Getting and Keeping a Job

by NFXF

9 - Grocery Store 1

“So, when are you going to start working here?” the checker said to my son, as he was pulling food out of our cart to scan.

My ears perked up? Ian looked at me. I said, “I thought you had to work 20 hours a week, to work here.”

“No. We have a guy who only works on Sunday afternoons. You just have to work a four-hour shift.”

“You don’t have to work 20 hours a week? You can work one shift a week? Are you sure?”

He chuckled. “I’m sure.” Then he said to Ian, “Do you want to work here?”

Ian’s eyes lit up, “Sure!”

The wheels in my brain started spinning.

It was late summer and Ian was 18 years old and he was getting ready to start the Transition Program at his high school. I had to figure out how to make this work.

The Transition Program is what is offered in our school district for students 18-21 years old, after they graduate from high school.

Look into the program your high school offers for students 18 – 21 (or whenever they age out of school services) and see what you can do to make it work for your child.

Background

In high school, Ian was in a life-skills program. (In Ian’s school, this program is for students with disabilities and is the “home room” for the students. While some of the school work takes place in this room, most of the students also do inclusion.) In this program, the students had opportunities to try out a variety of different jobs throughout the high school years, BUT I discovered Ian could not keep any of them permanently, even if the job was perfect for him. These jobs were offered ONLY to develop job experience for the life skill students.

What I quickly deduced: The school never had plans to try to find a job for my son when he got out of school. Or for any of the students in life-skills, for that matter.

Right around this time, I went to a local disability resource fair. There I ran into a friend who operated a day program for people with developmental disabilities.   He gave me some advice: “Do whatever you can to make sure Ian comes out of school with a job. Whatever you can.” I have never forgotten that.

So, Ian gets all these job opportunities, but he can’t stay at any of them. Yet he needs to have a job when he gets out of school. Ugh.

Find out how the job opportunities program works in your child’s high school.

So when this checker asked Ian that question, I was determined to make this happen.

Getting Started

One day when Ian was not around, I introduced myself to the store manager. He said he would be thrilled to have Ian work at the store. This is the store that Ian has gone to his entire life, so many of the people in the store have watched Ian grow up, and they know our family.

I asked the store manager, “If Ian has a job coach, could he start with a two-hour shift?”

“I think we can make that work.” (“Yyyess!” I thought.)

I also asked if he could work the same schedule every day, to which they agreed. That still continues to this day AND as you can imagine, that is huge for our (adult) children.

Ian only works a four hour shift. I found that is definitely long enough.

Never be afraid to ask questions or ask for an exception to a ”rule.”

Ian’s Own Transition Program

Typically in the Transition Program in our school district, the students go to a different school and continue the different “job opportunities”. It is a three-year program that takes the students up to age 21. I had a different plan.

I called a meeting and proposed a transition program just for Ian. I told them this plan would save the district money. The job coach he would have at the transition program would just be used at an actual job instead.

Learn the buzz words, like “save money”.

Through his personal transition program, Ian would:

  • Continue to go to his home school in the morning.
  • Do his first period reading class.
  • Go to his second period Adaptive PE class. (link)
  • (Learn to) take the bus to work, using a coach. (link)
  • Work for two hours a day at first, then gradually work up to a four hour shift – also using a job coach. The job coach would gradually fade support.
  • Take the bus back to the high school so he could continue to help the football team after school.

Once Ian aged out of school services (age 21), he would continue working, but he would discontinue all the school aspects. The work times were set up to stay the same when he left school.

I thought this would be perfect for Ian. The school did too.

Never be afraid to ask the school district to make an exception to their “rules.”

With a few tweaks and a little time, it worked well. I was just thrilled with how things went. Ian learned to ride the bus and he started learning skills at the grocery store. By the following summer, Ian was up to working a four hour shift.

Keep up with everything that is going on. Make sure the school is happy and make sure the store/job is happy.

Making Adjustments

Summer came and the district told us Ian would no longer have a job coach. I checked with the grocery store, and they were fine with Ian working on his own. By this time, Ian had a good relationship with many of the checkers and the other courtesy clerks, aka baggers. This is when I truly began to understand and appreciate “natural supports.” Some of the checkers worked really well with Ian – they didn’t mind the prompts to stay on task, and I was impressed with the way that all the baggers, most of whom have a disability, looked out for and supported one another.

However, one day I dropped Ian off, one of the Head Clerks walked up to me and I got the dreaded, “Can I talk to you for a minute?” The day before, Ian had put bread at the bottom of a bag, and a customer complained.

On the spot, I told the clerk the key was to make it simple. After observing Ian for a few minutes, I went back to the head clerk and said, “Fragile items to the side, bag everything else, fragile items last.” They showed Ian what fragile items were, modeled what they wanted done (using what came to be a mantra), and with a few adjustments now and then, he was off. Did it still happen? Yes, but only every now and then.

9 - Grocery Store 2

Keep the explanation simple and model the behavior.

Adding a New Responsibility

One day the head clerk said we might have to switch Ian’s work times because he needed someone to gather carts during the same time that Ian was working. I responded, “If I bring in a job coach to teach that, could he keep the same times?”

So the debate began. Is Ian safe enough to bring in the carts? How will we teach him? Is this a smart thing to do? There are cars coming and going, and backing up.

We watched a couple of other baggers bring in the carts, gave Ian the brightest orange vest we could find, and let him go.

The good thing about bringing in carts is that there is not really a right or a wrong way to do it. While they taught it in a systematic way, the reality is that there are not always carts to be brought in. I quickly learned bringing in carts is perfect for someone who has a short attention span and is easily distracted.

Ian’s new work schedule was to gather carts for an hour, bag for an hour, gather carts for an hour, and bag for an hour. Within two shifts, the head clerk told me, “He’s doing way better at bagging now.” I started thinking: gross motor, fine motor, gross motor, and fine motor. Works great. We didn’t even plan this one.

More Strategies

  • Use mantras
    • “Bag ‘em up” – All the baggers use the mantra. It is very cool. “Round ‘em up” – Used when they are going out to do the carts.
  • Ian would leave his area when the fire fighters came in. We approached it from both sides. “Ian, you can go say hi to the firefighters, but then you have to come right back.” And, since we have gotten to know the firefighters over time, I approached several of the fire fighters over time and told them about the issue. I asked them to say hi to Ian, maybe chat for less than a minute, but then to tell him he needed to get back to work. I actually had to do that with several of our neighbors and friends who frequent the store. When all else fails, you might hear this over the intercom, “Ian, we need you back up front.”
  • Ian has learned how to “ask for something.”

I could tell you more stories about how some of the other employees took Ian to a Rockies baseball game, or how he sometimes chips in with the deli workers to order a pizza for lunch, or how he has started buying his own lunch, or how he sometimes buys coffee for the store manager, or how the store manager sometimes buys hot chocolate for him, or how Ian has observed what kind of soda the other employees like to drink and Ian will buy occasionally buy it for them, or how Ian sometimes wears a tie to work; the stories go on.

Or the time when Ian got to meet the President of Kroger (yes, the top guy, Rodney),  and Ian said, “Hey Rodney, how’s it going?” The smile that came to Rodney’s face? Unforgettable.

I never thought Ian would be able to work at a job on his own, without a job coach. But he is not just working, he is thriving – he has been at the store for nine years – and the other employees like him for who he is. I cannot imagine a better place for him.

I went up to the store manager after Ian started working there and I thanked him for hiring people with disabilities. He said, “That is just what I do.” I said, “You need to know – it’s a big deal, a really big deal, and I just want you to know how much I appreciate it.”

He smiled, “It’s good for all of us.”

It’s all about the relationships, cultivate them – from the custodian to the store manager.

Author
Jayne Dixon WeberJayne Dixon Weber has been a member of the NFXF team since 2007 and currently serves as the director of education and support services. She has two children—one, an adult son with fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting with the development of the NFXF’s Adolescent and Adult Project, Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is also the co-leader of the Colorado Fragile X CSN group. Jayne likes to read, enjoys photography, and goes for a walk every day.
Feel free to share your stories with me at treatment@fragilex.org. I’d love to hear from you.