Winter has returned to California. On Monday, the dark clouds, the wind, and the rain that inevitably follows came back. It’s always strange to see the contrast of the dark, wintery sky against the blossoming of the cherry trees as I look for the first sign of spring’s return. The calm before and between the storms.
Looking at the odd combination of harsh winter and rebirth of spring, I realize how winter is not ready to release its hold on us yet. It is far too early. The wind screeches wild and strong, echoing through the trees. It seems to be winter’s voice, speaking to me loud and clear. The rain pelts down and sideways, mixed with hail and occasionally, lightening strikes.
I often feel these early years, the time when all the therapies are consuming our every breath, are the winter of my understanding of autism’s grasp on my son. I wonder daily how much progress he will make, how independent he will become as he grows older. I worry about the emotional storms which rain down on us with such fury. I wonder if autism will hold my son tighter, relax its grasp or maybe let go of him someday.
It’s a darkness that I cannot really describe to you if you do not walk in my shoes. As parents of children with this invisible storm living in their children, we do everything we can to learn, to understand, to recognize the reasons for the storms in our children. The affects of autism can be felt, its aftermath noted. But, like the wind, autism cannot be seen. It is invisible.
There is an ASD parent, who comes to mind, when I think of the invisibility of the diagnosis. I met this parent through a local autism group. She was the group’s librarian and was providing some cards for my son to use in in conjunction with applied behavioral analysis. (The picture cards run about $200 and are provided as a service of the group to the therapists of ASD children without charge).
When I met this mom, she told me she has two sons with ASD, both considerably older than mine. She shared that one of her sons “lost the diagnosis” when he was 11 years old. She said that he was no longer considered autistic. I immediately took this as a sign of hope. Was it possible that the invisible condition disappeared? That it was cured?
I saw her only for a few moments when I picked up those cards. But I think of her often. I wonder how she has coped. I wonder how it came to be that one of her sons “lost the diagnosis”. What does that mean? Does it mean that someone found him “cured”? Does it mean that he is so high functioning as to blend with neurotypicals? Or does it mean that he was simply forced through school and/or assessments and designated no longer autistic because it would cost to much to fund his continued care?
There is no cure of which I am aware for autism. I do know that with early intensive behavioral therapy, children can progress to a point where they are so high functioning that they are considered indistinguishable from their peers. They blend. In a way, they become a different kind of invisible.
I want my son to attain this indistinguishability from his peers. I want this so that he can avoid the bullying that comes from being “different”, so he can have the opportunities that all the other children have, so he can live independently and succeed. I want his peers to think of him as fun, happy, someone with whom they want to cultivate a friendship. Someone who is recognized for who he is, not how he is different. This is a good kind of invisible.
But I do not want my son to be the other kind of invisible. The kind of invisible that comes from isolation, from bullying and from intolerance. The kind of invisible that lets a teacher ignore and push him through a system that does not cause him to learn.
I will not allow him to be ignored. I will not allow him to be denied every available tool to enable him to succeed independently in his grown up life. I will not let anyone force him to blend into a wall to save a buck. This is a bad kind of invisible.
I wonder though, through these cold winter nights, how I will implement all these lofty poetic goals I have for my son when he is older. How will I force him to be the good invisible and prevent the bad. It will have to be by devoting time to him. It’s as simple as that. Time to listen, to learn, to share and to intervene. I will force my way into parent-teacher meetings on a regular basis. I will ask around.
Maybe I won’t be liked. That’s okay. I’m a mom. I gave up on being liked by everyone quite a while ago. If raising hell is the only way I can get my son what he needs, that is what will be done. And I must never be invisible because my presence must be felt and heard and seen. There will be no retreats no matter the season.
But I do love the spring. The sun warms your face. The song of birds, absent in the harshness of winter days, returns. Spring is so full of freshness, birth, regeneration. It’s all about the new, the delicate beginning of so much.
In the spring, the winds become a breeze. And soon after that, the breeze disappears. And one day, when we are not looking at all, the nights are still and warm and full of stars. And there is peace.
I hope one day, when I’m not looking, I glance back and see that, by my being visible all that time, my son has achieved that good kind of invisibility. Then I will, truly know, spring has arrived. And, I too will relax and fade into a nice breeze.