations. My main emphasis is to spend as much time with him as I possibly can and instill in him the strength and courage he will need to help him find himself and live his life with a sense of hope and promise. I want him to be his own person, confident, happy and able to take care of himself. I prepare now for the time when I won't be there and the peace of mind I look for is that I have enough in life insurance to protect my son and wife in the event of my death.

Of course we feel we will be around for a while and we avoid any such discussions of death and life insurance but the reality is that we need to plan for our family because we just never know. I have lost two wonderful friends this past year and was in complete shock when I learned of their untimely deaths. I certainly did not expect to hear such news nor did their families but sadly it was true and I just felt so sad. I lost a friend who was about to celebrate his 40th birthday in a couple of months and he died in his sleep leaving behind a wife and a 3 year old daughter. I sometimes wonder why we have to endure such emotional pain in our lives and why we have to lose our loved ones so unexpectedly. Another friend who I had lost touch with but considered a good friend had died of a heart attack. He was only 35 years old and was planning to marry later that year but it was his time to go. It just makes you think and wonder when the ride will end for us when we see it come to an end for friends we once talked with and had good times with.

I remember the first time I was touched by the death of a friend. I was 17 years old and I had just found out from a high school friend by telephone that one of our class mates had died in a horrible car accident while visiting a college campus for an interview to attend in the fall. I was devastated and will never forget it for as long as I live. Every now and then I think about my poor friend Scott who died way to young. He had so much promise and hopes for a bright future but it was not to be.

This is a very sad story to share and I did not know the people involved but I remember hearing it in the news and it was very tragic and it was something that affected me that I talked of it when I had visited a psychologist years later after dealing with my mother's death. I consider myself a very caring person both sensitive and strong but this really made me upset and depressed even though I was not a relative or friend of the families involved.

We all think of our wedding day as the most exciting and happiest of occasions and for virtually everyone it is but in life there are tragedies that occur and sometimes they occur on a wedding day also. The bride and groom had just taken their vows and were now husband and wife and they were now enroute to their wedding reception in Long Beach Long Island and were making the turn into the parking lot where the reception was to be held when a young driver of 21 was drag racing down the roadway and collided head on with the limousine. It was April 3, 1987 and the tragic results was that the groom and his brother, the best man were killed at the scene and the bride died later on at the hospital. The limo driver and the bride's sister were both injured but they survived. The driver of the speeding car also survived but he was responsible for the tragic deaths of the bride, groom and best man. It was one of the saddest stories I had ever learned about and I could not help but wonder why such a tragedy had to occur on a day when all was supposed to be joyful and beautiful.

I feel deeply connected to my family and friends and I am living and doing all I can for my son hoping that I will be there for him to share in his ups and downs, his successes and celebrate alongside him, my wife and family when he graduates and goes on to college. I don't know what the future holds but I must live my life with the belief that I will be there for my wife and son for as long as I can and hopefully will be there to see our son graduate college, marry his beautiful bride and welcome a baby into the world. This is what I live for as I start to take stock of my life and wonder what the future holds.

So as I relate all this I realize that life is not perfect but it is a wonderful gift we have been given and although we may not always feel happy we should live each day with wonder and joy in our heart because we really do not know what tomorrow will bring and we must appreciate that we are alive and with our family and friends amongst us which is truly wonderful because it will not always be this way. We must truly appreciate it now when we have it. I remember my parents and how they loved me and made me always feel good and now that they are gone I only have memories which may be distant but they are still in my heart. I am well aware I will die one day so I will try my best to live and do all I can as I do not want regrets when it is my time to say goodbye.

As I write this I have just learned of the sad news of the passing of Whitney Houston who was a tremendous woman and very talented singer and I feel heartbroken. She was just 48 years old and was planning on attending the Grammy awards show. She will be missed and I'm sure will be honored at the event. My prayers and thoughts are with her family at this most difficult time.

I love you Maria, Matty and all who are special to me.

Edward D. Iannielli III

Autism with a slice of optimism

A little boy sits at his computer staring at the screen as he dreams up a story he wishes to write about. It is not easy for him but it is something he finds fascinating. It is his way to express what he can not verbalize. He loves the creative aspect of arranging words into a story that can be whatever he wants it to be. He can have fun with it and use his imagination to portray something of great importance to him. In essence he is telling a story of his life and he wants to be noticed and given the attention he so desperately seeks. He wants to be acknowledged and accepted and most of all he wants to feel good about himself and what he has written in his own words. He does not speak but is very pensive, he does not laugh, he does not cry, He sits in silence, he does not have a friend to play with and this makes him feel sad and a bit lonely at times, he displays very little emotion yet he wants to be hugged. He tries real hard to focus and concentrate on his writing as he listens to music and compiles lists of his favorite songs and artists that keeps him interested and hopeful.

He is a sensitive child and he has an innocence that is a true blessing. The music is what makes him happy and allows him to find comfort and helps to drown out the silence he has grown so accustomed to in his short life. His parents love and cherish him and they shed tears that he is unable to. It is so hard to see this precious little boy so alone and in a world that only he sees. Why is it that a child so young has such difficulties? A little child laughs, cries, points, talks and makes friends along the way. A little autistic child too can laugh, cry, make friends and be heard. They don't have to live in total silence. Autism is many things to many people. We don't fully understand the magnitude or the dynamics of it but we do know the disappointment, the sorrow, the heartbreak, the fear, the frustration, the loneliness and the painful isolation. It does not have to be this way. We just have to find something that gives us joy and hope. No one has to live this way. They have to find an inner strength and they have to be nurtured, loved, heard, taught, encouraged, praised and hugged every day.

If I could teach my son and show him the way so he can break free from what holds him back I would feel much more hopeful. We have to always be guided by our faith and our heart. Our children provide us with lessons to learn of life too. We surely must listen and be attentive to our children and live in the moment because that is all we really have in life. Our lives are always moving at a pace we can never truly grasp or comprehend. Before we know it our precious little baby is now a child full of wonder and hope. It is our actions as parents that help to shape our child and we are always learning. Both child and parent share a unique bond that is built upon a foundation of love, hope, patience, virtue and experience. We must impart what we learn in our lives to our children and let them experience life in their way so they can learn and understand. We may not always know the answer but we must try our best to listen, understand and guide our child as we are meant to so they can learn and understand as they grow and develop. No child must feel alone. All children must feel loved and encouraged so they can find a sense of belonging and develop a feeling of self worth.

I often wonder what it is that makes us act and behave the way we do. For most of us we don't know what it is like to be autistic. We may have struggled with our own insecurities resulting from shyness, isolation and painful rejection. Therefore we can come to understand what autistic children may feel in their day to day life. For most children it is not easy coming of age. We all have a wide range of emotions and feelings we experience as we start to grow and mature. Childhood can be both a joy and a time of loneliness. We all must realize that this time in our life is fleeting and before we know it we are thrust into having to abide by rules and living in a formal structured way. It is not so easy and it takes time to adjust. For autistic children it is more difficult to find their way and when they lack the ability to connect socially they tend to withdraw and live in silence and a world unto themselves. It is very important to help encourage and teach an autistic child to believe and to find something that they enjoy. We must teach them to have hope and feel good about themselves. We must help them to appreciate things and to not feel all alone. We must help them to write their story and to dream. We must teach them how to accept themselves so they can find true friendship. We must lead by example as parents and we must always be optimistic and we must share this optimism with our children. Children learn from their parents and they pick up on all types of cues so we must always be careful with what we say, how we say it and when we say it. We must always be understanding, have patience and provide words of wisdom always. I will always encourage my son in every way I possibly can. As he writes a story or does an assignment or just has a question I will be there to help him, teach him and provide him with the love and support he needs with a slice of optimism added in for good measure.

Edward D. Iannielli III

A parent's expectations

Children learn what they live and they are influenced by their parents, their surroundings, their families, their teachers and their friends. As a parent we all wish to provide the very best for our children. It is our most important role in life. We are responsible for our child from the very first day they are born and we want everything to be perfect. As our child grows and matures they will experience many things both happy and sad. We have to help to show our children how to live a life filled with promise, hope, joy, friendship, love and faith. We need to listen to them, hear them, understand them, speak to them, teach them, nurture them, play with them, forgive them, hug them and believe in them. We also have dreams and hopes for our child. We expect the very best from our child and we will always have high ideals and expectations for our child throughout their life.

We must always remember that our children look up to us and trust in us and it is very important that we provide them with positive reinforcement and encouragement all throughout their childhood. We are the first adults they come into contact with and they look up to us for direction and for guidance. We will have some challenges in raising our children which is a normal part of life and we need to understand that no matter what the challenges may be we must be strong and have hope to help our children in all aspects of their life. We also must realize that we can only do so much and when all seems beyond hope we must really have faith and love to help our child and we must have a positive outlook and not give in to our fears and our emotions. We must always stay focused for the sake of our children.

As we see our children grow we will realize that the time seems to go by way too fast. It seems the days of tending to our crying baby is a distant memory yet as we calmed them and tended to them and held them gently in our arms it seemed those days would last forever. It is sad in a way that those precious times are gone forever only to be a memory now. Every new parent should really treasure their child's infancy and toddler years because they go by in a flash and before you know it the little baby is now growing up and going to school. The reality of life is that it is always moving forward and things change and we all must learn to adapt and live with the changes. As parents we want our child to be perfect in every way and we want them to always be happy and comfortable. We take great measures in providing our child a positive upbringing but we also must realize that life is not perfect and we will encounter challenges along the way.

Raising a child who has special needs can at times affect us in ways that cause us to worry and wonder what their future will hold. We must learn to get past these feelings and focus on the here and now. We can't worry about the future. We have to focus on the time we have now with our child and we can only live it one day at a time and learn that we need help and support also so we can do all we need to do for our child. We must view them as special and never get down on them. We must always hold on to hope for them and teach them to believe in themselves and to never give up. They are here like we are to live their life and find their purpose. Special needs children also have purpose and they are beautiful and deserve to be nurtured, loved and given the same opportunities as their peers.

If I could share what it is like raising a child on the autistic spectrum and portray it in a picture and capture it in a truthful and realistic way I would show a photograph of a child standing all alone, silent with an expressionless face as other children are milling about talking and playing together. It is heartbreaking when you see a child in a crowd with no one to talk to and feeling all alone. I have come to realize that there are many children diagnosed with autism who have difficulty in social situations. Although they may be very bright they have extreme difficulty in self expression and making contact with others. They are awkward in making friends and in verbalizing their feelings. We have dealt with these same issues with our son and although he has made progress he still struggles in making friends and feeling comfortable in social situations. We are there for our son every step of the way and will stand by his side all throughout as he is our number one priority and we want to see him happy, well adjusted and have every opportunity to find special friends in his life and to do his best in school. He is our precious gift and we realize this every day and we want the very best for him.

We as parents have expectations for our son and over the years we have learned to understand his situation but we still believe in him and have faith and confidence in his abilities and we feel he is truly special and will find his way and have a life filled with opportunity, happiness, success and friendship. We love our son very much and we are so very blessed to have him in our life. We pray for him everyday and have faith that everything will all work out for the best. Love you Matty!

Edward D. Iannielli III

What is my life all about and who am I?

It is something we all ask ourselves at one time or another. It is only natural to want to understand what it is that makes us who we are. It is very important that we approach our life with dedication, sincerity, hope and wisdom.  I am not a doctor or a psychologist but I know we all have aspirations and dreams and sometimes we may lose sight of them from time to time. We all want to feel good about ourselves and make friends and enjoy our lives. It is not always so easily defined as to who we are and what we wish to become. Life is one of the greatest mysteries and we don't always understand what we are here for but we live our lives with the intention of being the best we can and we learn early on that we should always respect others and learn to get along and share a part of ourselves with the people we meet along the way. It is very important to be able to communicate and open up and find ways of relating with others. We all need to develop interests and have ideas and visions of things we enjoy doing and we need to integrate this into our lives so we can develop as individuals and blossom as we grow and mature.

Early in our lives we are introduced to learning in a structured setting where we are socialized, taught and encouraged to participate with other children our age. It is a time where we start to discover ourselves as individuals and start to make friends. We are still very dependent on our parents but we are also learning and growing as nature has mandated for us. We are each unique in how we see ourselves and how we see the world around us. We don't always know the answers but we should never get discouraged for growing is all about experiencing, exploring, learning and maturing. We all go through it and certainly can relate with one another. I know that our lives revolve around family, friends, teachers and all those who come into our lives and touch it in some way.

We will learn along the way and through the course of our schooling and our experiences that things are not perfect and although we may feel safe in our lives there are many who struggle each and every day and their chances for survival are very questionable. They are the victims of war, famine, natural disasters and man made disasters. We see it from the distance and are not directly affected by it but when you see the human toll and you realize that many children in the world have no food, no shelter, no safe place to sleep, no education and virtually no chance for survival due to the dangers they face each and every day due to these sad occurrences it makes you realize the harshness and brutal realities that some face in their lives.

I know from personal experience that we all have to learn to cope and accept the good with the bad. Life is not always going to be what we wish or hope for. We surely will have to adapt and find our inner strength to deal with all that life hands us as we live each day. I also have learned that there are so many who have so much less than what we have and we should always be grateful. We will learn in life that there will be those who are better than us too and will have far greater than we have. We should never let this bother us and we should always be inspired by those who go on to achieve true success and fortune in their lives and we should realize that we can have this same opportunity if we challenge ourselves and believe we can achieve all we hope to also.

When we decide to marry and raise a family we must really be secure in our lives and be willing to accept all the responsibilities that come with it. Once we bring a child into the world we will be fully responsible for them and will need to do all we can to help them to achieve and to feel good about themselves. Our children are our gift and we must always treat them as a gift from God. They may not be perfect but they deserve our full attention, our love and our nurturing throughout their lives. They give us a purpose in our lives and they make our lives more fulfilling and joyous. There is nothing as beautiful then that of a child's smile or a gentle hug or the tender words of "mommy and daddy, i love you!" This is the beauty of life and what is most important. Our time with our children are what will make us feel complete. If we had done all we could for our children and spent the time with them as often as we could we will feel a peace when we realize they are all grown up with families of their own as we look back.

Life spans a period of time for all of us. For some it can last almost 100 years with a richness and an abundance of experiences and family. For others it will be for an instant and for most it will cover many years with many experiences and hopefully very memorable and very happy ones despite the sad times. We all will have to face our mortality someday and that is why it is so important to actually live our lives and enjoy it because we will one day realize it does not last forever. It is only for an instant in the annals of time. We best get to live and enjoy our lives while we are here and we should also get to enjoy all the people who come into our lives. This is what our lives are all about and before we leave we will finally get to realize who we are. Hopefully it won't be too late before that happens.

In closing I just wish to say that my journey in life has taken me on a wonderful ride filled with many happy experiences. Although I have had pain in my life suffering from personal tragedies I have been blessed with wonderful parents who have showed me the way and stood behind me always. I salute my parents and I miss them very much. I am also the proud father of a teenage son who is the centerpiece of my writings. He is autistic and has many challenges but my wife and I love him very much and we encourage him always and want to see him happy and feeling confident in his abilities and filled with hope and joy always. He is our greatest gift and we want to see him live his life with a sense of purpose and a hope that he can achieve all that he wishes too. Our lives will be complete when we know he will be ok in his life and very happy. Our lives revolve around him and we will always be grateful for this.

Edward D. Iannielli III

The hope a new year brings

One thing I have learned in life is that we will always look forward to starting a new year fresh, make plans to improve ourselves, make resolutions to make change for the better and live with a renewed sense of hope and purpose. This is something we all tend to live by and it seems that we have the best of intentions in making this a reality. As I am getting older I am now seemingly taking the focus off myself and now trying more to focus on my son and his needs. I certainly plan to make improvement in my life and effect positive change but my real hope is to help my son make positive change in his life. With that said I realize before I can help my son I have to feel that I am in a good place and have a positive outlook about things with a sense of hope.

I wish to instill this same sense of hope in Matty's thinking so he will feel more excited and positive about his life which will help him to feel better about himself so he can make progress and find friends he so desperately seeks. My wife and I are so concerned for our son and want to see him happy and filled with promise and hope for the long haul. We can not predict the future but we can hopefully make a positive impact so our son will benefit and find a way to get past the things that hold him back. We all have our challenges in life and we certainly will get discouraged along the way and feel like giving up at times but we must realize that we are not the only ones who feel this way and if we can make the case for positive change we will then find our lives much more rewarding.

I feel when we offer advice to our children we tend to draw from our own personal experiences and try to adapt this to their situations. I have come to realize that this is not always practical because our children are growing up in a different time and the things that we can relate to may not be the same for our children. I have also learned over the years that autistic children have a whole different perspective of things so my theory of looking at how I would relate to something may not be the same for my son. This poses many challenges and requires careful planning and strategy. I have a whole different perspective of what it takes to make a friend then my son does. For my son it is much more difficult due to his situation and because of the distance in the school he goes to. When I was a kid it seemed so much easier to make friends but I too struggled and found I only had a handful of friends growing up.

The main thing a child needs in growing up is to feel positive about themselves. They need reinforcement and nurturing. An autistic child has many sensitivities and they require the same nurturing and positive feedback. If a child lives with love and encouragement they learn to accept themselves. For my son it is so very important that he feels good about himself and that we encourage him and help him to find things that will help him to grow and appreciate life. Loneliness is a feeling we all experience and that is a part of every one's life. We can not change that but we can help to ease those feelings and that is something I realize we need to work on with our son. It pains me to see our son pleading for friends and asking us to invite kids over to play with him when he really has not made real connections with them. I know when I made friends it was due to my getting involved in sports with the help of my parents. I played baseball as a 9 year old and the more I played through my childhood the more visibility it gave me which also contributed to my popularity and my ability to make friends. We have tried to get our son involved in team sports such as soccer, karate and bowling but it seems so difficult for our son to maintain his interest and desire to improve and be competitive. It seems he does not have the competitive drive nor the interest which poses some roadblocks for us.
We have enrolled our son in summer camp and took him to some scheduled social bowling outings but it is still difficult for our son to make friendships that last. I don't even know how to help him in this sense when I have work responsibilities during the week. It just seems so futile sometimes that I can not always be there for my son.  

I know many people say that if they came into fortune it would not really change their lives. I however feel it certainly would change my life because it would allow me to tailor my schedule around my son more. I don't have this luxury now since I have such financial obligations that dictate how I need to spend my time. If I had more financial freedom I would certainly have more time for my son. It is sad that we seem to get caught up in these financial pressures. I remember my parents felt this way too. If I could teach my son one thing I would teach him to learn to be more open minded and to not be afraid to be inventive and entrepreneurial.

I know my son likes to see things laid out for him like a road map clear and easy to follow. In keeping with that line of thinking I would suggest the following for my son:

1) Think positive and never lose hope
2) Always maintain discipline with school and homework
3) Never be afraid to talk to a fellow classmate
4) Try to find something of interest that allows for group involvement such as a team sport
5) Try to find something of interest that allows for group involvement in a club or activity such as drama, choir or boy scouts
6) Strive to do well in class and actively participate
7) Talk to your school counselor and let them know your needs
8) Talk to us about your needs and we will try our best to help you
9) Find things at home that interest you so after you completed your homework you can look forward to that
10) Ask your teacher to help in finding potential opportunities in school that you may be inclined to participate in
11) Always work on improving yourself and doing something that will help you achieve that
12) Always be yourself because you are special and you are a good person deserving of friends
13) If you share with us your interests and we find things you will like then we will find a way to get you there to participate
14) Have mom find nearby activities that will allow you to get involved and have fun after school and meet other kids
15) If you do participate in after school activities you will still have the responsibility in completing your homework when you get home
16) Maintain a journal and update it and get to communicate it with us so we can help you to get to where you want to go
17) Write down your likes and dislikes so we will know how to help you
18) Be open minded when making friends and understand you may not see them that often but when you are together enjoy that time
19) List out the types of games you like to play and we will see that you have the opportunity to play them.
20) Allow us to also be your friend and take you out to a movie or something and if it is OK one of your friends as well

This is just a starting point but it is where we should start so we can help you to achieve making a friend and help you in feeling better about yourself. We want this for you more than you could ever know and we all have to work together on this to help achieve it. We love you Matty and want the very best for you now and always.

Matty, Always remember that our love for you will never have boundaries and it will last for eternity.

Edward D. Iannielli III
 

In tribute to Ben

I never had the opportunity of meeting Ben Breedlove, an 18 year old who was diagnosed with a heart condition since he was a little boy. I was fortunate however to see his beautiful video that left all who watched it touched and very sad but very hopeful too. I cried as I watched his video and thought he had tremendous courage as he knew he was dying. I can't imagine what it feels like knowing you have a terminal illness and you anticipate death is imminent but you still try to live your life and still plan for your future. I never felt as moved as I did when I watched Ben's video. What makes this video so special is that Ben does not say a word.

What he did was tell his story on index cards which he held up for all of us to read. He showed one card at a time as he revealed his thoughts and feelings on how he cheated death several times and how each time he managed to survive when it seemed grim. He also pauses at times and smiles. In smiling he truly reveals a human quality that is so beautiful and as you watch you can't help but feel for him knowing that he had passed away on Christmas day, 2011. The video was made the week before and you would never know he was dying. He seemed like a typical teenager with hopes and dreams and a charming way about him.

The first time he reveals he experienced a near death experience was as a young child of 4 years old after having a very serious and life threatening seizure. He said he was diagnosed with hypertrophic cardiomyopathy which is a condition that causes blood flow to and from the heart to be restricted because of thickening heart tissue. It is a serious condition and can result in premature death. The sad reality for Ben and his family was that it was certain Ben would not live a long life due to his illness and he tried to live and accept his situation under the extraordinary circumstances. You could not help but shed a tear watching his video knowing he had already died but displayed such courage and hope. He also revealed in his near death experiences that he saw visions of bright light and felt an incredible peace. He has inspired so many with his incredible videos that have struck a chord with all who watch them . He also had a youtube page and a blog where he shared his thoughts and feelings on life and on his diagnosis.

I have seen a handful of videos made by others in tribute to Ben and was touched by two made by girls who also have personal battles of their own and you could see how they were deeply touched by his videos. One of the girls has only one arm and a stub where the other would be and she does not reveal this until the very end of the video after she shares her thoughts and feelings in her own words on index cards without speaking. She also praises Ben and sheds a tear for him and also shares her beautiful smile like Ben. The other girl also did a similar video where she shares her story of living with depression and how she was also inspired by Ben's story. She too does not speak as she relates her story on index cards as well and shares it with the viewers. I was touched by their stories as well and by how much they were affected and inspired by Ben. It really warms your heart and makes you realize how one person can touch so many and have such a profound impact.

I believe that Ben has been taken away early in his life because he was so very special and I believe he is an extraordinary person who has given us all a beautiful gift in revealing his life experiences and his message of hope. I pray for him and for his family that they will be strong and will get through this difficult time. I believe they will find healing in the power and beauty of their son's message and will continue to be touched by the worlds response to their son's beautiful videos. I believe they will also be inspired by their son's message and feel comforted knowing that their son is at peace and is now protected by God.

Ben is an inspiration to all. May he rest in peace.

Edward D. Iannielli III

Christmas, Autism and Inner spirit

The Christmas season is a time to share in the joy and celebration of the birth of the baby Jesus and to enjoy the special festivities with family and friends. It is a time when we all come together and extend our goodwill and exchange gifts and spend time with our closest family. We appreciate the smiles and the excitement in all the children's faces as they open up their presents underneath the Christmas tree. It is very special because it is one time a year and it allows us to appreciate what is most important in our lives which is our family and our faith. We are guided by our belief and faith and our strong ties to family. Our family is very important and it is the love and devotion that a parent has for their child that allows that child to develop, grow and to believe in themselves. Children are very special and they are so very dependent on their parents and must always feel safe and protected.

For an autistic child the bond between parent and child must be very strong. Autism is a condition that affects how a child interacts and relates to others. It is much more difficult for an autistic child to express themselves and to communicate openly with others. The challenges that face an autistic child are numerous and it sometimes can be emotionally draining for both the child and the parents. As parents we wish to do all we can for our children and when we feel we are on uncharted ground or learning we don't always know what to do for our special needs child. We want our child to enjoy life and have positive experiences. The most profound struggles my son has as an asperger's kid is his overwhelming feelings of loneliness and isolation. He has an intense need to find friends and to be able to relate to them. Our desire to help him achieve friendships and confidence in himself is our main focus. It breaks my heart when I hear my son cry out for friendship and I feel helpless in knowing what exactly to do. I speak to my son to encourage him to feel comfortable with his classmates and to never doubt himself. I want him to feel good about himself and to know he is loved and respected as an individual and as a beautiful child.

I also feel my son would benefit if he opened up his "world" and got more involved in activities that interest him. If he participated more he would certainly have more opportunity to find things he likes and enjoy the possibilities of meeting kids his age allowing him to develop friendships. The challenges I face as a working parent however preclude me from being there for him after school to take him and involve him in such activities. I wish I could dedicate more time to my son in this area but I am burdened with the normal pressures of life having to work for a living and in paying the mortgage and bills that never seem to end. My wife works also but it seems she would be more suitable in the role of helping him find friendships and fun activities to do. It is very important that our son does find these opportunities and that we help support him and encourage him. I wish I could do so much more for my son and deep down I find an emptiness in my heart knowing that I can not always be there for him though I certainly wish to.

When I have time with my son I try to make the most of our time together and we usually go out to the park, the mall or to a movie. These are fun things to do together but it still does not help him in finding friends. I realize his intense need to have companionship as he is so willing to approach kids in various settings and ask them questions. It may not be the most appropriate thing to do but he means well and it makes me feel that he is reaching out and I truly understand. He is such a kind and caring child and he has such a beautiful way about him. He is empathetic and is always there to calm a crying child. If he sees a child crying his immediate reaction is to run to that child and hug them and console them with words like this "Don't cry, everything will be ok." I am very touched by his actions and his kindness. I love my son very much and I wish to do all I can for him now and every day. I wish more than anything that he will find things he likes and he will have an abundance of friends. More than anything else I want my son to always feel confident and believe he can do anything and to always dream and never give up on hope. My son has an inner spirit that is strong and beautiful and I pray he will be guided by that in his life and that he will always feel comfortable with himself and always know that God is always there for him in his faith and in his prayers.

As we gather with our family this year I believe this will be a great time for our son to see all his cousins and to open up and share in the happiness and joy of the occasion. For many years we have avoided visiting with family and friends due to our son's difficulties and because we were concerned because of his inability to control his outbursts and his wishes of not wanting to go. We realize this is not wise to do because we are limiting his experiences and it is important that he integrates and feels accepted. If we avoid family then what kind of an example are we setting for our son? We must always help him to feel good and to have positive interactions and our family will always be very understanding and supportive. This after all is what our son needs and hopefully this will lead him on the path to finding comfort and opening up. He has a wonderful way about him with so much love in his heart, an inner spirit that is so powerful and a personality that is so beautiful that he deserves to be surrounded by others and to know that he is loved and accepted just as he is.

I wish our son and my family a very Merry Christmas and I hold on to hope that our son will find his way and know how much we love and care for him and truly believe in him. I want him to always know that his belief in God and family will always help him get through the difficult times in his life and give him strength to be himself and do all he dreams of. He is a wonderful kid and I love him and his mommy with all my heart and soul.

God Bless.

Love always,

Edward D. Iannielli III