One question that is asked of me over and over through the years is a question that is a staple question with just about anybody who is married and that question is “How did you two meet?” In order for me to answer that question I have to lead up to it with some background information. I remember back in 1994 I was feeling depressed and uncertain about things. It had been 4 years since my mother’s death and I was still struggling with her loss and felt sad for my dad who was very committed to her and to my sisters and I. When she died we sensed a part of him died as well. I saw my dad struggle and felt his loneliness and isolation. I was concerned for him as he was for me. I was still at home with him and it was a difficult time because we both were going through depression. I also felt the need to have a relationship but I was very shy growing up and found it hard to date. I was uncertain how best to help myself and did not find it by going to social gatherings as I tended to be a wallflower any way so I did not get any positive outcomes from those outings. I finally decided that I needed help and had to talk to someone and I really did not want to talk to a friend as I had private things to talk about and needed to find a counselor or therapist to open up to. The next question to ask was who should I seek to see and this was also just taking a chance. I happened to come across the name of a psychologist who had an office in Astoria, Queens which was convenient since I was working in the City. I decided to call her to schedule an initial consultation and to hopefully trust enough to talk about my worries and concerns. I had suffered from being very shy for all of my life and knew if I was going to help myself I had to make a change and I knew it was not going to be easy but I had to really work at it. When I met Michelle the psychologist I felt comfortable and found the session with her a good start and I knew I was hurting so after our session she asked me if I would consider seeing her again if I felt I needed to. I did think that I certainly needed to have some form of follow up and told her that it was certain I would schedule follow up visits. Our first session was an introduction where she asked me why I was seeking therapy and I discussed my mother’s passing and my dad’s situation and how I felt like I was not having fulfilling relationships as I was getting older and needed to make some changes. When I was preparing to leave she said I seemed like a fine young man and that I should hold on to my mother’s positive memories and for me to be strong for my dad. She gave me a hug and made me feel good. I paid her for the session and decided to schedule another visit in 2 weeks. During my visits with her she encouraged me to write a journal and focus on all the things important to me and to list all the things I would like to accomplish. She also asked me to list my proudest achievements to date. She got me to think more about my personal well being and to be more introspective. The sessions were very helpful and I felt like I was making progress. On occasion I would have to reschedule appointments because of my busy work schedule. I began to relate as a friend to Michele and she was good in helping me to rethink my life and do some soul searching. I looked upon our visits as opportunities to share things I could not with others and I felt relief and much better as my perspective began to change and I did not feel down like I did when I first started the sessions. I was amazed when I found myself still going to see her after lapses of time. There was once a lapse of 4 months and when I started to struggle with my feelings I would seek to see her so I could discuss what was going on in my life. It was late summer of 1996 and Michele surprised me with a question after our session but I certainly was open to the idea. She said she was also helping a young woman who was living in Bayside and she was from the Phillippines and looking for a friendship. She suggested I give her a call to see if we could meet. She gave me her name and telephone number and I thanked her and told her I would call her when I got the nerve up to as it was always a bit unsettling for me. After a few days had gone by I decided I would try and call to arrange a possible date. I managed to dial the number and as the phone rang and someone answered I asked for Maria and was asked to hold on. As Maria answered the phone I introduced myself and mentioned that Michele had given me her number and asked me to call. She seemed happy to hear from me and I asked her if she would like to go see a movie and get something to eat. She said she would love to and so we made our first date. It was very exciting for me as I wanted everything to be perfect. In my mind I thought about which movies to go see and which restaurants to choose from and decided it’s best to have Maria and I both decide together. As I thought about it I anxiously awaited our first date which was a little less than a week away.
All kids love to run around and play in the summertime or the wintertime. They enjoy the sunshine and the fresh breeze and taking a dip in the pool on a hot summer day and lying in the snow and making snow angels and throwing snowballs at each other on a snowy winter day. I remember when I was a kid I could bike with my friends for hours. I felt great riding and racing with my friends. Matthew is like any other kid and he enjoys playing and running around and having fun. In the summertime Maria, Matthew, Grandma and I enjoy going to the beach or the pool and once Matthew goes in the water it’s very hard to get him out unless the ice cream man makes a visit. I enjoy spending days together as a family and seeing our son smiling and having a good time.
Maria and her mom take Matthew to Eisenhower Park where they ride their bikes and stop along the way for time at the playground and for ice cream. He loves riding his bike and I remember one time making the mistake of trying to keep up with him on foot. I learned my lesson and made sure that next time I go I have a bike to keep up with my son.
Autistic children tend to find comfort in doing things they feel safe doing and that does not require much interaction. As a concerned parent you try to encourage your child to participate in group sports so they experience socialization, team work and healthy competition. We tried to introduce Matthew to organized sports when we signed him up for youth soccer in the town of Levittown. Once I noticed Matthew was having difficulties following instruction and showing signs of boredom and not able to deal with the structure within a team setting we knew this was not going to work for him. We were disappointed but knew we could not force him into playing. We just wanted to find an outlet for him that is healthy, provides an opportunity for him to make friends and to learn a little healthy competition.
I know for me little league was a lot of fun and it enabled me to make lots of friends and to challenge myself. Matthew does not seem to have that interest so I want him to find what does and I will support him and encourage him if we feel it is beneficial for him.
Matthew’s most favorite place to go is the playground. He still loves it and everytime he goes he does make some friends for the day and he gets to run and jump and climb and have a good time.
We are fortunate to have the ability to send Matthew to camp for the summer and he always looks forward to it. We were looking for a place where he can have fun activities planned and where he would be supervised properly and have the opportunity to interact with other kids that are similar and learn to get along and have fun. We found that place which is Camp Kehalia which is run by the Sid Jacobson JCC.
He has been going now for the past 5 years and he has made progress and we are happy that he enjoys it because the most important thing we want for our child is for him to be happy and have fun and the opportunity to make friends. In life the simple things are the most rewarding.
Matthew’s playground is where he finds his happiness.
It was a major reality check coming to grips with the fact that our son had serious medical concerns that required medication and ongoing medical visits. As any parent would say their first impulse or reaction when it comes to their child is providing for their safety and protection. Knowing that Matthew had a seizure disorder changed things because now we felt that providing for our son’s safety was now compromised as we had no control over the situation but were trying to intervene with the use of medication. My wife had been filled with such anxiety over our son’s safety that she could not let him sleep in his room alone. She felt it was a necessity that he sleep in our room under close watch just in case he would have another seizure. I also felt this was our only choice as we needed to make sure he was safe in the event he did have a seizure and because we would never forgive ourselves if he was alone and there was no one there to come to his aid. The experience Maria’s mom went through was difficult enough. We did not want to have to go through that again. In researching seizures I learned that there are many different types of seizures and varying degrees of the disorder similar to autism. I was deeply moved after reading some of the experiences of others living with children who suffer from more severe disorders. I could not help but cry when I read about a family that had a young baby who apparently suffered from the disorder shortly after birth and literally had multiple seizures all day and night. It was so sad seeing what that poor baby and the parents had to go through. All I could do was to say a prayer for them. You always ask sometimes “Why me?” then realize there are others who have struggles more profound than you.
In researching and looking to find support groups it was our way of trying our best to cope with the situation and hopefully gleam some hope so we can learn how to provide the needed support and proper parenting for a special needs child. As a parent you are learning every day and generally there is a 2 way line of communication between the parents and the child. However with an autistic child that 2 way line for all intents and purposes is non existent. So we were dealing with seizures and autism at the same time and seeking proper medical care and a support system.
At times when I felt overwhelmed I would turn to my dad and seek his advice but sometimes I felt I should not burden him. I always looked up to him and was always grateful knowing that he was only a phone call or a short visit away. In the recent months since his tragic passing I have come to realize how much of a pillar of strength he was and how much of an influence he was in our lives. Sometimes you don’t get to fully appreciate what you have until you lose it. With my dad I knew we were truly fortunate to have him in our lives and I really feel the impact of his loss.
In learning what my dad endured in his life and having faced such adversity and struggles of his own I felt that I could learn to be strong and deal with Matthew’s medical issues and rally for him like my dad did in his way for his family. We approach things differently but seek the same result. I learned a lot in acquiring the necessary coping skills from my dad and am very thankful for his guidance and his love and support. I will always have the picture of him in my mind sitting in our living room watching tv and talking with Matthew. He was one of Matthew’s biggest supporters and he was “Pop”!
I was prepaing myself for our visit with the Pediatric neurologist at Schneider’s Childrens’ Hospital and wanted to make sure I spoke about all my concerns about Matthew’s recent seizure which was his first and actually was not witnessed. My mother-in-law happened to find him aleady fallen from our bed lying in a box to the side which was there from our recent move. I could only imagine what was going through her mind when she first saw him. When she described what she saw I could tell how scared and frightened she was. He had lost color in his face and was not breathing. She immediately picked him up and cradled him and gently lied him on the floor pumping his chest until she got him to start breathing. She literally saved his life and was fortunate to get to him just in time. She explained that she was in the kitchen cooking and wondered why there was such quiet in our room. She said Matthew is usually very active and always playing so she decided to walk down the hallway to check up on him and to her horror she saw him in that apparent lifeless condition. Upon reviving him she ran to the owner’s side of the house and knocked on his door which leads to his living room. He is an elderly gentleman and he stayed to help out as best he could until family arrived. My mother-in-law had called me at work and immediately I then sought help from family and friends. I told her to always call 911 when an emergency such as this occurs and my wife and I hugged her for coming to his aid when she was so traumatized. I know how much she loves Matthew and I saw her face so red from all the tears she cried that very night. She was his guardian angel and we were so very grateful to her. I asked her to come with us to explain what she witnessed and I wanted to discuss the incident as best I could so the doctor would have a clearer picture and determine if he did indeed have a seizure which my sister felt he had immediately when she saw him.
When we arrived at the hospital, Matthew was his typical self and he was clutching his teddy bear which he seems to like to bring with him when we go places. He was doing well considering having the apparent seizure and we didn’t really notice anything different about him. I still was very concerned because we were not sure what to make of it and he is already affected by autism. I was wondering if there was a relationship between autism and seizures since the brain or neurological system seems to be connected with behaviors commonly associated with autism and also with the missed signals to the brain that can trigger a seizure. I really needed to discuss this with a professional as it was worrying me to no end knowing our precious little boy was having to deal with all these obstacles. I just had this terribly sick feeling in the pit of my stomach and I wanted to scream as I felt so helpless.
As we waited and had completed all the paperwork I was thinking about how I would lead in with the doctor and then we heard our son’s name called out by the doctor’s assistant. We immediately walked over to her with Matthew and heard her quietly say “Follow me”. We were led to a small office down the hall where there were nurses stationed around and we were asked to wait. Within a couple of minutes a nurse came in to introduce herself and ask us how old our son is and then proceeded to weigh and measure him. She asked when he had the seizure and we told her a few nights ago and mentioned that no one actually saw it as it happened. She mentioned that seizures can be scary but if all the right precautions are taken and medication administered then they can be controlled a lot better. She said the doctor would be in to see us shortly and she managed to get a smile from Matthew. We felt more at ease after talking with the nurse.
We were happy to see the doctor as he introduced himself and immediately faced Matthew and said so “How are you doing little guy?” “I see you brought a little friend with you!” We told him that Matthew is autistic and apparently suffered a seizure. The doctor told us most likely it was a seizure and that he should go on medication to help control it. He mentioned that if someone has 2 or more seizures then generally they are diagnosed as epileptic and would have to be administered medication daily. He told us the medication usually prescribed and indicated that most young kids and babies are given the same medicine known as depacote. He also felt we should schedule an appointment with the hospital to have him monitored through the night if he has another seizure but did not feel it was necessary at this point. He discussed the relationship between autism and seizures and did indicate that many children on the autistic spectrum do also have seizures so he was able to answer one of my questions immediately. We told him that we were concerned and asked him what we would need to do once we start him on this medication. He was very informative and seemed to have many children as patients. He said that the child would have to start on the medicine at the recommended dosage and stay on it consistently and then the dosage would be increased over time as the child experiences body growth. They have to be monitored closely and their blood levels have to be checked regularly. He advised that we start him on depacote and if he experiences another seizure then we would bring him to emergency and then they would have to schedule the video monitoring. He also suggested that an MRI would also be requested. This seemed a bit to much to take in but we realized the severity of the situation and were in agreement. The doctor assured us that our son will be fine and we would just have to monitor him more closely. We were grateful to see him and the nurse and felt we would certainly be back.
There are moments we never forget and as the parent of a young child we are always concerned for their welfare and have them on our mind just about every minute of the day. It doesn’t matter if we are at work or running errands when you become a parent you are a parent 24/7, 365 days a year for the rest of your life. It at times seems overwhelming but a responsibility gladly accepted and one taken with immense pride and heartfelt joy.
I was working at the office and it was around 7:15 pm as it was not unusual to work some late nights. My wife was working too so it was my mother-in-law at home watching Matthew and we were living in a rented house in Levittown, NY.
As I was working on completing a financial statement I received a frantic call from my mother-in-law screaming that Matthew was not breathing and his body was limp. I immediately told her to call 911 but she seemed reluctant or did not understand so I told her I will be home shortly and quickly left the office and headed for my car. I was quite shaken up not sure what was going on and I reached out to a neighbor to run over to our house to check in on Matthew and Terry, my mother-in-law. She said she would head over to the house right away. I also called my sister Kathy who is a nurse and told her that something happened to Matthew but I was not sure what since I was not home. I asked her if she could check in on him and she said she would. As I arrived home I quickly ran into the house and was greeted by my neighbor and sister and they pulled me over and had me sit while my sister said she had seen Matthew and that he is breathing and getting color back in his face and was comfortably resting with grandma watching him and it was her opinion based on what was described to her that Matthew had a grand mal seizure and that we should schedule to see a pediatric neurologist and if he has another seizure to take him to the emergency room. I asked her if she thought we should take him to the hospital now and she felt that he was doing better having come out of the seizure and was resting comfortably. My sister felt if we took him to emergency we would probabaly just be waiting for a long time to be seen and it was best to speak with a pediatric neurologist and try to schedule an emergency appointment in the next few days at Schneider’s Children’s hospital. She said it is more than likely Matthew had a grand mal seizure and will have to be administered medication to help control the seizures.
I checked in on Matthew with my sister by my side and saw him resting and in good hands with grandma by his side. I asked her if she spoke to Maria and she indicated that she could only leave a message. I tried to call her and managed to get her and asked if she checked her messages and she said she was just about to call when I did. I told her Matthew had a seizure based on what Kathy told me and told her to come home now. She said she was on her way.
It was a long night as I was very worried and not sure what to expect. Matthew did sleep the night as the seizure must have exhausted him. Maria and I had him sleep in our bed and we monitored him through the night.
First thing in the morning I called Schneider’s Children’s hospital to schedule an emergency appointment as soon as possible since our son apparently suffered a grand mal seizure and we were very concerned about it. The operator transferred the call to Pediatric neurology where I spoke of our situation and we were scheduled an appointment for Thursday which was a few days away and I asked her what we should do if he suffers another one before then and she advised we take him to the emergency at Schneider’s if we encountered that. She scheduled the appointment for early afternoon so I arranged with my office to take the full day so I could make the needed appointment with my wife and they were very understanding and accomodating. I now had another area of investigation now to read up on which was alarming and I started researching on the internet grand mal seizures and epilepsy and I wanted to make sure we are doing everything we possibly can to help Matthew with this condition. I was really starting to rely on others more as this seemed a bit overwhelming to me and I was very concerned for our little boy.
We were very fortunate that Matthew was eligible and approved for the early intervention programs funded by the state. I remember feeling encouraged that he was getting services and special attention for his autism diagnoses. When you are charting unfamiliar territory for the first time you must put your faith and trust in others and you are always hoping that each day builds upon the next and that with all the resources being made available to us that progress will be certain and consistent. I remember feeling very appreciative that our son was considered and provided these services. We were always treated nicely by the staff working on Matthew’s case and we were fortunate to have home visitation for the first 2 years. I remember a couple of visits with the assigned teachers as I was usually at work when the sessions were conducted. My wife would be home with Matthew in his first few years and she would be home when the staff would visit. I made it a point to take a vacation day here and there so I would be home for a few visits and see how Matthew was progressing. It was a one on one session with Matthew and his teacher. The teachers that came to the house over the first couple of years were women and they were very dedicated and very friendly. I remember on one occasion when the teacher came to visit Matthew she would be so excited on her arrival and she would address him by his name and she had a tape/cd player where she would play music to him and she would pronounce words and speak to him and mouth words with him. She also used a lot of visual cues and picture books to help him with learning and developing vocabulary. She would always start the session with the ABC song and she had Matthew sing with her. He seemed to be responsive when he was having a good day but sometimes he would be very cranky and the teachers would have to plan for those difficult times as autistic children can be very unpredictable from one day to the next. We were always informed how the session went because the teacher would keep a log book where she would explain what her session focussed on and how Matthew interacted and followed instruction. We would read the daily entries and provide feedback and raise questions.
Matthew seemed to enjoy the visits and we felt that they were very important in his growth and development. All the teachers that worked with Matthew all indicated that he is a very bright boy and is on the spectrum where he is considered high functioning. As Matthew approached his 3rd year he seemed to be developing more of a vocabulary and he was singing songs and showing an eagerness to learn and explore. He was so cute in his interactions with his teachers and they all fell in love with him and seemed to take a personal interest in his development.
As parents of a special needs child there are so many concerns and questions regarding your child’s stages of development. We knew we were on the right track with the Early Intervention Programs and the trained and dedicated teachers. We learned to take one day at a time and to have a lot of patience and to always be proactive with Matthew’s training with the Early Intervention teachers always expressing any concerns or questions we had. The teachers were all so very accomodating and very helpful.
I am still learning about autism and will be learning about it for the rest of my life and I will always be there for my son as will my wife. I feel as our son grows and we give him the support and encouragement he needs we will see progress. We have to have a lot of patience and put our minds at ease and hold on to hope and realize we are sometimes powerless over our situation but we will try all we can to give our son the necessary support and love to enable him to grow and develop and achieve as he most certainly deserves the same opportunities that all children deserve.
Our son may be autistic but he also is a young child who has the same curiosity and the same desire and the same passion that other children have and he is our pride and joy and we are so proud of him!
Matthew, You’re our shining star! Go fourth and do all you can in life because you are truly special and we love you so much!