tag:blogger.com,1999:blog-34637755669961637132024-03-05T10:03:32.147-08:00Growing up With JaredReflections from a mother of a young man with Down Syndromegrowing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.comBlogger109125tag:blogger.com,1999:blog-3463775566996163713.post-29867039831668830402019-03-06T12:23:00.000-08:002019-03-06T12:34:10.433-08:0026 Years Ago<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
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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.<br />
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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.<br />
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Happy Birthday Jared, and in a sense, happy birthday to me too.<br />
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growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com1tag:blogger.com,1999:blog-3463775566996163713.post-54624905449230128202015-09-24T18:10:00.001-07:002015-09-24T18:10:23.936-07:00Growing up With Jared: Jared has left the building...<a href="http://downsyndromedreams.blogspot.com/2015/09/jared-has-left-building.html?spref=bl">Growing up With Jared: Jared has left the building...</a>: 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...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-82439572847127581522015-09-24T18:08:00.000-07:002015-09-24T18:08:02.378-07:00Jared has left the building...<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
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<span style="font-family: "Cambria","serif"; font-size: 12pt; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">September
24, 2015<o:p></o:p></span></div>
<br />
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<span style="font-family: "Cambria","serif"; font-size: 12pt; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">To
the mother of the little girl with Down Syndrome whom I saw at Kohl’s today:<o:p></o:p></span></div>
<br />
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<span style="font-family: "Cambria","serif"; font-size: 12pt; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">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.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
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<span style="font-family: "Cambria","serif"; font-size: 12pt; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">Let
me tell you why I know:<o:p></o:p></span></div>
<br />
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<span style="font-family: "Cambria","serif"; font-size: 12pt; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">Two
weeks ago, we dropped off our oldest son, Jared to college at Otsego
Academy.<span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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. <o:p></o:p></span></div>
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</o:lock></v:path></v:stroke></span></v:shapetype><v:shape id="Picture_x0020_1" o:spid="_x0000_s1026" style="height: 289pt; margin-left: 308.1pt; margin-top: 140.3pt; mso-height-percent: 0; mso-height-relative: page; mso-position-horizontal-relative: text; mso-position-horizontal: absolute; mso-position-vertical-relative: text; mso-position-vertical: absolute; mso-width-percent: 0; mso-width-relative: page; mso-wrap-distance-bottom: 0; mso-wrap-distance-left: 9pt; mso-wrap-distance-right: 9pt; mso-wrap-distance-top: 0; mso-wrap-style: square; position: absolute; visibility: visible; width: 216.75pt; z-index: -251658240;" type="#_x0000_t75"><span style="font-family: Calibri;">
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</w:wrap></v:imagedata></span></v:shape><span style="font-family: "Cambria","serif"; font-size: 12pt; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">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. <span style="mso-spacerun: yes;"> </span>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: <span style="mso-spacerun: yes;"> </span>“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…<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<span style="font-family: "Cambria","serif"; font-size: 12pt; line-height: 115%; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">Randi
Downs<o:p></o:p></span></div>
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growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-60416425352256982642015-09-06T07:13:00.001-07:002015-09-06T07:13:23.504-07:00Growing up With Jared: In a Week...<a href="http://downsyndromedreams.blogspot.com/2015/09/in-week.html?spref=bl">Growing up With Jared: In a Week...</a>: 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...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-71462827241015621522015-09-06T07:09:00.000-07:002015-09-06T07:09:29.429-07:00In a Week...<div dir="ltr" style="text-align: left;" trbidi="on">
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. <br />
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.<br />
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. <br />
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 <strong>I </strong>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.<br />
In a week, we will drive away from you, Jared. We are not going anywhere, son; you are.</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-55230018210013467182015-03-25T12:03:00.001-07:002015-03-25T12:03:25.819-07:00Growing up With Jared: "Downsizing"<a href="http://downsyndromedreams.blogspot.com/2015/03/downsizing.html?spref=bl">Growing up With Jared: "Downsizing"</a>: 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...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-32749717465589464462015-03-25T12:01:00.005-07:002015-03-25T12:01:55.148-07:00"Downsizing"<div dir="ltr" style="text-align: left;" trbidi="on">
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. <br />
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.</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-18510373133135844302015-03-07T13:57:00.001-08:002015-03-07T13:57:14.205-08:00Growing up With Jared: Happy Birthday My Son<a href="http://downsyndromedreams.blogspot.com/2015/03/happy-birthday-my-son.html?spref=bl">Growing up With Jared: Happy Birthday My Son</a>: 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...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-25345784449720800912015-03-07T13:52:00.000-08:002015-03-07T13:52:09.867-08:00Happy Birthday My Son<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
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.</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com2tag:blogger.com,1999:blog-3463775566996163713.post-6648678014148048702014-10-01T18:09:00.003-07:002014-10-01T18:09:51.798-07:00Growing up With Jared: Flying High...walking proud<a href="http://downsyndromedreams.blogspot.com/2014/10/flying-highwalking-proud.html?spref=bl">Growing up With Jared: Flying High...walking proud</a>: 3 nights a week, I pick Jared up from his pizza shop job before heading home for our family dinner. While I used to feel a bit put out that...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-42426781716055987862014-10-01T18:09:00.001-07:002014-10-01T18:09:40.416-07:00Growing up With Jared: Flying High...walking proud<a href="http://downsyndromedreams.blogspot.com/2014/10/flying-highwalking-proud.html?spref=bl">Growing up With Jared: Flying High...walking proud</a>: 3 nights a week, I pick Jared up from his pizza shop job before heading home for our family dinner. While I used to feel a bit put out that...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-56413771887123328942014-10-01T18:08:00.000-07:002014-10-01T18:08:55.670-07:00Flying High...walking proud<div dir="ltr" style="text-align: left;" trbidi="on">
3 nights a week, I pick Jared up from his pizza shop job before heading home for our family dinner. While I used to feel a bit put out that I had to go get him in the middle of making dinner, lately I've come to like that few minutes. I go early,park where I can see the entrance, and wait for Jared to come out. And when he comes out, he does the same thing every time and I watch, just for a few seconds. I watch as he navigates his world, assesses his situation, scans the lot looking for me. My hand hovers above the horn, because as soon as I beep, he will look left then right before striding out into the parking lot. I hesitate because I pretend, just for a moment that he is on his own, that he is like the scads of young men and women who go to work, get that paycheck, sighing with relief when the clock says it's time to go. When he doesn't see me, he reaches for his phone. I beep, because I want him to know I'm there. He sees me, hikes his backpack up onto his shoulder and walks out to my car. But he doesn't just walk; he sort of dances, some might call it a strut, yes a strut, definitely. As our eyes meet, I smile because I'm not quite ready for him to be on his own, but I'll get there. It will happen, sooner rather than later. The nice thing is, it will happen, and then I will fondly remember our pre-dinner rides back to the house, heads bopping in unison to whatever song comes from the radio. He still needs me now, but each day brings him closer to that time when he will walk out of work, and head home on his own.<br />
Happy Down Syndrome Awareness Month to all of you...</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-44210286892068286432014-09-13T11:41:00.001-07:002014-09-13T11:41:21.859-07:00College Dreams<div dir="ltr" style="text-align: left;" trbidi="on">
We dropped Jared's application in the mail today. He wants to go to college,and I have promised him I will do whatever I can to get him there. So, that's it....application in. Now we wait for a scholarship. You see, Medicaid won't pay for it because the program is not inclusive; isn't that ironic? Because Otsego Academy is a college for individuals with disabilities only and not open to the public, medicaid won't help Jared out. It's silly, don't you think? So we will wait for that chance, that chance for a scholarship that will make Jared's dream a reality. He just wants to live in a dorm, hang out with friends, and learn how to be even more independent than he already is. And if he does this around other people like him, I don't think that's bad at all. I think he will have fun. So, when the envelope was sealed and sent today, I felt some hope. Jared and I are going to hold onto that hope for a bit and see what happens. That must be what it feels like to have options, to do things even if others say it can't be done.</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com1tag:blogger.com,1999:blog-3463775566996163713.post-36683294503964385772014-06-16T03:20:00.001-07:002014-06-16T03:20:20.461-07:00Growing up With Jared: Brothers Still...<a href="http://downsyndromedreams.blogspot.com/2014/06/brothers-still.html?spref=bl">Growing up With Jared: Brothers Still...</a>: They argue; they fight; they say they will NEVER hang out when they are older. They wonder why Jared is so grumpy sometimes; their frustrat...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-33485394257895802182014-06-16T03:19:00.001-07:002018-09-25T12:04:29.237-07:00Brothers Still...<div dir="ltr" style="text-align: left;" trbidi="on">
They argue; they fight; they say they will NEVER hang out when they are older. They wonder why Jared is so grumpy sometimes; their frustration displays itself in the form of teasing, arguing, and tears. They ask when he is going to move out. The older one never says it, but I think he wonders who will "parent" Jared when I'm gone. He's nervous about that one, I know. That too, keeps me awake at night. I want to assure him that I am doing everything I can to make sure that Jared will be taken care of and that they will just have to love him. And they do; love him I mean. Because given all that they say, yesterday, when I followed the sounds of cheering and clapping and yells of encouragement, I found them...one holding Jared tightly and saying "peddle! peddle! peddle!" The other jumping up and down screaming, "You can do it! You can do it!" as Jared, flanked by his two brothers, with a huge smile on his face, peddled a much too small bike up and down the driveway. And each time, when he fell, they were there.</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-13677892570319140402014-05-02T03:32:00.001-07:002014-05-02T03:32:52.403-07:00Growing up With Jared: I've been thinking about Blanche, one of the tragi...<a href="http://downsyndromedreams.blogspot.com/2014/05/ive-been-thinking-about-blanche-one-of.html?spref=bl">Growing up With Jared: I've been thinking about Blanche, one of the tragi...</a>: I've been thinking about Blanche, one of the tragic characters in Williams' Streetcar Named Desire , a lot lately as Jared continue...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-21172572839262677252014-05-02T03:31:00.000-07:002014-05-02T03:31:05.902-07:00<div dir="ltr" style="text-align: left;" trbidi="on">
I've been thinking about Blanche, one of the tragic characters in Williams' <em>Streetcar Named Desire</em>, a lot lately as Jared continues to embark on this journey towards adulthood. You see, Blanche, on a few occasions throughout the play, states in that simpering voice of hers, "I always depend on the kindness of strangers". I think about this as Jared and we continue to craft for him a life that can exist without the daily management of us, his parents. Because, much as I would like to believe I will grace this earth forever, this is not true, and Jared needs to be in a world where he can depend on the kindness of strangers. I lack trust. We parents of kids with Down Syndrome have had a lot of disappointments and set backs raising these kids, and it makes us a little pessimistic; ok, it makes ME a little pessimistic. Why am I always surprised when people are nice to Jared? I seem to be always waiting for the proverbial second shoe to drop. So when things work out, and the world is kind, it still catches me by surprise. Take the people at Great Northern Pizza. I think they really want Jared to succeed! They have told him he is one of the managers now. And I can't think they are getting something out of this other than a young man who will work harder for them than any other employee there. Jared recently told me that, "Great Northern Pizza is my life! I love EVERY day that I work there!" I'm so happy for him when he says that. The kindness of strangers, now turned bosses, now turned friends, still surprises me every day. So, I think over the next few posts, I will be examining this kindness, because let's be real here; it HAS to exist, doesn't it? Because, right now, I'm holding on to it, tenuously, depending on it to be there for my son even when I can't some day.</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-71394698110485456862014-03-12T09:56:00.002-07:002014-03-12T09:56:41.357-07:00Mother Guilt<div dir="ltr" style="text-align: left;" trbidi="on">
Why is it that, when we have a child with special needs, we feel that we have to experience everything with them as they grow up? Is it like that for our typical kids? I think about that a lot lately, because Jared is growing up and finding his own interests and activities; he is involved with his new world, his grown up world with friends I don't know and a schedule I don't follow. Often, he goes to events that I used to frequent, probably because he needed me there to support him, and probably because I needed to be around other parents like me. So, now, he goes alone; he meets his friends wherever he is going. And I do things that don't include him. That has to be ok, right? Then why the guilt? Is it because we have been such an integral part of our children's lives since the day they were born, holding our breath as they navigated every step in their new world? Apologizing to society with words or a look when they did something that didn't quite fit the norm? Helicopter parents, not often by choice, but by necessity. When do we stop hovering and say to our adult child, "It is ok to go now. You don't have to look back at me over your shoulder to read my face in order to gauge my reaction. It is ok for you to not tell me everything. Frankly, I don't want to know everything. I want you to have safe secrets, young adult secrets that don't require my input"? You moms and dads out there with kids like Jared know that look. Our sons and daughters obtain so many social cues from our faces, don't you think? I look forward to the day that Jared too looks forward, rather than back at me and makes the right choices for himself, and goes through life his self-appointed master. Right now, I will continue to gently nudge him; however, I will give myself permission to let Jared do things without me having to be there, without having to organize and protect every last move that he makes. I will do right by him if I do that, don't you think?</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com1tag:blogger.com,1999:blog-3463775566996163713.post-27101603392873521892014-03-06T17:26:00.001-08:002014-03-06T17:26:56.076-08:00Growing up With Jared: 21 years 21 years...<a href="http://downsyndromedreams.blogspot.com/2014/03/21-years-21-years.html?spref=bl">Growing up With Jared: 21 years 21 years...</a>: On the night Jared was born, the book, the pregnancy bible said, "be sure to pack a snack for your birth partner. And so, when labor b...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-20939459494368268132014-03-06T17:25:00.003-08:002014-03-06T17:25:16.464-08:0021 years 21 years...<div dir="ltr" style="text-align: left;" trbidi="on">
On the night Jared was born, the book, the pregnancy bible said, "be sure to pack a snack for your birth partner. And so, when labor began in the wee hours of March 7th 1993, I packed carrots and a peanut butter and jelly sandwich on whole wheat bread for Jared's father to eat during labor and delivery. I packed peanut butter when I should have packed hope....and perserverance...and unconditional love....and humor; I would need a lot of that...and flexibility; I would need even more of that. And while I'm at it, that book would have been more aptly titled: "What to Expect When What You Expect Does NOT Happen". That would have been a good book I think. That might have prepared me for the next 21 years, years that began with a hearty cry from my infant, whom doctors would soon tell me was different than other babies. An infant that might not talk right away, walk right away, perhaps might not be the most independent of guys.... This was a time when the first books I pulled from the library used words like Mongoloid and Mental Retardation. And from these, I was supposed to learn? And so, the next 21 years commenced...<br />
If I had to classify these years, it might look something like this:<br />
Momentous-Jared surviving two heart surgeries, meningitis, and pneumonia; Possible-Jared dancing the night away at the Gigi's Playhouse Gala the other night. Momentous-Jared talking clearly and being able to tell me what he needs or wants; Possible-Jared giving a speech about shredding the R-word to an entire high school student body in a couple of weeks-twice! Momentous-Jared learning to walk and dress himself; Possible- a paying job at the pizza shop 3 days a week and courses at the local college... Momentous-Jared telling me, his mom, that he loves me; Possible-Jared telling his girlfriend that he loves her and wants to go to the prom with her and maybe marry her some day... Momentous- Jared hearing me sing to him after the doctor said he may lose all of his hearing when he was sick; Possible-Jared recording his first single where he sings of the love of that girl... Momentous-Jared learning that letters make words and words make sentences; Possible-Jared being the author of his own blog, one he created for parents of kids like him, he tells me. Momentous-Jared holding his fork and feeding himself for the first time; Possible- Jared walking to the car tonight after work with a bottle of hard cider from a co-worker that he has been charged to enjoy tomorrow, on his 21st birthday.<br />
So, you see, when what you are expecting to happen doesn't really happen as you thought it would, you still have those momentous occasions, but more importantly, you find out that so much is possible, that so much more than you ever thought, is possible.<br />
Happy Birthday to my son, my boy who just came up behind me and gave me a most precious gift, a kiss on my cheek, a cheek that is 21 years older and that has been softened by tears, by laughter, and by time...</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com7tag:blogger.com,1999:blog-3463775566996163713.post-73959521668551748122013-06-07T03:27:00.000-07:002013-06-07T03:27:47.757-07:00Finding it Hard to Believe<div dir="ltr" style="text-align: left;" trbidi="on">
He's standing on a chair in order to reach the gluten free instant oatmeal he bought just last week. His lunch is packed, along with a big bag of chips for the party they will have after the class talent show. And then, he will ride the bus home,for the last time. Graduation was last year, but it wasn't high school's end. This was the year of work study, of living half in the high school life and half in his grown up life. It's time now, time for Jared to stand out from under the umbrella of yellow school bus, classroom, and cafeteria. He's ready, I think. He carefully measures the water for his oatmeal and presses buttons for a minute of cooking time. And I watch, not sure what to feel. He joins the water with the oatmeal and pours himself some grape juice. This young man, once my smiling toothless baby boy is on the brink of his new life. THIS is the feeling of transition, I'm guessing. The last year told me it was a changing time, but THIS is the real thing...he stirs his oatmeal and sits to eat. I've done nothing for him this morning. And years ago, I thought I would have to do everything for him....he eats. The bus is coming soon.</div>
growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-43093404409411750082013-05-01T07:42:00.000-07:002013-05-01T17:48:03.558-07:00Maggie's Poem<div dir="ltr" style="text-align: left;" trbidi="on">
<img height="320" src="webkit-fake-url://E2470AEF-5C95-414B-A368-C29320CBC4DF/imagejpeg" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);" width="320" /><br />
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<span style="background-color: rgba(255, 255, 255, 0);"> </span><br />
<span style="background-color: rgba(255, 255, 255, 0);"> <b>She Walks in Beauty</b></span><br />
<span style="background-color: rgba(255, 255, 255, 0);"> 1<br /> She walks in beauty, like the night<br /> Of cloudless climes and starry skies;<br /> And all that's best of dark and bright<br /> Meet in her aspect and her eyes:<br /> Thus mellowed to that tender light<br /> Which heaven to gaudy day denies.<br /> 2<br /> One shade the more, one ray the less,<br /> Had half impaired the nameless grace<br /> Which waves in every raven tress,<br /> Or softly lightens o'er her face;<br /> Where thoughts serenely sweet express,<br /> How pure, how dear their dwelling-place.<br /> 3<br /> And on that cheek, and o'er that brow,<br /> So soft, so calm, yet eloquent,<br /> The smiles that win, the tints that glow,<br /> But tell of days in goodness spent,<br /> A mind at peace with all below,<br /> A heart whose love is innocent!</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">Lord Byron</span><br />
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growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-65004572660006998282013-03-17T11:17:00.001-07:002013-03-17T11:17:41.517-07:00Growing up With Jared: Good Night Sweet Prince...<a href="http://downsyndromedreams.blogspot.com/2013/03/good-night-sweet-prince.html?spref=bl">Growing up With Jared: Good Night Sweet Prince...</a>: I'm guessing that Jared has not had a dream for a couple of years. I'm guessing, too, that his body has not repaired; his mind...growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-47418264461235147662013-03-17T11:11:00.002-07:002013-03-17T11:11:19.406-07:00Good Night Sweet Prince...<div dir="ltr" style="text-align: left;" trbidi="on">
I'm guessing that Jared has not had a dream for a couple of years. I'm guessing, too, that his body has not repaired; his mind has not been sharpened. I'm guessing this because we recently found out that Jared has sleep apnea. Again, one more thing that happens to our children, one more thing they must face with grace, one more thing that makes it just a bit more of a nuisance to live, to exist day to day. But, I have to say, this is something that can be fixed. When you have a child with special health concerns, it is a relief when the next thing is something that can indeed be fixed, not with surgery, but with a shoebox sized device, a mask, and a long tube, a tube that will help my son breathe when his body gets in the way of his air. And the mask is not huge, thank goodness. Jared is worried about it, the mask, the machine, the stigma, that now he seems to get. The doctor told him it is private, this machine, that his door can close and that it is not something we need to discuss or tell anyone. Funny, Jared seems weary too, sometimes, sick of sharing with the world what makes him different. He gets it now. He looks to me for reassurance. "No one will see it, Jared; no one will know," I mimic the dr. (OK, except all of you who read this, but please don't say anything to Jared...) "But what about when I get married? What then?" "Then it is that last thing you do at night before you go to sleep, the very last thing." I tell him this, but I'm selfishly angry too. Same old song: our kids have Down Syndrome, so let's give them a bunch of things to deal with; let's make it a whole package, that continues to surprise them as they grow. But here's the thing: out kids are so damn resilient that they deal with the medications, the surgeries, the allergies, the...I could go on and on. They not only deal, but they wake up each day and go out into the world, ready to live, with a smile on their face and an eagerness to connect with everyone with whom they come into contact.<br />
So, when you see an individual this week with Down Syndrome, this week that will celebrate International Down Syndrome Awareness Day on Thursday, the 21st, take a minute to understand what it takes for some of these kids to get out of bed every day and face challenges every day and touch lives every day and love every day. And use that minute to balance yourself, to think about how we all might go through our days and rather than dragging our baggage, lifting it up high above our heads as if to tell the world, I got this; I can handle this, and I can see goodness over and over again.<br />
And tonight, when Jared and I go to the sleep center at the hospital and he gets his machine, my heart will soar because my child, my very tired child will finally rest.<br />
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growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com0tag:blogger.com,1999:blog-3463775566996163713.post-88460418018063420532013-02-14T06:14:00.001-08:002013-02-14T06:14:16.691-08:00Happy Valentines Day!<div dir="ltr" style="text-align: left;" trbidi="on">
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growing up with jaredhttp://www.blogger.com/profile/09829312269568434530noreply@blogger.com1