The Last Big Day
This weekend my 12-year old son, Charlie, won an award for Little League.
I felt so happy, watching him walk onto the field in his orange uniform, with his shoulders squared and his head held high.
Then, out of the corner of my eye, I saw my other son Jack jumping and hopping with his fingers in his mouth. And I felt a pinch of sadness.
Jack is fourteen. He has autism.
I want to tell you, I don’t frame everything within the context of autism. It’s not like that.
I mean this time, I felt the pinch and then I turned back to the field and I hugged my dark-haired boy so tight and I whispered in his ear. We had cheeseburgers for dinner to celebrate.
Then, after everyone was asleep, I sat at my desk, and I opened my laptop. I thought again about the pinch, and I forced myself to be curious for just a moment.
My son Jack is fourteen, and he has autism.
Autism is like this: interesting different complicated exhausting mysterious sometimes beautiful sometimes frustrating all the time real.
It can also be a double-edged sword.
Let me give you an example. Jack can talk. Who would think talking could be a double-edged sword?
But talk he does. He talks to himself all the time. He mutters and gestures and points to himself. It’s like living with a ghost.
When he’s not talking to himself, he’s asking a million questions a minute, or reporting odd, unrelated facts.
He might ask you if you’ve ever had a c-section, or if your mother has freckles, or if you are scared of lightning.
He might tell you the spiders in Brazil are the most dangerous in the whole world.
Jack is considered to have what the high-falutin’ experts call high-functioning autism. This is wonderful. We are grateful.
But accompanying high-functioning is understanding on his part—awareness of who he is and how he fits in our world. This means he knows he is interesting different complicated exhausting mysterious sometimes beautiful sometimes frustrating all the time real.
And that, my dear friends, is a sharp, shiny, double-edged sword.
We’ve done everything that’s been asked of us.
We went to the meetings. We sat around long varnished tables and listened to reports and nodded our heads.
We signed all the forms, declaring to the world our child was not who we expected.
We sat through endless afternoons of homework, and reading logs, and chaos.
We set our pride to the side and begged for services, like paupers crowding around a well gone dry.
And while we do this, our fellow parents plan graduation parties and make signs announcing college placements and buy balloons and order cakes.
Some parents hope for doctors and maybe lawyers—or maybe architects, or pilots, or engineers, or botanists.
We hope the local grocery store—the one we’ve been going to since he was a toddler—will take him in and train him how to do something and maybe sing to him on his birthday. You know, so he feels included.
If you think about it, our lives are highlighted by commemorations, and accomplishments—graduations, our first job, marriage, baby, promotions, and retirement.
With Jack, the celebrations kind of dropped off all at once. We made it as far as the sixth grade talent show—a painful rendition of Taylor Swift’s You Belong With Me, where I thought I might shatter like a porcelain statue if someone so much as touched my elbow or smiled in my direction.
If I knew that was going to be his last big day, I might have done something. Maybe taken him out for ice cream, or at least hugged him when he came off the stage. Instead, he just trundled back to class with his aide.
We never get a chance to celebrate him. We never get to hear his voice announced on a loud speaker or see his name fixed to a plaque. We never clap for something he’s done.
Instead, he and I are stuck in the monotony of the daily routine like two spiders trapped inside a web. We argue about dinner and movies and Amazon and the weather. We have no more big days.
I mean, he might get his GED at some point. Do you throw a party for that kind of thing? Do you rent a tent? Or get a cake with writing on it? Would people still come and slip him envelopes on the sly and clap him on the shoulder?
I’m not mad about all of this. That’s not it. I don’t resent the balloon-ordering parents.
I just want you to know that I’ve done everything that’s been asked of me. And still, here we are.
He touches things constantly. His fingers are always in motion, picking stuff up and setting it back down, fiddling with the dial on the car radio, tracing the map of his face—as though he is blind, and can only see through his fingertips.
Why? Why does he do this?
I guess it’s because he has autism.
Jack has autism.
My son has a neurological disorder and some people hate the word disorder but I don’t know what else to call it.
I gave birth to one son who collects trophies on the baseball field and another son who touches all of the silverware on the table in a restaurant.
Life is funny.
Jack has autism.
He will have it forever and ever and he will never get a break from it and neither will I and sometimes, this makes the both of us sad. Actually, it makes me sweat.
Did you know you can’t make a person read a book? You cannot force them to look at the words on the page, and piece together the story, and understand why Almanzo might want to set up a farm with Laura and make her his wife.
I know this, because I have tried.
I have insisted he sit in that chair and look at the words and tell me exactly what’s going on with the characters.
I’ve done everything that’s been asked of me.
We’ve done everything that’s been asked of us.
We are nowhere and everywhere all at once. We are real-live opposites in motion.
I heard somewhere that when you are tired, or overwhelmed, or aggravated, you should think of all the other people in the whole entire world who feel the exact same way at the exact same time.
So I do it.
I sit with this boy and his book, and I think about how there are hundreds of mothers like me.
I circle the well with my hands outstretched, and I think about how there are thousands of parents like me.
I walk through the dark house and I switch on my laptop, and I think about the millions of people like me.
Maybe you are like me. I hope so and I hope not at the exact same opposite time.
You know what? I think I will throw him a big party if he gets his GED. I will rent a great big tent and invite everyone we know and order a chocolate cake because that’s his favorite.
A few days before the party, I will call the bakery and tell them to write one thing on it in blue frosting. He loves the color blue.
Jack. We are proud of you.
June 18, 2018 @ 10:43 am
Have a party, and rent a tent, and make a HUGE deal of it. Its HIS life, and take pride in what he can and will accomplish. Yes- it is different, but its HIS different, and that’s okay. Just as there are lots of parents of neuro-typical kids who also aren’t the “medal-getters” and “award-getters” who also need to take pride in what their kid that was great/cool/wonderful. As the mom of two special needs kiddos- we all need to stop and take a breath, and remember that there are a lot of kids who do need recognition for their individual milestones, whether big or small.
June 18, 2018 @ 11:20 am
Have a party. I will come and I will wear his favorite color and drive my Mini Cooper. I will come and celebrate who Jack is, how much he has accomplished, and support him in navigating his hopes and dreams. Rent the tent. We all want to celebrate him:)
June 18, 2018 @ 11:46 am
There is a 22-year old young woman in my church who has issues that are not autism, but she has them and it will affect her and her moms all their lives. When she told me last summer she was getting her GED that week, my husband and I turned coffee hour into a Graduation Party. Nope, not the Big Deal other kids get, but in our community, there were SO many hugs and congratulations and love. This is not to console you, because you are making your own path. But just to say there were FIFTY people who know her, know her story, and were super happy to celebrate with her that she accomplished this. In the past year she has worked 6 hours per day, 5 days per week, as a kitchen tech helper in a school kitchen.
And BTW, I started seeing her and talking to her and liking her so much – because i have been reading your website so long that I see people I didn’t used to see so well.
June 18, 2018 @ 11:50 am
Hi Carrie,
I have a son with autism – high-functioning as well. When he was 12 he insisted on burning his homework in the pellet stove. I’m not sure I remember much at 14, but by 16 he planned his own birthday party with a movie and pizza and invited his autistic friends over. His autistic girlfriend asked him out that night. He is now 20. He got his GED through a special program with vocational rehab and is learning to build houses. He even goes to the local college and this year got his driver’s license. These are all things that I never thought he’d do when he was 14. You never know when something will click.
Keep reaching for the stars.
Vera
June 18, 2018 @ 11:55 am
We had a party when Will got his GED. The program he participated in to prepare for the test even did a graduation ceremony. He walked the stage in cap and gown, even received a tassel to keep. A GED is absolutely worthy of a celebration! Balloons, cake, and all! You’re doing a great job, Mama! The struggle is real, but you and Jack are going to make it together. ❤️
June 18, 2018 @ 12:11 pm
My son has asperger’s. 19 years on this journey. Biggest heart ever, fewest friends ever. I have 4 boys. He is my youngest. Your blogs help me to see him thru different glasses but do i feel alone, most of the time. It gets so much harder as they get older because of the socialization and ackwardness. What about his future? What about his employment? What anout mine? Such a tough journey, thank you for your blogs that help us to feel not so alone
June 18, 2018 @ 12:22 pm
He is only 14…This is just the beginning!
It took us lots of trial and error to find the right activities. And they don’t tend to last forever, but they usually provide a source of enjoyment and learning for a while.
How about Special Olympics, an adaptive gymnastics class, or an adaptive dance class like Hip Hop? A lot of counties have buddy sports as well. Or how about chorus?
Of course there are the Boy Scouts, or Scouts BSA as they are now known since they started admitting girls. Girl scouts were very flexible, and one can always start their own troop and invite siblings and classmates to join. It’s nice to be the scout leader because that way, one can structure the meetings and prepare one’s child well in advance. The activities are extremely wide-ranging and each completed activity leads to earning a badge.
Last but not least, maybe you could advocate and work with your son’s school to have a small performance at school during the year and an end-of-the year ceremony. At my daughter’s school, they have three performances per year (usually they sing a group song, perform a brief, heavily adapted play, and then there is another chorus performance at the end of the year. At the end of the year, they also have an award ceremony. Awards are based on an individual’s strength or achievement demonstrated during the school year. Afterwards, they have a party for the students and their families.
Every so often, I catch myself thinking that maybe my child should be “mainstreamed” and wondering if we are holding her back by not mainstreaming. But, this kind if thinking is so very tricky and sneaky because it is paralyzing. It tries to suck us in to preoccupy our minds with worries and fears and leaves no room for living in the moment and planning activities for the present.
And it is ableist thinking. I don’t want to be ableist. That’s why I ask myself, why should my child be at a mainstream school where they don’t have the time and resources to really focus on my child’s needs? Why should she go to a mainstream school where few, if any, have a vested interest in helping my child find happiness and fulfillment? And why should jobs requiring higher education automatically be associated with more prestige than jobs that require no college, but that allow someone to earn a paycheck and to find some happiness and fulfillment?
Awards and special days and college are what we have been taught to strive for, but my child is teaching me to reexamine all of it. She is also teaching me not to get caught up in my own fears and to think outside the box instead. Not easy, but it gradually does get easier.
Wishing you all the best, and thank you for your blog!
June 18, 2018 @ 2:33 pm
Wow, this week was even more thought-provoking for me than normal. 1.) High-functioning Momma needs a party for navigating life with a high-functioning son, AND four other children and all you have achieved, too! My chest tightens just reading this and having to navigate life with only one high-functioning daughter. 2.) Every. Single. Achievement … I try to focus on the interesting and beautiful. Otherwise, the different complicated exhausting mysterious sometimes frustrating all the time real gets too overwhelming, and to what end – other than a shortened lifespan for me due to the stress. 3.) Depending upon how Jack deals with parties, tents, and cake with blue writing … I’m not saying don’t celebrate and honor his extraordinary achievements; he definitely earned it. I just wouldn’t want him stressed as a result of all the hubbub … having the exact opposite intended effect. You’ve got this either way. Hugs!
June 19, 2018 @ 6:45 pm
Great article. Autism is a double-edged sword, indeed. This analogy couldn’t have been more precise. Our everyday lives become this way, everything feels like it is split in a half, we end up split like that, half-here, half-there, but never whole again.