Saturday, December 25, 2010

A Christmas wish

The calendar shows that we are once again celebrating Christmas day and as I look back on the year I am truly grateful for all the special moments and joys we've shared as a family. I am reminded also of the challenges and new beginnings we face as well. It seems in life we have to balance the happy times with the difficult times and try to always maintain a healthy and optimistic view of life to help us and give us perspective. Christmastime is a wonderful time of year as it reminds us what is most important in life and that is to be thankful and joyous for our family as we celebrate the birth of the baby Jesus. We all share in the joy of the season and are happy to be together with our family and the ones we love. I have learned so much through the years since our son's birth in December 1998. This year will be our 12th Christmas celebrating together and it seems the years just keep flying by as each Christmas becomes a memory and a reminder of what is most important which is family and helping our son be the best he can be.

One of the biggest challenges our son faces is living to adjust to the difficulties he faces as a result of his autism and to try to do his very best at home, in school and in public. This school year has been a very difficult one for our son as he continues to struggle with socialization and behavior. I have been trying to understand what my son must endure on a daily basis but it is not so easy to get in his head to try to figure out why he encounters these difficulties and setbacks. He has had very difficult times in school so severe that he has been suspended on many occasions. When I think of student-school suspensions I think of unruly children who are troubled kids who have no direction and no one to talk to. In my son's case he is very much affected by his condition of autism and I am not making excuses for him but it is clear that he does not intend to behave poorly. He is struggling internally with his emotions and is unable to control his behaviors because of his inability resulting from his lifelong condition of autism, adhd and epilepsy which has been diagnosed since he was 3 years old.

If I could be blessed with one wish this Christmas it would be to have my son back in a way where he can function and carry on his life as normal as possible so he won't keep missing school and so he can be properly socialized and develop healthy relationships and friendships. It is quite difficult for him at this point and it really affects his mental state and we are also deeply affected and it can be said that our hearts are indeed broken. There is not a day that goes by when I am not consumed with concern and worry over how my son is doing during his day. I have been trying my best to carry on and be strong but his recent declines has affected my own outlook and I have to find a way to help him.

He is currently without a school and this is weighing heavily on my wife and I as we feel helpless and realize how important it is for him to get along and attend school and get back to a normal routine. He has absolutely no control over how to conduct himself and it is causing his experiences and contacts to narrow which is resulting in isolation and controlled settings and under these circumstances he is not growing and developing as he should. It sometimes seems so hard to raise an autistic child and I am sometimes so frustrated that I feel I have no control. It can be very emotional and I have felt very sad for my son's situation as I try desperately to help him so he can have some semblance of normalcy in his life.

If I could find a way to get through to my son about life and disappointment and what we are here for I would be halfway there in helping him but it seems that whatever I say and whatever good intentions I have they get lost in the painful reality of disconnect that most autistic children face and experience in their lives daily. I have enlisted the services of doctors, counselors, teachers, therapists, family, friends and my own efforts in research and obtaining support in helping my son, my wife and myself. It is a long and very winding road and it seems we will travel this road with our son for the rest of our lives as we try to be the best parents we can in helping, advising, teaching and supporting him in his life and his world that can at times test our very limits and cause sorrow when we come upon consistent roadblocks. We will strive to do all we can for the sake of our son and we pray that one day our son will realize how special he is and how much he has to offer in this world we live. Our son has a truly good heart and he would never intentionally hurt anyone. In fact he wishes to help everyone live a better life. The reality is that he first needs to accept his situation and draw positive from it and accept us in our role in helping him as his loving and supportive parents. 

Christmas is a time for joy and hope and that is what I hold onto for my son. I pray for him everyday that he can have a breakthrough and can live and do all he wishes in his life. I want him to know that he is a good kid and has a kind heart and is special in so many ways. I want him to know who he is and I want him to live with courage and confidence and to face life head on with optimism, happiness and love in his heart. I want him to know that his mom and dad will always be there for him each and every waking day of his and our lives and we will all face it together and work on helping him to achieve his own independence when he is ready to do so. We will always put our heart and soul into raising him and providing him with love, support and will expect of him to always do his best. May God always walk with him when we can not and lift him up in his time of need. 

Merry Christmas, Matthew!

Mom and Dad love you very much!

Edward D. Iannielli III    

Thursday, November 18, 2010

Autism - Bridging the gap

As a concerned father it is only natural that I want things to be perfect for my son. Sometimes as parents we come to the reality that our child will have struggles and it can be heartbreaking to have to come to terms with that. Raising an autistic child requires a great deal of patience, understanding, encouragement, support and an enduring love that will last forever. I have a sincere hope that my son will have a wonderful life filled with joy, happiness, friendship, love, ambition, success, courage, pride, accomplishment and vision. Our children are an extension of us and we always want what is best for them. We may not always know what that maybe but if we work hard in championing our efforts and seek the needed advice, counsel, support, therapies, schools and dedicated professionals that will help us in our mission in helping our child we will start the process in bridging the gap between our autistic child and the world they live in.

It all starts at home with the nurturing that only a loving parent can provide to their adoring child and a commitment that is unwavering and with firm resolve. Love is special and the love of parent and child is unconditional by nature and the most special bond we can ever have.  Sometimes I cry because I just don't seem to know all I possibly can to help my son and when I see him struggling with his behavior and unable to fit in I really find myself at a loss when it seems that everything my wife and I try are just hopeful attempts in helping our son to get on the right track with school, with understanding the consequences of his actions, with his behavior and with his ability to find meaningful friendships. I am not easily discouraged but raising an autistic child can cause emotional upset and a feeling of hopelessness sometimes.

Everything we do for the benefit of our children is with sincerity and with love. I speak from the heart when I say this because from the day our son was born I pledged to myself, my wife, our son and to God that I would do all I could for him and we would never lose sight of that no matter what. I mean no matter what so for our son who has had quite a bit of challenges with his conditions of epilepsy, autism, adhd and bi-polar disorder it can be said that the days do not come easy for him or for us as his loving parents but we stay together focused in helping our son to have better days ahead and a hope that will be eternal that he too can have a life filled with many expectations and opportunities as we work together to bridge the gaps along the way for him.

As much as I need to be with my wife and son at these times and to be strong emotionally and focused sometimes I need my space to be alone with my thoughts and have my own private time. It may seem selfish but I have to have perspective from outside of the situation and sometimes I need to feel detached from it so I can be somewhat more objective. I am too often an emotional person and I can be read very easily and it is not uncommon for people to pick that up with me as I am always worrying for my son and I feel I need to distance myself at times so I can be stronger and help my son more effectively. It is a daily toll when it seems that all our efforts sometimes don't measure to what our hopes and expectations are for our son.

I learned early on that we will not have perfection in our life and we must adapt and accept ourselves, imperfections and all. We must always remember that we are never guaranteed anything and we have to be grateful for every day and make the most of it. Life is never always certain so it is with this reality that I take one day at a time and I try to teach my son this also. We don't try to do everything at once. We take it step by step so we don't feel overwhelmed and we try to find the good in everything because that is always the best way to see things. I always learned that from my parents and I know this is what I need to teach to our son. 

As parents of an autistic child we rely on so many people to help us in helping our son and it is always our hope that all we do will someday make a difference and help bridge the gap for him towards having a happy and meaningful life. That is our hope and our dream for our son. 

Edward D. Iannielli III

Friday, October 29, 2010

Learning and understanding our child takes time

Children are the precious gift we are blessed with as parents and they teach us about life and responsibility. Raising a child is our biggest challenge and it is one that is a lifetime commitment that requires a great amount of devotion, patience and a whole lot of love and understanding. We all have our views in raising our child and we all want the absolute best for them. We will move heaven and earth to help our child find their way in the world and provide them a loving, nurturing home where they feel happy and comfortable. As parents we wish to offer our child the world but we have to be realistic in what we can and can not do.

When I am working and my son is at school I can't help but think about how he is doing and how I miss not seeing him. We all have our daily routine and may not get to spend the time together that we would like to so when we do have the time to spend together we take full advantage if it. As the years go by I can't help but wonder how the time from when our son was born to today has just gone by so quickly. It seems that childhood is such a joy and a special time in our lives but it is fleeting so when we have a child we try to allow them to be children for as long as possible because when they reach their adolescence it is a coming of age for them and for us as parents. It is a difficult reality to come to grips with and the sign that our child is growing up and we have to allow them their space and at the same time always be there for them to advise and teach them about life and maturity.  

To reach our child we need to truly listen to them and let them speak and express themselves. All children have a voice and they should be heard. The relationship between a parent and a child is a special one and it is a lot of give and take. Early on it is pretty structured as it is constant monitoring for their safety and making sure they are properly fed and changed. It is a time of great joy and learning. We are very in tune with our child as a baby and we feel that it is a very special time in our lives that is fleeting and before we know it is over just like that as our baby is now a toddler.

As parents we try to relate our childhood and growing up and our relationship with our parents to the present for a point of reference. I sometimes think to myself when I am in a situation where my son is having a meltdown and I am trying to calm him what my parents would do. I always try to maintain calmness and reassure my son to help ease him through and encourage him with words that are soothing to him and will help him.

As our child grows we try to keep up with their changing needs and adapt to their situation and guide them and be there for them as they see the world differently from the day before. Life has a way of changing as the years pass and it is our responsibility to meet the challenges that lie ahead so we can address our child's needs.

Once we finally figure out our children they are now young adults and their life has taken shape from our relationship with them, their experiences growing up, their friendships and their education. It is our wish that our child will pursue their education and strive to always do their best and to develop a healthy and happy personality that will help them deal with all of life's situations.

Raising our son is the best thing Maria and I have in our life and we wish to do all we can to assure him a happy and memorable childhood and equip him with confidence and a feeling that he can do anything he sets his mind to.

Edward D. Iannielli III


Sunday, September 19, 2010

Autism, behavior and a child's fight

I am not sure why autistic children in general have so many difficulties in their young lives. It seems they have many challenges that most of us have integrated in our lives successfully. There are so many questions that come to mind relating to autism and I realize not all autistic children are the same so these questions certainly won't always apply to all and may only apply to some so please do not take offense to any of these questions but I find that they have entered into my mindset because of our personal experiences. We always want to improve upon the situations and do all we can but realize we need help, support and guidance and doctor's who are committed and truly care. As I think of the many questions these are some that come to mind.

How do we help an autistic child to freely talk and express themselves? How do we help an autistic child to feel emotion and use their eyes to make contact with others? How do we make it easier for an autistic child to experience change in their normal routine and accept it? How do we help our autistic children to eat healthier and not be as fussy? How do we help our autistic children while they are experiencing a meltdown and help them afterwards? How do we encourage our autistic children to find friendships so they don't have to do things alone? How do we teach our autistic children in understanding right from wrong so they finally do understand? How do we ease the burden of our autistic children so they don't have difficulty sleeping anymore? How do we teach our autistic children to be patient and follow the rules so they don't test the patience of others? How do we help our autistic children so they don't get in trouble for poor behavior? How do we teach our autistic children the fundamentals of sports so they have less difficulties with coordination and gain an appreciation of sports participation? How do we improve our autistic child's self esteem?

As the father of an autistic child I have been asking myself and others these questions for the longest time and still don't have the answers. I have learned though that it is very important to embrace your autistic child and show them love, understanding and compassion. Equally as important is letting them know that you will always be there for them no matter what.

I have had times of great frustration in seeing my son struggle and seemingly shy away from others. I know the pain of being lonely and feeling shy so I certainly can empathize with my son. I only wish to see him be happy, feel good about himself, make friends, follow the rules, behave appropriately at school, in public, at home and at family gatherings, do his homework and always try his best in whatever he does. I don't think this is unreasonable to wish for but I know how hard it is sometimes to get through to an autistic child. I am praying for my son everyday and hoping his behavior will improve as he realizes the consequences of his actions. He is a pre-teen and I am concerned for him during his teenage years and hoping he will be a mature and responsible kid as he grows. He has his share of difficulties socially and sometimes has a disconnect with reality and acts out in ways that are considered inappropriate and I get so frustrated because it seems no matter how many times I talk to him to help him in realizing right from wrong he seems to not understand and I am trying my hardest in looking for answers as to why.

I just can't always be there physically when my son is having difficulties and when I am it is never for the same reasons. Anything can cause him to react out and have a bad outburst such as a meltdown. He does not seem to have a grasp of his surroundings at times and will react. This is quite hard on us as his parents. We want him to always feel comfortable within himself in any given situation and it seem that is not so easy for him. We speak to parents of autistic children and they also feel similar to us in how their child will react out at any given time and any given moment. I feel very alone sometimes as the doctor's are not there to help us get him straight in his thinking. Our son is a wonderful kid but he seems to march to the beat of a different drum and I just don't know why it is so hard for him to just listen and understand. I love my son and wish to help him but I am not a psychologist or a doctor and the one's we rely on have many patients and Matty is just one of many and a 15 - 45 minute session once or twice a month is not going to make the difference it seems. It is a financial drain also as we are responsible for part of the medical bill and seemingly not getting all that we need to help our son.

I wish I knew how to calm my son and get him on the right track. Is it going to be sedation from medication that we will ultimately have to choose or will he finally come around as he matures? Honestly I do not want to have to face that choice as I lost my mom to being heavily sedated from medication from her illness and it affected me and made me realize how so unfair life can be sometimes.

No matter how difficult the road seems and how emotionally draining the situation I need to always be there for my son and guide him as best I can. I am far from an expert in raising an autistic child and I personally have not met an expert in childcare but I do know that my son needs me and needs our love and encouragement and that is certainly something we can provide as his parents. I also need to be as patient and understanding with my son as I possibly can and be not only his father but his friend.

When I was told long ago we would face many challenges in our life I did not realize that my biggest challenge would be in understanding my son and loving him with all my heart and soul and being the best dad that I can possibly be. This is my greatest challenge and one I accept with all the love in my heart.

My son also has the biggest challenge in his life and that is to always listen, follow the rules, try his best always and find the internal strength to conduct himself appropriately in all situations and live his life to always respect, honor, obey and know we are there with him and God is always by his side. This is his fight to be the very best he can be and we are on his side as we always have been.

Matty, Please always remember this!


Mommy and Daddy and Grandma

Edward D. Iannielli III    


Monday, September 6, 2010

Autism and a new school year

Well as I look at the calendar and we turn the page from August to September and we make our last visit to the pool and our last car trip of the summer to a fun destination we are now preparing our son for the new school year. It seems the months between mid June and early September seem to fly by and the long anticipated summer is now behind us and the prospects of a new school year now face us. As the father of an autistic child I am always concerned for my son and how he will adjust to the new year, the new grade and now a whole new staff of teachers. This year will be a true test for our son because he will be mainstreamed for the first time and will have 6 separate classes. I am hopeful he will adjust to the new classroom settings and will apply himself like I know he can. We always will be there for him and making sure he is responsible in doing his assignments and communicating with us about the new changes.

It will take him some time to adjust I am sure but we will have to make sure he adapts as quickly as he can because the teachers will demand him to be at his best and be responsible as a 6th grader should be. It seems hard to believe my son is a 6th grader now because I remember quite vividly when I was a 6th grader as that was the first year I attended a new school as my family moved from Brooklyn, New York to Bellmore, New York and I had to adjust to a new school, new friends and a new home. It was an adjustment for me but I managed and that is what I expect my son to do also. As I think back to my years as a 6th grader I feel I was pretty mature and pretty responsible as I learned well from my parents. 

My son is mature and very bright but seems to have the typical social disconnect that most autistic children have and that is what we have been trying to help him with in improving upon so he can develop and make more friendships and have more experiences that will help him grow and blossom as a child should with his potential and pleasant qualities.

This summer was the first time Matthew attended summer classes as in the past he attended summer camp. After a rocky start and a change in schools he seemed to adjust fairly well and seemed to enjoy the experience. We believe it was a step in the right direction for him to attend summer class to help him maintain the structure of the school setting and give him the continuity that he needs and maintain his academic skills.

Another plan I have for my son is to get him involved in a sporting activity that will teach him discipline, provide him a valuable skill and help develop his confidence and self esteem and I am hoping he will take to it and enjoy the lessons and develop friendships and learn from a dedicated and understanding instructor. I have always felt that Karate would be a wonderful sport to introduce my son to because it teaches the art of self defense, it teaches skills and it promotes achievement and develops confidence and helps with improving self esteem. This is all that I am looking for to help my son and I will provide him this opportunity if I feel his instructor can teach him, mold him and help him.

I look forward to the new school year for my son with hope and optimism and I wish I could always be by his side every step of the way. I realize growing up is not easy and I sense my son is having concerns and expressing fears and I need to find the appropriate ways to teach him how to deal with his feelings and to just help him realize how he should just enjoy being a kid and do the best that he can without getting all nervous and uptight about it. I know what he is going through because I have gone through it and all kids go through it and it seems life can be complicated and filled with so much uncertainty and times of feeling unsure and lacking confidence. That is the time when we have to open up and share our concerns and thoughts with someone we trust such as a parent, a teacher or a close friend. I always discuss with my son that he should always talk with me or his mom about anything and everything that he is experiencing and concerned about. That is my biggest responsibility as his father and I want my son to know that he can come and talk to me anytime. Every parent should always make themselves available to their children especially as they reach the adolescent years. 

Well my son will start school in a couple of days and we enjoyed some days of fun and recreation together this past week which I know is important and made a difference. We spent a day at Splish Splash in Riverhead which is a fun waterpark and we also went to Dorneypark in Allentown, Pennsylvania which was a blast as we enjoyed going on all the fun rides and we just spent the hours at the park hoping they would never end. The days were fun but went so fast and now we are ready to go back to work and school. Once Matty starts the school year and gets used to his schedule I'm sure everything will be just fine. I have every confidence in my son and I will be there for him as he is my pride and joy. Matty knows how much his mommy and daddy love him and he knows the importance of school and that we will always be there for him as he start another year of school. Good Luck Matty!


Mommy and Daddy

Edward D. Iannielli III

Monday, August 30, 2010

Autism Insight: A child's view

I have been touched emotionally in many ways because I had loving parents who taught me early on to always be thankful and appreciative for all the small things in life that bring us joy and happiness. It is so true how simple things can make us feel so good and help us smile, laugh and cry all at the same time. It is a blessing to have the capacity to feel and to express ourselves. I knew as a child the importance of earning one's trust, the joy of establishing friendships, the ability to open up as a person through self expression and the bond essential in life between us and our parents which we hope lasts a lifetime. As children it is important to always feel safe and protected and I knew we were each and every day of my life because of our loving parents who always did all they could for my sisters and I.

As we find out in life as we experience it each and every day it is far from perfect and as much as we hope to have joyous and happy days we will encounter times that will challenge us and days that will make us cry tears of sadness. It is a natural and very real part of life and we have no control over it no matter how much praying we do. I find that we have to approach life in a way that allows us to appreciate what we have and to strive to do our best and to give thanks to all who have touched us along the way. We also have to be realistic about life and know that we should always be grateful for yet another day we wake and spend it with our family because we don't know how many tomorrows we have. It is so important to just live our life and surround ourself with the ones who mean the most to us, our family and our friends and always be there for them.

Our children are the ones who need us the most and we need them as well and we have a precious gift from God of sharing our life with them and seeing them grow and develop from infants to young adults and experiencing living through their firsts, their joys, their tears and their accomplishments. Having a child will change your life and give you insight into your parents' experiences and will help shape you and teach you more about life then you could ever learn from a textbook. In the initial days of our son's birth we were learning and doing all we could to make sure we were attentive to his needs and we were nervous but we knew we had to just be natural, calm and just be grateful for having this wonderful opportunity and blessing.

It seems like a blur now thinking back to my son's early days as a baby. Some days stand out but the time just seemed to fly by and it seems sad in a way how life seems to be so fleeting and before we know it our babies are growing children approaching young adulthood. It is our responsibility as parents to raise our children and teach them and help them develop self esteem, confidence, establish trust, learn to respect others and to conduct themselves appropriately in all situations. We always want the best for our children and we want them to feel loved and to have the confidence to do their very best and to find happiness and faith.

As a parent I feel it is our top priority to listen to our children and teach them to never be afraid to talk and express themselves and share their feelings and thoughts. With autistic children I also feel it is imperative to listen and respect their feelings. I have been on a roller coaster ride of emotions since finding out my son was diagnosed as autistic as a toddler and have been unsure sometimes on how best to handle conversations about it with my son. I certainly have written a lot about it and put a lot of time and effort into trying to understand it and share our experiences. I have to also remember that it is most important to listen to my son and understand his feelings. I am not trying to label my son or have him feel different because of his diagnosis. I just want him to understand that no matter what doctor's and professionals diagnose his condition as, he should never feel limited or different. He should find the courage and strength to live with his diagnosis, never give it a second thought and turn it into a positive so he can strive to do his best and find his talents and interests and follow his dreams.

I write because I love my son and wish to help him and realize I openly express my feelings and experiences about his diagnosis and feel this may not always be a good thing because it affects him and I don't want to have him constantly reminded about his diagnosis. In a way I feel the writing is necessary but I also feel I need to distance myself from it and not always think about it as I do. I have the best of intentions but feel I also need to honor my son and try to take the focus off the diagnosis and direct my writings, feelings and thoughts in a constructive way that will help us both. I can't help the fact that I have these feelings running through my mind and need to channel them in a positive way. All my writings are meant to be a constructive way of putting my emotions, fears, concerns, ideas, thoughts, visions, hopes and dreams to life in a positive way with the intention of helping my son and hopefully someone who is also experiencing the same with their child and their diagnosis of autism. To me I feel that the diagnosis should never limit my son and I will always encourage him and always be there for him and I feel my writing will be there for him years from now when I may not. For me that is also why I write so I can leave something tangible for him. I would love to leave him millions of dollars but that is not reality so my writings will be a gift from my heart.

I have asked my son to share his feelings on Autism with me and not to be afraid to. He has told me something that took courage and made me realize how important it is to give a child a voice. What he told me brought a tear to my eyes and made me feel very lucky to have such a wonderful son. What he said to me is this: "Dad, I know how your writing helps you to feel better and I think that you write about autism because you really care about me and want me to be ok like mom does. I wish I never had autism but I do but if I didn't I hope that you would still write about me like you do." When he said this to me I just told him how much I love him and that I would write about him with or without autism because he is my life and I am so very proud of him. I also told him how I wish to write about "Pop" because he was so brave and he did so many wonderful things and he was always telling Matty that he could do anything and that he was so proud of him. When I think about this I feel such emotion and that is why I write. I have been blessed and I want my son to know how much mommy and daddy love him and want to see him do his best.

Dedicated to Matty and Pop.

Edward D. Iannielli III      

Monday, August 23, 2010

Autism expressed personally in my own words

I have been writing about autism for a year now and I am working on a website that I created which is a work in progress called which is something I am very passionate about. I am very concerned for my son and his future and I am doing everything in my power to help him whether it is spending a wonderful day with him at the beach and a movie and bonding or writing while he is asleep to express my feelings and hopes and dreams for him. I have been also trying to find ways to hopefully raise money to help with his increasing medical costs and future college tuition through links with Amazon on this blog and on my hubpage writings and on my website.

If people only knew how autism affects the child and the family. It is a challenge that we all must take on and do our part in addressing to help our son and provide him with our love and support. Our son has such courage and we are there to support and help him as he grows and develops. We are his hope, his support, his lifeline and his vision. We share in his pain and we also share in his triumphs and moral victories and we take great joy in knowing that he is trying his best and we are too. We do everything we can for him in hope that he will find his way and discover that he has been blessed and is truly special.

I feel privileged to have a son and to be able to teach him and help him grow and experience everything that a young boy should. We are teaching him the ways of the world so he can become a young man and go out into the world and strive to do all he is capable of. As a young kid growing up there are many new and wonderful experiences that will be encountered. It seems that even kids have their fears and doubts in growing and maturing. I see my son now becoming a young man and I still see him as a little boy but I can't help but notice that he is growing and not the little boy we once knew. We are learning and growing too as he is and it is even difficult for us to come to grips with.

For as long as we can remember our son has always been treated with special care because of his autism and now he has to conform and follow social norms as he is now nearly a teenager and we are concerned for him and hope that his transition to his teenage years will be smooth and that he will have positive and normal experiences that typical teenagers have. We have to be strict with our son and we have trust and hope that he will be fine through these difficult years. They can be quite emotional and painful times and when teenagers start to notice the opposite sex that is a time of great awareness and self discovery which can be a difficult and anxious time. We all go through it and try to keep our emotions and feelings in check as best we can. It is not easy and that is the time we need to aways be available for our son as he continues to grow and experience young adulthood.

If I had a way of protecting my son and shielding him from life's difficult times I would but it is beyond our control and all we can do is be there as his support system and let him know that he should never be afraid to grow up. It is a part of life and we all must grow up and become responsible adults. It sometimes can be a bitter pill to swallow and that is why we always have to listen to our kids and never discount what they say. I can not stress how important it is to listen and always provide a calming influence in our child's life. They look up to us and learn from us so we have to be there for them and lead by example. We are not perfect but we have to be the best that we can be so our children can be the best that they can be.

My biggest frustration in raising my son is that I feel I am not always there for him but my intentions are always good and I always try to speak with him even if it is only on the phone. When I have weekends that is when I feel it is absolutely necessary that we do things together. I also want my son to expand his positive experiences and learn to find his way and discover his likes and dislikes. I can not choose what he should do but I need to lead him to find what he may find interesting and appealing. As a father I always want to be there for my son and know that he is making progress and is doing good and is happy but I feel he is still not making friendships because of his lack of social connections in clubs, organized sports and outside interests. I hope he will find as he gets older and moves up in his schooling that special interest that will help him develop as a person and raise his self esteem. Maria and I will always be there for him and cheer him on in whatever he chooses and our hope is that he will find his way and find self acceptance, happiness and friendship.

When I spend time with my son I am delighted but when we are apart because of a long work day or a business trip it can tug at my heart and sometimes I feel it is more difficult for me being away than it is for my son. I am always reminded of the Lonestar song when we are apart and I am reassuring my son that I am always there for him even if we are a distance apart. The best thing to happen in my life was marrying my wife and becoming a dad to my son Matty and it has been quite a ride that I always enjoy and never take for granted. It is our children that bring great joy to us and we learn so much from raising our children and they bring out our very best because they need us and we need them.

Edward D. Iannielli III

Friday, August 20, 2010

A wondrous bond

Did you ever want to just get away from the normal routines in your life just for a brief time to experience what is most important to you? I believe they call this time vacation with the family. If it wasn't for vacations we would feel a longing and a sadness that working simply can not satisfy. If you were to determine the span of your working life and the time you spend with your family you would realize how much we are missing out on spending quality time establishing healthy relationships with our children. Raising a child in difficult economic times is very challenging and we feel that our commitment  to our employer and our work is top priority because of our need to provide for our family.

Equally important is establishing a healthy and wondrous bond with our child that allows us to connect and have enjoyable times together. What would the value of our life be if all we did and cared about was our career and our work? We would feel as if we lost a very important time in our life and that time can never be captured again. Once it passes it is gone for good. However if we shared many times with our children and maintained a healthy balance between work and family then we would have the many wonderful memories to go along with the many happy times spent together.  

I have always felt the joy when I share happy times together with my son. We both enjoy seeing movies together or going bowling or swimming at the local pool. These are simple things but to my son these are great outings and it makes me so very happy when I see my son happy and enjoying himself. It is my sincere hope that my time spent with my son will help him in learning about life and establishing relationships. My son is a wonderful child and we are so very proud of him because of his happy disposition and his kindness and compassion. Although he is autistic and has his share of difficulties socially he really does have quite a personality and is  a very caring child who wishes to solve all the problems in the world.

I share a love of music with my son and I have taught him about some of the great groups I listened to as a kid and he has developed an interest in those groups as well and we love to watch some of them in amazing and treasured video portrayals on youtube. We have become great fans of youtube because of the ease in finding artists of the past and sharing in experiencing their performances. A great example of this is watching Elvis Presley singing Blue Suede Shoes back in the 1970's or Peter, Paul and Mary singing Puff the Magic Dragon or Three Dog Night singing Joy to the World. There were so many wonderful groups that we like to listen to from back then and their music still lives on WCBS FM and Youtube.

Two artists that we both enjoy listening to who both have songs that really grab a hold of you and shake your world with their message of father and son relationships are the late Harry Chapin and the late Jim Croce. I always loved their songs "Cat's in the Cradle" by Harry Chapin and "Time in the Bottle" by Jim Croce. Both songs are enough to make a grown man shed a tear after listening to them. I have grown to understand the importance of both those songs as a father of a special needs son. My son has taught me so much and for that I am very grateful because he is very special to both my wife and I.

If I could relate and convey to someone what is most important to me in my life I would have to say the relationship I have with my son as he has such a way and is such a great kid. He certainly makes me realize what is most important in my life and I am very appreciative to both my wife and son who make my life complete.

A traditional concert that we plan to go to again at Christmastime is Transiberian Orchestra and we are just so excited and delighted to go. It will be our 3rd year in a row and each time is an experience that leaves us feeling inspired and very happy and in the moment. It was their music I was listening to the day my son was born at Mercy Hospital as I was driving back and forth to visit my wife and new born son and everytime I play or hear Christmas Eve in Sarajevo 12/24 I get pretty emotional as I hold my son's hands in the concert and think back to the miraculous moment of his birth.

I will always make sure I spend as much time with my son as I possibly can because that is what makes me truly happy.

Edward D. Iannielli III 

Monday, August 16, 2010

My inspiration: My dad, my son and autism

I have been wondering what my first post entry on this blog would lead to and I am starting to realize the magnitude of it all. What started innocently as an exercise in self expression by writing things that were  joyous, painful and very real to me has developed into other ventures which include pages on facebook that cater to Autism and feature my blog entries and a website I created. I am proud to say that my writings have received some attention and have been read by many on facebook. I am happy to have an audience that can relate to what I have to write about and I am very grateful for the positive feedback. I even have some followers here on blogspot reading my blog which is nice to know. I have been writing for over a year now and I am grateful to blogspot for giving me this opportunity to write and share my feelings that are personal and heartfelt.

The reason I started to write this blog initially was to help me cope with the sad and tragic death of my dad which was unexpected and ruled a suicide at our local train station. I had always looked up to my dad and I miss him everyday as he was a big part of my life and was very supportive of Matthew and our family. He was a very proud and humble man who would give the shirt from his back to his fellow man and would always put in a hard day's work as an ironworker. He was a great husband and a great father and he and mom were both wonderful parents and are both missed and are now together once again as I believe it so in my heart. It is my dad who inspired me and spoke encouraging words to our son and spent quality time with him when he would visit.

I have primarily focused on Autism and our experiences with our son in my blog but have on occasion wrote about my personal reflection of my childhood growing up and about my mom and dad and my two sisters. I also wrote about tragedy and coping with losing both my mom and dad 19 years apart. My dad was very sad and was certainly very loyal to mom and never remarried as she was his love eternal. Dad had a lot of courage and he was a very kind, caring and compassionate person. It is very true how you really miss someone when you no longer have them and when they were here you never really appreciated them as you should have. 

I find writing a truly liberating experience that helps me express things I can not verbalize with others. When I write I get pretty deep in expressing my feelings and I speak with a purpose and with emotion. I am much happier when I write because I can open up and share what I am going through and I feel that it is a healthy and necessary outlet for me. If I kept it inside I feel I would be very upset. It's like opening up the floodgates and letting everything pass through. It is a cleansing of the soul and a penance. As a result of my writing I feel it is very important to be responsible and to be respectful with all that I write about and to be sincere. I write from personal experience and sometimes those experiences can be very painful and other times they can be very joyous. That is what life is all about with the highs and the lows that we all experience.

When I started writing I had no idea that it would lead to the creation of a website. I am very proud to form a website and I feel it will help our son and it will also benefit others who are going through what we are. The autism community is a wonderful and very supportive place and it is where my wife and I go when we need guidance and inspiration. Every parent wants to do all they can for their child and always be supportive and understanding. With special needs children comes the need for a great deal of patience and an unconditional love like no other. You will find there are not enough hours in the day to do all you need to and the time for rest which is much needed becomes less and less with all the worries and concerns.

Now that I have been writing for a while I think it is a good idea to go through my posts and see how I can have it edited into a possible personal account story of  A father's love, My son and autism which would be a wonderful account of my family, our son and dealing with the highs and lows of life and autism. I am proud I have stuck to my writing and have been very responsible and very compassionate in my views. I feel this is my lasting legacy for my wife and son and what better gift to them then the words of love and hope that come from my heart which is directed to them both.

I highly encourage anyone who is dealing with autism or a child with special needs to always have hope and to stay focused in what you need to do for your child. It is critical that you take action early in the child's diagnosis and to be aware of the warning signs such as limited expression of speech and eye contact and a general disinterest in activities. Never take anything for granted. If you are unsure then go see your child's pediatrician. You can never be too certain. Autism is on the rise and it should be taken very seriously.

If you have been introduced to my blog I encourage you to continue to visit it to read my writings and to also visit my facebook pages:
Autism Insight
Autism Dreams
Autism Vision

Now that I have created a website inspired by both my dad and my son I also encourage you to visit there as well.

I thank you, my audience always for your interest and your kindness.

I thank my son for his courage and his innocence and for his wonderful ideas and inspiration.

I thank my wife for her love, patience and understanding.

I thank my parents for their love, their compassion and their guidance in my life.

I thank God  for blessing me with a wonderful wife and son.

Thank you blogspot!

Bless you all!

Edward D. Iannielli III
A Father's Love, My Son and Autism

Sunday, August 1, 2010

A dream, A hope, A wish, A prayer, A life and Autism

It is very important in our lives to dream as young children and to always be encouraged by our parents to reach for the stars in all that we do. When we are kids we are constantly evolving and growing and we are always learning and developing throughout our youth. The time in the life of a young child is very special and it should be filled with hope, optimism, encouragement, enthusiasm, wishful thinking and prayers to God for our child's good health, happiness and a life filled with promise, hope, dreams, vision and self confidence.

It is every parent's hope that their child is healthy and able to develop naturally and adapt to the typical changes that children encounter as they grow. We all are grateful for being blessed with a child in our life and we always want the best for them. If a child is born with autism or some form of disability it means that child will have some challenges ahead in their life but they should have the same dreams and hopes that every child needs to have in their life. My son is autistic and he has challenges that we are trying to help him deal with. At times it seems he will have his share of difficulties and periods of isolation. I only wish that he could realize when he struggles that he has the love and support of his mom and dad and he has many in his corner working to help him.

For many people Autism is not really understood and from outward appearance for the typical person raised in a typical community very difficult to assess. There are many autistic children who from first impression seem normal in ways so when they seem to react out in an inappropriate way to the dismay of others it seems they are defiant and unruly. This for most autistic kids is the furthest from the truth and  it seems the parents are thought of as not being able to discipline their children. The reality is that the parents will do anything to help their autistic child and they put so much time, effort and compassion into raising their special child so they can hopefully fit in and have lesser outbursts and meltdowns. It is not easy raising an autistic child and for most families it tests their very limits of patience and endurance and adds a great deal of stress and financial pressure on the family. It is very important to accept the situation and work together with family and all in the support network to help that autistic child find their way in the world.

To an autistic child the world can be a very scary and intimidating place and they would rather live in their little place that is safe and free from confrontation. Autistic children tend to have social difficulties and feel that they can not fit in unfortunately. It takes very committed family and professionals to help address these children with their thoughts and insecurities and help them through these social obstacles.

It is our dreams, hopes, wishes and prayers that help us through these challenging times and give us the insight and knowledge that will help us find the dedication we need to get our autistic child on the right path in their life so they can have the same chances and opportunities that all children deserve in their life.

The one thing I have learned about raising an autistic child is that my sense of life and purpose evolves around my son and everything I do or plan to do is for helping him become better and more self confident. Autistic children do tend to suffer from anxiety and have many challenges and it sometimes can be emotionally very trying in their life and the parent's as well. As a parent I strongly urge you to never give up on your child and to always show compassion and hold on to hope and provide love, support and encouragement. There is nothing like seeing an autistic child blossom and come into their own after realizing the struggles they encounter.

To see an autistic child smile and hear them acknowledge that they feel loved and accepted and to truly help them find something that challenges them and gives them self confidence is the best gift we can ever experience in our life as parents.

The many ups and downs we will encounter as parents raising our children is all worth it if we can set the standard for them so they will benefit and grow and become happy, well balanced, confident and caring young adults ready to take on life's challenges and have dreams, hopes, wishes and vision. I pray everyday for my son to have a wonderful life with Autism.

Dedicated to my son who inspires me everyday.

Edward D. Iannielli III

Saturday, July 10, 2010

Finding inspiration and teaching my son values

At times I feel a need to reach out and talk to someone else as I worry naturally given the difficult economic times we live in and I always am concerned for my son and his needs having both an autistic spectrum disorder and epilepsy to deal with. I am sometimes not sure how best to make things better for my son. My main concern is that I provide a safe and certain home life for my family and a loving and nurturing home for our son free from worry. Given the times we live in today I find I think and worry a lot more. With the rising costs in medical care and the continuing escalating costs to live today it's a wonder how we can maintain peace and happiness in our lives. We are under so much stress today and I have many sleepless nights. I want my son to feel safe and protected at all times and I always make sure I always listen to him and spend as much time with him as I can.

As a father of a young son I want everything to be perfect but it seems that is an impossibility so I try with all my heart and soul to make it as perfect as I can. The most unsettling thing in life is that we live with such uncertainty yet we try to make things always seem certain for our children. When I spend time with my son I feel happy and want our day to be filled with fun and excitement. I always enjoy seeing my son smile and happy but that is not always the case. My son sometimes does get upset and very frustrated and it can be a struggle to get him calm and feeling better and it takes a toll for both my wife and I emotionally because we don't always know how to make our son feel better. The only time I feel true peace is when I see my son finally sleeping peacefully and that seems to take a long time for him as he tosses and turns for quite sometime before he finally falls asleep.

I am starting to realize more and more how important it is for me to plan for my son's future. I need to find a way to provide financial security so my son will be protected in the event he is not able to care for himself as he grows into a young man. I will have to find other ways to assure a certain income stream. It is very important to be employed today to meet all your living costs and equally as important to build a business. As I realize the uncertainty with the economic downturn that has been ongoing for several years now and unemployment continuing to rise with a dried up job market how it is more urgent to find an opportunity that can provide a chance without false hope to build a business network over time with patience, dedication and mentoring  that generates a reliable source of income in the way of residual income. It seems the changing economic landscape is forcing people to rethink how they make a living today to assure financial certainty.

As my father told me years ago it is very important to have faith and to find inspiration in your life. There will be times when you will feel all alone and no one there to pick you up when you fall. That is when you have to summon your strength to find the courage and hope you need to weather through those difficult times and hold on to faith and the teachings of Jesus. It is very important that we know where we came from and that we understand that our existence here is but a brief moment in the annals of time.

One of the hardest things that I deal with as the father of an autistic son is my son's difficulties in relating to others and his behavior. It has been challenging through the years and it weighs heavily on me as I find myself wondering what it will take to get my son actively involved in something he will like and give him an opportunity to make friends. I certainly know what it is like to feel unsure and shy away from others but I also know how to take responsibility and to find a way to fit in. I have always maintained a drive and dedication that I learned from my parents and I have always realized the importance of showing respect and maintaining trust, loyalty and integrity with others. I also know how frustrating and difficult the road we travel can be so I keep all this in mind when I teach my son valuable lessons of life.

It is our hope that we can provide our son with the education, encouragement, love, devotion, inspiration, and financial security he will need in his life to do his best and make a life for himself. We will always be there to help guide him and help him navigate the road he travels in his life and teach him the valuable lessons of life and instill in him the values that are noble and good that will define him as a person. I don't want him to feel different because he is autistic. I want him to feel that he can achieve and do wonderful things because he is special and gifted and even though he may have an autistic spectrum disorder it doesn't mean he has to feel discouraged or limited. I want him to know he has tremendous abilities and is very intelligent and he should always strive for his absolute best in all he does. My most important challenge is to build a dependable income stream through my hard work, effort and the help and guidance from others who have done the same so I will eventually be able to provide for my son financial security long after I am gone.

Edward D. Iannielli III

Saturday, July 3, 2010

A year of writing and what it means to me!

As we celebrate the 4th of July holiday weekend with family and friends this year and enjoy the time off we should reflect on all that is important to us and cherish this time with our loved ones because it just flys by and no matter how much we wish to hold on to the moment it will pass us by and all we can do is hold on to the memories. As I enjoy the holiday weekend this year I am reminded of what I was feeling and experiencing during last year's 4th of July holiday weekend when I was dealing with the loss of my father since April 2009 and the emotions I was living with which helped me start a special project that gives me perspective and a voice to speak with. It was last year on July 2, 2009 that I started writing this special blog about my son and autism and my many life experiences including the tragic loss of my father and growing up in Brooklyn, NY as a young child with my sisters and my loving parents.

I wasn't sure how I would start my blog writing but as I looked at my son who was 10 years old and was having a difficult day because of all the commotion and celebrating and needed to escape to a quiet place I realized that I should focus on him and how best I could help him through all the feelings and emotions he experiences on a daily basis with his autistic ways.  I was always appreciative of the times my dad would visit us and spend time with Matty and I wanted to touch upon those special times as well and touch upon my dad and how special he was to mom and all of us. As I started to find a quiet place of my own to write after getting my son settled down and playing with his cousins I escaped to a room where I started my writing after signing up on

I was inspired by a sad story written by Terrence Harper who wrote a blog on blogspot called Thumping my Melon which focused on his coming to grips with the reality that he had a terminal illness that was sapping his strength and eventually would take him away from his wife and 2 children way to soon. It was his love and devotion to his family and the courage he lived with every day since his diagnosis that really touched and inspired me and the way he wrote displaying his incredible honesty with his feelings that made me truly feel for him and his family and brought me to tears. He really touched me and I knew he wanted his family to be strong and find it in their hearts to go on and live their lives in his honor and for his wife to find the courage and strength to take care of their children and to find companionship. I was saddened to find out upon finding his blog that he had already passed away in June of 2009 at the tender age of 45 from a brain tumor.

I remember as a young kid of 14 years old reading and also seeing a movie based on the book written by John Gunther called Death Be not Proud which was the chronicling of events and experiences the father, the author of the book and his wife lived through as their teenage son was diagnosed with a brain tumor and soon would succumb to. It was a strong bond the family had and a deep abiding love for their son that really touched me and made me realize that life as beautiful as it is has a very sad part to it and I remember being very touched and saddened by the story and when the movie came out with Robbie Benson starring as the teenager who displayed courage and honor knowing he was dying that I had to see it as the book had such a big influence in my life and I remember that was the first adult book I read as a teenager.

I believe the hardest part in writing is starting out but if you feel inspired and have something that is very important to you to write about then that is a strong basis for getting started in writing. I remember when my son was first born and how nervous and excited I felt which was a life defining moment for both my wife and I that this would be the basis for starting out my blog and from that moment on I challenged my memory to bring out my feelings and write it as only a father could. I was blessed in a way with being sensitive and compassionate in my views of life and it allows me to be honest and I try to share all I feel as a father, a husband, a son, a brother, a friend, a professional and as a human being. I pull no punches in my writing and I write from my heart because I care and would do anything for my wife, my son and my family.

As I have come up to the 1 year mark in my writing I still feel I have a lot to share and write about and I find I have a need to write as I am touched by my son and feel for him and all the challenges he faces with autism and epilepsy and it pains me some days to see how difficult it can be for him and my writing helps give me perspective and allows me to write on what is going on in my life, my son's life and it helps me tap into a creative side I thought I never had.

I hope that I will be writing for the rest of my life and that I can hopefully derive some benefit financially from my writing so I can help put my son through college and help him to have a satisfying and fulfilling life. My motivation for writing is to help my son be all he can be in life. I wish to write about all his successes and all his accomplishments and my enduring love for both my wife and my son who make me feel blessed each and every day I get to share life with them both and share in the joy of celebrating holidays together.
Happy 4th of July to you all!

Edward D. Iannielli III

Thursday, July 1, 2010

Remembering my Mom on her birthday

No matter how many years have passed since my mother's death I always remember the special day of her birthday. She was born on July 1, 1939 to Irish immigrants who married later in life and had 5 children after coming to settle in Park Slope, Brooklyn from County Cork, Ireland. My mother was the 2nd oldest. I got to know her 2 sisters and her 2 brothers as they were all very close growing up. Some had relocated over the years but they would try to spend major holidays together. I still have the image of my mother as a young woman in my mind which brings me back to my childhood which was a special time and I sometimes wish we had that special time back. It seems sad knowing all the challenges my mother faced with her illness. She was very strong and very courageous throughout her life and she was a wonderful wife and mother. I definitely feel the void and know that we are given life which is wonderful but we also must face the reality that we all will experience death of our loved ones and one day our own death. It seems a bit overwhelming at times and we just have to put it out of our minds.  We have to be strong to live our life the best we can and be there always for our children.

I know that my mom and dad are celebrating this special day together in heaven and they are so happy. They both were very special and I feel lucky to have had them in my life for as long as I did. It was a difficult day when we lost mom but we realized she is in a better place and free of the pain and suffering she endured. Dad lived for 20 additional years following her passing but he missed her so very much and always wanted to be with her. We were fortunate to have him in our life for as long as we did but we knew how he missed his wife and our mother.

The saddest thing about losing mom 20 years ago was Dad lost his true love and she never got to meet our son or my 2 sister's children with the exception of my middle sister's first born. He was 2 years old when we lost her. She was so proud being a grandmother and she loved her grandson. Both my parents took great joy in being grand parents together and it was unfortunate that mom got sick. We just never know and that is why it is so important to live our life to the fullest and try to do all the things in life we hope to do.

As each year passes I still feel the loss but I become a year older and a year wiser and I focus on my family. I always say a prayer for my mother on her birthday and I tell her how much I love her and dad and that I still hold on to the special memories and I miss them both.

My mom died at 50 years old and as I approach that milestone in my life it really makes you think about the unpredictability and uncertainty of life. My dad faced life after mom with courage and was very loyal and devoted and he managed to spend time with all his grandchildren through the years and we were very proud of him and knew that mom and dad were both very special.

Happy Birthday Mom! We love you and Dad very much and wish you both peace and happiness together and we thank you both for all you have done for us. Love,

Edward D. Iannielli III

Tuesday, June 29, 2010

Our summer plan for Matty

The summer is a wonderful time when your young because it is a time to enjoy the break from school and a time to take advantage of finding relief from the heat at the pool or at the beach. I remember the summertime when I was a kid as being a time for enjoying the vacation from school and a time of swimming at the Tottenville pool in Staten Island or at the Riis park beach in Brooklyn with my family. It was also a time of doing fun things at the day camp program at PS 208 and playing baseball. It was a great time being a kid during the summertime and I remember enjoying all my summer breaks. They seemed to go fast because I remember having so much fun in the summer months.

Now I get to enjoy the summer through my son's experiences. I wish to provide him a summer filled with fun activities and structure. For the past 5 years my son enjoyed going to day camp at Camp Kehillia which we always found a positive and enjoyable experience for him. This summer will be a little bit different for him because instead of going to camp which has become increasingly more expensive and a bit out of reach unfortunately we are enrolling him in a summer school program where he will benefit with a 7 week extension of school that will help him keep up his academics and also an opportunity to also participate in fun activities in art and music and some planned day trips. I believe this will also be a positive experience for him and he will have the opportunity to make friends, continue his learning and have fun. The summer program is less structured then the regular school program but is a wonderful idea because it keeps kids on track with their studies and in a successful program launched 10 years ago which promote continuation of academic training and participation in fun activities.

After the class session ends our son will then have time to swim at our local community pool to cool off from the summer heat. So I feel he will have a good balance between school and the pool and some planned weekend trips to the beach, amusement parks and aquarium. I want our son to stay busy during the summer months and to be in a program that will help him prepare for the upcoming school year where he will be in middle school attending the 6th grade. The years just seem to fly by as I still recall his very first day of school.

My wife and I were fortunate to attend the orientation program for Matty's summer class and we were very impressed with the philosophy of the program and the teachers and school nurse actively involved with the program. We also had the opportunity to hear about the school program from the 2 teachers who started it and they are now 10 years into it and have a wonderful track record with it. We are very hopeful and very encouraged and we are wishing that Matty will enjoy it and thrive in it.

We also try to plan a family vacation towards the end of the summer but I'm not sure if I will have the opportunity to plan one this year but certainly would like to try as we always enjoy spending a week in Virginia. A Virginia vacation is always fun because there is so much to see and do and it is perfect for families with young children. We love the beach and the parks. We usually spend a few days in Virginia beach and a few days in Williamsburgh. We have been going down to Virginia almost every summer for the last 5 years. Last year we actually went to Hershey, Pennsylvania for 4 days and that is a fun family place to go too as we have been down there on two separate occasions and our son always has a great time there and so do we. I just love to see my son smile and say what a great time he is having as that is music to my ears.

Before you know it the summer will draw to a close and the start of the school year will be upon us so we certainly wish to do all we can for our son this summer and am glad he has a program to attend. As each summer comes and goes we are a little bit sad but we know it is the normal passage of time and we have to adapt and get used to the change in seasons and the passage of time.

Happy Summer to all of you and especially to my wife and son who I love dearly.

Edward D. Iannielli III

Sunday, June 27, 2010

A father's wish

I have been very interested in learning all I can about autism so I can help my son and provide him with the proper care and support he needs. I believe as a parent we are so involved in our child's life that we would do just about anything to make their life better. I have searched for meaning and answers as to the reasons my son has been affected by autism and I realize that it sometimes is not always as important to understand why he is autistic. The main issue I believe we face as parents of special needs children is assuring them that they will get the proper care throughout their childhood and that they will have a strong support system that will always be their basis for encouragement, advocacy and understanding. I sometimes have to have alone time so my son has his space and I can think of ways to do all I can to be a strong support system for him and to help guide and encourage him in life.

I have had my moments where I have been discouraged and felt all alone and wondered why our son had to have these challenges and then I think back to what my dad said about Matty which really made me realize his awesome potential. Although Matty has his challenges he is a wonderful child with an above average intelligence for his age and a kind compassionate way about himself. He makes me very happy when he is having a good day and I always pray that he will have many good days in his life and a life filled with wonderful happy times and many precious memories.

I always wish for my son to have the same opportunities as his classmates and that he is treated just like any other child and no different. I want my son to find special friends who he can relate to and I want him to be happy and to know that he is loved and thought about always. I want my son to feel confident and to know that he can do anything in life and that he has no limitations. I want him to know that he can dream and that he can aspire to be a doctor or a teacher or an engineer. He should always strive to be his very best and that is what I wish for my son. I wish he will have joy in his heart and never have fear. Our life is a mystery and it is also a precious gift that we should always appreciate and cherish and make the most of.

I wish to see my son accomplish great things and be there with him and my wife to see him graduate high school and to see him go on to college and to provide him with all the financial and moral support that he will ever need. I want my son to know that although there are challenges we face in life we can certainly rise above them and lead wonderful and happy lives and we also need to know how important it is to have the support of others in our life and that we should never feel alone.

I am very lucky to share my life with my wife and son and to have their love and support and I am equally lucky to be there to love and support them and I wish more than anything to see my son achieve all his hopes and dreams, to go to college, to find a rewarding career and to find someone special to share his life with. These are my hopes and wishes for our son who we love and care for and always feel privileged to have in our lives.

Matty, May you walk with confidence and achieve great things in your life because you are truly very special!


Mom and Dad

Edward D. Iannielli III

Wednesday, June 23, 2010

Autism, seizures and medicine

I have seen my son have good days and some real tough days and I have seen him while he was experiencing a full grand mal seizure. It has been difficult to see him going through a full convulsive seizure and it really makes you realize how fragile our existence is. I often worry about my son's safety especially when he is having a seizure or an autistic meltdown. As he experiences a seizure or meltdown he has no control of the situation and he is very vulnerable. If I am there when it is occurring my natural instinct is to protect him in the event he falls to the ground. It is scary because most grand mal seizures can result in head injuries if the victim is not protected during the seizure and they fall to the ground. The same can be said if the victim is experiencing a severe and violent autistic meltdown which I have seen my son experience as well. Both are rude awakenings because they can happen when you least expect it and they are very frightening to witness especially when the victim is your child.

Since seizures are unpredictable and can lead to serious injuries it is necessary that the child diagnosed with a seizure disorder or epilepsy be administered medicine to help bring the seizures under control and restore some sense of normalcy in the child's life. Even when a child is prescribed medication it is still possible for the child to still have seizures. We have learned that when our son has a grand mal seizure it takes a lot out of him and it is quite traumatic. He usually sleeps immediately following the seizure and has slept for several hours following one.

I still remember the very first seizure our son had which was not witnessed and was discovered after the fact. It was my wife's mother who was concerned for our son when he seemed to be a bit quiet. She peeked into his room and saw he had fallen off the bed and was unconscious and losing color. My wife and I were both working at the time and she was home with Matthew and she picked him up and brought him back. If she had not checked in on him and took quick action in reviving him it could have resulted in him suffering brain injury or even worse. Our son was blessed that his grandma took swift action and literally saved his life.

As parents it is very difficult sending our son off to school on occasion knowing in the back of our minds that seizures and meltdowns can happen at anytime and without warning. We have to have faith and hope that his day will go according to plan and he will be seizure free and not be prone to having a meltdown. We see that our son has his medication in the morning before he leaves for school and at night before he goes to sleep. Currently he is taking depakote, risperdol and daytrana to help control these conditions.

With concern for our son's safety it has been suggested that we look into our son being considered for eligibility to have a seizure response dog be by his side at all times to help protect him in the event he does encounter a seizure or meltdown. I personally feel it would be great if he was eligible and considered for one which would give us peace of mind. The medication seems to help but in some cases we worry about the potential side effects which we are starting to notice with his prescription of risperdol which is apparently causing our son to gain weight. There seems to be both pros and cons in trying to find the appropriate medication to treat our son for his autism and epilepsy diagnosis. We rely on the doctor's and put all our faith and trust in their recommendation but we also feel we need to question the use of the medication if the potential side effects seems to outweigh the medical benefit.

We realize we have to be patient with the use of the medication and we have to allow time for our son's body to adapt but we also know that if the medication is causing him to develop excessive weight gain and to be self conscious then it is necessary to bring it to his doctor's attention and see if there is a suitable alternative that would address his needs and not cause unwanted side effects.

It is a constant worry that our son is getting the proper medications and that he is progressing and not suffering in the process. We always pray and take one day at a time and always maintain optimism and trust. We have to for our son's sake.

We will always make sure we are doing all we can to get our son the proper medical care he needs and will have to deal with insurance and other issues one step at a time.

Our son is very brave for all he has to deal with and we are always amazed how well he seems to cope and deal with his situation. We are always inspired by his courage.

Love you Matty!

Mom & Dad

Edward D. Iannielli III