Thursday, January 26, 2012
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
Monday, January 9, 2012
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
Saturday, January 7, 2012
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
Monday, January 2, 2012
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
Sunday, January 1, 2012
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