Nuthead

Spending as much time as I have in the house with Griff…in the bubble has certainly taken its toll on me. The past three months I have had the opportunity to see my reflection. I have witnessed the love and creativity I want and can give to the world…it was inspiring. I thought for a long time much was lost to me…lost because it had been so long since I had felt it but seeing this in me gave me hope. I also had a chance to see parts of myself I am none too proud of. The emotions and beliefs from the past…ones that no longer serve me but I still allow them to exist and influence my life. These two sides of me have been battling it out these past months and it has been exhausting. It got to the point where I did not know which way was up…what was truth and what was fantasy. I finally had to take a step back to try figure things out. That was today and it was painful because I had to let someone go who I love very much. All day I had an emptiness inside…my breathing shallow never being able to make the feeling go away...suffocating

I went to a workshop on Privately Developed Programs for Griff. The workshop explains how to comply with state law when home schooling your kid. I sat through the workshop with this emptiness inside me…listing…taking notes…trying to concentrate and not think about what I had just walked away from. Then something amazing happened. I started speaking about our Son Rise Program. It’s as if everything dropped away and I was able to think about only this and all the joy and happiness it has helped reveal in our lives. The class got out and I spoke with a few parents about it. I felt passionate in what I spoke about and they felt this from me…one woman was laughing nervously and backing away from me…hee hee…saying it sounded like religion. I said something about me being my own god and the religion she referred to was nothing but love and acceptance…but I think I had lost her at that point :-) But the other two I felt move closer to me…they were eager to hear. I felt connected to them….it’s something that has been missing from my life for so long. I’m ready to get out into the world …I’m ready for volunteers…ready to step out from the safety of these four walls.

I have had some amazing connections with people on the internet and I am thankful for it and their friendship. But there has been no balance in this. Today inspired me to take that huge step I have been waiting to be ready for. I retreated within myself these past few months…I became a distorted image of myself….always me but after years of life in the bubble I was not living in ideal circumstances to reach my full potential.

I see this for myself and Griffen. We have lived a life a certain way thus far because it’s what he has needed. But now we are all ready for a change…we have grown out of our skin. We are all ready to move on. I see life being very different for all of us and it’s exciting. Griff has made some amazing progress these past months…we are all growing so much.

Today was a gift…and it all changed for me in a few minutes when I talked about something I felt passion for. I decided a few months ago I would seek to express myself in the world as I am and not hold back. I haven’t been doing this…not to the measure that satisfies me. Today was a reminder to take another step in that direction.

The emptiness did not return though I still feel the loss. In letting go I feel now I have taken a step closer to this person….and this makes me happy.

Lost

I have spent this year trying to uncover and examine myself in search of self acceptance. It has been an amazing time for me. I have experienced such growth. Yet I find myself today utterly alone and vulnerable. All this self examination can unearth things you sometimes wish would stay hidden. I came face to face with a part of myself I am struggling to understand. I thought I had moved beyond this part of me but it has resurfaced. I don’t need or want to give details…it comes down to my feelings of self worth. I can’t seem to break through to understand this. Each time I feel I gained ground life brings something new along and I discover that there is still more work to be done.

I lost something today and my heart is breaking. I feel the only way to move beyond the pain is to let it go and move on but in this I am not sure. I feel in walking away from it I am giving up an opportunity to learn and grow. But I don’t know if I can stand the pain and the heart ache I think I would have to endure. I don’t know what to do.

Griffen is blossoming while I flounder by his side. I can see the me that is together doing all that I need to do…he is just out of reach though and I feel like my feet are moving through molasses

I can see myself put one foot in front of the other and move on from this place but today…right now…I feel like I have lost so much ground. Each moment from now I will gain more momentum and look back on this day but now all I can think of what I have lost…I hurt.

Attached

Yesterday I set an intention to love and accept myself and those around me. I have been striving for this for months now but many times it gets away from me and I lose sight of the importance of love and acceptance in my life. Yesterday I had it at the top of my mind and it helped…to put it out there to the world. Several times I felt myself beginning to judge something or someone and I was able to bring myself out of it with out judging myself in the process and look at what…or who I was about to judge….I took in what I saw and decided to accept it for what it was and see that there was value there…even if I could not see it...I acknowledged there was still value from a perspective other than mine. I was happier for it especially when it came to Griffen. Lately his autism has been hard on me. I knew I was creating the pain I was feeling but even knowing this I could not see a way out of it. I could hear the words “love and acceptance” but I was unable to feel them
So today I wake up and contemplate my day. I decide I want to carry this idea of love and acceptance further. I have been thinking a great deal these past weeks about my place in the world. Examining where and how I can begin to replenish myself….to begin to invest back in me and build a life for myself again so I have something to give to my family and the world around me. There are aspects of my life I want to change. So I wanted to set an intention of loving and accepting my life now…all of it. There is much I want to do with myself…things I want to examine but I have had trouble with this. I have been creating my goals in a vacuum. As soon as I bring them out of isolation and lay them up against my life they get lost amid the demands on me now…achieving these goals seems far away or impossible and the frustration, sorrow, anger I feel cripples me in acting on my goals and living my life in the present. But when has life ever been so smooth…I could wait for an eternity for a peaceful undistracted moment to carry them out.
All this got me thinking. There are things I want to change in me and with the way my life is structured. I have been looking at the end result then jump back to where I am now and the path between the two is unrecognizable. I realized I have been so attached to what I want to change I have been neglecting the present and it is the present moment that will get me to wherever I am going. I created a place I wanted to be and I became so attached to it I lost perspective on everything…to the point of paralysis setting in. I can get anywhere I want to go but it means putting one foot in front of the other. And that next step is always in the present. I sat there this morning trying to articulate this into 420 characters (face book limit) and even with twice that I could not convey the idea that was rolling around in my head…which was: I want to focus on the present…invest myself fully in the right now. It is not as I fear…that if I do this I will give up my dreams and goals for the future…but instead it will give me the strength and the clarity to see where to plant that next step. Where I want to go will be part of who I am now…not separate from it…so what I do now matters and avoiding it will only create more distance from where I want to go.
So I was reading my book, Zhuan Falun, in the park today and I read this:
“…the more you pursue them, the less you get. It is because you are pursuing something. Pursuit itself is an attachment. In cultivation practice, attachments are what need to be eliminated”… Li Hongzhi. It all made sense to me in that moment. I have become attached to so much in my life…what I want out of it. I set my sights on it and grab on. It’s as if I am squeezing a bar of soap in the shower….it keeps getting away from me. The tighter I hold on the further away it moves from me. Yet I have kept pursuing these things I want trying to hold on tighter and tighter and they just slip away. My god…I have been doing this my whole life.
This is something I have learned before but I had failed to see it in recent weeks. I have thrown myself into an eddy of attachment where I just keep going round and round. Goals are important…I find when I set an intention I can do the most amazing things. But it’s the attachment to the end result that is what I want to let go of. I came back from Option and I have been trying to create a future for myself but in doing so…creating a vision I became attached to it and I lost the ability to act effectively in the present and in doing this I jeopardize what I seek. I have spent the last few days realizing I am losing it all…the present and the future I desire. Focusing on Griffen’s recovery does not have to leave me with out a life today or goals. I can keep an eye on where I want to go but I don’t have to blind myself to the present with attachment.
This is what has been getting in the way of my role in Griffen’s recovery. Yes because I felt I would have to give up so much of myself and felt that I had already. I still maintained a sense of martyrdom…forgetting the lesson I have learned that I do what I want to do. There is always a choice. I have involved myself so deeply in Griff’s recovery because that was my choice. I want to take responsibility for this. If I choose…I can see that all the energy I invest in him I also invest in myself…we grow together and both will end up where we are meant to be.

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.

I Want Out!

A week and a half has passed since my trip to Son Rise and I am still processing it. I came back different but I can’t quite see how yet. I know I feel good and that I turned a corner but I’m still living it…my trip and I have yet to gain perspective. I won’t quite know how to apply all that I have learned until I do…I’m still letting it settle. It is still like porridge in my head…still unclear but that’s a good thing. The more time I spend with it the greater the understanding I will achieve.
I am looking at Griffen and my life differently now. The worry is gone. I know it will work out. I have said this before…several times over the past 5 months. But each time I say it…I mean it….but it feels different every time. As if it becomes truer somehow. Like it sinks a little deeper into my soul and now I feel that it has travelled deep enough that it can never be extracted. It makes me feel strong and now I feel that strength in my limbs…I feel it coming out through my skin ready to spread out around me. I’m at that point between knowing I can act and acting…I have an odd sensation.
I spent the week away and it was a time to focus on myself…with no distractions and I have let that carry on into my life when I returned. It has felt good. I have denied myself so much for so long I can now see the toll it has taken on me. It served its purpose and I am happy with all that I have done but it is time to sharpen the saw. I realize I have become so depleted I have nothing to give Griff anymore. It has become an obstacle to me working the program for him. I’m not talking about playing a round of golf or going to a movie…though those things sound nice….I want to feed my soul and nurture my creative side and ignite my passion for life again. I want to be able to give these things to my son.
I read on a Son Rise Blog “have you ever known an unhappy person to be fun?” And it hit that I have not been fun because I have been unhappy. Sounds like a no brainer but I was so focused on staying positive that I lost sight of the importance of happiness. It is the foundation for life and without it what’s above falters. I see this now and I will work towards my own happiness. I can help my son and myself at the same time.
I can see the differences in him already. At Max Impact some parents were talking about imitation and how important this is on the developmental scale. Griff had not reached this. But today I was showing him how to blow a raspberry. I have tried this before to no avail. But today he sticks his tongue out a few times and after a few tries he gets it. I blew one he blew one…we went back and forth. I was stunned. We were then lying side by side and he was staring into my eyes with such intent….with such passion. He started to recite the characters from a book in order and I repeated the words as he said them. We got to a name I could not understand. I told him to try again and again. I could not understand. He got so upset…tears were streaming down his face but he kept on trying to get it. Finally I jumped up and ran and got the book…he showed me the word and I repeated it…I celebrated…he smiled and moved on.
I saw something new in those tears and frustration. I looked into his eyes and I could see the change in him. He wants out of his autistic world…he is aware of the world around him and he wants to be a part of it. My heart ached when I saw this because I could see the discomfort inside him…almost like he was trapped inside. But I am so happy to see it….after all this time.
We have made it to the next level and I find myself yet again having to abandon the routines and ways I have adopted. The constant change and revaluation is exhausting. There is no autopilot with autism…not if you want real growth. But I am thankful for that. Though I am always striving to be present Griff’s autism has allowed me to enjoy the moment more than any other time in my life. It has brought me beauty and growth to my life…more than I could have imagined. I have so much to be thankful for…so much so it is increasingly harder to find the downside. It’s not as if the struggle is not still present but it’s a matter of perspective and desire. I choose to see the positive instead of the negative (most of the time). This is finding its way into every part of who I am and I will carry this with me the rest of my life. My son’s autism has been a gift. I repeat myself I know but the strength I am achieving comes in layers and not all at once. Each time I gain something I recognize it for something new…each lesson is unique though it may be part of something greater that came before. With each experience…each revelation I see more clearly…though it may only be a degree removed from what I have experienced before it only serves to strengthen me. I welcome that.