The light of day

As I have reached a place of acceptance with Griff’s autism the depth and breadth of my vision of the world has expanded a great deal. Not only can I see more I am able to take more information in. Avoidance and fear were taking up so much room…taking up so much of my energy…I had no idea. I thought I was protecting my self. I thought I was giving myself a chance to heal. Well perhaps I was. My first thought was that I was avoiding life and that is somehow a bad thing. I had the belief that my withdrawing from the world was a position of weakness…I was avoiding something and not holding up my end and in turn letting someone else, my son, down. But in doing it I have arrived at where I am now…a truly liberated and powerful place. Living in the bubble has allowed me to process all that I have had going on….the loss, the fear, the anger, the love…all of it. I would periodically step out in to the world to see if I was ready but would often find I was not…the onslaught of information and questions was enough to drive me back inside. Its not as if I wanted to stay exclusive it’s just that I felt, though riddled with guilt, it was serving a purpose. Now that I no longer need to do this I am quickly becoming aware that I will have to deal with a world that will not always share my vision of hope and belief in the recovery of my son. Opinions and thoughtless comments that would have once crush my fragile resolve now seem to bounce off or actually they lay suspended in front of me…where I can examine them taking what is valuable and discarding the rest. The flood of information and stimulus on autism that I once feared and avoided no longer holds the power over me it once did…I can see the value in it and now it makes me stronger. I will be a model for hope, love, and acceptance. My experience is what my boy has been going through. I need only look to myself to understand what he has experiencing. This knowledge has given me a strong sense of compassion and empathy for him…I’m in awe of him…his strength.
I have been thinking lately a lot about my exclusive behavior in relation to Griffen’s: seeking solace and calm by withdrawing inside ourselves and being exclusive. I don’t do it to the extent he has done, or experience the extreme sensitivities to stimulus but the desire to escape has always been strong in me. I think this has become so apparent to me lately because Griffen has grown so rapidly into a social being that he is shining a spot light on my desire to withdraw in the face of overstimulation. He will be playing in the other room and I will go into my office to do something …I will hear him call me “Da!” I’ll acknowledge him but if I don’t come right away he will come into the office, pry his way between me and the key board looking right into my eyes and say "Da!”, Grab my hand and pull me in to the other room. Our roles have reversed! What an opportunity this is giving me to understand not only where he is but where he came from. I have been trying to draw him out to our world…to engage us. For years we have been doing this looking for a glimmer of recognition and once getting it we tried to build on it. All that work, pain, sorrow, joy is paying off. All of a sudden Griff in engaging us more and more and it has left me a little unprepared. I have learned to spend 10 -12 hour days with my non verbal, exclusive boy. I have had hours and hours of one sided conversations. When ever I am out in the world and see someone’s pet I start talking to it like I do Griffen…like they know what I’m saying and want to respond but can’t find the words.
The more I understand my son and his autism the less I fear it…the more accepting of him I become…seeing more and more the value and strength in him. The autism is part of that…a part of him. The closer I get to that point of complete acceptance of who he is…truly living in the moment the closer we will get to recovery. The greater the acceptance the tighter the bond will become between us. I can see it now…the two of us showing each other the way out…stepping into the light together.

One path

I was dialoguing with a friend last night and I had reached an understanding about a belief I was holding on to… “That being content, happy, is a static position and contributes to a lack of ambition.” I have been working at this for sometime and now I can see it as something I can change. Holding this belief up to my past I can see that it is false…moments of my greatest growth and achievement were born from self acceptance…especially the last two months are enough to debunk it. I have never felt more content or at peace with myself…happy…and I am motivated and accomplishing more now than I have for years. I am hungry again.
I have held the belief that contentment is static my entire life…I projected this belief on to all that I did from a place of discontentment. I have judged contentment as negative though I have never truly achieved it with any kind of consistency…a defensive measure I suppose to discredit that which I fail to attain. Who does not want to be content and happy? I simply did not know the path and therefore had to tear it down as something undesirable or unproductive. I can take this model and apply it to other beliefs I hold to help me remove or replace the ones that stand in the way of my happiness.
My conversation with my friend shifted from this topic to that of my inability to effectively communicate with my wife. As we delved into this I felt the resistance on my part to go there…I literally felt my self pulling back. I did not want to dim the high I was feeling from the revelation I had just made…not realizing how connected they were. Thankfully my friend nudged me forward.
I have written about my wife and I putting our relationship on hold…how it has saved us…I truly believe that but it has taken its toll. We have not had the time to invest in developing our communication skills with each other. We were on our way to doing this in the course of our marriage but when Griffen was born the obstacles we faced as a family took more and more of our time and energy and it seemed like a luxury that we could not afford.
I have guilt about this because it interferes with our ability to help our son. Guilt because I have not figured out how to reach her on a deeper level…to bypass the B.S. and communicate without judging and fear…without misunderstanding…. I have anger towards her for not figuring it out on her end. The mind set goes if we would have gotten it together… to break through any walls that still existed then our son would have been closer to recovery.
But this just supports the reason to drop the belief I spoke of….guilt and resentment is doing what I thought contentment and happiness would bring --- inaction. Have I truly tried to reach out to my wife or have I avoided it? Clearly I have avoided it and in doing this I have allowed my lack of understanding of her to breed bitterness thus stifling our ability to communicate on a truly meaningful level. Guilt is not a motivator
How can I change the dynamic of our relationship? --- I can strive to understand how she communicates…to learn from and appreciate it. I can shift my perspective of it as flawed in someway because it does not mesh with how I communicate. I can strive to fully understand myself and how I communicate. From that point of view a greater depth of understanding can be reached. I know there is a way to connect our two approaches…to recognize the strengths in each other….from that place we could find a way to join out of mutual respect. We have become defensive when we delve into deeper subjects…we fail to see what brought us together in the first place and what keeps us together…we focus on what separates us and that is keeping us apart.
I was telling my friend that allowing oneself to be vulnerable is a strength. I said it with conviction because I believe it. Opening yourself up leads to growth and understanding and only builds strength…it’s NOT allowing yourself to be victimized. I believe this yet I realize that I have been reluctant to be vulnerable with a woman I have shared my life with for over 12 years….someone I have experienced so much growth and sorrow. Somewhere we took separate paths though I never realized it because we have always been insight of each other. I don’t want to continue that way. We can move forward…side by side and not have to give up our individual identities. The family bond we share now will only get stronger…contentment and happiness will be a constant. Yea… that sounds like a place I want to be.

Meat Broth...Yummy!

I’m reading the G.A.P.S book (Gut and Psychology Syndrome) and I reached a part where she printed a letter from a mom who recovered her son after two years on the SCD (specific carbohydrate diet) diet. It got me thinking of a boy I saw today in Starbucks who was 4 or 5. He was with his mom just waiting in line being curious as boys will…but mellow. He had his chocolate milk…his mom tells him to eat one of the samples…a raspberry scone. I watched this kid mesmerized…carefully placing his drink on the counter to be paid for…taking the scone gently and eating it with equal parts of curiosity and delight. I thought of Griffen and how he could not even tolerate being in the room let alone eating all that sugar, dairy, and wheat. I used to take him to Starbucks/Barnes and Noble and he would run up and down the isles giggling and screaming for the whole time we were there. So I’m watching this kid and I start to feel sad for what I’m missing…what my son is missing. But I read this letter from this mom tonight and I again felt real hope with the path we are on. I am starting to allow myself to envision having a moment like I saw today in Starbucks with my son more and more. I thought about Griff and I jumping in the car to go somewhere…the sun is shining ….we’re laughing and talking…talking!...we’re playing music on the stereo….that would be amazing.
I write that but I have to say we have amazing moment’s everyday. I love being around him…. he is so happy, warm, loving, curious, and strong. I feel like I am now struggling to keep up with his potential…that may never change and I guess I hope it doesn’t but I long for the day when he can escape the bubble. Son Rise and the GAPS diet will help get us there. Before I could not absorb the info on GAPS despite all the work we have done with diet…too much other stuff to deal with. It’s a challenge to be sure especially on top of Son Rise. I am looking forward to it though because the more I read the more I understand both the complexity and the simplicity of the relation between the gut and the brain. For me the struggle is the greatest when I don’t fully understand what I’m trying to accomplish…but a shift in perspective…a subtle change in a phrase or delivery and the whole world can open up and then it’s no longer a struggle but a joy. I find I am very aware of the constant shift between that which I understand and that which I struggle with…That will never change but my understanding and attitude towards the process can heighten my overall happiness in the experience. I can dig that.
I am challenging myself again and it is empowering and I have to remember to do this for my boy everyday…to remind myself of the strength it gives and in turn can give him. It has been hard to find my way in challenging him because the outcome….the goal ….the future is elusive and unclear and that may be my problem right there. It will always be unclear and uncertain. I’m still holding on to an outcome…whether it’s riding in a car together or him going to school I am still looking to a future I can not possibly know for happiness instead of consistently living in the moment. It is now that things happen…that growth occurs not in the future. I experience it when I write, when I read, when I accomplish something…it happens in the moment and is invigorating and I need to remind myself of that everyday with him….our interactions will affect change now and from that we continually build and the future will reveal itself.

Jung

The past 6 years have been extremely hard. The divorce rate for parents of autistic kids is like 85 -90%. I can see why. Luckily my wife and I made it through the worst of it without ever fearing divorce. Our relationship took a beating and right now we co-exist just so we can accomplish what we need to. Our relationship and our personal goals are on hiatus for now but I look forward to the day we can function more typically as a couple and family. That may sound like it sucks but doing that saved us…we abandoned the perspective of the “unlived life” and lived in the moment…without really realizing we were doing just that…wow…we have come such a long way….very encouraging! I love my son and I have never regretted or wished for him to be anything else than who he is. Even at our lowest when the autism loomed so large and our path was unclear he still shined through …the eyes...yes the eyes are the window to the soul. It is that which kept me going. I would not change any of it…I have arrived at a place and I am on a path that makes me truly happy. I think if he was a neuro-typical kid I would not have made the strides I have. Maybe that’s not true but I have discovered something about myself and I am thankful for that and the journey that brought me to that place. I don’t need to imagine the “what if” my life took a different path because I am where I want to be.
When he was born I discovered that the meaning to MY life was becoming a parent. I don’t think it matters who our children are or what challenges they face…parenting can lift you to the highest heights and completely crush you in the next moment…nobody escapes that. I think...what I am learning now is it is all in how we choose to look at our lives. The beliefs we hold and whether we choose to be happy or not…no matter the circumstances. I am choosing to be happy and in the moment because I never know what life will bring my way. That’s my goal and if I can accomplish that then that’s all I could ever want. Living with autism…it’s not a terrible place to be and in healing my son I have begun to heal myself in so many ways and that makes me love him all the more...if that’s possible. Yes I think it is…now that I think of it…but not more…. I think I can add perspective and depth to my love for someone or something….love is limitless.

Shining through

For years I found it hard to hear other people talk about their neuro-typical kids. It would only make me think what I did not have with my son and so I began shutting out the world so to speak. As Griff has moved through the healing process it became easier to allow others in. I also had a “fear” of hearing about spectrum kids who recovered from autism or who just improved. My fear was based on my not always being able to see my son healing…or just plain guilt for thinking I was not doing enough.
Many of these feelings have been dissipating, more so recently but today they came rushing back when I read an e-mail from a dad who was sharing some advances his boy has made. His motive was pure…too celebrate, share, and encourage. But I started to read it this morning and could not get through it. Griff has been experiencing die-off or a flair up of yeast not sure which. Some of his “symptoms” have come back fairly strongly and when this happens it’s always a bit of a shock. I have been sharing our success and have been meaning, but failed, to put a disclaimer out there to those who may be going through what I am now. We all go through cycles….great leaps forward then it’s yanked a way for reasons unknown. It’s during these times when Griff is literally bouncing off the walls screaming that it is hard to hear of others success. Today after my initial reaction to Griff I could feel myself slipping back into the pattern of mourning with the return of some behaviors…the dread washing over me of what was to come. But then I remembered all that I have learned recently and made a conscience effort to look at it differently. My son seemed happy and was taking care of himself. I did not have to worry about him in that moment or fear for his future. I told myself it’s a temporary setback and soon he will get back on track. That calmed me and then I was able to delight in his gains that still shine through his behaviors that help him cope. Before I only saw the autism when he was having a rough time but today I could see more of my son and I focused on that. The gains he’s made don’t get erased he just doesn’t have the energy to use them at that particular moment. It’s not a setback after all…he’s simply using his energy to heal…It’s a time of growth…. It just takes a little presence of mind to see it that way. There are no setbacks...no steps back....eveything that happens contributes to who we are.
I rescued myself from that downward emotional spiral I used to let myself embrace fully. Pulling myself back from the edge allowed me to smile and laugh with my boy today so when he called me from the hallway “DA!” I walked into the hallway where he stood by the linen closet door “Open the door” he says. I happily comply celebrating his request …I look in the closet and then at him and ask him what he wants “Blanket” he says looking at me. I hand it to him and all smiles he runs down the hall with it. That made my day and I was able to enjoy it because I did not allow myself to fall into that old routine of self pity.
Staying connected is paramount…learning and sharing with others both the highs and the lows. It empowers me and reminds me of the inner strength I possess. Cutting myself off and falling inward does not get me any further down the path. I know I was only trying to let myself heal or cope when I did this and that’s ok…I was doing the best I could. But now I am discovering, on a daily basis, that I can meet it all…and I mean all of it….with a smile….with love and acceptance. It’s what I want my son to do. To reach a point where he does not have to turn inward but can greet the day…every day…head on and learn to cope, navigate, and succeed with ease. I can model this for him….be a shining example…I can be a force of nature in his life.

The Rift

I came back from Son Rise a changed man and really engaged with my son and the direction we were heading toward recovery. I was writing everyday…reading and I felt connected to it all. But life has been hammering away at me since I got back and I allowed it to pull me away from my focus. Just the day to day…fixing up the house to get our program going…work has been taking up most of my free time. Each day that has passed I have found it harder and harder to hold on to the attitude I brought back with me from happy camp. And that has been gnawing at me because I know no matter what life throws my way I never have to lose it…it’s a choice. But I was less engaged and being pulled in many directions. I have been letting it overwhelm me and Griff’s recovery was once again starting to feel like a huge insurmountable task instead of a journey to be enjoyed.
But I had a moment today that allowed me to step back think about where I was heading. Griff has been having a hard time these past two weeks…generally tweaky and having a hard time maintaining. He has made a lot of progress lately so I know he is diverting his energy away from coping with the outside world in order to process the growth he is experiencing. Though I can look at him and his autism now with love, acceptance, and a depth of understanding that was lacking before it is still hard sometimes to see him struggling to cope with the light coming in through the windows or whatever seemingly random stimulus that is rocking his world. Watching your child having an equivalent of a bad acid trip can suck the life out of you and make you feel utterly useless. Today we were in the bathroom and he was looking in the mirror. I was sitting there feeling generally overwhelmed…looking at the pealing paint in my bathroom because our exhaust fan has never really worked right and feeling a little down on myself. Griff is standing there contorting his body…screaming and grunting into his hand then takes the water pick off the wall and gives it a yank and the whole thing crashes into the sink sending stuff flying all over. The rift that I had created between me and my goals seemed so wide at that moment…I picked him up and plopped him in the hall way and shut the bathroom door.He was crying and I felt like an asshole. It took me a few moments of just breathing deeply to compose myself. I picked him up and put him on our bed and we played our game where I blow on his stomach (we call it “the noise”). He loves it and in less than a minute he was laughing and looking in my eyes with a big smile saying “I WANT THE NOISE!” It was one of those simple moments where I realized that I can decide to be focused again. The rift that had seemed so large before disappeared and I made a decision to reprioritize my life and have faith in my ability to make the adjustments I need to keep our life going without sacrificing the time I need to dedicate to my son. Griff reminded me that happiness is a choice and our life is in the moment and nowhere else. My son is my teacher.
It got me thinking of the importance of staying connected to Son Rise and our program. It really has to become our focus. It can seem overwhelming because it is literally like a full time job but once we get it rolling it won’t feel that way…it will become our life. I will focus on the moment…being present with my family and keeping close what is truly important. The other stuff will fall into place. Not that what I need will some how magically be provided but I will be in a secure and centered place that will enable me to handle what comes my way and have the clarity to see the path I need to take. For me that’s all there is…to be in that place…in the moment….Happy.

I can stop

The good days far out number the challenging days now; we lose track of the progress we make because we are so involved in the day to day…it usually takes a rough patch to remind us how far we have come. For the past 3 or 4 years I have felt tired, overwhelmed, and exhausted. Those three words were forever, it seemed, at the forefront of my mind…its how I began to see myself…as if that was my natural state of being. Thankfully that has faded increasingly over the past 6 months…even quicker recently.
This past weekend Griff had a little rough patch and I felt that tiredness creeping back into my life. Although I could always identify the source of my weariness (my son’s autism) it never once brought me comfort. Yes I would think when he’s better I won’t feel this way but that day never felt close and therefore gave me no comfort; my happiness always contingent on some external event and that never felt secure. I was talking with a friend last night and she helped me realize something. I have been learning to accept my son for who he is right now and I have felt the weight lifted from my shoulders. As I told my friend I felt tired recently I realized that it was not my son’s actions, his rough patch, his autism that was making me feel tired but it was the judgments I was making about him…his autism. I have been learning about the beliefs we hold and the judgments we make and how they directly impact our happiness because it is through them we see ourselves and the world. We adopt these beliefs of our own choosing so we can also let them go and replace them with beliefs and judgments that contribute to our happiness. I realized in a moment that my judging Griff’s “behavior” was the cause of my unhappiness…my exhaustion… not the behavior itself. All I have to do is stop judging the behavior or symptoms of his autism as bad…and not only that but truly see them as a good thing because everything he does has a reason…to help him cope in a world that he has difficulty in.
I sat down at my desk last night and I wrote “I can stop judging Griffen”, not “I should” or “I will”, but I can. It’s a choice I can make not something I have to do. It’s my choice how I see the world, how I see my son. I feel like I have been swimming against the current most of my life thinking this what I was supposed to do to hold on to my identity. Like I felt I had to make a mark on everything that past me. . I’m seeing with my son I can experience so much more…learn and grow more when I relax. I am finding not only am I not surrendering who I am, as I thought I would, but I am discovering things about myself that I never knew were there. I can’t help but think that if I can create that environment for myself and my son then he will experience the same growth as well. Instead of fighting just to get through the day he will be free to heal and discover a way into our world…away to relate to his surroundings that will bring him happiness. I don’t know if I would have become conscious of all this if it was not for his autism. It’s why I can look at this as a blessing.
I feel like I am looking at the same idea over and over again but each time my perspective has shifted and something else is revealed that contributes just that much more strength to this new way of looking at the world. Those words “I can stop judging” are so obvious but it never occurred to me I could alter my judgments and beliefs to make me happy instead of sad. I never knew I had the power to do that…. My son reveals something new everyday. His progress slow but constant and he has always been a source of strength for me. It has given me hope for his future and mine.