A Vulnerable Child
When my son Jack was about four years old, I lost him in the mall. I was pulling a sweater on over my clothes to see if it would fit, and in the three seconds it took for me to poke my head through the fabric, he was gone.
One minute, he was there, standing right in front of me with his overalls and his sticky hands from the lollipop he’d gotten when we’d stopped at the bank, and the next minute he was nowhere to be found.
When Jack was four, he couldn’t say his own name, but he could start a car.
He didn’t know his phone number, or his address, but he knew how to walk out of the doors and into the wide, open parking lot.
He had autism.
He was gone for about eight minutes. When I say this was the most terrifying eight minutes of my life, I am lying, because the word terrifying doesn’t begin to describe it. My heart was in my ears and I was sweating and I felt like my head might spin off of my shoulders.
I knew he could be anywhere. I knew firsthand the way a silent child could slip under the radar—through the door, and into the sunset. I knew, because I’d seen him do it.
Now Jack is thirteen. He still has autism. This makes him very is vulnerable in ways most people can’t imagine.
For one thing, he can’t talk when he’s under stress. He literally cannot form the words in his brain and make them travel to his mouth and out into the air. He cannot ask for help.
He is a boy who won’t make it out of a burning building unless someone is right there with him. He will not shout that the water is too deep and he can’t touch the bottom, or that a strange person tried to touch him in places no one should touch him.
I worry all the time.
I worry if there’s ever a fire in the grocery store and he’s standing at the Redbox–he stands at the Redbox every single time we go to the grocery store, and even if I’ve warned him we aren’t renting a movie this time, he still likes to push the buttons and search through the new releases—but if he’s standing there while I wait to check out and there’s a fire and I can see him and I can’t get to him, I know he will never get out on his own.
He’ll put his hands over his ears and he will stand completely still, like he’s made of stone. He might scream.
I’m scared one day he’s going to get run over in a parking lot. I have to hold his hand—can you even imagine? A boy taller than me and I have to hold his hand when we walk into a store?
The thing is, he has no concept of cars coming and going. He’s lost to his own thoughts about strawberry frosting and the latest Disney movie and who even knows what else. He assumes someone will always see him.
He’s vulnerable.
He loves popcorn with lots of butter and he says tick-tock-tick-tock whenever I put the blinker on in the car. He sleeps with exactly six pillows.
Every year on December 5th, he goes into the basement and brings up the big red boots we bought at Target, and he puts them in the exact same spot by the fireplace. He does this to remind us about Santa.
He is a teenager. He is so painfully naive, it makes my heart ache.
I’m not saying he’s dumb—not at all. He’s pure, and unguarded, and real. He believes people are good and the earth is round and that cars cost exactly one hundred dollars.
You will never meet another person like him in your life. I guess you could say he’s like a like painting full of color and light—a curious mix of red and blue and green that, at first glance, looks like a big old mess.
But then you step back, and you look again. You see each color separately. You look down at your feet and you look up once more, and you realize it is more than a painting. It is a tapestry, and it tells a story about a boy.
There so much about the real world he doesn’t understand.
He cannot begin to grasp the concept of a hurricane marching over a small island, or how a shooter’s keen eye scans an unprotected crowd, or the way a bully sizes up the easiest target.
He’s never been to a concert. Oh, sure, he knows all about them—he knows a lot of people get together and sing the lyrics to their favorite songs at the top of their lungs, swaying in time to the rhythm of the heavy beat.
But my vulnerable child has no idea what is means to stockpile ammunition, or collect weapons, or break windows in a hotel room for the clearest shot on a beautiful autumn night.
Autism is without cure, and this vulnerable boy will one day grow to a vulnerable man—a man others will prey upon, and try to scam.
A man who may stand stock-still, and watch as the flames edge closer and closer.
As much as I long to, I know I cannot always be there for him. I cannot always stand in between him and disaster.
Can you see? Can you see how important it is for me to tell his story? I have to tell you about the mall and the popcorn and the pillows. I have to tell you about the color and the tapestry and I have to make you feel as though you know my Jack-a-boo, so that one day, you might help me.
Will you help me?
Will you help me keep him safe?
Will you peer into the blaze of hatred, and behold the beauty of a complicated child?
Will you show compassion for the unusual, and mercy for compromised?
Will you think before you speak, and breathe before you act, and always look behind you when you put your car in reverse in a parking lot?
Will you listen for those who have no voice?
And if the fire alarm goes off in the grocery store, and you see a boy standing all alone with his hands clapped over his ears, will you lead him out the door?
With his hand in yours, please, run. Run from the heat as if you are outrunning the sun.
I need you.
Mom. For the concert. In Las Vegas. Did they stop dancing. When he shot them.
October 9, 2017 @ 10:57 am
Sometimes my heart breaks a thousand times in a single day. There are two things parents of autistic children worry about; the here and now, and what will happen to them after I die. Thank you for writing how I think and feel. I sometimes read your posts through tears. I am relieved that I am not alone, while at the same time saddened that so many of us are traveling this path. P.S. I live in Las Vegas.
October 9, 2017 @ 11:28 am
So true, Diane.
? Jack. He’s a deep thinker. This did make me cry because what he said was so painfully beautiful.
October 9, 2017 @ 12:17 pm
I totally get it. We constantly try to predict what our teenager needs to learn to be safe on her own one day. Our child usually cannot ask for help when under stress either, which is something that we have been trying to work on. With all this emphasis on learning to be independent, we sometimes forget to reinforce asking for help. We will make a more consisten effort to simply get her to ask for help.
In terms of traffic safety, watching kids safety videos on YouTube over and over has actually helped. Scripts and songs have also been helpful.
Interestingly, supervised screentime, involving the internet and TV, has been very helpful in teaching my child about the manipulative nature of ads (we watch and discuss ads), click bait, signs of phishing, and much more. My child is learning not to trust people so easily, especially people she has never met. She is learning to detect sarcasm, jokes, teasing, and signs of bullying. She is learning this because I always sit with her during her screentime. It is a daily effort. I used to reject screentime (I still am not fond of most video games and definitely do not condone anything violent). However, when my daughter plays Minecraft online with her friend, they use chat mode, and she has been learning so much about filtering what she says, not sounding rude, and not inadvertently hurting the other person’s feelings. I serve as her “translator” and tell her when the other person might perceive a comment as rude. She has learned a ton in just one year, but there is still soooo much to learn. I just don’t want her to get completely overwhelmed when she is older and perhaps in a situation where she gets to surf the internet unsupervised. Sadly, we won’t be there forever.
We also watch TV shows together. My daughter likes Star versus the Forces of Evil, the Middle, the Goldbergs, Big Bang theory, and Duck Tales, but also still loves Daniel Tiger. These shows have given us so much material to discuss with regard to social interactions, sarcasm, jokes, dealing with disappointment, heartbreak, and much more. It is a big world out there, and I found these TV shows offer a way to observe and discuss some of these issues in a safe manner- before our teen grows up and suddenly has to figure out social interactions on her own through trial and error.
Last but not least, the ModelMeKids DVDs have been incredibly helpful to us (please note that we have no affiliation with the company). These are DVDs with video clips about how to act or what to do and say in various social situations (playdates, school, etc,). It also has scenarios where the actors model how to be a good sport, how to receive presents, how to accept “no”, etc. The actors are children/teens, which made them much more relatable to my child. My daughter used to ask to watch specific DVDs before a playdate. Since my daughter does not learn these things by “osmosis”, she literally had to watch these a lot, but eventually it stuck (most of the time anyways).
We have to keep teaching and continue to offer learning opportunities, presume competence, and hope and pray for the best. Of course, I also try to come up with a plan B if things should not work out as planned, but for now, we just keep plugging away.
October 10, 2017 @ 4:30 pm
thank you so much for sharing about the dvd’s!! My son 13, could use these!!
October 9, 2017 @ 12:35 pm
I love these blogs and I love reading the replies. However, so often I WISH I still had a CHILD with autism. I don’t….I have an ADULT with autism. (He’s 32 years old.) He does not live in our home anymore, but he is well cared for. But just when we think his life is in good order, his behaviors change. The people who care for him are great and are constantly trying to figure out ways to help him, but something we are all keenly aware of is that help for ADULTS with autism is hard to come by. We used to consult with an occupational therapist who had great ideas, but she does not deal with anyone over the age of 18. So we do a lot of trial-and-error. He sees a psychiatrist who prescribes meds for anxiety, but if one doesn’t seem to do the trick, he prescribes something else. And if a new med works…we wonder if it’s the meds or if it just happens to be the “time in his life” that made the positive change. And that positive change may disappear in a month or a year or several years and we’re right back where we started from. Sorry to be such a “debby downer” but serving our adult son is a challenge for us and for the wonderful people who run his home. We just keep on keeping on and spend a lot of time praying!
Keep up your great blog, Carrie. I read it every week and look forward to it. However, I see it as a reflection on our past and not on our present and future.
October 9, 2017 @ 2:14 pm
Does your son live in a group home? If so, how did you find it?
October 10, 2017 @ 3:04 pm
Pam, I too have an adult on the spectrum. He’s very high functioning, and yet so vulnerable. Sometimes it’s harder to navigate because he’s so high functioning that people don’t think he has autism. I am doing my best to train him and set him up to be successful because I know that some day I am going to die and there will be no one to take care of him. And the system is so hard to navigate. My youngest son is 17 and we have begun to seek out services for him as well. His autism is complicated by anxiety. He does not do well outside the house, but we are moving forward a step at a time, because some day I am going to die, and he will need to be able to care for himself. (The first time I said that, I could see the fear creep over him. Gut-wrenching.) Always we are working to help them learn to use the tools available to their best advantage. You are right, serving our adult children is difficult. Keep praying and advocating. We’ll get through.
October 9, 2017 @ 1:49 pm
Wow, “did they stop dancing”………?
October 10, 2017 @ 4:55 am
I will. I will and I will teach my children to. We will hold his hand and we will hold his heart and we will love him. I can hear what a hard journey this is but my family is just one among many who are learning how to love and serve yours. Thank you for helping us.
October 10, 2017 @ 12:22 pm
Watching the lives of an autistic child and the struggles of the families, so thankful for those parents and grandparents who maintain and do in the lives of this young life. Often in stores, when I see a parent who is struggling with their child, I remind myself to breathe and be present in that moment. We had a hyperactive one and while different, he ran out in front of cars, fell from monkey bars, climbed on school roofs. Screamed in a swimming pool! Can so identify. Also can identify with those who lost loved ones in he Las Vegas shooting as our precious adult son was murdered last December. The grief is still raw! Until we meet again in Heaven! May those parents who are struggling every day with the world of autism be blessed with family and friends who can step up to help them! And Carrie – your blog post was shared by a friend who can identify with you. I know that through the times of loving their child, that they know they are not alone. Bless all of you!
October 10, 2017 @ 12:23 pm
Trying to convince the court appointed lawyer of how naive and defenseless my 18 year old is at this time. I have been trying to get full guardianship since he turned 18. Sadly, I have to battle them to protect my son who has no ability to protect himself. It’s a crazy world we live in!!!!
October 10, 2017 @ 7:46 pm
Unfortunately last week here in our small community in West Virginia a mom of a two children, one with autism and downs and the other with autism, shot her children and then herself.
Nobody saw it coming, the five year old girl with autism and the mother died. The seven year old with downs and autism is in critical condition. The special needs community is large and close knit in this area, they are devastated.
Yes, if I saw Jack or any person on earth not protecting themselves from danger, I would help them. I would drag him from a burning building, I would shield him from bullets and protect him from a hurricane.
God made us all and loves us all just as we are. I would want somebody to protect my children if they could, I would not hesitate to help somebody else’s child no matter if they looked like a grown man!
February 16, 2018 @ 3:25 pm
I will lead him out the door to safety.