Autism, Epilepsy and a parent’s fear.

When I first learned Matthew had his first seizure back in 2003 I was a nervous wreck. I had no idea what would come of it when I received the phone call from my mother-in-law. All she said with her voice shaken was that Matthew was unconscious and was not breathing. I was at work and I started to panic and I told her to call 911 and I would call my sister who is an RN and I would head right home. I asked her if she had called Maria and she said she could only leave a message on her cell phone. When I called my sister I told her that something happened to Matthew and apparently he was not breathing according to my mother-in-law. I asked her if she could go to the house and check on him. She said she would go right away. I was driving with the intent of getting home right away as I was not sure what was going on and all I could think of was my poor baby and literally I had tears in my eyes hoping everything would be ok. When I arrived home I was greeted by a family friend and I immediately went to check up on Matthew as I saw my sister with Matthew and my mother-in-law. I asked my sister how Matthew was and she said he was resting and he had definitely had a grand mal seizure. She explained to me that my mother-in-law helped revive him and laid him on the bed when she came over. She said he would sleep for quite awhile as seizures take a lot out of you and after having one the body needs to recuperate and rest. I asked her if we should bring him to the hospital in the morning and she indicated that it was not necessary but recommended we schedule an appointment with his pediatric neurologist.

It was a very difficult time for me realizing Matthew had such medical concerns and we were now worried about his seizure because going through one is very scary and very unpredictable and it can happen anytime and anywhere and knowing this really makes me very concerned for my son as I need to know he is and will be safe. When you become a parent your child always comes first and you worry over every little thing. I even remember getting upset when Matthew had a fever. It’s just the things parents go through with their children. When I think back to the day Matthew was born and how seemingly perfect he was and how beautiful he was I just felt this overwhelming feeling of sadness and helplessness knowing he may have a condition known as epilepsy. It is very worrisome to me because I had an experience as a young kid that will never leave my mind and I can remember it as if it happened only yesterday. I was standing at attention in line in my 7th grade art class during a fire drill and there was a girl in line a few feet in front of me and several other classmates. Apparently she started to lose control and I was not sure at first what was happening to her but then I realized she was having an epileptic seizure as her whole body convulsed and she lost her balance and she fell to the floor hitting her head against the chalkboard ledge that holds the erasers and chalk. After she fell we scrambled to try and help her and the teacher kneeled by her as arrangements were made to get her to the hospital. As she was carried out on a stretcher we were pretty shaken up and we hoped that she would be ok. I will never forget this for as long as I live as it was a week after the incident and our Art teacher stood in front of the class visibly upset as he said that our fellow classmate who had the seizure had passed away. It was so very sad and I could not help but cry for her and her family. This really shook me up and it affected me terribly as I spoke to this girl on many occasions and we were friends. My heart ached for her and I just felt this incredible sadness. I prayed for her and for her family and we sent sympathy cards and one of our special drawings to her family. This is especially why I was so very worried when my sister indicated Matthew had a seizure and one of the more severe forms which is a grand mal seizure.

In addition to the seizures Matthew has had terrible autistic fits and meltdowns where he loses control and reacts violently and uncontrollably and this also is very scary. We have always tried to calm him as he goes through a meltdown and it can be a losing battle sometimes but we have to have consistency in how we try to handle his meltdowns and try to be in control of the situation. When we don’t have control it can be a very bad situation and we are faced with a scene where people are looking and wondering what is going on as we try to restore order in our son’s life and in the moment. I am not a public person and when I am thrust into a situation where I am trying to get my son calm and relaxed during a chaotic time while he is experiencing these difficulties in front of people we don’t know, it can be very stressful and I feel alone and uncertain and wonder why he has to suffer so much. I want my son to feel happy and in control and do not want to see him going through this as it wears on us all.

Everyday I face as we send our son off to school on the bus is the uncertainty and the feelings in the back of my mind of anxiety and fear that Matthew may encounter a seizure or an autistic meltdown and he is alone with no one there to help. This is my biggest fear for my son and I wish for him to always be safe and protected. It takes getting used to this and I have to have complete faith and trust in others that if something were to happen to Matthew that he would be protected and aided by the school staff, a student or a good samaritan. Raising an autistic child who also suffers from epilepsy can be a trying and emotionally painful time and we realize we have to always be prepared and also have faith in God that he will always be safe and protected from harm. It is very important that I have this faith to ease my mind of these worries and burdens that come naturally as a concerned parent. I have learned to manage with a supportive wife as best I can but it is very hard sometimes and all I can hope for is that our son will be ok and then I can focus on what I need to and try to allay some of my fears and worries and find peace.

Matthew is autistic and epileptic but he can live a life that is full of promise and hope and he knows how much we care for him and want to see him make progress and find happiness and manage through the seizures and meltdowns. We are loving and caring parents and want our son to always be safe and protected and we will always do all we have to so he can find his way and develop and be strong and confident and happy.

Edward D. Iannielli III

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