Today I volunteered at Payton’s school. It’s teacher appreciation week, so moms are needed to take the kids to the cafeteria so teachers can have a duty-free lunch. Since I’m one of the few moms who work part-time instead of full-time, I got the call.
I’ve been told by his teacher teacher of how he acts during lunch. How he doesn’t interact with the other kids during this usual social highlight of a school day. How he seems to withdraw into his own world and doesn’t really carry on conversations with the kids or act like he even cares to be there. I was aware that was part of his odd behaviors.
But hearing it and seeing it are two different things…
Today I saw for myself that in a cafeteria full of peers Payton withdraws to another place and seems to be all alone in a room full of people. After 15 minutes in there and 3 more classes make their way in, the din of voices rises and I see him pull at his bangs and rub his forehead — a sign I know means the noise of it all is beginning to hurt his head. As I watch from the other table, as I’m peeling an orange and cleaning up spilled milk, I know he is struggling to handle it all and keep it together.
Right then and there I wanted to cry because I see how the simple act of eating lunch at school is different for him. That it isn’t a happy, social event where you cut up a bit and play with your friend. It’s not like it was for me and the vast majority of other kids. Instead it means he withdraws in order to handle the physical pain in his ears and head, and that he has probably had to do this every day, 5 days a week, for the last 9 months.
My heart breaks for my odd boy out.
You’d think I would get use to this — being mom to the odd boy out. It’s always been that way, and I’ve been that mom for 6.5 years now. But I’m not use to it. I talk a good talk by voicing the positives of his unique/odd/whatever you want to call it behavior. But walking the walk is much, much harder.
I feel like I’m in the midst of chaos right now and I don’t know what to think. I’m leaving the mental safety of blaming myself; a place where his behavior was my fault, but it was safe because I could change what I did, so it’s really me and not him.
Now that road is behind me and I’m on a dirt road where the doctor cannot tell me whether my child is autistic or highly gifted. Yesterday I’m told that their neurologist would likely diagnosis him as autistic but….BUT.
That is an official, medical BUT.
Payton seems to be falling into a gray area of uncertainty. It could be that instead of autistic, he is highly gifted and the social/emotional problems we see are actually a common thing in highly gifted people.
It seems that Payton continues his pattern of leaving everyone scratching their head in wonder by not fitting into any one category. His doctor tells us that we’re in a unique, and not very easy position of having to decide which way we should proceed….down the road of probable autistic diagnosis or the road of possible highly-gifted mind.
Suddenly, the weight of parenthood is fully upon my shoulders like it has never been before. On the outside I’m sure it seems like an easy answer. What parent wants their child to be autistic? And what parent wouldn’t want their child to have a gifted mind? But the weight of the responsibility is there despite outside appearance.
Whichever path we choose, Payton has no choice but to follow us because he is a child and we have to decide this for him.
What if we decide wrong? What if we decide to take the gifted route and he begins to slide instead of thrive because he isn’t getting any type of therapy or accommodations at school? What about the years of early intervention we’ve already missed and could continue to miss in these early education years? What if his odd behaviors are not accepted by others but a diagnosis would bring acceptance and understanding to him? How can we ignore the obvious characteristics of autism that fit our son? Is this denial? Or faith?
Then there is the other path.
What if we decide to have him diagnosed and his world is now shaped by a developmental disability and all along his life could have been shaped as gifted instead? What if he is gifted and we can shape the way others perceive him in a positive way instead? What if we can’t shape people’s perceptions? What would happen to his self-esteem, his belief in himself to know he has this disorder? Especially if he were to find out we could have went a different way.
The decision can’t be made lightly. I have no way of knowing the long-term effects of either path. And I have no way of knowing whether I will get this right and be the person it is going to take raise this child well.
We’re at a crossroad where I am overwhelmed with the responsibility of how I will shape this other life. And not just any other life but the life of a person who I love beyond all things, and who innately trusts me with his life. I cannot afford to make a mistake.
As I stood in that cafeteria, I found myself wishing he were average. I wished he were less than he is and that is wrong. It isn’t fair to Payton.
What I really want is what all moms want….for their child to be happy and accepted for who they are. But I’m defining happiness and acceptance from my very average and typical mind and what it means to me. What does it for mean for him?
I’m left wishing I could get inside his mind and just understand. To know that despite how my very average mind sees it, that he is happy and feels accepted by those around him. That he doesn’t feel like the odd boy out.
So not only am I at this crossroad of decision, I am also forced to redefine what happiness, acceptance, friendship, and normal means. I obviously can’t continue to judge it by societal standards regardless of which road we take.
I’ve never felt less grounded in my life. I feel like I’ve been taken from my regular place of existence and shoved into a world I don’t know and I don’t even know which way to go for answers.
I wonder if that is how Payton feels a lot of the time too.
It seems as if my life as mom of the odd boy out will always be a dirt road to somewhere unchartered and new.