Michael

I had a visitor today…two actually. A knock on the door…always exciting in the middle of the day for Griffen and I. I open the door to two Jehovah witnesses standing before us. I get them about once a month or so. I’m always polite, refuse the pamphlet but wish them well. Today was different. There stood two men…Griffen by my side eagerly looking at them…curious to no end. We did the usual greeting and with in 20 seconds the one on my left asks me if Griffen is autistic or has aspbergars. I am always thrown by this when people ask me if Griffen is autistic. It’s like they are playing on a game show “Guess what’s wrong with me?!” I think it’s an incredible selfish, invasive and rude thing to do. But today I did not react I simply asked why he would ask me that…genuinely curious.
He told me that he was autistic. His name was Michael, he was 38 and until he said it I did not notice anything that would make me think he was autistic. I went from guarded to welcoming. I was…for whatever reason happy to meet this guy. I just started talking to him about autism. He told me about himself…we talked about Griffen and I even talked about my own spectrum issues growing up. We stood outside my house for 20 minutes and I got some amazing insight into someone’s life…someone I could relate to on more than one level. A chance encounter but the timing could not have been better….a truly serendipitous occasion.
As we spoke Michael discussed how he relates to the world...the challenges he faces…what he enjoys and what drives him. Who I saw before me was a warm, intelligent and caring man. I have been thinking lately a lot of how I see and have seen the world and my own issues with autism spectrum disorder not to mention Griffen’s. Here was someone who could relate to my son…it was fascinating to hear this grown man talk about his life. Even more amazing was how much I related to him. Some things that drive him…the way he functions in the world I found rang true in my life…we were similar in many ways though I affected to a much lesser degree.
But what I was left with…the thing that really made a mark on me was his attitude towards himself. I have seen a huge shift in awareness towards autism in the last 3 years. This guy is 38 so I can only imagine what it was like for him to grow up. He saw himself as dysfunctional…the way he communicated problematic. Here was a man who saw himself on the outside of life struggling to communicate with those around him. Not only that but he saw himself as flawed. I was looking and listing to him…I saw nothing wrong with him. He simply was who he was…if anything I found him to be more pleasant and enjoyable than most people I meet. I can imagine the messages he has received over the past 38 years. I have experience with this from being teased and ridiculed for the majority of my child hood due to a speech impediment. Negative feedback from the world can have a lasting impact on people…especially from childhood when you are creating an identity for yourself. I don’t know how his family dealt with it but I can only imagine they did not provide him with a strong sense of self…and he still struggles with it still.
I was listing to Michael speak and I began to recall the thoughts I have had recently about how we are raising Griff…and our Son Rise program. Son Rise provided us with opportunity to make life changing altitudinal shifts in how we view Griff and his autism. I have wondered how complete my acceptance of his autism is because I know it is the key to recovery. But today talking with Michael I knew that there may be times I have a hard day and I stray from %100 acceptance but it is there in my heart. I came to the realization that my attitude and acceptance of who Griffen is…in tandem with my unrelenting belief that he can accomplish anything is the foundation for his future happiness…he is not bound by the diagnosis of autism and that he is now and always will be a complete person no matter where he is on the spectrum. I looked at Michael…I have thought of him all day and I could see where having this attitude around him would have changed the course of his life. He told me how isolated he is…how he struggles to communicate with the rest of the world. This is a man with three kids and an ex wife….not stuck in some home taken to be aired out once in a while…he has a life. My god have I felt like this! This guy is me but an amplified version.
He would issue a negative statement about himself and I would offer him a positive one. He kept talking about how he could not read social cues and people would be upset by his persistent questions and clarifications. As if he was trying to prove them wrong when all he was actually doing is get to the truth. The truth…being correct is everything to him. He saw this as a flaw in himself. I saw it as simply who he is…his way of communicating and a perfectly valid one at that. How people responded to him was out of his control and not his fault. This seemed a completely new idea to him…one I did not have time to explore with him. But I offered him the idea of that and suggested the opportunity for him to work on recognizing social cues in others. Again this seemed not to register with him…like he thought he was set in stone…his ways were there and would not change. I think this is false.
I felt a connection to this man and he felt one with me. It was gift for me on a rainy day….in a time I have been questioning my own worthiness and a father and a man. I could see he wanted to continue. We both expressed our thankfulness of our meeting. I could see he wanted to continue the conversation so I gave him my number. I hope he calls. There are many things I would like to ask him but most of all I saw an opportunity to make a friend.

Focus

I have been having a writers block since I got back from Option a month ago. In fact the block has gone beyond writing. I didn’t come back in a funk…but I went there to discover self trust and I have been questioning my place in the world since I returned…the role I will play in Griffen’s life and how I will continue to shape the kind of a man I am. I am having trouble doing both at the same time. I am someone who throws himself into something with all I have…work…love…what ever holds a passion for me. I run into trouble when I do this with things that over lap. I can multi task with the best of them as long as the tasks are all part of what my focus is on. But when I have my focus split with two things that overlap…like recovering Griff and making a life for myself I start to not know where to put my energy….my priorities constantly shift back and forth between them. I lose focus and I become what I am now…a mess. I invest in one and it takes focus and energy from the other and the guilt returns which further disrupts my forward motion. I struggle with creating the balance between the two. My problem…as I see it in this moment is I see the two, my goals and aspirations and Griff’s recovery, as separate entities. I am recovering my son…later I will have time to myself. There is something in this….I still see time to myself as an escape from recovering Griff…“shit”…have I not fully accepted his autism yet? …after all this time? Can that be? I feel so close to feeling that I have. I don’t know maybe that’s not it. Perhaps its just I spend too much time in the house and I have lost perspective. I suspect its both to some degree. I see them as separate but why must this be. Why can’t I weave the two together now? I understand the need to separate them before. I was emotionally and physically tapped out…Griff…when his autism was in full swing…it took all I had to get through the day…I needed the separation. But now that he’s better why do I cling to old patterns. I am trying to wrap my mind around this…trying to visualize what I am getting at…not seeing it.
I am working on creating more time for myself…finding a creative outlet. I feel good. But Griff’s recovery has caught me off guard. He has gone from this Tasmanian devil lost in his own world to a responsive kid who is now a willing sponge ready to soak up the world. I have come to the realization that I have absolutely no idea what I’m doing! I don’t know how to teach him all the things he needs to know. I would love to stick him in school like everyone else but improved as he is he is not near ready for school. I’m caught in a limbo of being a completely burned out on being a stay at home dad and scrambling to catch up in making a life for myself that will give me the energy and light to help my boy.
I question the way we are recovering him at times. I look around at all the paths we could have taken…its easy to compare your life to others. Griff is better but not recovered yet…I look at what we do because I lose perspective. I know in my heart we are doing the right thing. The conflict comes when look to myself and feel…no…know I am coming up short as a dad…a teacher. I know his life here is lacking in some ways…but he is doing so well now. On the days I am able to engage him properly he really shines I can see his recovery...close…a certainty. I feel as if I have fallen through the ice and I am clawing at the surface trying to pull myself back on to the ice before I get stuck underneath. I find myself in a desperate race to heal my son and myself at the same time and I’m having trouble doing both…I know there is a way…others are doing it. I know I need to do for myself before I can help him to my fullest capacity but putting myself first…because that’s what it feels like….goes against every grain in my body and the battle has left me at times at a complete standstill…lost to what direction to go in.
I just realized why I want to keep “my” life separate from Griff’s recovery. I have known it all along. I have not accepted it…his recovery as part of my identity....I have not chosen to love it yet…I have not developed a passion for it. I think I have been running from this. Wanting to create a life outside of this world I live in everyday. I can embrace it…that’s it….I have not wanted to embrace it because I thought I would have to give up my hopes and dreams for myself. It all comes back to my inability to focus on the two at the same time. To do one…in my mind I think I have to give one up so I have been straddling them both for years….not willing to dive into one for fear of letting the other go. Damn. The kicker is I know now this is a belief…I choose to see it this way and all it takes is a decision on my part to stop believing I have to see it this way. I can do both. I can have passion for both. Wow I recognize this…I can see it…now I have to route out the beliefs that have made this part of who I am….I have some work to do.

Plugging Back In

My latest trip to Option put a spin on my head that I did not anticipate. I came home and went off in a direction I did not expect. I have spent the weeks since I got home examining myself and what I want out of all this…to make me happy. I have reached a point where I have to look after myself if I’m going to be worth a damn to anyone. I’m burned out being here in the house with Griff all the time. I have little left to give him. Though I want to be there for him with all my heart I need to start putting something back…to start nourishing my intellect. I’ve spent the last several weeks thinking about and doing just that. I’ve actually enjoyed it…go figure! Reading for pleasure…writing letters and exploring what I want to do in my life that will serve my needs. I have not accomplished this alone. I’ve been helped by a dear friend and my love for her has opened my life up to so much…more than I could have hoped for. I am happy to be here …on this journey….the world is getting bigger by the day.
But I have to plug back into my life now…I have allowed myself some room to work things out. Now I dive back in…reconnect to Son Rise and Option and get to it. But I bring with me another dimension to it all: serving my needs as well as Griff’s. I can do this…I am doing it. The past month has not been what I expected but very rewarding…enriching. I have seen amazing growth in Griff in the last month while at the same time old behaviors have returned (screaming is the loudest one and what comes to mind first). I would love to say I greet every scream or spastic episode with a huge smile and a warm heart but no…at times it’s hard to see. I still struggle to stay on top of our son rise program and all it entails, diet, and all the day to day life stuff. I still don’t ask for help and look at things and see a specific order in which I need to complete them. I need to look at this…change here would be a good thing. But I am thankful for all that has come my way in the last 6 months. The world I was seeing through a pin hole is now opening up into a panoramic view and the possibilities are endless. I am starting to think I can not only be happy but I can start to accomplish something’s for me…I can go out into the world and make a mark…while still loving and healing my son. I marvel at people who do this seemingly with out effort. It has taken me 6 months to get here and still I have so much to do. Its ok…I’m learning to enjoy the ride.