Growing up With Jared: I've been thinking about Blanche, one of the tragi...

Growing up With Jared: I've been thinking about Blanche, one of the tragi...: I've been thinking about Blanche, one of the tragic characters in Williams' Streetcar Named Desire , a lot lately as Jared continue...

I've been thinking about Blanche, one of the tragic characters in Williams' Streetcar Named Desire, 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.

Mother Guilt

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?

Growing up With Jared: 21 years 21 years...

Growing up With Jared: 21 years 21 years...: 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...

21 years 21 years...

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...
 If I had to classify these years, it might look something like this:
 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.
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.
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...

Finding it Hard to Believe

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.

Maggie's Poem

      
      She Walks in Beauty
                                      1
    She walks in beauty, like the night
        Of cloudless climes and starry skies;
    And all that's best of dark and bright
        Meet in her aspect and her eyes:
    Thus mellowed to that tender light
        Which heaven to gaudy day denies.
                                      2
    One shade the more, one ray the less,
        Had half impaired the nameless grace
    Which waves in every raven tress,
        Or softly lightens o'er her face;
    Where thoughts serenely sweet express,
        How pure, how dear their dwelling-place.
                                      3
    And on that cheek, and o'er that brow,
        So soft, so calm, yet eloquent,
    The smiles that win, the tints that glow,
        But tell of days in goodness spent,
    A mind at peace with all below,
        A heart whose love is innocent!

Lord Byron