Saturday, May 18, 2013

When You Are Reminded That Life is Not Fair

I am not sure when I had decided that I wasn't allowed to be sad or have moments of angst when it came to the boys' autism. I think that years ago I simply decided that to do what needed to be done I had to go outside myself and deal with reality without being angry, sad or quite frankly jealous. I remember when I felt this huge weight lift off my shoulders when I no longer blamed God, hashem, yahweh, an almighty (pick your omnipresent wraith), but just came to realize that sometimes we are handed a deck of cards that we simply did not expect and that grownups deal with life as it hits you not as you fantasized about it.

So I got better. I didn't really sit and think about what could have been or what should have been, simply because that was not our life and it would not have helped either boy one iota. But this week those feelings of sadness came back. I think these feelings reemerge every time there is some kind of milestone in our lives that involve the boys. I am reminded that they do live outside the typical path that their peers follow.

It's not that their path is not a good one for the boys. It is simply their path as opposed to someone else's. But when they still are not comfortable participating in life's milestones I feel a loss for them. CM1 doesn't care to go to his graduation this weekend. He doesn't want to sit and listen to speeches, while people pontificate at him about his future. Honestly not going to the graduation itself doesn't bother me. He feels he has more school to go so it doesn't pay to go to celebrate. He's not really done.

Our compromise was that he had to buy a cap and gown and let me take pictures which he did. See post here.

But the sadness overcame me last night. Apparently CM1 was given some kind of honor or award (which one we don't know right now) at a special ceremony for graduating seniors. They keep it a secret at the boys' college until the awards are actually handed out, but we were given a kind-of-heads-up that he should be there. He in true fashion didn't want to go. It's because he doesn't understand how special these things are and concepts like "academic honors" simply do not matter to him. The sadness came when I saw the tweet from the college congratulating all those who received honors.

He doesn't understand no matter how many times we tell him that his is a great accomplishment, college in and of itself is something most people do not do or even aspire to. He doesn't see anything he has done over the past years as something special, but something necessary in order for him to accomplish what he truly wants out of life. He sees school as an initiation rite to gain entrance to the exclusive club of adulthood.

He also doesn't like accolades. It embarrasses him. He doesn't know how to process the emotions that come along with being held up as a positive example. He doesn't know how to process the emotions that come with being positively acknowledged. Oh he enjoys getting As, but its a private and personal thing. As long as it isn't held up to the world he is fine.

I used to think it was the overall sensory issue of things like graduation or ceremonies that kept CM1 away. But as I look back over the years its really about him feeling overwhelmed emotionally and not knowing how to deal with what wells up inside him. He couldn't handle his bar mitzvah party either. Everyone was in the greatroom having a fun time while the DJ partied away. Meanwhile, CM1 was in another room with hubby sitting by themselves, because he was too overwhelmed.

So I feel sad. Sad because my son, who has accomplished so much (so much that he isn't even aware of how unique he is in the realm of the world) can't enjoy his accomplishments or the public acknowledgement that comes with a job well done. My sadness reminds me of how I felt when CM1 was in the self-contained kindergarten class and as I went to visit him one day in school, I passed a typical kindergarten where the children were in circle, singing, clapping and laughing. Something that CM1 couldn't do at the time. I remember it took all my effort to not cry.

Don't also tell me that others have it worse. I'm not ignorant. But because there is tragedy in the world doesn't take away from the fact that my child can't enjoy simple milestones in his life. I remember, one day I was lamenting about CM1 not being able to drive to a neighbor, whose sons are the all American boys. She told me there are worse things than 17-year-olds who can't drive because of their epilepsy...shmuck really had no idea who she was talking to. Meanwhile, incidents like this is why I never talk to the general public about anything.

I wish CM1 would allow himself to be proud of his accomplishments. And yes he should understand that it is OK if the world wants to congratulate him on a job well done. And yes there should be some way for him to assimilate the emotions that come with public praise. Unfortunately so far we haven't found a way to help him with that issue. We keep working towards that goal.

I joke that he will be the first person in history to email the Nobel Prize Committee that he is too busy to come get his award and that they should just send him the certificate. However he will tell them, that he would be willing to fax in his acceptance speech for someone else to read. I say he lacks the venal nature of most human beings (well actually he does). I laugh and shrug it off and move on to the next issue at hand.

In the meantime I feel sad this morning on the day of his graduation. Not for myself but because I know what he is missing. I know how life is different for him and how hard things still are for him. I guess at some point I had this unrealistic vision that  life would get easier for him as he got older. That meeting life's challenges would come easier for him. On days like today I am reminded that for CM1, life will always be a bit of a struggle that others do not have to deal with.

Yes I know he is up to the task. But as his mother I know too it's just not fair.