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

  

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 blogspot.com.

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
 

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

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

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!

Love,

Mom and Dad

Edward D. Iannielli III

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

Gaining perspective from my son

I often wondered what it would be like if we could instantly change our lives at will and do all the things we hoped or dreamed to do. As we get older and are caught up in our daily life's obligations and responsibilities the chances become less and we become resigned to the fact that we simply can not always achieve all that we had hoped or planned to. I believe we all wish for a rewarding and worry free life filled with happiness, accomplishment, companionship and no financial stress but that sometimes can be a Utopian ideal. We all know that life has uncertainty and we have to ride the ups and downs out with courage, strength, determination and hope.

Hope is the key to living life and holding on to all that is important to us. As we grow and learn that we have to take on responsibility in our own life we sometimes are reluctant and feel intimidated. We have to find a level of comfort and believe in ourselves. We also need a strong support system where we can find encouragement, a safe haven where we can express ourselves and a feeling that we will always find safety and security. We will have doubt and concerns as we get older and become more responsible for our actions and how we approach our lives which is normal but if we realize this and also know that we can be more responsible then it will become a little bit easier.

When I see my son preparing for school in the morning and sometimes seeing that he would rather have a day off I think back to my childhood and those days of preparing for school and I can relate as I too had those days where I'd rather be home also. It is then that we have to assure our child that it is ok to feel this way sometimes but we still have our responsibilities to ourselves, our parents and our teachers and we have to still go to school. The only time we can take a day off is if we are really sick.

I have always tried to gleam knowledge and understanding by trying to understand what it is like from a different perspective and sometimes I am able to in some ways and other times it is just too difficult to do. What I am trying to say is that I am aware my son is autistic and has his difficulties and insecurities. I know what it is like to grow as a child because I have been there so I can easily understand what my son may be going through. In that case I can for a moment step into my son's shoes and gain perspective of what he may be feeling and experiencing. I feel we all have to take a step back and try our best to relate to our child and listen to what they are trying to say.

I have often wondered what it would be like to be autistic for a full day and actually see the world through my son's eyes and experience all that he sees, feels, hears, senses and lives through in a day. I have read and learned many things about autism but I have absolutely no clue as to what goes on in my son's mind and why he sometimes reacts the way he does or says the things he says. It is not easy trying to do this and I have never truly derived any real breakthrough but I find as I become more informed that I stand a better chance of understanding what he goes through. I would have trouble living this way for a day yet my son lives it each and every day and I truly feel for him and wish I could make him understand that his life is very special and he was blessed with being different. There is no shame in what he has. He certainly has all the same opportunities ahead of him that every child has and I want him to know this. This is what my dad believed and this is what my wife and I believe too.

I stand with my son and know that my wife and I have to reassure him and help him navigate his life and share how he feels. We must be able to open up and not feel all alone. I know we are alone when we are doing our own things and living our daily lives but we all come together as family and family is what we must rely on to help get us through the difficult times. As family we are together and we can each help one another to find comfort and gain reassurance and confidence. Our family is our foundation and that is who we trust and need to weather life's challenges.

Each day I am blessed to spend with my son I am richer for it and although I may not completely understand all he feels and goes through I am working to do my best to always be there and support him and provide him with the love and encouragement that he needs with the help and support of Maria. I also realize that he needs to have interaction with so many people in his life as that is reality. I only see my son when we are together at home or out for the day. The times when he is in school or participating in activities and I am working I don't see that part of his life so I try to engage him in conversation to tell me how his day was at school or in the camp setting. I don't want to feel like a stranger to him. I want him to feel free to share and to easily express himself to me and his mom whenever he needs to.

I find in learning from my son's challenges I have become more understanding and compassionate and more sensitive to his feelings and needs. I would do anything to help my son gain the knowledge, the level of comfort and the feeling of security he needs to grow throughout his childhood. I want him to experience happiness and friendship and to always feel confidence and gain life's skills to take on his own challenges in life. As his father I want to provide him with the best I can and always assure him that his mommy and I will always be there for him and love him dearly.

Dedicated with love to Matty, my son and Maria, my wife.

Edward D. Iannielli III