I have been thinking a lot lately about the direction of this blog. At the beginning of this writing journey, Jasan was younger and honestly, life was easier. Posts were flowing out of me. I had more time that was non-scheduled; we spent more time together and photographing him was a daily occurrence. For those of you that follow us, it has been obvious that I don’t write as much. Why?
Well, I just don’t have time like I used to. Life has changed. We spend more time at school and work. And here is where the “truths” part comes in…
Behavior has become so difficult that it is hard to see the positive sometimes.
When I started Following Jasan, the goal was to help change the perspective on parenting kids with special needs. I still believe this whole-heartedly, but here I am, finding it hard to do this myself. How am I supposed to write when I am drowning over here?
In my last post, I mentioned finding my rose-colored glasses again, and throwing those babies back on. I did, but damn, they fall off a lot. That is the truth.
I have to write this because I know I am not the only one. The most powerful moments for me lately are when I am able to connect with someone who GETS IT. I realized how much I need this, otherwise I feel EXTREMELY ALONE. So, I need to write about the hard times. I need to do this.
I am going to do my best to write more, photograph when I can (because I still feel that is a huge part of the way I tell my story) and hopefully help another parent here and there when they read and are able to exhale for a moment because they too can feel understood.
I still have the highest hopes for my son. He is extremely brilliant. At school, they tell me so. But, he is unreachable. He can’t focus. The times that he does are few and far between. Destructive actions are becoming a daily occurrence. Sometimes I just don’t know what to do anymore. He is getting bigger and stronger. Something has got to change.
He has so much potential. I KNOW he does. At home, when it is not a completely structured environment, he plays in his way. He is happy. I watch him and I know. He is able to block out the world and stay in his happy place. (Geez, I wish I could do that as easily as he can!)
But what happens when I need to go run an errand and he doesn’t want to? What if we are on a time schedule and I need to get to a doctor’s appointment but he WILL NOT get into the car? What if we go into a store but he won’t walk with me because he can’t stop focusing on the automatic doors? What if I just simply say “NO” to anything?
HELL. BREAKS. LOSE.
This is where I feel I have had patience for so many years, but now that he is older, stronger and has a will fiercer than ever, I have LOST MINE. I hate that feeling. It is a completely powerless and hopeless place. When I am running on fumes (because I don’t get the normal “me” time to recharge) it feels impossible to be the mom I want to be. My rose-colored glasses fall into the abyss. Somehow I am going to have to find the strength from somewhere to stand my ground. I feel at this point if I don’t, I am helping create a monster who will run anyone and everyone over.
I struggle with this. A lot. I know he is different from the norm. I want him to be himself and live freely to be exactly who he is, but society doesn’t. I know he has come here to be a teacher to me and others. He has changed me forever because of his autistic ways and I love him beyond any amount of words could tell you. But, when life and the “way the world works” comes into play, he doesn’t want to go with the flow. Here is the double-edged sword: I don’t want to live my life being a tyrant mother forcing him to do things, but I also don’t want to have to walk on eggshells around my own son when he is on edge so that he won’t hurt me or be destructive. How do we both be happy? How do we both flow and live in this society being who we both individually want to be? Do I have to feel like I constantly lose myself in this process? I have done that so many times because I just sacrifice for my child. I would give my life for him without question. I believe there has to be a way that we can live in harmony and be who we both want to be.
I have lots of beautiful and tender moments with him. I wake up and feel so blessed that he is with me. I love who he is. The behavior that I don’t love IS NOT WHO HE REALLY IS. The behavior issues come from the inability to communicate effectively. The sensory processing issues that deter him from being able to regulate his body. It is the will inside of him to NOT be CHANGED. Growing up, becoming more aware of his surroundings and taking in more information that he can’t always process all at once. All of these things are so huge. Sometimes I wish I could trade places with him so I could know what he is going through…
Through all of this, I am trying so very hard to remember my mantra:
EVERYTHING IS ALWAYS WORKING OUT FOR ME.
I love Jasan with such a fierceness that when times are painful, they feel unbearable. It is a love beyond any comparison. I hang on to this so tightly. I know that positivity always wins. We will get through this somehow. I am determined to thrive and I know he is too.
One of my favorite people, who I know GETS IT, took this photo of Jasan. It has to be one of my all time favorite images. It is a moment in time that completely has captured his HAPPY AMAZINGNESS.
This, my friends, is my JASAN.
Photo taken by: Janet Kay
I declare to the world that I LOVE HIM!!!!!! There is NOTHING that I wouldn’t do to help guide his life to be a complete success.