Saturday, November 7, 2009

The loneliness of autism: changes in plans

I can speak from my own personal experiences that for most of us we do experience times of loneliness and isolation in our lives which can be very frustrating and painful but also can help us become stronger and better as a person. I also feel that the very thing that can lead to our loneliness and isolation can also be the answer that helps us get through it. I know that's true in my own experiences. In instances where we are talking about autism and how it affects children I know from our experience in raising our son that he has had his fair share of struggles in socializing with his peers in group activities.

We have had disappointments in common activities that most children can experience together with one another but for our son it seems much more difficult. I remember we were all excited for Matthew when he was rehearsing for his first holy communion but he seemed to have difficulty in following direction and staying in line with the other boys and girls to the point where the nuns felt he would have to be excluded from the group communion ceremony. His communion ceremony would be scheduled for the earlier mass where the head nun told us he would make it alongside a smaller group of boys and girls. Given the circumstances we agreed and told Matthew that he would have to behave better so he could experience making his communion with some of his fellow classmates.

We were all excited for Matthew for his special day and Maria and I picked out a nice suit and tie for him for the occasion and Maria dressed him and we were so proud of him and told him how handsome he looked. We took some pictures and we went to the church for the 9:00am mass rather than the 11:00 am mass where his class was scheduled. The mass was a regular service and Matthew sat anxiously awaiting and I was looking around to see where the other children were who were making their first holy communion but did not see any other kids dressed for the ceremony. I was upset because it seemed the nuns misinformed us and Matthew would be alone and not share the experience with his fellow classmates.

When the service was nearing the end the priest came to serve communion and Matthew was prompted but was not willing to go with Maria so the priest served the churchgoers and Matthew sat. As the priest concluded he signaled to us to see if Matthew was ready and after we spoke with him he got up and walked to the priest with Maria behind him and we saw him make his first holy communion and we were happy for him. My sister came and his religion teacher came also to witness his achievement and we were all so proud of him. I felt some sadness because he went alone with no other children and this made me realize Matthew's inability to stay still and follow direction will affect his socialization. He lost out on the experience of walking in procession with the other boys and girls but knowing my son he does not really seem to be all that affected by it. It was nice though that all the people in the mass clapped for Matthew as he received and that was very special. Matthew seems to rather be by himself which does cause concern as we want Matthew to enjoy the company of other children.

Matthew's religion teacher was so proud of him and she signalled to him and blew a kiss towards him. We were delighted that she came to share in Matthew's special day and after the service we took some pictures in the garden of the church and people said what a handsome boy Matty is and we were very appreciative. Overall it was a nice accomplishment for our son but he did it alone and I wished he could have shared the experience with the other kids like I did when I made my communion.

Another area where Matthew had difficulty following direction and staying in line was at the parade for the kickoff to the youth soccer season. Maria and I attended with our son in hopes that he would enjoy the experience of playing soccer on a team. We realized pretty quickly that this was not going to workout as Matthew had no interest whatsoever in the game and he 'd rather run over to the ice cream truck in the middle of the game. We knew right away that we could not continue if Matthew was not interested so we had to give back his uniform as quickly as he received it. I was upset but realized I should not push my son. I am only trying to introduce him to things that I thought he would be interested in. It is frustrating trying to integrate an autistic child into organized settings as it's like trying to fit a square peg into a round hole and it is obvious that it will never work. I do not want to give up but find limited options for Matthew if he can not get accustomed to a structured setting. Particularly in team sports you need to conform and be a team player and Matthew does not seem to display the ability to do so and the result unfortunately is that he will not be able to participate and experience healthy sporting activity and an introduction to competition through sport.

Matthew is able to attend summer camp and seems to do ok there as he has rarely missed a day and when I talk to him about it he is happy and indicates all the good times he has. This makes me happy and gives me hope that Matthew is able to find things that interest him and is able to participate. This is what I want most for my son is the ability for him to participate in group activities and to assert himself and make friends. Although Matthew is autistic I feel he has the capacity to learn and adapt and to listen and follow instruction. I feel he certainly can participate and establish friendships. I know Matthew seems to enjoy his alone time but I feel it would be wonderful if he could also enjoy learning through healthy competition that he can offer a part of himself and have fun doing so. All kids would benefit from soccer as it is a fun sport and requires a great deal of physical stamina which I feel Matthew would enjoy if given the chance.

In trying to reach my son I know he has some barriers that are hard to penetrate and I feel I am only scratching the surface in trying to understand the behaviors of my son and autistic children in general. I have done a lot of researching on the internet to try to gain better perspective and to try to find alternatives that might work for my son in improving his behavior and providing him opportunity for socialization and participation in sport. It is not an easy road and it is something that requires true dedication and a deep love for my son that will help me in staying optimistic and devoted. I feel it is my responsibility to help Matthew get through these difficult moments and reinforce our love and concern for him and to never give up.

I will always stay true to my son and help him grow and mature and allow him to make choices and provide him the opportunity to do as he wishes and I will always encourage him and ask of him to always talk to Maria or I about anything and not keep it inside as that only makes it worse. I always tell him how much mommy and daddy love him and how much we care for him and want him to be happy. We do not want him to feel lonely or isolated and we always encourage him to speak his feelings. We hope Matthew will overcome these behavioral difficulties and find that he is worthwhile and deserves to have friends and enjoy things. He is a wonderful child and he is very special to us!

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