Wednesday, November 15, 2017

On trying to keep an open mind about your child's future

Last week, I had a discussion about Max's job future. There were no answers, but there were reassurances. And for now, that's enough.

I'd been concerned to read in Max's recent IEP that retail assembly and building maintenance were current areas of focus in the program at his school that teaches life skills and job training. Fine-motor skills are definitely not a strength for him, and likely never will be. Office skills, the other area of focus mentioned, seemed like more of a possibility. But I needed to better understand the thinking behind all this.

I got on the phone with one of the teachers who runs the program who's super-nice, warm and smart, with decades of experience under her belt. For starters, she explained that students were sampling lots of different types of jobs. That made sense. She also noted that they were just getting to know Max, although she could already see that he was a social sort of guy who regularly walked into class with a big smile, eager to get to work. Yep: Max.

As we talked, I noted a couple of times that I didn't feel that work involving manual labor was going to be right for Max, mainly because of his fine-motor challenges. She agreed, then noted that Max had been doing an admirable job with a FlipFold, a large, flat segmented piece of plastic; you flip up the sides to fold clothes. It's pretty genius. His speech therapist had mentioned seeing him in action, and suggested I get him one. (There's also the MiracleFold version at Bed, Bath & Beyond, and a ton of knockoffs on Amazon of dubious quality).

That got me thinking about advances, inventions and new technology that might emerge in years to come, enabling Max to do jobs. There's also the question of how Max might change in years to come, what work possibilities might arise from my own networking and a whole lot of other variables.

We talked about people at stores like The Gap who help keep merchandise neat. I pointed out that I'm not sure Max would be able to stand on his feet for hours on end, or feel adequately mentally stimulated. I laid out all my concerns.

This wonderful woman, who's likely met many a parent like me over the years, readily and evenly answered all of my questions. She noted that people can work in shifts and take breaks. She noted that a job in a store, for example, can be plenty social. She also talked about Max's love for computer skills, and a data entry program she'll be trying out with him. And she addressed the idea I've had of Max working as a restaurant host. The corrective drool surgery was not a success, although we are likely getting revision surgery. Until that issue is handled, she said, he could not have a food-related job. That was hard to hear, but a voice of reality.

Her responses were completely reasonable. My anxiety about Max's job future, not so much. It's pretty high for a variety reasons, not the least of which is the scar tissue that remains from the sheltered workshop I saw for adults with disabilities when I was touring high schools with Max. There's also the fact that I'm projecting my own ideas of a good job onto him, which I clearly need to contain.

Mainly, though, the anxiety stems from the great unknown. I'd like Max to find work that plays to his strengths, occupies him and makes him happy—with a boss and coworkers who appreciate what he brings to the table—and I just don't know what that means. I haven't felt this way since Max was a tot and I worried about what his abilities would be.

The teacher ended our conversation by encouraging us to continue to have one. "As Max's mom, you are the best advocate for him," she noted, and I was so glad to hear her acknowledge that.

I hung up feeling somewhat reassured, and determined to keep an open mind. As is my way, I will keep right on asking questions.

At home that night, I brought up the FlipFold with Max, who was downright giddy about it. He may be the first teen in the history of teens who'd like one for his birthday; he'll use it to pack for his upcoming trip to Las Vegas.

Who knew?


  1. It has to be so hard to hear what other peoples expectations for your child's future are, especially when they don't align with yours. But I think that is all parenting, special needs or not.


  2. Max would probably have to fix the drooling first, but in case you didn't know most clothing stores use folding tools like the FlipFold, so retail work would be really doable for him IMO

    Also, since Max would excel in a social job, you might want to work on his use of the speech app. Customers/clients/etc. are likely not going to be patient at decifering his speech, even if his boss and coworkers are.

  3. My son is 17 years old and a junior. Everything you are going through and feeling is the same for me when my son was a freshman. Keep being a great advocate because that will help alot. Our kiddos can do so much more than others think. You are doing a great job.


Thanks for sharing!

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