I spent the past weekend at my parents, together with Sunny. While I was there I had two insights that made me think and ponder since then.
The first one is that Sunny's disability is obviously getting more visible or apparent now. For many years this was different. I have always wondered what other people see when they look at him and how others perceive him. In the past a lot of people did not realise that he was different because his disability is invisible. Now this seems to change slowly. It is not his appearance but rather his unusual behaviour and his inability to speak that makes people realise that he is different. We were at the swimming pool together with my mother on Saturday morning where a group of three kids with special needs and their caretakers were, too. Before we were about to leave one of the caretakers approached me and wanted to know when we were going to leave because apparently there is only one key for the changing room designed for people with special needs and they wanted to make sure that we would not leave at the same time. I did not even know that a special changing room like that existed so that was no problem but I was a bit surprised because she had only seen Sunny and me interact in the water. Sometime earlier my mother got into contact with a stranger and after they small talked for a while he asked her about Sunny, what kind of special needs he had and so on. We also spoke to an elderly woman who also mentioned that she had experience with disabled kids. All of them were nice and kind but it got me thinking because those encounters were so heaped and happened within two short hours. What is also remarkable is that all of them had had some kind of boundary point with disability in general. Maybe others do not dare to talk to us that easily or they do not perceive it yet like experienced folks do.
However, this is a new experience to me. On the one hand it might make it easier in the future to deal with the stares because people will realise that Sunny does not behave strangely because of bad parenting but rather because he has special needs. But on the other hand it is another difficult step I have to take on the road to acceptance. Until now it was still possible to disappear in the crowd and not stand out that much. Sometimes I think it is easier to have a diagnosis immediately after birth. That does not mean that those mothers do not have bad days and feel pain for various reasons and because society behaves horrible, too. It is so hard to explain what I mean. For me the process of acceptance and learning to deal with it is so long because it happens gradually since Sunny was born. I have to adapt to new situations and adjust my way of dealing with them constantly. I guess this will still take some more years.
The second insight is that I do not want to talk about Sunny's special needs with everyone. We had a class reunion while I was at my parents and one of my oldest friends (whom I spent my entire schooldays with, starting in first grade) and I had a long talk. We had not seen each other for a very long time and updated each other. Because he is a doctor now he asked me why we were at the hospital frequently (we are friends on Facebook so he knew) and when I told him that Sunny has special needs and went into detail I saw pity in his face. He touched my arm and said that he was so sorry. However, in my opinion there was no reason to react like that because I talked to him in a normal tone, no tears, just delivered facts in a normal way. I said that he did not need to be sorry and that we were fine but his pity did not vanish.
Do not get me wrong, I am not ashamed to speak about my beautiful son and his special needs. I am so proud of him and I love to show off his gorgeously beautiful face. I love to talk about his contagious laughter, his wit and his curiousness, his brilliant memory and the way he speaks without saying hardly a word. What I do not want is others pitying me for him being just him.
PS: Happy 4th of July to all my Amercian friends and readers! Enjoy the day and have fun!