This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Yesterday was the last day of Autism Awareness Month. But for us autism awareness is year round. Over the last five years (since Norrin’s diagnosis) autism has become part of our normal and it’s been easy to take it for granted.
I expect to come home from work and find a therapist working with Norrin.
I expect Norrin to be in school twelve months out of the year.
I expect him to be a small class of six kids and three teachers.
I expect IEP meetings, evaluations and social workers showing up at our door.
I expect him to have difficulty transitioning from one routine to the next.
I expect him to have difficulty with socialization.
I guess what I’m trying to say is: I’m used to autism by now. I’m used to way it has altered our lives.
But still there are moments when I forget.
Like this weekend when went to a kid friendly amusement park. And right before leaving, we walked into the gift shop. Norrin stood at the door, scanning the store before he saw what he wanted and made a beeline for it.
It’s a chunky yellow school bus. In big bold letters I see: 18 months – 4 years old. A “baby” toy. (Norrin is seven.)
Norrin’s been eyeing this school bus the last three times we visited the park. And each time I’ve said no.
And I was ready to say again.
I know. I know. I know I shouldn’t care about these things. I know to look beyond time tables and milestones and age appropriate toys.
“He asks for it every time we come here. Who cares about the age,” my husband said. And I gave in.
But I refused to give Norrin the school bus in the car. He would have to earn it. I told him he could have the bus when we got home, after he cleaned his room.
As soon as we walked in, Norrin took off his shoes and socks and went to his room and moments later came back out. “I’m all finished,” he proudly proclaimed. He grabbed me by the hand and I followed him into his room.
All the toys were picked up. His books were put away. I could tell he was trying so hard to stand still. He was smiling, his big brown eyes sparkled. And while his hands were at his sides, his fingers were wriggling. His eager anticipation made me smile.
“How do you feel?” he asked.
“You did a good job. I feel proud.”
When I handed Norrin the school bus, he quickly ripped it out from its box and gathered some of his toy figurines to place inside. I watched him as he held the school bus at eye level, his free hand flapping with excitement.
“How about we play like this,” I said. Then I showed him how to spread out his figurines all over his room. And then I showed him how to drive the school bus around, picking up the figurines for school. While Norrin was wheeling the bus, we sang “Wheels on the bus.”
I watched as he played with this school bus appropriate for a child years younger than him and he still needed help. We still continue to work on Norrin’s imaginative play skills.
Suddenly, it was like a blue light bulb just went off. And autism had become very real for me. I needed a moment to be aware of it and accept it. I’ve had these moments before. And I suspect I’ll have them again.
I like to think that I am autism aware on a daily basis. But sometimes awareness catches me by surprise.
Does autism catch ever catch you by surprise? What are your moments of autism awareness?
I’ve watched this video of Jack Carroll auditioning for Britain’s Got Talent again and again. Throughout the routine the 14-year-old, who has cerebral palsy, poked fun at himself and the challenges he faces, opening with the line “Don’t worry, I know what you’re thinking: Harry Potter has had a nasty Quidditch accident.”
Jack is genuinely funny, and he’s got great timing, too. One of the judges called him “a comedy genius.” As I watched him perform, I kept thinking: I hope Max can someday make fun of his own cerebral palsy.
If that sounds weird, I can assure you, it’s not something I’d ever put down as one of Max’s therapy goals. But here’s the thing: Jack is able to own his disability. As he said, “A lot of times in comedy, your strengths are your weaknesses.” If you yourself display “the elephant in the room” (as he called it) then it makes people more comfortable.
I think of the gapes and stares Max gets from other kids. And how, if he were able to be self-deprecating, it would make kids more cool with him. Right now, he’s at the stage where he’s becoming aware that he has cerebral palsy. I don’t know when and if he’ll have the awareness to joke about it, I just hope he does.
Yes, I do mind when comedians make people with disabilities the butt of their jokes. That may sound contradictory, but consider this: When a person with disabilities can poke fun at himself, it makes him less of a person to be pitied, less of a victim. He can bust clichés. He can shift the power.
And I want my son to have all the power he can to charge through life.
People with disabilities are twice as likely to become victims of crime as as those without disabilities, per The National Crime Victim Survey. What doesn’t seem to have been studied: How often people with disabilities are likely to be harmed by police who are not aware of how to handle them.
This is an issue recently thrust in to the public eye with the tragic death of Robert Ethan Saylor, a 26-year-old with Down syndrome. As is widely known by now, back in January Saylor was at a movie theater and refused to leave because he wanted to see the next show. After authorities were called, Saylor resisted attempts to be removed and grew agitated. The officers pinned him down on his stomach and handcuffed him, letting up only when Saylor showed signs of distress. His death was ruled a homicide, by asphyxiation.
His death, and the lack of criminal charges pressed against the officers, has caused an uproar in the Down syndrome community. But it’s also been incredibly unsettling to others who have loved ones with disabilities. It’s made parents like me hyper-aware that adults who are unable to communicate as others can, who get upset by certain situations and who may not be able to follow orders are at risk of being considered disobedient by police, risking harm. Max, who has cerebral palsy, will grow up to be that adult, most likely. And what if, even now, he got lost in a crowd? What if he wigged out? What the average policeman know how to handle him? No, I think.
It was heartening to read that this week, New York State rolled out the first ever sensitivity training for police offers to help them better interact with people who have developmental disabilities. Although the First Responders Disability Awareness Training is not mandated by the state, New York’s Developmental Disabilities Planning Council pushed for funding it. Currently, as seems to be the case in other states, New York has no protocol for arresting and charging suspects with developmental disabilities.
The American’s With Disabilities Act website offers publications that inform law enforcers about handling people with disabilities. How many police officers actually read them, or get any training, is a big, worrisome question mark. Sometimes, decency and common sense alone won’t help.
I have enough concerns about how my son will navigate this world as he grows up. I hope that authorities in cities and states around the country learn from the tragedy of Robert Ethan Saylor and, in the coming years, start training their police to better understand people with disabilities—and do right by them.
Hopefully, non-profits that advocate for the disabled will keep pushing for this. People who have loved ones with disabilities can call their local police precincts and ask for this. Meanwhile, I’ll be holding Max’s hand extra tightly when we’re out.
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Norrin was diagnosed with autism when he was 2 years 5 months old – right around the age most kids start potty training. But at the time Norrin was diagnosed, he couldn’t even point his finger.
Or clap his hands.
Or wave hello/goodbye.
While potty training should have been at the bottom of the list of things I wanted Norrin to learn, there was this desire to be like a typical parent – for him to be a typical kid. And I wanted to start potty training Norrin at the age the other parents did. So a few months after the therapists started working with Norrin – we started.
And then we stopped. Because potty training a kid who couldn’t speak or have the motor coordination to clap, point, wave can be…difficult (among other things).
I realized that with everything else, I needed to take potty training step by step. So if you’re thinking of potty training your kid with autism – here are some things to keep in mind:
1. Ignore what the other kids/parents are doing. Parents of typical kids love to talk about potty training – how they did it and how long it took them. I remember talking to one mom who expressed her frustration with the process because it took a whole two weeks. And I felt like a failure because we had been working on potty training for months (with little success). I couldn’t think about other kids. I had to concentrate on mine.
2. Start when your child is ready. Aside from being emotionally ready, they need to be physically ready. One of the things our Applied Behavior Analysis (ABA) therapist stressed was Norrin learning how to to pull down his pants and underwear. Think about all the physical movement required to use the bathroom especially for boys. Potty training requires a certain amount of independence and if a child cannot remove his undergarments to go to the bathroom then it may be best to hold off until they can.
3. Everyone needs to be on board. When we started potty training Norrin, we started at home. We communicated with his teachers about potty training and asked for tips. We used to send Norrin to school wearing underwear with a Pull-Up underneath. Once he got to school – the Pull-Up was removed and his teachers took him to the bathroom throughout the day. Pull-Ups that have side openings worked best for potty training as it allowed teachers to remove it without removing all the clothing. It was a collaborative effort.
4. You need to be consistent. Once you determine your child is ready. Once you get everyone on board – teachers, sitters, grandparents – whoever. You need to be consistent. So even when you’re out and about on the weekends, even if your child has a Pull-Up on (just in case), take them to the bathroom – get them accustomed to public restrooms.
5. Be patient. It took us more than two years to potty train Norrin. Don’t think potty training will take a week, two weeks, or a month. Do not put your child (or yourself) on a deadline. Start when you start and finish when you finish.
6. Have a sense of humor. Potty training is messy business (so be sure to stock up on paper towels and cleaning wipes). Accept it. Laugh it off whenever possible. Though I know, sometimes it can be hard. If you want to laugh at one of our potty training adventures, check out this post - Norrin and the Royal Flushing Privies.
Norrin is 7-years-old. He’s fully potty trained during the day. Yes he still needs help (with buttons and zippers and cleaning), and he still needs prompting (washing hands). Night time potty training is a whole other ball game. We’re not even trying. And I’m not going stress about it, because I’m sure Norrin will get it. In his own time.
Here’s a happy story we could all use right about now. Jonny Hickey is an 8-year-old boy in the Atlanta area who has autism. Xena is a pit bull who was abused as a puppy and abandoned on the side of a road last September, severely emaciated near death. The Friends of Dekalb Animals rescue group found her, named her Xena The Warrior Puppy and nursed her back to health. Xena became a Facebook star, raising thousands of dollars to help other abused animals.
At a fundraiser, Xena ran over to a little boy—Jonny. He’d been a withdrawn child who didn’t speak much or interact with others. The two became fast friends and in March, his family adopted Xena. The dog has turned out to be the best therapy for Jonny, says his mom, Linda. As she wrote on Facebook:
I am certain God has everything to do with bringing Xena to my family…to Jonny. Jonny has a very limited vocabulary, which is growing every day…but since Xena came into our home, Jonny has not stopped talking. He talks to her all [the] way home from school, during homework, and afterwards he plays with her until dinner. Every day he gently touches her nose, wanting to put Band-Aids on her boo boo. He hugs her. He kisses her. He sings to her…and yells at her when she steals his toys. All this is music to this Mommy’s ears. Jonny has personal space issues as many children with autism have, and he doesn’t like anyone too close. So it brings tears to my eyes when I see Xena on his lap in the car with Jonny smiling, kissing and hugging her…. I pray that seeing Jonny may have made you realize that autism does not define these children. They have the same dreams we all have…they want to be accepted and loved…they want happiness.
Jonny and Xena made a video to help promote Autism Awareness Month. As he said, “I think we make a pretty perfect team to spread the word.”
Do puppy-love stories get any better than this? I don’t think so.