Tuesday, June 29, 2010
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
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
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
Sunday, June 20, 2010
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
Saturday, June 19, 2010
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
Sunday, June 13, 2010
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
Thursday, June 10, 2010
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
Tuesday, June 8, 2010
There seems to be a connection between autism and sleep disorders. Based on doing research on the internet and talking with parents of autistic children, sleeping seems to be more difficult for autistic children as their patterns are opposite to normal developing children. I speak from personal experience as our son has difficulty going to sleep at bedtime regularly. We start the process of getting our son to go to sleep at 8:30 pm and he fights it though he knows he should be going to sleep. Sometimes it takes up to 2 hours to get him to fall asleep and that is with constant supervision. We have many theories as to why he does not like to sleep and I believe part of it has to do with his seizure disorder. The other reason is that autistic children process things differently and are usually very active and to them sleep may seem to be too restraining and requires total stillness which is hard to conform to when the children are so full of energy. My son is very active and he seems to never tire. He fights off sleep for as long as he can until he finally gives in and magically falls asleep.
He takes medicine at night for his epilepsy and for his autism so we are not keen on also tranquilizing him to help him sleep. I am very leary of medicine being used as the solution all the time. We need him to continue on the antiseizure medicine to help prevent seizures so it is a bit scary if our child is prescribed additional medications. I've seen what medication can do as I lost my mother at a young age due to her being over medicated. We lost our mother way too soon because she was prescribed all types of medication to help her with her chemical imbalance but it robbed her of her personality and her will.
Based on my interest in finding natural ways to help promote sleep for my son I came across an article on the internet explaining the benefits of a cup of warm milk and honey before bedtime as one of the best things to give your child or anyone who has difficulty sleeping. It seems to have a calming effect and it is a very healthy combination that offers so many health benefits including peaceful sleep. We have been giving our son a cup right before bedtime just recently and are seeing a difference already as it seems to help him relax and slow down so he can gradually fall asleep. He also loves the taste of it and says it is "nature's milkshake" made by cows and bees and that is why it is so good. The phrase "land of milk and honey" comes to mind for me. I have tried it as well and I find it is very tasty and healthy to drink and it does certainly have a calming effect.
On a side note my son has been pretty well informed with current events and he and I are concerned for the plight of the honey bee since they are nature's workers and they play such a vital role in honey and fruit production. They are amazing with all they create and we are losing them at alarming rates. We do rely on them in our everyday life and must help save them. One of my son's favorite movies is the Bee movie which is a very cute movie that the whole family enjoys.
I believe that if we reinforce good sleep habits with our son and maybe allow him to have a tv in his room and we give him his favorite drink of warm milk and honey at bedtime he will finally start sleeping at a more tolerable hour at night and get the much needed rest he deserves.
I am not sure why autistic children have so many quirks with their everyday living but we should always support them and try our best to help them in every way we can and never lose hope. We must be strong and a positive influence in their life and we must have dedication and a great deal of patience and show them how they should conduct themselves in their everyday life.
Dedicated to my son Matthew who inspires us everyday!
Edward D. Iannielli III
Sunday, June 6, 2010
As another weekend comes and goes I have the pleasant memory of spending a wonderful day with my son getting to talk with him and enjoying his company. It seems during the week we are too busy to really spend time together and sometimes I work late and he is already in bed so I don't even get to see him during the day. I cherish these moments we get to spend with each other and I am always looking forward to the next time we get to enjoy each other's company.
I do realize that my son also needs to spend time with kids his age and that is where we have to find opportunities for him to do so. I am happy we found a program for him this summer through the school district that will help him with continuing in a school program during the summer months that also offers recreational activities and school outings. I feel this is very important for him and as much as I enjoy spending the day with him I realize how important it is for him to establish friendships and opportunities to interact and play and have fun as a kid with kids.
As a young kid I had friends that were nearby and we would go out and ride our bicycles and play baseball at the local school ball field. I grew up in good old Brooklyn, New York where we lived in a tight knit Italian neighborhood where everyone knew each other and it was safe. It seems times have changed and we can not be so trusting anymore. I would never let my son ride his bicycle unsupervised today the way I did when I was a kid. We have to be so protective of our kids today and watch them every step of the way.
I have asked my son to provide me with ideas of what he likes so my wife and I can find suitable programs for him that will help him develop and keep him interested. When your child is autistic it seems much more difficult to direct them into sporting programs. I would love to see my son play little league baseball but I am realizing that it is not in the cards because he lacks the skill and the interest. I wish I could teach him the fundamentals and have a catch with him as every father wishes when he has a son. I have cried when I learned my son was autistic and blamed myself for not being able to break through to him through the years. As he is getting older he is improving but other concerns come up and we have to be very delicate with his psyche and always encourage him and be there for him.
My son appreciates simple things like going to the park, riding his bicycle, swimming at the beach or local pool, going to a movie, bowling and going out for a slice of pizza. I enjoy these simple things with my son as well and am happy we get to be together and I will always cherish these times together.
A part of me cries though because my son does not have consistent interaction with kids his age outside of school and I know this is very important for him in developing. I don't want my son to be lonely. I know what lonely feels like and it is not a good feeling. It is a very painful feeling. I know in life we do go through lonely phases even when we are amongst family and friends which is quite normal. However we should always try to be involved in fun activities to help us grow, learn and experience togetherness and friendship. The most important thing a parent wishes for their child is their ability to communicate and build friendships and find acceptance. We all want our children to be happy and we try to show them the way as best we can and sometimes when our time is divided between so many other obligations we unfortunately are not always able to.
I am trying to understand what my son is feeling and what is on his mind and I always try to encourage him and guide him. I realize life can be scary and difficult at times and we don't always want to grow up. It is a very traumatic time growing up and I realize how change is so very difficult for an autistic child to deal with. My son is so used to his routines and change is very difficult for him but he is starting to understand that change is inevitable and we all have to adapt to change. He already had to change schools and it took him awhile to adjust but he seems to be doing better though it is not perfect.
The one main thing I have learned in spending time with my son is that he enjoys our time together, he feels safe and we have good times together and I am very happy to spend time with him. It makes me feel good to have this time together and I know when my son continues to grow I will always look back on these times together with great fondness. I will also like to see my son develop confidence and find fun activities that enable him to find lasting friendships and help build his self esteem and teach him lessons that will help shape him and provide lasting memories. I have many wonderful memories of my childhood and still remember the names of my childhood friends. I want this for my son too. I want him to look back on his youth and remember his childhood friends too. I don't want it to be a blur to him. I want him to smile and say it was a happy time for him as it was for me.
I love you Matty and want you to know that I cherish our times together and will always remember them. You are very special and I wish for you to find joy and happiness and a multitude of friendships and fun times as you grow. Do not be afraid. You are a wonderful kid and you deserve to have fun times and develop lasting friendships. Just remember that mommy and daddy love you very much and wish all wonderful things to come your way. Also know this that I will always look forward to spending time together with you and can't wait to see that next movie you'd been looking forward to seeing together.
Dedicated to our wonderful son, Matty who inspires us everyday.
Edward D. Iannielli III
Saturday, June 5, 2010
I have experienced life for a good many years now and can say I've learned a lot through the many experiences I've encountered from childhood to the present. I have come to realize over the years that life is fleeting and it is not perfect and we have uncertainties and challenges and it can be hard but we also have love, hope and wonder. As life marches on we have to keep up with the band so we don't stop hearing the music. It is the music that is life and life is the music that is so sweet to our ears.
Sometimes I wondered what our lives would be like if we knew the future and could see it beforehand. I believe most of us would not want to see it because it would take away the mystique. The part of life that is difficult is experiencing loss. I think we live our lives thinking everything will be as it was with all the important people in our lives being there always but then reality hits and when we start to experience loss of loved ones it really has an impact that stays with us throughout our lives.
In talking with my son who is on the autistic spectrum with asperger's he wishes that we would live forever and never experience the pain of loss. In his mind he can not accept the reality and I don't expect him too. Sometimes it can be very difficult explaining such emotional topics such as this with my son especially because he is autistic so I go with what he believes. I am not an expert but I know in time he will learn the difficult realities but I love his innocence and his vision. It makes me smile as he says "Pop" is still with us. He's just on vacation. My son can not accept anything but that so I go along with it. He knows that we don't see "Pop" anymore but to him that is because he is away but he truly believes in his heart that he will see him again. I can not take this away from him. I have learned the compassion and the innocence my son has. I love the idea that he still believes in Santa Claus and the tooth fairy. To him he blocks out the difficult things and only sees the good and he needs to be shielded from the sad things we encounter. In his thinking September 11th is not real and he does not accept it. He believes the towers are still there and all the people are safe. It really makes me sad that things like this happen in life and I too wish it didn't like my son believes. I however know the truth but I want my son to believe in his vision. The truth is that the towers are really still there.
My son's vision is of hope and goodwill. He sees that we live in a world where everyone can be kind and extend their friendship to one another. I allow my son to hold on to this utopia because he is a kid and he should feel this way. I don't want to see him upset. I want him to have hope and dream big. Our childhood is the best part of our lives and it is a time when we need to feel safe and protected and know that everything will be ok. My son has a heart as big as the distance from here to the moon. He just feels the need to assure crying babies and kids that everything will be ok and he is not inhibited. He just innocently goes to the crying child and wants to comfort them. He is such a wonderful kid and I just love his sense of goodwill. I try to explain to him that he has to understand that although his intentions are good not all people will understand this and he has to be very careful and not always be so native. I know my son has a wonderful trait and I would never discourage him from trying to help others but I want him to exercise proper judgement and to be careful and not always be so trusting. Unfortunately we don't live in a perfect world and there is a harshness to life sometimes.
Another thing about my son that can be frustrating is that he is just like the energizer bunny. He just keeps on going and going and going. He never wants to sleep and he always puts up a good fight. In his mind sleeping is boring and he wants to always be active and doing things. My wife and I explain to him the importance of a good night sleep but he still insists that he wants to be awake and doing things. I don't know why he feels this way but I have grown to learn that a lot of autistic children do indeed have difficulty sleeping. I am not an expert as to why but I know it is more common with children on the autistic spectrum. We have to be very firm with him and we have to stay with him to make sure he stays in his bed and sometimes my wife will stay with him for an hour or two before he finally falls asleep.
In seeing our son develop and grow through the years and adapt with his autism and epilepsy we have grown too and we have been through so much but he lives with it and he has struggled at times but I must say that despite the setbacks he has a wonderful way about himself and he can be so very positive and teach us a thing or two. I am truly concerned for my son and I want everything to be ok with him and I want Maria and I to always be by his side and help him to grow and develop and mature. He certainly has provided us with such joy and happiness and we learn from him everyday.
Our son may be autistic but he is a child with a vision and he has hopes and dreams and we are so very proud of him and know in our hearts that he will be ok. We love him and we will always love him and it is him that keeps us strong and focused in our lives. We would do anything for our son to make his life better. He certainly makes our lives better.
Love you and your mommy, my little buddy!
Dedicated to our son Matty who teaches and inspires us everyday.
Edward D. Iannielli III
Tuesday, June 1, 2010
As a parent of a special needs child it is very important to seek advice and guidance and to find a support system that will help you through the many questions you will have and set you on the right path in helping your child. It all comes down to doing what is right for your child. We all experience feelings of frustration and heartbreak but we have to be strong for our children and especially our children with special needs. Once a diagnosis of autism or asperger's is determined for your child it is critical that you set the wheels in motion and start the journey of a lifetime to help support and encourage your child and get them the proper support and medical attention they need now and throughout their lives.
An autistic child generally lacks the social skills necessary in communicating with others. They have difficulty with making eye contact and they are very slow in their speech development. The first step in helping your child is getting them the therapies they will need through early intervention. These therapies will be implemented through the early intervention program and throughout the child's school years.
As a parent we also need support and encouragement. It can be emotionally very draining in caring for an autistic child and working on establishing a relationship and helping them learn and develop as other children do. I know how important it is to speak to your child and listen to them and work towards being on their level and understanding them. I need to always work on establishing my son's trust and always being reassuring to him. I also have to be careful with what we watch on tv or our tone of voice. I have learned early on how sensitive an autistic child can be. Our son has many sensitivities primarily relating to sound, lighting, texture, aroma and touch.
I am a relatively shy person and find it difficult reaching out to others but with regard to my son I have made it a point to do what is necessary to help him. With the support and encouragement of my wife we have attended parent support group meetings and social outings to determine suitable programs for our son that will help him develop and learn social skills. We have sought sporting programs and summer programs that will keep him active and busy and provide him the opportunity of making friends.
I am truly grateful for all the people who have helped and continue to help our son and us and feel that we are seeing progress with our son. I always wish to see the positive side of things and have come to realize that we should not feel alone. We do have others who are willing to help and provide advice and share their experiences and all we have to do is reach out and ask for it. We should always know that by finding someone who is experiencing what we are makes it possible to form a bond and find some peace of mind and make a connection that will certainly help and provide us moral support and camaraderie. That is part of the process necessary in helping our children. We are here to provide the very best for our child and be the best we can and sometimes a little help from others can mean so much.
Edward D. Iannielli III