One of the hardest things to explain to any child is the death of a loved one. In trying to explain death to an autistic child it requires a great deal of strategy and understanding. When my dad died so tragically it was a very difficult thing for me to deal with and to know that he was a big part of Matthew’s life made it so much harder explaining it to him. I remember when I first learned of his death I was in total shock as both my brother-in-laws came to the house to break the tragic news to me and my family. They asked if Matthew could stay in grandma’s room when they sat down with me. As they told me my son happened to come into the living room and he saw me crying and asked me what was wrong. I was so sad and in such shock I was in no condition to talk to Matthew about it so I ran up to tell Maria and asked her if she could watch Matthew as I needed to have time alone to take it in and deal with it as I knew it would not be easy.
The hardest part of coping with my father’s death was learning the sad circumstances of his death. He was a very kind and caring husband, father and grand father and a wonderful person who was so very generous and compassionate and he would do anything to help us out. He was wonderful with all his grandchildren and he just was like a big kid who was always there to baby sit. So when I learned that he leaned into a speeding train and was thrown further down the platform cracking open his skull and dying on impact I was just so beside myself. All I could do was try to understand what would make him do such a thing and I just could not find an answer. I did know he was sad and lonely at times but he was so active with all his grandchildren that we all thought he was doing ok. It is such a tragedy and I just feel truly awful about it because my dad was such a wonderful man who did so much good and he deserved a much better ending than this horrible tragedy. My dad died with a broken heart and we just could not help him through his pain and I am very sad about that.
So as time has passed and we realize the absence more and more it still is fresh and very painful to me. I have sat down to explain about “Pop” to Matthew and he does not accept that he is gone. In fact when Pop’s birthday passed this October 27th my son asked me where was his birthday cake and I shrugged my shoulders and told Matthew that it wasn’t appropriate and he started to lose it. He started crying and screamed at me that I was not respecting my dad and he did not want to see me any more and he ran upstairs to his room and shut the door and cried. My son taught me something in that moment and I felt really bad so the very next day I went to Matthew’s favorite bakery and bought a birthday cake for “Pop” and when I showed him the cake he gave me the biggest hug and kiss and said “See I knew you loved your dad and he knows it too!” He made me realize that we should never forget and this was his way of showing it so we sang Happy Birthday to Pop and we each had a piece of cake in his honor.
Another aspect of autism that poses a major challenge in dealing with life situations is adapting to change. Matthew, like most autistic children is resistant to change and if there is the slightest change it can have an affect on the child where they will react in a way that could be violent or where they will scream or cry or both and it can take time to settle them down. Most autistic children need to have a sense that things remain the same as they hate change. It was very difficult getting Matthew used to the idea of having a new teacher each school year and it took 3 years before he could have a change in his school teacher. He now seems used to the idea and now is adapting well to a new school and new teachers.
Behavior is probably one of the major areas we need to work on improving with Matthew as he tends to have trouble conducting himself properly in different settings. We used to never go out as a family to a sit down restaurant because Matthew just could not sit down and behave. As he is getting older it is getting better but on occasion he still acts up but it is with less frequency. We usually go to family style restaurants like Friendly’s and Matthew does sit and behave and it is good to get out as a family sometimes especially when we are on vacation.
When Matthew was younger it was impossible to take him to a movie because he did not have the patience to sit and he would be up every 10 minutes and would talk and people would get annoyed so we used to have to walk out of movies fairly regularly because Matthew had a lot of difficulty sitting through them. As he is getting older we are finally able to see a movie in its entirety with the exception of the occasional bathroom break. It now has become a pleasure taking him to the movies and is one of the things we look forward to doing together.
We also encountered times when Matthew would run off without warning when we were in the mall or an amusement park and we really had to run after him so he would not get lost. It took many times sitting him down and explaining to him that he can not do this because he can get lost and it is not easy finding him in such a big place with so many people. After many stern discussions with him on this he finally realized it is not a good idea and he does stay close by now which gives us peace of mind.
We are now seeing the progress Matthew is making and we are pleased but feel he has a long way to go and we are now starting to prepare for the time when he starts to notice the girls. This is something I am hoping will be a smooth and easy time for him but knowing how kids are I feel we will have lots of discussions about it and we will wait for him to ask as this is more appropriate. We also want Matthew to focus on his studies and do well in school so he can further himself and plan for college one day.
I feel the kids of today’s generation are growing and maturing much faster than we did because they are exposed to so much more with tv, the internet and school. We have to make sure we listen to them and provide them with a forum to talk about all their feelings and always maintain a two way conversation with them. Matthew is our son and he is very important to us and we wish to always be there for him and guide him and teach him about life and help him be the best he can be. He is our pride and joy and we love him so very much and want to teach him well so he can enjoy life, establish friendships and do all he wishes to do.
Edward D. Iannielli III