Bridges, Not Gumdrops
Hi.
My name is Carrie.
I live in New Hampshire.
I have five kids, and my second son is diagnosed with autism.
His name is Jack. He is fifteen. He towers way above me and I am not exactly small.
Jack’s autism looks like this: he is verbal, he has tremendous anxiety, he loves pancakes, and he sighs before he enters every room like he just lost a puppy.
When it comes to autism, I live in a constant state of conflict.
On one hand, he is perfect just the way he is.
On the other hand, I should probably kind of change the way he is.
I should work on his conversation skills and how he swears a hundred times a day and he should probably eat less carbs but I don’t know how to do that.
At the very least, I should work on the sighing, because it’s driving me crazy.
He wants to learn how to drive. See, in New Hampshire you can start driving with an adult in the car when you are fifteen-and-a-half.
Jack was born in May. He is officially fifteen-and-a-half.
Can he drive?
No.
Maybe.
I don’t know.
I mean, what if there is a detour and he freaks out trying to find his way home?
What if he’s at a four-way stop sign and everyone kind of stops all at once and then the guy in the big SUV does that little chin lift we all know but Jack doesn’t know so we’ll just sit there forever, or even worse, dart out into the intersection?
I worry.
I hope.
I have a lot of fear.
Autism took hold of my heart and it divided up into a bunch of little pieces.
Worry, hope, fear.
Every night before bed, Jack checks my laptop and my phone and if the battery is low, he plugs them into the charger.
Sweet, right?
It’s sweet.
So sweet.
Why does it make my stomach squeeze just the teeniest bit?
Maybe because his older brother Joey sat at the dinner table the other night and asked if OSHA was a federally funded organization.
Jack organized—and reorganized—cans of Cinnamon coke and Cranberry Winter Sprite for Thanksgiving.
Joey drove to the store and picked up all the things I forgot—sour cream, vanilla extract, cucumbers.
They are one year apart.
They are both my boys.
Yet, Jack has come so far. People say it all the time. They say, Carrie, he has come so far. He’s doing so well.
And he is. He is doing well. He loves to play Uno after dinner and his medication has helped with the stimming and every morning before school he empties the dishwasher.
This is good, right? This is good.
I keep one eyeball on the good and my other eyeball on the clock and both eyes trained to the hard and the progress and the standstill.
Lately, it seems we are at a standstill.
Why does it have to be like this?
Why can’t I just relax?
I can’t. That’s why.
Sometimes, I feel uncertain about the idea of kindness.
I mean, I’m always reading articles or memes or posts about this topic.
Sprinkle kindness like confetti.
It costs nothing to be kind.
If you can be anything, be kind.
These days, we don’t care if our children are athletic or musical or brilliant, we just want them to be kind. We want them to sit with the lonely kid at lunch and be kind kind kind and bestow this kindness like benevolent kings and queens presiding over chicken patties on soggy rolls.
Jack sits alone at lunch. And he would probably tear the hair right out of his own head if you jammed all up in his space in the name of kindness.
See, he wants to be alone. In fact, by that time of the day, he needs a little quiet.
Do you know what loneliness looks like?
I don’t.
I imagine it is the middle school girl with thick mascara and tight jeans and a bra strap peeking out of her sweater.
Or the football star whose father just left.
Sometimes I’m lonely. I am lonely trying to raise this boy and keep the rest of my life together and maybe stay married and also return my library books on time.
I don’t know what I am trying to say here, except it makes me nuts when people assume their kids will be the ones to dole out kindness like so many sugary gumdrops.
I never thought I’d have a kid who would sit alone day after day.
I never thought I’d have a son who may not drive a car, or live alone, or get a diploma.
That’s the thing in life. You never imagine you’ll be the one sitting on the other side of the cafeteria, until one day you wake up, and here you are.
Here I am.
My son is on the other side.
I am on the other side.
Together, we sit and watch the parade of accomplishments and trophies and diplomas march past us.
That light has never shined upon him.
I don’t know if he cares. I can’t tell.
I don’t care. Not at all. I mean, I used to care but now I don’t except a little bit sometimes.
And that about sums up my life with autism.
I guess I care when I think about the gumdrops and the soggy rolls.
It will not break us. I want you to know this.
Even on the days when the parade larger than life and I feel like I am losing hope and I don’t know who he is and the long sighs might push me to the brink, autism will not break us.
Tell me. Tell me how to be in this world with this boy and not hurt.
I hurt.
I hurt for him.
I hurt for me.
I believe in him.
I believe in us.
Even in the darkness, I believe in him.
Kindness is not a band-aid.
It is not a personality trait.
It is not something you give. It is something you have.
It is not a blanket you wrap yourself in to feel warm and cuddly.
It is when you give your blanket away even though you might be a little cold without it.
Kindness is quiet, that’s what I am trying to say. It is without personal gain, or confetti, or applause.
At its very core, I think kindness is a connection. It is a bridge of sorts, built from stories and tears and hope and understanding.
Hey buddy, is it okay if I sit with you? Or would you rather be alone?
December 2, 2019 @ 6:08 pm
I know all kids are different, but I wanted to let you know that I too have a son with autism. And he does drive now. He took it a little slower than his brother–got his permit at age 17 and ran through two rounds of permit before passing the written test. And it was agonizing riding along with him in the car when he was learning to drive. However, he is so rule oriented, that he probably follows the traffic laws better than any of the rest of us in the house. He finally passed the driving part at age 20–and got his license. And his friend, who also has autism, also got his license when he was close to 18. So it can happen.
I found, that between the time I started contemplating guardianship just before my son turned 18–and 9-10 months later when I was ready to petition the court, that he had matured enough that I didn’t do it. I didn’t think they would grant it. He is not independent by any stretch, now at age 21, but he is taking steps, and the steps for him are momentous. We are working with him on skills need to live independently, which will take a while (and we may never get there). But he does work for a shipping company, is getting himself up and out of bed in the wee hours of the morning–and driving himself to and from his job. I did not think that would happen.
So–Jack is likely different, but I wanted to let you know that there is hope for his path, that growth, while slower and rockier, does come. And that it may be worth getting the permit–and letting him try.
December 2, 2019 @ 7:19 pm
“Hey, Buddy, is it all right if I sit with you ? Or would you rather be alone? So simple so perfect.
December 4, 2019 @ 4:59 pm
I have “Asperger’s-autism”. And after reading your blog for sometime now, I have to say that Jack seems to be doing fine. I find the world-today, completely exasperating. People seem not to want to follow rules. They do not take ownership of there actions. The problem for me, and Jack—is that we expect the world to run by simple, understandable rules. I have been thru ‘psychotherapy’, and the thing that changed my life was when my psychotherapist said, “It is your parents fault”. He meant that they had a ‘dysfunctional relationship’. But actually the problem was they raised me to believe people were honest, and competent. Nowadays, a lot of them are not. President Trump is neither of those things. So for Jack, and his siblings—you must teach them that reality. Autism makes one more ‘sensitive to stimuli, etc’, just like a the proverbial ‘canary in the coal mine’. My sister, who is the social/intellectual opposite of ‘autistic’—initially does not heed my warnings, but eventually she sees that I am correct in my analysis. I am way more sensitive to things deteriorating than she is. This is because I do not respond to emotions. It is one of the ‘gifts’ of autism. I just see things as a ‘business deal’. If someone does not honor their agreement, I cannot be ‘manipulated’ to give them a second-chance. It is not such a bad-way to live. :-)!