26 Years Ago

It's been a long time since I've written, but I thought it fitting to write today, on the eve of Jared's 26th birthday. You see, I was 26 when I had Jared; there's some significance to that, and I'm trying to get my head around it.  "Growing up with Jared": I was so young, so scared, so naive. Words like "mongoloid" and "mental retardation" startled and disturbed me; they still do, but thankfully, I don't see or hear them as much. Either people are trying to be equitable, or, the thing I'd rather believe is that our children are starting to prove, by what they can do, that those stunted words are losing  traction in society.

 I look at my son, this young man, who, in order to begin to grow up, needed to move away. And I needed to let him. It's still scary, the unknown, the tenuous feeling of releasing control, but it is necessary; because, when he comes home, I start to mother him, and he starts to let me, a little too much. I'm waiting for that day, when he comes home and I treat him as the adult he should be, bu I question how that will happen. That too will involve a sort of letting go, of being ok with the choices and decisions he makes. I don't agree with all of them, but he's starting to make some good ones. I still try to influence him, too much, I think. I don't want to do that anymore and wonder what it will be like when I "grow up" and stop hinting and cajoling. It's exhausting.

So, here's my task for the next 26 years: I need to be there for my beautiful son, my achingly beautiful son, who wears a slightly patched heart on his sleeve and who has so much to offer to this world as he and his accomplishments and his realness help fade the ugly words often bestowed on our most vulnerable.

Happy Birthday Jared, and in a sense, happy birthday to me too.

Growing up With Jared: Jared has left the building...

Growing up With Jared: Jared has left the building...: September 24, 2015 To the mother of the little girl with Down Syndrome whom I saw at Kohl’s today: She won’t always be with you; s...

Jared has left the building...

September 24, 2015

To the mother of the little girl with Down Syndrome whom I saw at Kohl’s today:

She won’t always be with you; she WILL go to school some day; she WILL get a job and have friends; she WILL carve out a life that fits her just right. 

Let me tell you why I know:

Two weeks ago, we dropped off our oldest son, Jared to college at Otsego Academy.  There, he will live in a house with some other young men and women. There, he will cook dinner and share in the household chores. There, he will go to the community health club for a workout, a local restaurant for some dinner, and nearby Colgate University for a class or two. He will be doing all this without me, without the “managing” that has enveloped his life for the past 22 years.  I won’t be telling him to grab a coat because the forecast calls for rain. I won’t be making sure he has gluten free choices when we go out to dinner.  I have not even heard from him for a few days, since his last text. He did, however, at the beginning, request that his bathrobe be sent so that he might avoid another embarrassing half-clothed middle of the night fire drill. Oh, how he laughed when he told me that story.  And now, I don’t know what he is up to; it’s been a few days. Like his brother Jake, a freshman at SUNY Geneseo, he is on to a new part of his life, a part that doesn’t include mom or dad. He’s in college.

The day we dropped him off, he looked a bit nervous. My heart was breaking for him, but I know this is what he needs. He needs to go away and be just Jared, not, my son with Down Syndrome.  He needs to make his own identity, his own friends, his own plans. He called that first night, sending me into another wash of tears that I couldn’t let him hear. He said he was kind of homesick, and it took everything in my power to not jump into the car and drive the hour and ½ to get him, to bring him home. But, I told him what we all tell our children:  “It will be ok; you are just tired; everything looks better in the morning”, words that I half-believed but had to sell. I hung up the phone and went to bed, waking an hour later in a panic because I hadn’t told him where his extra toothbrushes were. And there, in the middle of the night, I made my way to his room, dark and still smelling of him. I lay down on his bed, clutching the little lamb who watched over him during his heart surgery such a long time ago, and I cried. I cried as hard as I cried 22 years ago, when they told me my son had Down Syndrome, when they told me they weren’t sure when he would walk, if he would talk…  When I thought he might be with me forever. As I rocked and cried on his bed, keening softly so as not to wake my younger son and husband while they slept in other rooms, I was struck with the fact that I was crying because Jared was gone, because he grew up and left , just like he was supposed to do.

Randi Downs

 

 

Growing up With Jared: In a Week...

Growing up With Jared: In a Week...: In a week, Jared will go away to school. In a week, he will share a house with other young men and a woman, fixing meals, completing housew...

In a Week...

In a week, Jared will go away to school. In a week, he will share a house with other young men and a woman, fixing meals, completing housework, studying, and interning to see what type of job might be a good fit. In a week, my voice won't be the cue that directs Jared's life; he will be guided by his teachers and ultimately, by himself, his grown-up self. I thought of this yesterday, while Jared was trying on clothes at Kohl's. And as I stood there, outside the dressing room, I began to cry. My husband just looked at me, said nothing, but in that nothing, let me know it was all ok. And we laughed together; me through tears and him with the purpose of making sure to lighten a heavy moment. I will have to thank him for that sometime. He gets it. He gets that I need to do the mushy mom things, that I will do the mushy mom things, but he always helps me balance raw emotion with some levity; that is so necessary as we let our kids fly.
In a week, I will not hear the gentle swish of the C-pap machine above me as I stand in the kitchen drinking my coffee. I will not hear him ask: "What's the plan for today, Mom?" Because, he will be making new plans with new friends in a new place for the next couple of years. And, if he decides to let me in on them, he will call, or text.  In a week, I will not be making sure this mentor knows this and that mentor makes sure to do that.While mentors are fantastic and allow our kids to lead somewhat independent lives, I'm kind of glad to step back from it. These mentors, individuals who supported Jared and taught him so much, were a good stepping stone for my boy. They were in the right place at the right time, and when Jared is done with college, they will be there again, as he continues grown-up life.
In a week, I will still wonder if I did the right thing, sending Jared to college. Because his college is not like Jake's, but it is the right fit for right now. Some will say that it is not inclusive, that because it is a college for individuals with special needs, that it is more institution than college. To that, my sister, Kathy said," Aren't all colleges institutions? Aren't all places where people attend for one purpose, to learn, somewhat istitutionalized?" The dictionary defines institution as , " a society or organization founded for a religious, educational, social, or similar purpose." So yes, Jared is attending an institution, but so are we all if we attend church, go to college, are employed...you get my meaning.
In a week, Jared's college will enfold him, care for him, laugh with him, and teach him things that I can't teach him if he stays with me. You see, he needs to know he can go away from me and I have to know he can go away from me. And we both need to know that we will be ok. My dad once said, "They are supposed to go away, your kids; that's what you spend your life preparing them to do." All kids need to fly at some point, especially our kids with different needs. It may take longer for some, but this world needs to keep getting better, to keep creating opportunities for each and everyone of them to spread their wings.
In a week, we will drive away from you, Jared. We are not going anywhere, son; you are.

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...

"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 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.