A Story of a Boy
Let me tell you a story about a boy.
This boy, he is like no other boy.
Oh, he wants to be! He wants to be like you and me and everyone else.
But he is not.
Sometimes this makes him sad.
Other times he doesn’t seem to care.
It’s hard to know, really.
Some boys love baseball and swimming and laser tag and rough housing across the floor.
This boy does not.
He loves grocery shopping, and whispering long hushed secrets to his dog.
He does not like when people touch him too much.
He no longer swims in the lake or the ocean or the pool. He says the water is too dirty.
He does like to paddle board, though.
Some boys go to birthday parties or to the movies with their friends or spend the night at each other’s houses.
This boy does not.
He has not been invited to a party in almost ten years.
It doesn’t really matter. He wouldn’t go anyway.
He does love the movies, though. He goes with his mother and sometimes his brother who can drive a car. He prints out the tickets days in advance. He takes a paper clip from his father’s desk and carefully clips the papers all together.
Then, he maps out the best route and decides the best time to leave so the stop lights will be green and there is no traffic.
All this, for a theater he has been to perhaps six dozen times.
A theater that is five-point-two miles from his house.
This boy, he takes something that might bring the smallest spark of joy, and he dismantles it until it’s nothing but a pile of kindling.
And if this doesn’t break your heart into a million pieces, well, probably nothing will.
Some may argue the dismantling is the joy, that this boy takes as much pleasure in the mapping and the printing and the paperclips as the event itself.
It’s hard to know, really.
Most boys go for a check-up once a year and the doctor talks to them discreetly about puberty and the changes in their bodies and all of that.
This boy, he has to sit for long evaluations and talk to doctors about his fears and take tests to measure his muscle tone and his executive functioning and his cognitive flexibility.
He is like no one else in this whole wide world.
This is both a blessing, and a curse.
It is a blessing because he is special and good and he teaches people things like how to accept what is different and to keep an open mind when you see a kid screaming in the mall.
Yet, the curse is his everlasting loneliness. It is the isolation bestowed by Autism Spectrum Disorder.
Have you ever felt lonely?
Have you ever felt there was no one else like you in the whole wide world?
He feels this way every single day.
This boy.
This boy with his autism and his maps and his movie tickets clutched tightly in his hands.
Autism is many, many things.
It is a number.
A statistic.
A percentage.
It is a one in fifty-nine chance of a child who will, have a, quote, “Condition related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication. The disorder also includes limited and repetitive patterns of behavior.”
Unquote.
But that’s just the black-and-white-no-shades-of-grey version.
In real, every day life, autism is nails screeching across the social chalkboard—awkward conversations and blurted comments and jumping and hopping and lining up toy trains all in a row.
Like a shadow dancing across the wall at dusk, autism is ever-changing. It does not, for one single second, stand static or still.
It is a boy.
A boy who was born on a Mother’s Sunday—who squirmed and fussed and cried for the first year of his life.
Now, fifteen years later he loves avocados, and ice cream, and hot dogs.
A boy who swallows two pills at night and one in the morning, so he may keep the wolf of anxiety somewhat at bay.
This boy, he chases his dreams.
He dreams of owning a car and becoming a record producer and maybe living n Los Angeles.
He is determined to have these things for himself.
Nothing will hold him back.
Everything will hold him back.
Stereotypes, written tests, orange-cone-detours, traffic.
Job interviewers who are in a rush and don’t have the patience to listen while he searches for answers.
Managers who won’t give him a chance.
Please, give him a chance.
Most boys have a moment where they shine.
Awards ceremonies, solos on stage, pinning a sweet corsage on a giggly girl.
Where is his moment?
What if he never has a moment?
Everyone needs a moment.
Behind this boy, there is a mother.
This mother, she is is chasing his dreams right alongside him.
She gets out of breath sometimes, with all of the chasing. It makes her tired.
See, while she is running and chasing, she is also talking and explaining.
She is telling people about this boy’s autism and his anxiety and the avocados and the loneliness.
She had to register him the other day, with the local police department. She had to do this in case he ran away from her because he was scared mad fight flight like a bird. Never in a hundred thousand years did she think parenting a child with autism would bring her to this point.
She is determined.
She will leave nothing unsaid.
She doesn’t know how to be in this world without hurting for him. Tell her. Tell her how to be alive in this world and not hurt for the boy born on Mother’s Day.
Tell her you will listen for his words.
Tell her she can relax. For just one single second of the day, she can relax, because you have heard all she has to say.
She believes in him.
That is the thing.
She believes in him the way she believes the sun will rise in the morning and set again at night.
She will make sure he has a moment.
She just isn’t sure how quite yet.
She isn’t sure how far he’ll go, or where he’ll live, or if he’ll ever try a bite of yogurt.
She does know one thing, though.
His place in this world is infinitely gorgeous.
July 8, 2019 @ 12:32 pm
Hi, Carrie.
My name is Craig. My wife and I have a son named Noah. He is 14 and he’s on the autism spectrum.
I’ve been reading your blog for many years and two things have become very clear. First, Jack sounds very similar to Noah. Second, you, your husband, and Jack’s family as well as my wife and I and Noah’s family are doing everything to ensure the best possible future for both boys.
Your blog is a constant source of inspiration and comfort for many people—including me. So thank you for everything you do, everything you say, and everything you write.
All the best,
Craig
PS: Today’s post talks about Jack not having a “moment” yet. Well, that picture of him confidently gliding across the water on his paddle board looks like quite a moment to me.
July 8, 2019 @ 2:28 pm
I have a boy too. I once thought he would always have to live with me and spend his life playing video games in the dark. He has allergies. He hates the outdoors. We can’t have a cat. We gave up on taking him camping, although he did take a short hike with his dad on Father’s Day.
There is a lot I could tell you. He is really good at math and computers. He wants to live in the matrix. He had to take his GED because he couldn’t tolerate high school, but then he took his SATs and got into college. For years he only took classes he liked and then he wanted to graduate, so he learned to take classes from strange teachers and after 8 years he did graduate!
He lives with his sister to be closer to his college. She and her husband have taken over alot of what I used to do for him and they teach him how to be independent. It took two years, but this month he got a job! A job he is excited about. A job that will take him 3 hours away and require him to live by himself. He is ready. He is scared, but he is determined.
He has a little apartment we are going to help him move into. It is in the same building as a Safeway store. It is a block away from his new job and in a dense urban area with lots of restaurants for him to eat at. He says he’s going to get a vacuum cleaner. I hope it’s a quiet one.
Ten years ago this was just an impossible dream. You never know. He’s so bright, I thought he should pick something other than video games to make a career out of, but he did what he wanted to do anyway and now he is going to make more money than me.
I love that Jack likes to bake. That can be a career. He has skills. He has passions. He has support. He will grow and change and mature. Maybe in different ways than you expect, but he will be a man. Some people say ASD sets you back about 10 years. It’s a LOT to deal with. My son is 28. He’s starting his first job next week!
July 8, 2019 @ 4:04 pm
Thank you, Janelle.
July 11, 2019 @ 11:07 pm
Thank you, Janelle, for taking the time to share your beautiful story. My daughter is 15 now, and she has come such a long way, and I can’t wait to see where she’ll be at 28. I am so very happy for your son and you. It reminds me to always presume competence and to be patient so that our children’s strengths will have a chance to mature on their very own timeline!
July 13, 2019 @ 2:44 am
I love that “presume competence”. We found a mentor who taught us so much about that and he created the space for my son’s skills and personality to come alive and flourish.
July 14, 2019 @ 12:19 am
May I ask how you found a mentor for your son? I’d love to find one for my daughter.
July 15, 2019 @ 2:28 am
We really lucked out. The autism specialist at the high school just happened to be taking some seminars from him at the time and recommended him and then the county stepped up and paid for it! So many planets aligned to make it happen. He happened to be such a good fit and intuitively knew what support we needed. It does take just the right person at the right time and I cannot even explain how it happened. His philosophy was that you cannot learn from someone you do not have a relationship with. So I recommend someone who likes to do fun things with your kid first of all, because that is the road to trust and you will not try new, scary things for someone you do not trust completely.
July 8, 2019 @ 3:27 pm
“He is my heart wandering about in your world”. ❤️
July 9, 2019 @ 9:32 pm
Reading your blog every week not only touches my heart, but it continues to give me hope for my grandson as well as for all God’s Children on the Autism Spectrum. Thank you.
July 13, 2019 @ 6:29 pm
I feel the same way. After my grandson, now my grand daughter (his little sister) is having symptoms. But they are different and she has not been diagnosed. I too pray for all Gods asd children and parents and especially grandparents.
July 10, 2019 @ 10:18 am
beautifully written, as usual.