Wednesday, March 25, 2015

Growing up With Jared: "Downsizing"

Growing up With Jared: "Downsizing": Jared was ill today, so I came home from work to take care of him, and after the clean-up and after preaching to him that "the garbage...


Jared was ill today, so I came home from work to take care of him, and after the clean-up and after preaching to him that "the garbage pail is your friend" especially when the bathroom is just out of reach, and after setting him up with some peppermint tea, I called the manager at his job to say that Jared was under the weather and that work would not be possible tonight. His manager, who is so nice and who always has time for Jared, told me that he was glad I called, that Great Northern Pizza Kitchen in Fayetteville will be closing its doors on Monday because it can't pay its bills, and that he had been trying to think of a way to tell Jared. You see, for the past 2 years, part of Jared has been defined by the fact that he has a paying job, that he has responsibilities and coworkers and taxes to file and earned money to spend. I loved that his SSI was adjusted each month because he was collecting that paycheck.It wasn't just a job, it was a symbol of pride for both Jared and for me too. I liked telling people that Jared, my son with Down Syndrome had a job that he went to week after week, a job where he was the longest running employee. I always felt that we kind of "made it" that Jared was doing grown-up work where he made customers and staff smile, where he contributed. A manager once said that having Jared as work made everyone just a little bit happier.  I asked Jared's present manager what his plans were, and he said should be fine, that he has some leads. He gave me his information, said he would always be a reference for Jared.  I'm wondering what Jared's "leads" are. I know he would have to quit the job eventually when he goes away for school, but I wonder if there will ever be another chance, another manager who understands that my son will work slowly, but that his work will be meticulous. I wonder if there will ever be another manager who will have patience for Jared when he asks the time again because 7:30 looks different on different clocks, and that 7:30 the time his mom or John comes and gets him. I wonder if there will ever be a boss that gets it when Jared gets a little confused about the evening's job list, who will sit with Jared at the beginning of a shift just to review some expectations. I wonder this because I don't see a lot of people with Down Syndrome working in restaurants, or schools, or stores.  He was good at what he did. He was really good. That guy can fold a pizza box faster than most, I think.  I tell him now that he has more time to devote to Special Olympics to prepare for college, where I hope he hones those skills that workplaces require.
And to the bosses out there: I'd like to ask you to think about hiring people with disabilities, people who may learn or work slower than others, people who may require that things be explained a couple of times,  but I guarantee you they will be your most loyal employees. They will always go to work, unless they are sick; they will always try their very best; and they will always make the customers and staff just a little bit happier. I know this because that is exactly what my son, who happens to have Down Syndrome did for almost 3 years.

Saturday, March 7, 2015

Growing up With Jared: Happy Birthday My Son

Growing up With Jared: Happy Birthday My Son: When a child has a birthday, there is always that sort of bittersweet feeling of time gone by, of watching those once tiny people growing i...

Happy Birthday My Son

When a child has a birthday, there is always that sort of bittersweet feeling of time gone by, of watching those once tiny people growing into their own, becoming individuals that are part you and part something that is theirs alone. When a child with Down Syndrome has a birthday, the experience is that plus more. It's surreal, kind of, because the day is spent celebrating while continuously looking back to that day when a child comes into the world and you are handed news that you didn't expect. I remember being very sad that day, angry that I couldn't celebrate, scared that I couldn't do it. But today, as I think back over the past 22 years, it's not the scary parts that jump into my head first;  it's the milestones that I remember. That raised alabaster scar on Jared's chest becomes a badge telling the world that he is a fighter and survivor.  The kids that teased him or avoided him are blocked out by the faces of Jared's friends, mentors, and family, the ones who love him without question, but push him towards what they know he can be.  The words he couldn't read slip away, blocked out by the song he wrote and sings to his girlfriend.  The picture of a young mother crying in Jared's nursery is shadowed by the woman who will slip into her party dress tonight to attend a gala in honor of all those with Down Syndrome who have made it their mission to thrive in spite of heart murmurs, mean words, and a disability that sometimes makes it difficult to figure things out in this world.
So, happy birthday, Jared. There are incredible events and moments ahead of you that we can't even begin to imagine, I'll bet. And I look forward to those moments, but they are yours Jared; so I will stand back now. You don't need me to hold your arm or push you forward anymore, but I will be still here, even if when I look up, it is your back I see, walking away with YOUR friends into YOUR life. I just ask that you look back and wave once in awhile.