Wednesday, October 10, 2012

There is a Place

Recently, a friend of Jared's, a senior in high school, a young lady who absolutely loves to sing, was told that, due to a lack of teacher aide coverage, she would be able to just sit and watch the choir sing every day. Sit and watch?! Our children have often been the ones who have to sit and watch while others go to the mall or hang out with friends, or drive, or go to college.  Sure, out kids go to the mall; they hang out with friends, but these are arranged, social times sorted out by parents, organized by those of us who want our kids to have opportunities to be teenagers.  And while these are good and wonderful opportunities for them, it is hard sometimes for out kids to just be, to just do.  So, they sit and watch.  They watch the limousines spill out typical peers in front of prom; they watch as the students who graduated from school last year go off to college, to a life unfettered by "parental arrangement".  So, when they are asked to stay to the side of the group, to sit quietly and take in the songs of those other students who don't struggle with voice, pitch, or tone, it saddens me.  Our children do sound different, but one thing I find when Jared sings with a large group, be it church choir or last year's school chorus, is that my ears strain to hear that voice, albeit untrained and sometimes wavering, and yes, sometimes way out of tune.  I am glad that his distinct sound helps my ears find his music.  It doesn't much matter how it sounds, but that it is heard, don't you think?

     So, it is with this story in mind that I want to share something.  I want to tell of a place, Gigi's Playhouse, where young parents can come to grips with what it means to have a baby with Down Syndrome, a place where our kids can get help with reading, writing, and math; a place where there is a stage where all are welcome to sing, to act, to dance, and where it doesn't matter if you are unable to carry a tune, or can't always get your body to do what it is supposed to do.  I share this because, while the world is getting better at accepting that there are differences, we still need to get better at figuring out that everyone needs a place to belong.  For now, we have buildings and groups of fantastic people pulling for our kids, fighting for their footprint to grow.  Let's hope this is just a start; that Gigi's Playhouse will model for the world, in its own small way, that no one needs to sit on the side and watch, that we can all get up on that stage and have our voices heard.

Thursday, August 9, 2012

Growing up With Jared: It's the Same...but Different Part 2

Growing up With Jared: It's the Same...but Different Part 2:      When we dropped Jared off for his week-long college experience, we got a hint of what it must be like to leave a child in a new place,...

It's the Same...but Different Part 2

     When we dropped Jared off for his week-long college experience, we got a hint of what it must be like to leave a child in a new place, with new people, so,  like millions of worried parents before us, we did the only thing we knew to do; we puttered.  We helped Jared take his suitcase and bedding to the suite that would be home for him and his two roommates for the next 5 days. My husband did what a lot of fathers must do in similar situations: He hooked up Jared's phone and made sure Jared was aware of where to charge it. As this was going on, I did what millions of mothers before me have done: I embarrassed my son, pulling out and storing underwear and socks in the bureau, not without Jared telling me to "stop waving his underwear around for everyone to see!"  It occurred to me as we stood in that dorm, that this would be the first time that our eldest son would be away from us without staying with or traveling with another family member. Jared's brother Jake confirmed this for me as he stood pensively watching his big brother make his bed with the help of his roommate. Jake said, a couple of times, "I hope Jared is ok." "He will be," I assured him (and myself) "He'll have a blast!"
     Jared pushed us out then. "You can go now. I'll be fine!" Leaving was strange, kind of like walking away as an invisible string held me to my boy, my oldest son, my Jared.  The same string, I'm sure, that has bound millions of mothers and fathers before me to their fledgling children; the same....but different. You see, Jared will be coming home in a few days, but now there is the possibility that there will be a time when a few days will stretch and when Jared really does go to his adult life and we are the place he visits.  But now, Jared will be back home in a week; a brief stay at "college", but a giant step on this journey.  When he was a baby, he walked; he was 21 months old, but he walked.  Last night, he told me I could leave. He is nineteen years old, but he told me I could leave. Read on...

 Texts from Jared's first night at college:

 Mom: Hi Jared! Put the Iannotti's phone number on your desk!
Jared: OK
Mom: Are you having fun? Remember to let the food people know you are gluten free!!!!  Love you!!!!!
Jared: Love you too
Mom: Is it awesome?
Jared: Yes. Stop texting me.
Mom: OK! Sorry! Bye!!!!

Monday, July 30, 2012

Growing up With Jared: It's the Same...but Different Part 1

Growing up With Jared: It's the Same...but Different Part 1: Jared says that a lot, when he notices someone wearing a similar shirt, or eating something that he's had before: "It's the same, but diff...

It's the Same...but Different Part 1

Jared says that a lot, when he notices someone wearing a similar shirt, or eating something that he's had before: "It's the same, but different."  I always chuckle when he says that. "Then Jared, it's not really the same, is it?" I say.  But I think I know what he means now when he says that.
     This past weekend offered yet another transition for Jared, that from graduate to "sometimes college student."  He is participating in "college for a week": a New Visions program offered at a local community college.  Individuals with special needs go live in the dorms, eat in the dining hall, and take life skills classes.  Since Jared has been saying he wants to go to this particular school when he is done with high school, we thought we would check it out.
     So, this past Saturday, Jared and I went to Target to "college shop".  As we stood there pondering toothbrush holders and travel-size sunscreen, I found myself asking him questions like, "What color soap dish do you want?" and "Make sure you pick up a toothpaste."  I said these things when people were close.  I wanted them to know that my child is going places, that like the tall boy with his stack of sheets and case of powerade, my son too is going to college. It's the same...but different.
     Jared treated me to sushi after our shopping spree (thank you to those of you who gifted Target at his graduation party!)  I  sat across from my son.  Again, I found myself thanking him for buying me lunch, thanking him so the people around us heard.  I'm not sure why I do that; Maybe I'm trying to prove to them that my child is growing up too, that he is a son to be proud of.  I think I'm convincing myself too.  He is a spectacular person, my son.  He's the same...but different.

Monday, July 16, 2012

Everybody Needs a Safe Place

There is a group of people who are out to change the world, to make it a better place for our kids. Thank you Ally and the rest of the board of GiGi's Playhouse Syracuse! Thank you for building a place for our kids to BE! Copy the link below and paste it into your browser to see what I mean! So exciting!

Saturday, July 7, 2012

Growing up With Jared: Now what?

Growing up With Jared: Now what?: I just noticed the wallpaper on this blog. It features a road going off into the distance. I never thought about it, but it's a symbol, real...

Now what?

I just noticed the wallpaper on this blog. It features a road going off into the distance. I never thought about it, but it's a symbol, really, of this path that Jared is on. It feels a bit like limbo, where he is right now. He has graduated from high school, and with that comes the promise of independence and new journeys. But given the fact that Jared has one more year at high school, labeled by someone at some point as a " super senior" year, He's not quite finished with this part. I am adamant that next year does not look like last year. Jared HAS graduated. So, his days next year, will consist of few academic classes and mostly work study. A search, I guess, one that will result in a future for my son. I'm a bit scared. This is a strange time,an ending time, but not quite. A beginning time, but not quite. I invite you all to come with Jared and me now. Perhaps you might offer some ideas, some answers,some understanding for this next step on that long road. Right now, as I write, Jared is entertaining his little brother at the YMCA. They play basketball; then Jared buys his brother a snack,and they sit and chat, a grown-up thing really.

Thursday, June 14, 2012

Growing up With Jared: Readying the House

Growing up With Jared: Readying the House: Last night, I went out and bought one of those air beds because my parents are coming soon, and the futon is just not big enough. On a prev...

Readying the House

Last night, I went out and bought one of those air beds because my parents are coming soon, and the futon is just not big enough. On a previous visit, Dad had gotten up quickly and proceeded to dump mom onto the guest room floor, so I think their sleeping arrangements need to be made a bit safer. So, back to my story...As I drove home, blowup bed next to me, I remembered, 19 years ago, buying a sleeper couch on what turned out to be the day before Jared arrived into this world. Like now, we needed an extra bed because a new baby was coming, and with a new baby come guests. Guests like my mom and my dad, my sisters and brothers, friends,... I remember setting up the sleeper couch, filled with excited anticipation of the arrival of the baby boy who was due any day.  A day later, Jared came, and my life changed. I'm glad for the bed, for the guests that came. When they arrived, however, it was not to celebrate exactly, but to console a young mom who, frankly was pretty scared and devastated at the swift turn of events. One of the first guests to arrive was my mom. I still can picture her, all those years ago as I walked down the stairs of the townhouse and saw her sitting cross-legged on the pull-out couch with my tiny baby looking up at her. She was taking each arm, each leg and moving them around, talking non-stop to this baby with some of the silliest faces I had ever seen. She was treating him like a baby, like her grandchild, not like an individual with Down Syndrome.  She was playing Mozart and waving 2 or 3 of those shiny mylar(sp?) balloons just within his sight. "Stimulation!" she said in that no nonsense way of hers, that voice known to me for 26 years. We laughed then. I remember, because I wasn't laughing a lot those days. "Talk to him all the time," my mom told me. "Expect him to do everything, and he will." I took her advice, and I have been talking to Jared all the time. I have expected him to read, to play, to do his laundry, to stay home alone, to have a girlfriend, to go to the prom, to be on TV, to be a big brother, to graduate, to work, and he has, and he will. So the bed is ready for the arrival of guests this weekend. My mom and my dad, my mom who has always expected and demanded the success of her children and of her grandchildren, and my dad, who was there to hold me when I cried in the hospital 19 years ago.  I expect he will provide a shoulder for me again this weekend as Jared walks across that stage, and I know that Mom will be standing next to me cheering for that boy. I ordered some balloons. I made sure to order a shiny one too. She'll like that, I think.

Tuesday, May 8, 2012

Growing up With Jared: Another Chapter Begins

Growing up With Jared: Another Chapter Begins: There are signs around the house...announcements next to envelopes waiting to be stuffed, a t-shirt with "Seniors 2012" written down the ...

Another Chapter Begins

There are signs around the house...announcements next to envelopes waiting to be stuffed, a t-shirt with "Seniors 2012" written down the side, an unopened letter from the local community college.  My son is graduating; sort of the end of one journey, and the start of another.  My job lately seems to be that of "transition director".  "No," I tell Jared, "you won't do chorus at school next year. You are a member of the church choir now.  No, you won't take regular classes when you walk back into the high school next year; work studies, five days a week, will fill your time.  No, you won't wrestle on the team; you will be the manager.  You will wear the coat they gave you at the banquet, and you will help out where you can."  I think I say these things more to define for me the role of my graduating son.  Hearing it out loud makes it easier for both of us to accept, with excitement, yes, but also with some trepidation, that things are changing.  I would be lying if I said I didn't have twinges of "graduation envy" as I look around at the other seniors who are leaving those hallowed halls to pursue dreams of their own.  The dictionary defines "to graduate" as to receive a degree or diploma on completing a course of study; or to pass by degrees, to change gradually.  I guess that Jared's situation best matches the latter.  There is change happening, yet it is gradual change, and once again, I have to be content with that.  I will be content, but not without some reflective struggle as, once again, Jared must define his place in the world.  He is ok with it, I think.  He wears his senior t-shirt with pride, looks forward to taking Gabby to the ball, and waits with anticipation to walk down the aisle to receive his diploma, his degree, as he changes gradually.  And I stuff the envelopes, trying to remember all of the people who have touched my boy's life (there are so many), while thinking about the cake (there needs to be a gluten free option), and how I might decorate the tables.  And the music; there HAS to be music. Jared wouldn't have it any other way.  And neither would I.

Saturday, April 28, 2012

Present Past Future

Recently, I picked Jared up from his volunteer job at the Y. When I got there, I couldn't find him. One of the workers told me that he was in the back offices. Of course, I thought,"Ok, what did he do now?" (oh ME of little faith...), however Jared walked out with a smile on his face. I asked him what he had been doing and he told me he had a conversation with one of the staff coordinators wherein he asked what  employment opportunities might be available for him upon graduation! 19 years, and my son still surprises me!I was so impressed with him! I congratulated him on his initiative, and as we drove home, we continued the discussion of his future. We talked about where he might work, what he might do, how he might make his mark on the world. As we pulled into the driveway, I turned to him and said, " I know a perfect job for you!" As he looked at me, I told him, "You could meet with couples who have recently had a child with Down Syndrome and tell them your life. You could share pictures and stories!" and then I said to my almost grown son, "If YOU had come to see me when you were born, I would have been ok." Two sets of blue eyes filled with tears as we held hands for a brief moment. I know Jared got me right then. I know he understood.

Thursday, March 8, 2012

Simple Gifts

It's funny, after posting my latest blog today, I heard from so many people who have been there for the last 19 years, and actually, for many years before that even.
I will never forget my mom, coming to spend the "new baby" days with me. Telling me it was ok to cry, while teaching me how to take care of a baby and to be a mother. Because that's who Jared was first and for most,a baby,even if I had trouble seeing it at the time. I remember my big sister Cheryl, upon hearing of Jared's arrival,flying from DC into a snowstorm, and even when her plane was re-routed to another city, renting a car with a perfect stranger who was heading towards me so that she could take care of her little sis, just like when we were children. I don't know if she really knows what that meant to me, how much I needed her at that moment in my life. I remember my friend , Sharon, who came to the door the night we brought Jared home. The doorbell rang, and when I opened it, there she stood with champagne in her hand, arms stretched out ready to hold this baby, chipping away at the shame I had from having a baby who was just shy of perfect. And my sister, Kathy, who gave me permission to be mad, to say,"this sucks, this really sucks." funny, I don't think I have ever heard her say that word again. But I needed to be mad for awhile, and she knew that.
So, to the women in my life who were there when I needed them so damn much, I thank you. And I want you to know that, without your support and love and laughs, this journey would have been so much harder. I love you all.

Growing up With Jared: Passing T.ime

Growing up With Jared: Passing T.ime: So, yesterday was Jared's 19th birthday. I went through the day, kind of in split-screen mode: one side on the day and the other side on a d...

Passing T.ime

So, yesterday was Jared's 19th birthday. I went through the day, kind of in split-screen mode: one side on the day and the other side on a day 19 years ago. It went something like this:

Yesterday: Jared woke around 5:45, as he always does, made his own breakfast and got ready for school, walking out the door before 7 with his tupperware of chocolate gluten free cupcakes.

19 yrs ago: The doctors and nurses came in to tell me that my baby had many features associated with Down Syndrome. One doctor told me that we couldn't be sure that the child would talk, or when he would walk.

Yesterday: Mid-morning,Jared shared his cupcakes with his friends in science class.

19yrs ago: Mid-morning, I attended the "new mom" orientation (the one you had to take before leaving the hospital) with my baby, but making sure the blanket covered much of his face. I didn't want those moms, the ones with the perfect babies, to see mine.

Yesterday: Jared went to his work study at the nursing home, where the staff sang to him and an elderly gentleman slipped him a 5 on the sly for his birthday.

19yrs ago: I sat, crying in a hospital room, thinking that very little good lay before this child.

Yesterday: Jared took the bus to the YMCA, where he swiped cards for people and then worked out with his friend.

19yrs ago: The word, mongoloid, still lived in the reference books about our children.

Yesterday: At dinnertime, we dropped by the Y to get Jared on our way to his restaurant pick. As I walked in to get him, he was already heading out to meet me. I asked him how he knew I was coming. He said, something told him I would be coming and he wanted to meet me half way.

19yrs ago:  At dinnertime, I fed my son for the first time, and when we locked eyes, something must have told him that I would be meeting him; it would take awhile, but I would eventually meet him half way.

Yesterday: In the car on the way to dinner, Jared gave his brothers presents: a pack of m & m for his little brother, Bray, that he had received at his work study, and a watch for his other brother Jake, the one with the alarm that he can't seem to figure out.

19 yrs ago: Jared gave me a present that I wasn't ready for: a life where I would learn patience, compassion, and grace.

Happy Birthday to my son.

Tuesday, February 7, 2012

Growing up With Jared: When the Polish Chips and Fades

Growing up With Jared: When the Polish Chips and Fades: My hands tell a story, I think. You know how you can look at someone's hands and even if their face looks young, it's the hands that give ev...

When the Polish Chips and Fades

My hands tell a story, I think. You know how you can look at someone's hands and even if their face looks young, it's the hands that give evidence of how many years have passed? So, I looked at my hands today. While the world can look at my face and see this cheerful, lighthearted person,  my hands tell a different story. Don't get me wrong; I'm happy, blessed in a multitude of ways, but I would be lying if I said that having a child with special needs was not stressful at times. These last couple of weeks, with the applications and forms that come with  Jared's growing up, have been a little rough, to say the least. And it is my hands, my dry, cuticle shredded hands that are telling a story of their own. So, what do I  do? Yoga? Wine? Continue to chew my nails? No, I think I'll take the wine, and perhaps the yoga. But, I will also look at my children, my husband, all around the table tonight, and I will count my blessings. And for all you other mothers out there? It will be ok; you might just have to get a manicure or two...I guess that wouldn't be so bad now, would it?

Tuesday, January 31, 2012

Growing up With Jared: The Broken People

Growing up With Jared: The Broken People: We sit among the broken people, young, unwed mothers with babies not much younger than they, a gentleman just out of a correctional facility...

The Broken People

We sit among the broken people, young, unwed mothers with babies not much younger than they, a gentleman just out of a correctional facility downstate, a widow, twisting her hankerchief, my son and I.  The conversation goes something like this:

Jared:  I don't want to go away from you and John.  Who will take care of me?
Me:  Don't worry, Jar, even if you move away from us, we will always take care of you.
Jared: But what if you die?
Me: Then John will make sure you are ok.
Jared:  But what if John dies?
I turn in my chair and face my son, a promise in my eyes as I say:  "promise you that you will always be cared for. If we leave, then there will always be someone to take care of you, to make sure you are safe. To make sure you are happy."
Jared: OK, mom

And we sit, for another hour while the papers we brought with us, the ones that declare my son as a person with a disability, are shuffled through, copied, then paperclipped again, then  handed back to me to be put in a folder labled, Jared-SSI.
Jared notes that the folders I hold are really thick.  "Do my brothers have as much paperwork as I do? " he asks. "No," I tell him. You are the lucky one, the one with the most papers. " And we sit. The man from prison assures the young social worker next to us that he was discharged from that facility downstate, that he would have brought the papers with him if he knew they would be needed.  We sit, next to the young Asian boys, fingers furiously playing at their laptops, as they converse animatedly in their native tongue, procuring the proper paperwork, that I assume allows them to stay here to continue their studies. We sit, as a young mother, barely 15, comes in with her son and his suspicious cough.  So much struggle in this space. And to be a part of it yesterday was exhausting, yet another reminder of our differences, Jared and me.
And finally, we leave; the proper papers have been filed. The appropriate questions have been asked.  We've supplied the answers they require.  We ride the gray elevator down four floors and walk toward the metal detector. Jared reminds me to pick up my phone from the armed guard standing near the door.  And we walk through, my son and I. We walk to the car, get in. I turn on the music, and it's a song that Jared and I both love. As we drive, I reach over, ruffle his dirty blond hair, and we look at eachother and smile.