Saturday, May 8, 2010

Raising an autistic child - My biggest fears

As a parent it is natural to have worries and concerns in raising your child because there are so many factors that come into play and your child as they grow are more curious and spend more time outside of the home which takes some getting used to. For the normal child it is a concern and you always worry for their safety. If your child is autistic the worries and concerns are constant and heightened and your child's safety is on your mind 24/7. There is not a minute in the day when I am not thinking of my son. I realize I have responsibilities but my son's safety and what he is doing is always in the back of my mind. I am a father who has learned over the years that with raising a child with special needs you really need to spend time with your child and reinforce every little thing with them. My son has no apparent fear and he is very spontaneous. No matter how many times I tell him to look both ways when crossing the street I find he still darts out into the road without looking both ways and when I catch him I am always reminding him of this. It does become very frustrating because you always want your child to understand and realize how much they need to exercise proper judgement and care in all they do.

I have been very supportive of my son all throughout the years and I continue to be there for him but the reality is I am not always available because of my normal work commitments. We all need to make a living and work so we can afford a home and take on the necessary responsibilities and challenges. I have been through moments with my son that are very nerve wracking. I remember the very first unsettling moment I had was when I was at work and I received a call from my mother-in-law stating that Matty wasn't breathing. It was around 7:30 pm and I was working late. I started to panic as she told me this and asked her to call 911 and that I was on my way home. I asked her to also call Maria if she hadn't yet.

As I arrived home all I could think of was my son's situation hoping that he would be revived and breathing again with full color back in his face. I had called my sister after speaking with my mother-in-law when I first heard the news and asked her to check in on Matty. I was happy to see my sister at the house and remember vividly her asking me to sit down. I was very concerned as she started to tell me his situation. She has practical experience working as a nurse so when she sat me down and told me that Matty had a seizure I felt my heart sink and asked her what that meant exactly. She indicated that Matty had to be seen by a doctor to be evaluated but advised that he had gained consciousness and should be fine but that we should monitor him through the night.

I did some research on Autism and seizures and had found that it is fairly common for autistic children to also have a seizure disorder also known as epilepsy. I was now more worried because when a child experiences a seizure you have to protect them if you are fortunate enough to catch it in time. Epilepsy is a condition that affects the brain and its normal transmission of signals and when there is a "misfire" the result is generally a seizure. That experience of seeing my son vulnerable and his life potentially in the balance really made me realize the seriousness of his condition. I was so at a loss as to why my son had to endure these scary medical conditions of autism and epilepsy. I remember my mother-in-law, who is a very religious woman praying for Matty and gently comforting him as he slept the night as she read softly verses from the bible. I also put my faith in God and we went to a healing mass at the suggestion of my mother-in-law to seek religious comfort and help.

Since his very first confirmed seizure Matty has been prone to seizures though they have been infrequent in occurrence but still very scary to witness as they involve the body fully convulsing and total loss of bodily control. I have to separate my emotions as he is going through a seizure so I can act promptly in addressing his safety needs when he is experiencing a grand mal seizure. We have been to the hospital countless times due to his medical condition and find it to be a sobering experience. It seems we don't always have control of the situation and that is a difficult thing to have to deal with.

In dealing with an autistic child and how they react to things it is also common for autistic children to easily get upset in a particular moment after being affected by something. They are prone to having meltdowns which also are difficult to deal with and requires quick action in protecting your child and trying as best you can to calm them down. My son has had some really bad meltdowns which requires a lot of patience and understanding in addition to a quick response in trying to diffuse the situation and protect your child from hurting themselves.

My other worry with my son is his impulsiveness and quickness in getting away. He has darted off while we were shopping at the mall and has been lost on occasion which really has shaken me up. I remember also taking him to Great Adventure in New Jersey for the day where he had disappeared from my sight of vision for a few minutes in a crowd of children and I had such an anxiety and feeling of helplessness not knowing where he was in that instant and all I could do was shout his name desperately looking for him in a sea of children. When I caught him several minutes later running in my direction I was so relieved and I grabbed his hand and held it tightly vowing never to let go again.

Another fear I have is getting a phone call from my mother-in-law stating that Matty ran off and she can not find him. This has happened on occasion as well and each time I feel the same feeling of anxiety and worry for his safety. I am always reaching out to my wife who sometimes is not available because of her job and it really gets me upset because our son needs to be properly watched and my mother-in-law is trying her best but she is obviously unable to keep up with him all the time. I have been very uptight and nervous knowing that our son can be very unpredictable at times. I have sat my son down many times to talk to him about exercising proper judgement and I always try to teach him how to react in certain situations. Autistic children require so much love and attention and I have all the love and good intentions one can ask and hope for and I always see that I am there to help my son and guide him through life so one day when he grows up he will be able to face the outside world and be prepared for all that is expected of him.

Knowing my son is autistic is half the battle. The other half is being prepared for just about anything and reacting in a proper fashion so as to help my son and to teach him how he needs to be.

Edward D. Iannielli III

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Please feel free to read my writings and leave a kind message or suggestion. Thank you. Emily