After my little intro, I am going to start at the beginning of our journey.
Parker has always been a healthy and smiley babe. He hit his milestones at about the same time other children did. See, Pman is our first child so we didn't know things he started doing around a year and a half or so were things to be aware of. When I would pick him up from daycare, he wouldn't acknowledge me coming in the door. No looks, nothing. We could also call his name and he wouldn't respond. He never made eye contact, he didn't like to be cuddled or held, he only spoke a few words and they were spoken...well, almost sang... in the same tone over and over. Around this time, a neighbor was watching him for us for a few hours one afternoon and when I went over to pick him up, he was sitting in her bedroom behind the door. She said "He's been there pretty much all day. He hasn't been crying or anything but every time I try to get him involved in something else, he goes right back in my bedroom." I asked her "What's in there that he's so infatuated with?" She just looked at me with an almost sadness in her eyes and said, "Car, its just the door stop spring. He's been flicking it all day." I looked at her and we both basically read each other's minds. After that day, Tim and I decided to contact our school district to have one of the autism specialists come out to play and observe Pman. The hardest thing in my life was not hearing the autism specialist say, "Carlee, Parker has autism." I almost already knew that about him. The hardest thing about it was reading the write-up of him. It was so blunt. No sugar coatings. The words were so harsh and so direct. I saw the words "significant educational need" in so many places that I just couldn't finish reading it. I wasn't going to see my son any differently because of what a report said about him. To this day, it is still hard for me to actually read his IEP's and other evaluations. I am aware of areas that we want to focus our energy on with his education but I am not going to think differently of him because of what has been written out on a piece of paper.
The word "diagnosed" has never sat well with me. I have always thought that word to be a kind of conclusion. A kind of word that has your path of "treatment" coursed out for the certain "problem." It is something that I have always correlated with a health matter. Something that is stamped on you that you cannot get away from. In Pman's life, we have "learned" of his autism. It is a part of who he is. Not all of what he is, but it is something that shines with him. To learn of his autism, it was a sense of relief. It was something that we could become familiar with the "characteristics" of and not the "symptoms" of. "Symptoms" are something you get with a cold, the flu...things medical. Autism is way of us knowing more about how Parker sees and processes the world. It was a relief to know this about him so that we could better work, play, teach and most important of all...interact with him.
I know it can be hard because "symptoms and diagnoses" are thrown around so incredibly much in the autism community. It's almost automatic to say "my child was diagnosed with autism..." but I want to challenge you. You LEARNED of your child's autism. It's an understanding of them. It should be a relief to learn more about your child who can seem so withdrawn and mysterious. Always keep this in mind about people who have autism. Everything they do will be a learning experience for you. This was just the time in our lives when we learned more of who Pman was. Relief.
I don't know if I'll ever stop thinking of it as a diagnosis. This is mostly because I hear the word diagnosis so many times a day working in the medical field. It's such a constant in my vocabulary for much more than just autism. I don't connect it with a negative feeling about who Liam is anymore though. I appreciate your different way of looking at it, very insightful. I remember coming home from the conference when we were given his "diagnosis" feeling devestated. I opened the front door and was greated by the exact same child who sad goodbye to me as we left for the appointment. My healing and acceptance started right then. That realization that he hadn't changed, was in fact the same fantastic kiddo he'd always been was a wake up call. I totally understand what you are getting at here although I don't feel the same about the wording as you do. It's about not feeling like something is wrong. I love the idea that we learn more of who they are instead of finding out they are flawed in some way. I have felt that way since I walked through my front door right after that god awful conference and picked up my perfectly wonderful child.
ReplyDeleteHey Alicia! Sorry it took me so long to respond on this. I am just getting the hang of this blogging thing. HAHAH! I completely agree with how absolutely draining that first initial meeting was. I wrote this post because I have had so many people tell me as an instant reaction to saying that Pman has autism was "oh no! I hope they can find a cure." I was fine with brushing it off for so long but after so many times of hearing that, I had to write about it. Just the negative outlook it can have with people not directly in the autism community is where I would like to shed light on. So many people just hear "diagnosed" and think that there must be a cure to a diagnosis. I LOVE hearing different perspectives on things like this and I want to learn so much more from others. As always, feel free to post any of your thoughts. I am always open to thinking and hearing things from a different point of view.
DeleteYou are 100% correct...when you walk in that door, there's never anything that should make you feel differently about your babe. I think a diagnosis should be looked at a relief and just like you said, learning more of who they are. :)