Jasan is 6 years old. He loves printers, elevators, and anything that rotates. With that in mind, his mother, Heidi, and grandmother Sherry are spending the morning with him at the TLC Laundromat in Crystal Lake.
"He's always loved washers and dryers, for some reason," Heidi says."Number one, it's mechanical. It spins. He's always loved spinning things, even when he was a little baby. I have a picture of him at his 1st birthday party, sitting in front of a fan. I didn't know he was autistic then."
Autism is a complicated brain disorder affecting about one in 68 children, according for the Centers for Disease Control. The cause is unknown, though genetics are definitely a factor. So is being male, like Jasan: five times more boys than girls develop autism.
Autism presents itself as a spectrum, ranging from severe, life-limiting disabilities — a quarter of people with autism are non-verbal — to those who display unusual-but-manageable quirks and mannerisms. Forty percent of people with autism have elevated intelligence.
"He's been reading since mid-2s," says Heidi. "Everything is by the brand name. Instead of calling the computer 'the computer,' he'll call it whatever kind of computer it is. When he was smaller we'd be at store, he'd [point to the cash register and say], 'Look mommy: it's a Sharp. The cashier would be, 'Did he just read that?'"
Prodded, Jasan will greet a visitor, eyes downcast, then rush off to watch the laundry tumble in the dryers or to help customers. One woman gives him an annoyed glance and draws away. But Abby Krajewski, of Crystal Lake, immediately grasps the situation.
"Do you want to help me?" she coos, allowing Jasan to swipe her laundry card through the reader — he loves swipe cards, and his mother bought him a device on Amazon.
"I helped him," Jasan reports back to his mother.
"Her," she gently corrects — reading faces, expressions, genders can be difficult for people with autism.
Heidi is 38, a single mom, and works in a friend's executive search firm, which gives her flexibility. She also lives at home with her mother, who helps with Jasan. I'm not using Heidi's last name since the Internet is forever, and while there's more awareness, there's also still stigma associated with autism.
"His grammy is the only other person that can put him to bed. It's very limiting," says Heidi, who describes her life as being, at times, "there's work and then Jasan. It's not healthy. I don't get to go out with my girlfriends or even go date."
A baby sitter is out of the question.
"He would just flip out," she says. "I've tried. When he was younger it was easier, there wasn't so much destructive behavior."
In spring 2014, she started a blog, followingjasan.com, where she posts photos of her son and essays on the challenges of caring for a kid with autism.
"I just know how lonely I feel sometimes. And frustrated and wanting to be not in my life," she says. "Writing lets me get it out."
Jasan lets out a howl.
"Somebody is scaring me," he says, his eyes frantic.
"It's just the spin," his mother says, gesturing to the washing machines.
"You want your headphones?" Heidi's mother, Sherry Robillard asks, producing a pair of noise-reducing ear cups like a runway worker would wear. Those help.
The visit to the laundromat illustrates a dilemma facing parents of functioning autistic children. How much do you indulge their fixations and how much do you fight them?
"The kind of journey I would like to create with him is doing things like this, where we can do things I know he enjoys," says Heidi. "We go to Best Buy or OfficeMax because he loves printers. He likes looking at the printers and pushing buttons. It might be extremely boring for me, so I take pictures of him and document him.
"I don't want to force him to change," Heidi said. "He doesn't need to be a typical kid. If he wants to be on the elevator for two hours, that's what we do. Letting him make his own decisions, then there is the fine line you still have to be in society."
For the future?
"I think he'll do something brilliant," Heidi says. "Maybe a sound engineer. Some brilliant engineer. Right now, the challenge is to get him out of the laundry."
That job falls to Robillard; Heidi has to go to work. About 1 p.m., after more than three hours there and a comforter that gets washed three times, Jasan is dragged out, resisting wildly.
"I raised two kids," Robillard says. "It's the strongest little will I've ever seen. Once he gets to that place, 'This is bad and I don't like it,' we can spend an hour in a meltdown. You want to give in because his will is so strong, but you can't."
Prodded, Jasan will greet a visitor, eyes downcast, then rush off to watch the laundry tumble in the dryers or to help customers. One woman gives him an annoyed glance and draws away. But Abby Krajewski, of Crystal Lake, immediately grasps the situation.
"Do you want to help me?" she coos, allowing Jasan to swipe her laundry card through the reader — he loves swipe cards, and his mother bought him a device on Amazon.
"I helped him," Jasan reports back to his mother.
"Her," she gently corrects — reading faces, expressions, genders can be difficult for people with autism.
Heidi is 38, a single mom, and works in a friend's executive search firm, which gives her flexibility. She also lives at home with her mother, who helps with Jasan. I'm not using Heidi's last name since the Internet is forever, and while there's more awareness, there's also still stigma associated with autism.
"His grammy is the only other person that can put him to bed. It's very limiting," says Heidi, who describes her life as being, at times, "there's work and then Jasan. It's not healthy. I don't get to go out with my girlfriends or even go date."
A baby sitter is out of the question.
"He would just flip out," she says. "I've tried. When he was younger it was easier, there wasn't so much destructive behavior."
In spring 2014, she started a blog, followingjasan.com, where she posts photos of her son and essays on the challenges of caring for a kid with autism.
"I just know how lonely I feel sometimes. And frustrated and wanting to be not in my life," she says. "Writing lets me get it out."
Jasan lets out a howl.
"Somebody is scaring me," he says, his eyes frantic.
"It's just the spin," his mother says, gesturing to the washing machines.
"You want your headphones?" Heidi's mother, Sherry Robillard asks, producing a pair of noise-reducing ear cups like a runway worker would wear. Those help.
The visit to the laundromat illustrates a dilemma facing parents of functioning autistic children. How much do you indulge their fixations and how much do you fight them?
"The kind of journey I would like to create with him is doing things like this, where we can do things I know he enjoys," says Heidi. "We go to Best Buy or OfficeMax because he loves printers. He likes looking at the printers and pushing buttons. It might be extremely boring for me, so I take pictures of him and document him.
"I don't want to force him to change," Heidi said. "He doesn't need to be a typical kid. If he wants to be on the elevator for two hours, that's what we do. Letting him make his own decisions, then there is the fine line you still have to be in society."
For the future?
"I think he'll do something brilliant," Heidi says. "Maybe a sound engineer. Some brilliant engineer. Right now, the challenge is to get him out of the laundry."
That job falls to Robillard; Heidi has to go to work. About 1 p.m., after more than three hours there and a comforter that gets washed three times, Jasan is dragged out, resisting wildly.
"I raised two kids," Robillard says. "It's the strongest little will I've ever seen. Once he gets to that place, 'This is bad and I don't like it,' we can spend an hour in a meltdown. You want to give in because his will is so strong, but you can't."
My daughter is a high school Special Ed teacher whose class consists primarily of autistic students. Besides extraordinary patience and compassion, proven strategies and tactics are required to move these children forward. Obviously this family has the love and will, but perhaps Heidi and Sherry should seek professional assistance if they have not already. Thank you for highlighting this most challenging (and rewarding) reality.
ReplyDeleteBarry, I commend your daughter for being one of those special humans that walk this earth. I have seen my son with teachers that aren't so great, and those that REALLY are! Please pass along my blog to her if she may be interested!
DeleteHeidi, thank you for those kind words. I have already passed the info on to my precious daughter and I'm certain she will check it out.
Delete"Professional Assistance" definitely seems to be needed here. As bad as the situation is now it can only get worse as Jasan gets older and stronger. Certainly, Heidi's case is a hard one and I can sympathize with her reluctance to involve professionals in the care of her son, but without help Jasan is not very likely to become a sound engineer or anything like it.
ReplyDeleteJohn
John, I believe you're right about the importance of early intervention. Poking around Heidi's website, the only mention of a therapist is when she meets Dr.Temple Grandin. It seems the main point of interest in her blog is the day to day frustrations and joys of raising an autistic child.
DeleteHe is in the special TLC program for autistic students that the Cary schools run, so I assume he has all the professional attention he needs. A lot of tangents had to be cut, and that was one of them. He isn't being raised in laundromats.
DeleteHello all, Jasan is receiving excellent assistance. He has been since the age of 2, when we started with early intervention. He now is in the autistic program within the Cary public school system. They are a great team that knows him very well and are able to meet him at his level. They have even helped guide me when I personally have needed some help with support. There is also a wonderful outlet in our area, Options and Advocacy of McHenry County. They have been wonderful with us.
DeleteI appreciate the comments, as I agree in that therapy and help can make a huge difference!
Thank you for those of you that have visited the blog. Jasan is in a very LOVING environment.
Governor Rauner needs to read this.
ReplyDeleteYes! Agreed. :)
DeleteI had a college roommate who worked for Bruno Bettleheim at the U. of Chicago's Orthogenic Institute. He didn't seem to like it much, and reading about Bettleheim some years later made me see why. He practiced an extreme form of tough love with patients and believed that autism was caused by a lack of maternal warmth, the now discredited "refrigerator mother" theory -- which certainly doesn't fit Heidi.
ReplyDeleteA good read featuring a high functioning autistic teen who solves a crime is Mark Haddon's "The Curious Incident of the Dog in the Night Time."
Tom Evans
If I remember that book correctly, it mentions Caesar's famous "...omnia gallia.." phrase and how it's almost always quoted incorrectly.
Deletejohn
The kid was a stickler for precise language. Among other compulsions.
ReplyDeleteTE
I'm in Special Ed and I've work with autistics for over 28 years. I completely sympathize and understand the many challenges Heidi and her son face. I'm sure he's receiving needed support in school, but it's very hard for families with autistic children to give the non-stop attention needed away from school. It may help to find objects/toys Jasan can spin and observe away from the laundromat, perhaps even a video of a spinning washing machine he can observe at home. I think it's wrong to force autistics to accept change and new sensations, but they can be encouraged to slowly accept these changes over time. We must find avenues that meet their hypersensitive needs without causing them visual or auditory pain.
ReplyDeleteBt the way, my own daughter is high functioning Aspergers and has many sensory problems of her own. She's also highly intelligent and in the top of her high school senior class. But, I haven't agreed to a formal diagnosis as to avoid the stigma that may follow her throughout her life and career, as Neil mentions.
Fascinating.
ReplyDeleteYou knew I was going to say that.