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!


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

Remembering my Dad

I remember as a child always looking up to my parents and learning a lot from the both of them. My dad was a quiet man but he spoke with his actions and he taught me many of life’s lessons this way. I always knew he was devoted to his family and that he always put us first while maintaining a tremendous work ethic and always giving his best to his work and his family. It seems in our lives we get caught up in the driving force of what we have to do that we sometimes find we lose sight of the things that are of most importance such as our children who need our love, our time and our understanding. I don’t want to look back on my life as it has passed me by and wished I had spent more time with my son. I want to have the time now and utilize it to great advantage encouraging my son and teaching him about valuable life lessons like I learned as a child and a young man. Life is supposed to be a journey with many experiences that shape and teach us valuable lessons. We should in theory always strive to be happy and always be grateful for all we have but it seems we get hung up on things and this is what holds us down. As we age it is certain that we will at times question our existence and what we are truly meant to do with our lives to make a contribution to our family and to society.

I believe we all need to feel love and acceptance and we all need a pat on the back and encouraging words from time to time. I have found out that life is forever different now that I have lost my parents and I know we all will most likely experience this pain and now as Father’s day draws close it feels painful knowing I will never see my dad again as I knew him. I miss him and my mom too. My dad was such a compassionate and caring person and he was always there for me and my family to give advice, to share his life experiences and to spend time with Matty.

Matty loved Pop and Pop loved Matty. Pop never treated Matty any different from any of his grandchildren. He expected great things from his grandson and always said encouraging words sharing his wisdom and relating his life story. Matty always enjoyed building lego structures with Pop and the stories he told. He absolutely loved the road trips we went on, just the three of us. These are truly wonderful memories that I tell my son to hold on to and cherish and to never forget.

As Pop is gone I have tried to explain this to my son but he blocks it out and says that Pop is still here but is just on vacation and will be back. It is his way of dealing with the situation and I respect his feelings so I never discuss that he has died because this truly gets him very agitated and very upset and that is the last thing I wish to do. I don’t always have the answers but I know in my heart what it is we all need to do in our lives and for our children. As a father I have grown to realize the importance of truly listening and giving my son the opportunity to express his feelings and talk them out to me and his mommy. We know that our son easily gets frustrated and acts out and sometimes becomes very difficult to calm down so it is very important to engage him and give him a voice and always support and reassure him that he is not alone and will always have us there for him.

I am always trying my best to understand what Matty is experiencing and trying to help guide and inspire him. I also rely on his school and his teachers to provide him with an essential educational foundation to draw from and all the much needed encouragement every young child needs. It seems we are getting used to the idea that Matty is autistic but we don’t wish to attach labels and do not want to discourage our son from his true potential. We want our son to feel inspired and to know that he is just like any other kid and can do anything in his life that he wishes. We want him to have high expectations and to know that he is truly wonderful in every way.

Memories are the precious gifts we are given to capture the past in our mind and keep it close to us. We all will draw from them in hope that we never feel alone and that the love we received will always be there no matter how much time has passed by and will always be the guiding force in our life.

I am truly grateful to my parents and to my wife and son for being part of my life.

Dedicated to my son always with love and compassion.

Edward D. Iannielli III

Autism and Family dynamics

As I have come to learn in life family is the basis for everything and it is where we draw our strength and where we seek identity, assurance and advice throughout the years. Family is where we establish our roots and it is a place where we should find love, comfort, safety and happiness. We come into this world totally reliant on our parents who provide for all our needs as babies and children and help teach us and guide us and help us in our lives. Our parents see that we always focus on the important things in our daily lives like school, homework, developing interests, taking care of our needs such as proper nourishment, proper hygiene, developing self confidence, establishing friendships, participating in activities and being happy. Our parents have to learn how to balance work, financial responsibility and raising children to be encouraged, loved and filled with a sense of confidence, hope and happiness.

The dynamics of family life is complicated and it seems each of us have periods of being alone and separated due to the daily demands of life and responsibility to others. Most families have both working mothers and fathers so young children are placed in day care or have caretakers who may be family relatives or compensated individuals who are given the responsibility to watch and care for the child and entrusted to always do right by the child.

I find it very difficult entrusting others with watching our son because of his autism and his unpredictability. We have had good fortune with his development through day camp where the kids who watch him seem to do wonders for him and we are always very grateful to them. We feel they are having a positive influence on our son and we wish to find other opportunities where he will get the same type of attention and care.

I find it difficult at times separating from my family every day and realize it is a part of life that we all must get used to. As I see my son growing I am trying to spend as much time with him as I can when I have the opportunity to. I enjoy having time to spend with my wife and son and I find that to be the most rewarding time. Life demands that we each have to be educated and make a living so our daily lives are centered around the parents going to work and the children going to school when they become school age. We all are doing our own things during the week and it is important that we have some time to establish healthy dialog and stay informed with each other.

Raising children is a very rewarding and very gratifying time in our lives and we always want to do the best we can for our children. It is so important to us and our children that we always stay in tune with each other and always have open lines of communication at all times. It is a time of great responsibility and we have to always stay focused and have a good sense of things. Life has it’s shares of uncertainties that do affect us and we have to be able to always be prepared and try always to do our best in everything we do. As parents we have to have a strong foundation to build upon so we can impart self confidence to our children who are like sponges and absorb everything. Our children give us strength and demand our love and attention each and every day and we have to always make sure we are there for them.

So as you can see family life is wonderful and it is where we derive such joy and happiness. It is also very demanding and very complicated in the normal framework. When you introduce Autism to the dynamics of a family setting you then set the bar to a higher standard for the parents and other family members because raising an autistic child, which is also a joy and delight can be a very demanding and very emotional undertaking. As parents we naturally worry for our child. When that child is autistic our sense of worry is heightened and we are always thinking of our child at all times. No matter where I am I always have my son on my mind and I am always thinking of him and how his day is going. I know it is supposed to get somewhat easier as our child grows and gets into a normal routine but I still find myself concerned and thinking of my son. I believe it has to do with the social difficulties he encounters in school and the fact that he has epilepsy. I have no control when we are apart and find that a bit unsettling. When he is in my line of vision and under my supervision I find I have more control and I seem to feel better. I know as parents we have to get used to being apart but it is so much harder when your child is autistic because your child has so many more needs and does not relate to others the same way. I feel I have to help him and protect him and I wish that as time passes and our son matures that it becomes easier for him and for us.

Sometimes I find myself crying for wanting to help my son be the very best he can and not always knowing what is best for him. All I know is that I love my son with all my heart and I will always stand by him along with my wife and do everything we can to make his life a happy one and help equip him with the survival skills he will need to live a confident, self assured, successful and wonderful life filled with hope, joy and happiness. It is a certainty that he will encounter sad realities also as we all unfortunately have to endure which makes life somewhat a puzzle too. It seems we always want our children to be happy but that is realistically an impossibility. All we can do is try the best we can to teach our son and provide him with our love, support and wisdom so he can go out into the world one day as a young man. I have high hopes for my son and look forward to being there for all the accomplishments in his life. I know my wife and I are always there for him and providing for all his needs and we both are working together to help him develop and find his way. As parents we know what we hope for our child and we also know that we always wish to be there for him every step of the way. The things we don’t know are the uncertainties in life that we all face. My dream and hope is to always be there for my wife and son and to see him grow into a young man confident, happy, self assured, with many friends and many opportunities. I want to see my son graduate college, find a rewarding career and do all the things in life he ever dreamed of. I want my son to be a tremendous inspiration to others and to live knowing he is wonderful and very special.

Dedicated to my wife and son who I love with all my heart!

Edward D. Iannielli III

Autism and childhood innocence

Childhood is a precious time in our lives for most of us when we are young and it is a time when we look up to our parents for everything. We feel safe and protected and we feel a bond naturally with our parents that we wish to last forever. As we grow we start to experience many things and we start to become more independent in ways but not completely as we rely on the support of our parents for quite some time. As we grow into adulthood and take on the many challenges that come our way we try to adapt and apply the knowledge and skills we obtained through the years. One of the biggest milestones we as young adults seek is to graduate high school and start our pursuit of a college education which is a major undertaking.

We try to hold on to our childhood for as long as we can because that is such a wonderful and innocent time for most of us. It can be a difficult time also for some. There are situations where some kids are suddenly thrust into responsibility for various reasons at a young age. It is not always a happy time for those kids growing up so if we were blessed to have a happy childhood we should consider ourselves very fortunate.

Sometimes as we become young adults we think back to the days when we were young kids and we look upon those days with fondness and appreciation and we always remember them and our parents no matter how many years go by if our childhood was a happy one.

If we are lucky enough to marry and have children we get to experience childhood through our children’s eyes and that is very special. I have been so blessed to have wonderful parents, sisters and now a wife and son. To me family means everything and it helps define us and gives us meaning in our life. Having a son is my most proudest moment and it is a very rewarding and happy time. I cherish the times I have with my son and it seems the years just fly by. I remember when my son was just an infant and I held him in my arms to give my wife a break and I was in awe how tiny he was and how beautiful he was. I remember his tiny fingers and his loud crying. It was a truly wonderful time that I can picture in my mind and see through photographs. As my son is growing and now moving forward in his schooling it is apparent that he is becoming a young boy approaching his teen years. It is nice to see that my son has such a great disposition and shows empathy towards others. He is a kid with a big heart and he has such a nice way about him. He has his moments with coping with epilepsy and autism. I feel that since he is autistic he certainly has some special qualities and a sweet innocence. I think that most autistic children do have a special innocence because most do experience many quiet and isolated moments growing up.

As we grow a part of us seems to resist it and we wish we could experience childhood forever. I always want to provide my son with quality time and many happy moments and memories and a strong support system. I want my son to always smile and feel happy and learn confidence and always strive to do well in all he tries. I want him to know that he is a special kid and that he can do anything he sets his mind to. These words were always spoken to me by my mom and dad and my wife and I also speak them to our son because he makes us both very proud and very happy.

We cherish these times and we seek to always have that wonderful bond that parents and children have in their life and it is only natural to look forward to the special occasions that ly ahead in our son’s future. We take one day at a time and we let our son grow at his own pace and we know he needs extra services because of his special needs but we always let him know that he is very capable and has such promise and potential and he should never forget that.

The best part of life are those special moments we have as children learning from our parents and as adults teaching and nurturing our children. I know growing up has it moments and lots of new feelings and many questions. I always tell my son that childhood is a wonderful time and we should hold on to it for as long as we can. It is a wonderful quality to maintain that youthful innocence in our life and I appreciate my son’s ability to be empathetic and kind. He is our pride and joy and I learn so much from my son and am much better for it.

This is dedicated to my son who inspires me every day. Love you!

Edward D. Iannielli III