The Road Less Traveled

IMG_1431Today I read a blog from an autism mom explaining about how sometimes she is angry at parents of typical kids. I get it. Sometimes as a special needs parent you really don’t want to hear how some parents are deciding which college their kid will go to, which car they should get them, blah blah blah. However, in the blog, and certainly how I feel, in the end I would not change my journey. For Bryan’s sake I would like things to be easier for him, but for me, the journey from where I was to where I am now and where I hope to go, well, just wouldn’t change a bit. I grew up pretty spoiled and judgmental. I took things for granted, I expected my life to be on a set path. Post graduate degree/law school, good job, meet a good guy, get married, kids, house, travel, retire, etc. Some things went on a typical path, but most did not.

The real benefit of life is the learning. The ability to draw from past experiences to move forward. However, this persons blog hit a different nerve with me. It’s not so much about the learning and the appreciating as much as it’s about the feeling. I feel soooooooooo much all the time. My emotional capacity for empathy, love, understanding has exploded. Often times this is bad, when I get hurt, I am seriously hurt. But when I am happy and joyful it is over the top, too. Bryan continues to struggle with school and life. I am forced to push myself out of my comfort zone. I can’t manage him the way I used to, I can’t figure what is going on so easily. His emotions and challenges are more complex. He is aggressive and hurtful, yet emotional and remorseful. This has happened in earlier years but I was always able to pin it down to an event. Little kids, little problems, big kids, big problems. I am trying to pace myself and not try to solve everything at once. I am trying to embrace this journey, to be able to accept the pace of things and not worry so much where things will end up. I am applying this philosophy to everything in my life, it does not matter so much where things will end up, no one has a crystal ball, no one can control the outcome, but experiencing and embracing the journey, that takes a certain amount of skill, not my best for sure. I do feel that if I can allow things to reveal themselves rather than worrying about the end result, I will grow and learn. Such a basic lesson, so obvious, yet so challenging. One step at a time.

Own it.

IMG_1415 (1)You know who you are. You people who have contacted me by all forms of media to let me know I’m not alone, I’m going to be ok and “this too shall pass.” This is not a thank you blog, this is an awareness blog; my awareness. One thing about me is that I know who I am and what I need to function. I need support and warmth, love and friendship. I needed to reach out to the collective in order to get out of my own head. I am grateful and humbled by the responses I received, but, what is also great is that it rattled my cage a bit and got me back on track. Enough of the pity party and sadness. Typically I am all action, what can I do next, how will I solve this one? I didn’t have that feeling this time so I’m glad it’s returning. I was more irritated, annoyed, frustrated. I kept thinking, oh finally we send him to a school for kids with autism and now he’s having an issue? How naive of me, duh! The sheer fact that the school is for kids with autism should have revealed to me just how hard it would be for him, how he would need to really up his game. And how amateurish of me to think just because it’s for kids with autism, that automatically means it’s right for Bryan. Every now and then a good kick in the ass is needed for this Mommy. However, I’m happy to report that I am evolving. I am thinking about how to help him day-to-day and how to help him in the event this doesn’t work out. It never is a let’s just try this or that type of thing with autism. Can’t just up the meds and think it will all be ok. Things need to be examined from multiple points of view, physically, emotionally, psychologically, etc. I also like to get perspective from different people on things. Bryan’s Dad and I have brainstormed and we try to be of one mind. Bryan needs some sort of reward based system, some changed meds, and some behavioral consequences. He also needs to understand that you don’t have to like school, but you do have to get control of your body and yourself. Sounds kind of obvious, but typically it’s the obvious stuff that really is not obvious. Autism. What’s easy is hard and what’s hard is easy. Take him for blood work and he doesn’t move, model patient. Take him to the supermarket and all hell breaks loose. Everyone is focused on the triggers, why do you think he’s upset? Why do you think he’s behaving like this? It’s logical to try to find the root cause, but logic went out the window 10 years ago. Not sure if the triggers even matter. What truly matters, in my opinion, is how to prevent escalation. How to give him the tools to get himself under control. No one can control life’s triggers, but everyone needs to learn how to cope with whatever comes their way. I mean we all have to deal with crap and we don’t always know why something upsets us, but we do learn, when something does, what is the best way to handle it. For Bryan, all of this is in slow motion and needs to be treated carefully and with unconditional love.

I do always like to get Jason’s take on things. I asked him if he had any thoughts as to why Bryan was having such a tough time adjusting. I asked him because he knows Bryan very well and because he spends the most time with Bryan. He asked if Bryan had been bullied at school. I let him know I didn’t think so because it didn’t seem like the issues were with other kids.  I asked if he thought the school might be too hard for Bryan, like maybe Bryan wasn’t high functioning enough. Jason said, “what do you mean high functioning, is that like a little less autism?” Hmm I guess so. Good news Bryan’s cognitive skills were not at issue here.

The lesson for me is patience. Not patience for Bryan per se, but patience with the tempo of life. Patience to see if the changes we are making take hold and patience to find something else if this doesn’t work out.