This is Jack
This is Jack. He is twelve, and he just finished sixth grade.
He has three brothers, and one sister, and a small dog named Wolfie.
Jack’s father is a dentist, and his mother is a mom, and they all live together in a house with black shutters and a front porch and a long driveway.
Would you say hello to him today? Will you smile gently when he walks through the door and maybe nod your head friendly-like?
Every day after school last year, Jack came home and climbed into the bathtub. He wore his clothes and he never turned the water on—not even once. Instead, he curled up on his side and closed his eyes.
And on the days when he had to come home early from school because of the tantrums and the salty tears he cried in front of everyone, on those days he went straight into the bathtub with no water. On those days, he stayed even longer with his eyes closed.
He felt safe there, in his quiet porcelain cocoon.
It’s summer now, and Jack has moved from the bathtub with no water to the swings outside. Whenever he’s nervous or sad or worried, he walks into the backyard and sits on the swing. He lifts his feet up and begins to move in a smooth, steady arc high above the ground.
These days, he is like a balloon that is slowly releasing hot, frustrated air. Every once in a while, he says something so quietly, it’s almost as though he’s reminding himself the way some people remind themselves to turn the light off after they leave a room.
I was for. So bad at school.
Sixth grade. It was not good for me.
I cried. For everyone to see.
The first week of July, Jack was supposed to go to something called Extended School Year, or ESY for short. But the people all around him—his dad the dentist and his mom the mom and a few other people—decided he was something called emotionally vulnerable because of his tough time in sixth grade, and maybe he should skip ESY this year.
Jack was very, very happy about skipping ESY.
But then, at the very last minute, a spot opened up in your camp, the one you’ve been going to for years and years—the camp where you work on stuff from the school year and take afternoon hikes and field trips to the beach.
Jack was very, very unhappy when we told him he would be going to your camp. He stomped his feet and screamed out No! at the top of his lungs and cried into Wolfie’s neck.
If Jack could tell you one single thing about himself, it’s that he wants to be like everyone else.
In fact, if he could march through the world waving a sign, the sign would have big block letters that read, “I want to be like everyone else!”
But on the back side of the sign—the side no one can see—would be tiny words that say, “I don’t know how to be like everyone else because I only talk about Disney movies if I’m nervous and I run my fingers down the sides of my nose all day long and sometimes I don’t answer when people ask a question right to me.”
And underneath those would be even smaller words, and they would say, “This is because of my autism.”
Jack is trying to be like everyone else the way a short person might try to be a tall person. With both hands he stretches to the sky, but the blueness and the clouds are always maddeningly out of reach.
This is Jack. He wants to belong, somewhere, anywhere.
Surely you can understand this. Surely you feel the same way, because we all feel the same way. We all want to fit in and have people laugh at our jokes and admire the shirt we’re wearing and say hey, I like pickles too!
Will you help him today, on this first day of camp? Will you show him where to put his red backpack that he’s had since first grade and point out the bathrooms and tell him what time everyone eats lunch? He’ll want to know these things. He likes schedule, and routine.
I know, he might come across as very rude in the beginning. He might say bad words, or try to run away and get back into the car. His dad the dentist might even have to chase him around the outside of the building and take both his hands and lead him through the door again and stand there hugging him for a while.
Jack-a-boo, I know you can do this.
Then maybe he will stand off to one side all day, alone. For the entire afternoon he might wait for his mom the mom to pick him up, a ghostly figure in his fluorescent green t-shirt.
Maybe he’ll come home after his first day of camp and sit on the swing and push his feet back and forth, back and forth, until his green shirt is little more than a blot against his unreachable sky.
Picture Jack like a turtle. Autism is his shell. It’s the first thing everyone sees about him; the hardness, the rigidness, the inflexibility.
But beneath the unyielding shell he is a good person, if you could just give him a chance. He is funny, and smart, and interesting. He loves Oreos and listens to a lot of music and he’s scared of lightning.
Won’t you give him a chance?
Please, give him a chance. I promise you won’t be sorry.
July 18, 2016 @ 11:57 am
Jack I like you just the way you are. You fit in with us all in just a different way.
July 18, 2016 @ 1:04 pm
We started Autism Families CONNECTicut six years ago because of our Jack. We met you at the Hospital for Special Care when you spoke there. Everyone on the spectrum is welcomed and can join into our activities- or not. Look us up!
July 18, 2016 @ 1:22 pm
Oh dear, it sounds like Jack was really suffering in school. The bathtub story is so sad. -We had to change school placement for our kiddo because the emotional strain on her was just too much. She went to a school with excellent reputation and wonderful teachers. However, it was not a school setting that allowed her to thrive, and in fact she suffered daily because it was not the right fit (there is only so much even the most motivated staff can do for a child when they have so many other students and so very many demands on them). I finally realized that when something is as difficult, stressful, and emotionally draining, each and every day, as school was for my daughter, the traditional school system must not have been right for her. We first homeschooled so that she could heal from the emotional trauma of traditional school, and then we enrolled her in a very small private therapeutic school (mostly for children with special needs, but some children are neurotypical, but were bullied in traditional schools and because of that, they needed to be in a smaller, therapeutic setting). I also finally realized that my daughter was not going to learn from neurotypical children just by being around them. Now, she is still around plenty of neurotypical individuals, but at school she finally seems to feel that she fits in, that she belongs. She finally gets the support that she needs to succeed, sees that she is not the only one who needs accomodations, and the teachers and staff really seem to get it. No longer do I have to explain and justify everything. They have seen it all before, and they are there to help. My daughter finally stopped saying that she is “bad” and that she hates herself. A non-traditional school path was a long way in the making though. I had a lot of preconceived notions about therapeutic schools, but finally got past that. Now, my child is being respected for who she is, as are all the children at her school. The teachers’ kindness and expertise just melts my heart. They seem to be able to look right past the rigidity and behaviors, and somehow see my sweet child the way I always see her: A beautiful, sweet child with many strengths and infinite potential. -I wish you and Jack all the best and a much, much happier 7th grade. Please let Jack know that he is not alone and that your readers think that he is awesome just the way he is! We all have areas in which we need to improve, but that does not make anybody worth less, and in that way, Jack is just like everyone else.-
July 18, 2016 @ 2:22 pm
I took part of your post and changed it to fit my Noah…
Picture Noah like a turtle. Autism is his shell. It’s the first thing everyone sees about him; the hardness, the rigidness, the inflexibility.
But beneath the unyielding shell he is a good person, if you could just give him a chance. He is funny, smart, interesting, and compassionate. He loves Oreos (just like Jack), Hot Wheels, pandas, ocean animals, PVTA buses (a local bus line), and mail trucks.
Please, give him a chance. I promise you won’t be sorry.
Beautiful post.
July 18, 2016 @ 6:33 pm
Hello Carrie, I just came across your wonderful blog when I read “Dear World, . . .” which I found while tooling through the internet – I don’t believe in happenstance. I DO believe that those things we find, read or hear about and those people we meet are part of God’s plan for us. So coming across your blog was ‘meant to be’. I started my work career as a ‘special education teacher in 1968. One of the boys (age 12) in my class was Autistic. It was a condition that not much was known about, so I worked with the boy by the tail of my shirt and by intuition. I tried so many different ways to get to him, to get him to respond and was largely unsuccessful. He had the most beautiful blue eyes and could, randomly, sing on key with a lovely voice. I knew there was someone valuable and interesting inside him and I ached that I didn’t know how to reach inside and find him. His mom was from the era when moms were blamed for autistic children because they were ‘cold mothers’. She would come in after school occasionally just to see how things were going. I enjoyed talking with her and hearing about her son’s behavior at home. She loved him so much and cared so much. Once she told me that she had be told she was a ‘cold mother’ and she cried – I cried right along with her. How terrible to tell a loving parent looking for help that they were the cause because they were ‘cold’. I did my best to reassure her that she was most definitely NOT a cold mother and did so several times during that year when she questioned herself. The next year this boy moved onto a middle school program and I lost track of him, but I’ve never forgotten him. By now he would be in his early 50’s – an adult who came along before all the support and help for parents and children alike became routine and expected. I wonder how he is doing? I can only hope someone reached the beauty and knowledge in him and helped him bring it to light.
Later in my career of working with children and adults who experienced developmental disabilities and those who were chronically mentally ill, I saw how adults lived and what support they got. During this time, we lived in Alaska and thought the ways these people were supported was more advanced than the ‘lower 48’. The people I worked with were from the same era as this boy was and I was somewhat relieved to see that many of the clients I worked with in group home environments had learned a great deal of independence with support over the years. Most of them had not gone to school as children,but had successes anyway. I’m hopeful this is how my ‘boy’ is living now.
I’m now retired after 36 years of mostly working in the special needs fields. I am seeing so much progress being made with those children who have Autism and I’m so thrilled by it. Knowing that it’s a disorder in some tiny part of the person’s brain takes all the blame off the parents – as least in theory. I’m pretty sure most of you amazing parents still carry a sense of guilt for some unseen reason. I pray that you all can rid yourselves of it and just know you are doing your very best in a difficult situation for all involved, most especially for Jack. He sounds like a delightful child and I like him just by the way you write about him, Carrie. Sleeping in the security of the bathtub sounds kind of nice and I’m sure most of us could do that at times – though I would have to have soft blankets and a pillow! We still have a waterbed (since 1979 and more than once I’ve called it my ‘womb’ and DO use it to just be alone!
Keep loving him and writing about your family and keep searching for answers – more appear monthly it seems. God Bless you and your wonderful family.
Carol
July 18, 2016 @ 6:42 pm
Wishing Jack all the best at camp – I hope there are people there who can see past his shell and make a connection with him.
And my fingers are crossed that grade 7 will be good for him.
August 5, 2016 @ 12:05 am
So many coincidences….. my grandson’s name is Jack, he is 11 and he has autism. One of his favorite calming activities is going out to the swing, usually with someone’s phone so he can listen to music, and swinging for a while. He might do it 15 times on a tough day. He’s pretty belligerent and likes to be in control. Sometimes it can be funny, like when he’s telling the pitcher at the Miracle League baseball game that he has to let Stephanie hit the ball or tries to get the dog listen to him recite the Little Caesar’s Pizza commercial, again. Other times he tells his parents what he is going to do and what they have to do, which doesn’t go as well. Sometimes he can be distracted and forgets about being in control of it all, but sometimes it doesn’t work so well. It’s especially hard at school. I’d love to see him find a friend at school, he so wants people to like him. He’s going into 6th grade this year which is in a different school. I pray it all goes well.