Advocating for your child when life is totally not normal

The email I opened from Max's school the other day was meant to convey good news. Max is in the Work Experience Cluster at school, which means that during a typical year, he would have gone out to workplaces and gotten various kinds of experience under his belt. But: pandemic. There is no business as normal, so that was obviously not going to happen. Especially since Max, like several other students in his class, is learning virtually. 

Max's school has an excellent reputation and great connections, and they had managed to score a few jobs from local businesses. Each student would get their own set of materials, and the work would include placing stickers on gift bags and coffee sleeves, assembling boxes for flower vases and placing labels on envelopes. 

That sounded pretty good to me. But then, I kept reading. And the suggestions were that virtual students could, in place of the actual work, do office-related skill at home like sorting, filing or collating, or chores such as cleaning, recycling, laundry or emptying the dishwasher. 

I did not know what to think. Sure, I could find tasks for Max to do at home. But it would not truly replicate the actual jobs he would have done for businesses, and nor would it feel the same. There have been times throughout Max's life where he's been excluded from activities, camps and social groups—but this was the first time I felt that he was being excluded from a program at a school for students with disabilities. 

I sent an email to the administrators asking about what could be done for Max and cc'd our case manager. I had already reached out weeks ago to the school to ask how students doing virtual learning would be able to get job experience this year. I asked if I might be able to pick up a kit of the materials and bring it home for Max to work on. 

One of my strengths as a parent is advocating for Max. But this time around, I must have come on too strongly—especially since I had not realized the unique challenges involved. Our case manager was first to respond. In measured words, she noted that other schools have been struggling with the same. That activities that easily happen in person were difficult to move to virtual. That hopefully Max's school would find a way to enhance his skills. That we (meaning, me) exercise patience and that we all think creatively. 

I know full well that this is all uncharted territory and schools are still piecing things together. But at the same time, I wanted Max's school to plan for virtual students now, not later. The principal and his team are incredibly responsive, and sure enough I heard back soon that they would take into consideration what I'd said and get back to me, although the businesses did not want their materials to leave the school. I jumped on a call with the principal and one of the teachers the next time.

The businesses had placed trust in Max's school that the work would be done in the school, in a controlled environment, the principal explained. Dispersing materials into the homes of students, where hygienic protocols could not be controlled, posed a risk. Businesses obviously do not want to take any risks at this time. They were already extending themselves to give the school jobs for students. 

I got it. I praised the school for securing the jobs. I said I hoped they understood where I was coming from: a parent concerned that her child was going to be missing out on vital work skills, possibly for the entire school year. And I pressed on, asking what could be done for Max so he could replicate jobs being handled at school. The principal came up with the idea of Max taking on some work that needed to be done for the school, sticking return labels onto envelopes for an upcoming mailing. He offered to send those home, along with a printout of coding information Max could do, too. I was grateful. 

Dave picked up at the packet at school yesterday morning, and I looked through it last night. There were a bunch of big and small envelopes, and two pages of adhesive labels. Max does not have the fine-motor skills to peel off the labels. I sent a thank-you email, and asked if the teacher would have usually removed the labels herself for Max to stick them on, or if there was a suggested hack that might help. I asked if Max's OT might be able to help with this. They've looped her into the discussion, so that's TBD. They also sent a long list of "soft" skills Max could do at home—everything from "problem solving" to "working productively"—but did not provide concrete suggestions, so I had to ask for that, too. 

Also last night, in my relatively new job as class coordinator, I spent a half hour trying to make sense of the Zoom links for Max's classes, therapies, and after-school programs and figuring out which paperwork he'd need for the next day.

Meanwhile, I'll bet money that our schools will be all virtual by December, anyway. Already I'm wondering if maybe I'll be able to advocate for Max to get an additional year of school down the road, to make up for what he's losing during this one. He turns 18 (18!!!!!!) in two months. He has only a precious few years of school left in his life. 

Virtual learning has its challenges for students and parents. Virtual job skills: even more so. But I know, if I know anything, that there are always options and work-arounds. Raising Max has taught me that—and to never stop trying to make things happen for him. 

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