Wednesday, January 25, 2012

Learned vs Diagnosed



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.




Monday, January 23, 2012

My Super Hero Named P-man


Ok so I am going to start this blog out on the right foot. Now to me, this is so much more than just a blog. This is me writing out so much that is so dear to me. It's a little scary but I have to make a leap before I can have the confidence to spread my wings. What I will be writing about is a topic that for some reason has become a topic of strong opinion, negativity and ignorance. It's almost as if there are politics at work on the subject. It's a topic that is my life, a topic that I believe is not being represented in the way it should be. It is the topic of autism. My son Parker is my super hero. P-man is the most joyful, free spirited person I have ever had the privilege of being around. His infectious laugh is something to be cherished. He is mysterious and yet so relate-able at the same time. He brings smiles to everyone's faces who are around him. He has autism. Notice how I didn't put anything about him being autistic right off the bat? That's because autism does not define my son. Parker is his own person and yes, he is autistic, but autism does not make my son who he is. Parker's personality, his smile, his inner light, his love of Lightening McQueen, Mike and Sully, trains and tractors....that is my son. This blog is going to be about my life being a mama to Parker. Not an "mom to an autistic child" or anything like that. I have had enough of blogs, websites, facebook pages for parents of autistic children to vent and dump negativity onto. Don't get me wrong, I understand when venting is needed when challenges arise but I have had enough of it. I initially joined sites for support and instead I knew I had to start something different. Something where I express my real feelings and a place of positivity. I view autism as a beautiful thing. Now, if I were to say something like that on a facebook community page, I would have comments right away telling me how I'm "living in the twilight zone" or "being delusional" or plainly stated that I'm "not being honest about the tragedy of autism and not being realistic." Now let me tell you, after reading comments like that...I am done and I know I have to do something about it. That's what this blog is for. It's my close, honest feelings that I want to share so that the topic of autism isn't viewed or spoken with a negative undertone. My son is a gift and am grateful every day I am his mama. Yes, I know there are challenging days...I have many....but this blog is about how to look at those challenges in a constructive and positive way. 

This is my life...this is my son. He is not defined by a word....autism.  He is my life. He is my shining star. Wherever he goes, light and smiles travel and spread. He is my P-man. My super hero.