Growing up With Jared: Trimming the Tree

Growing up With Jared: Trimming the Tree: Every year, it seems that the time to decorate the Christmas tree comes faster and faster and the boys get bigger and bigger. This year was ...

Trimming the Tree

Every year, it seems that the time to decorate the Christmas tree comes faster and faster and the boys get bigger and bigger. This year was particularly poignant in that much of the decorating of the tree has become the their job. Yes, I still am a bit controlling about where the hockey player ornaments hang (bottom bows, near the back of the tree), but you know what I noticed? I didn't move the ornaments as much as I have in past Christmas seasons; you know the move: when the kids aren't looking, you surreptitiously move a particularly heavy ornament from a weak and droopy branch to a sturdier one on another part of the tree, or you come down early the next morning and "re-hang" the ornaments where you "really" think they should have gone in the first place, or certain ornaments that were there last year (the scary looking reindeer with one eye missing or the chipped gingerbread man, you know the ones I mean) fail to find their way out of the box. But not this year. This year, the ornaments are staying right where the boys, our growing and busy boys, chose to put them. Our youngest had a conference with my husband about the best place for those hockey players before setting up a scrimmage under a needled roof. Our middle child reached the tallest branches for us. And Jared carried up the heaviest boxes from the basement for me, claiming, "Geez Mom! This isn't heavy at all!" And for him, it wasn't, not anymore, not this year. At one point, Jake asked my husband and me how he would have enough ornaments for his own Christmas tree when he grows up and moves out.  I told him not to worry; ornaments have a way of accumulating over the years. That's the fun part of it.  But it struck us; the boys are growing up. It won't be too many years before they are hanging their own ornaments on a tree that they pick out themselves. I'll probably give them each a hockey player.

Growing up With Jared: Thanksgiving

Growing up With Jared: Thanksgiving: Seemed like an appropriate, if cliche time of year, to put some of my "thank-you's" down... I am thankful for Mr. Z a quiet man who is alwa...

Thanksgiving

Seemed like an appropriate, if cliche time of year, to put some of my "thank-you's" down...
I am thankful for Mr. Z a quiet man who is always there to help Jared be a part of the wrestling team.  I am thankful for all of those people who stand by our most vulnerable and who give up part of their life to enrich other's. They don't have to do that, but they do, and for that I am thankful. I'm thankful for the Special Olympics coaches who always, always have smiles and support for the athletes.  I'm thankful for the teens in the Friend to Friend program who take time to hang out with the kids in the high school with special needs; the ones who have the same desires for goofy fun that we all did as teenagers. And I'm thankful for those same Friend to Friend volunteers who don't wait for an official meeting to talk with the boy with autism or to make the girl in the wheelchair laugh. I'm thankful for our church community and for all the moms (and some of the dads) who cried yesterday when Jared sang, "Let Their be Peace on Earth", his voice ringing through the building and envleloping all who were there with a love so strong that I'm sure God was in the room with us.  I'm thankful for the babies Jared will hold even though he will not have a child of his own to raise.  I'm thankful for the moms who encourage their children to accept Jared's offers of love and care.  I'm thankful for my husband, who stands by me, unwavering when I lose it, supporting me when I'm scared about the future, but most importantly, telling me how funny I am, how he admires that, more often than not, I face the world with a smile and with an optimistic view that paints everything as just right.  What I don't tell him is that it is his support that lends to that bright outlook.  And you know what?  I can't think of anything that went really right when I faced it with negativity.  I'm thankful for my sons, my strong, handsome, and funny almost 15 year old, who even when Jared drives him crazy, still takes care of him and would protect him against anything, and my silly, sweet, beautiful almost 8 year old (whom I heard singing "Let There be Peace on Earth" in the kitchen last night when he didn't know anyone was listening.) I am thankful for the doctors who fixed Jared's heart so many years ago and the nurses who protected my baby like mother tigers.  I'm thankful for all of the doctors and nurses in the world. You have the bravest jobs.  I'm thankful as I hear my children stirring this morning while I write this. Jared has been up since before me, his brother is packing a lunch, and another brother burrows under his covers on this cold November morning. This holiday time morning, let there be a peace so strong that it is palpable, that you feel the warmth of that peace as you look around and think about what it is that you are thankful for.
God Bless you all, and happy Thanksgiving.

Growing up With Jared: A Good Life

Growing up With Jared: A Good Life: Last night, my sister and I attended a meeting on what will be the next step for Jared, for all of us. The meeting was about "self-determina...

A Good Life

Last night, my sister and I attended a meeting on what will be the next step for Jared, for all of us. The meeting was about "self-determination". Gone are the days when people with special needs end up in day habs stuffing envelopes once they have aged out of school.  At least, I hope they are gone, and if they are not, they should be. Since I am just at the beginning of this journey, I won't even attempt to explain the whole thing, but the goal of self-determination is to put the individual's future in his hands as well as in the hands of a select group of people who agree to support him.  I would be lying if I said that I have complete trust in the system, but I do really hope that this means that Jared will be able to have a life where he is the center, where, when I am gone, he doesn't feel the gap; he can go on, without me.  That has always been a fear of mine, leaving Jared on this earth without me. Did I ever tell you about the time I first found out about the hole in Jared's heart? He was a baby, and I was a sad and scared mother. He and I were in the car, driving home after one more seemingly hopeless dr. visit where I was again, baraged with all that was wrong with my baby. For a split second I thought that if I could just turn the wheel quickly,  this baby boy would never have to be scared, never have to go at it alone.  Thank goodness, the thought was not fully formed before logic immediately smothered that moment of insanity and tucked it far back in my mind.  So I drove on, into a life that, while difficult and confusing at times, still has given me so much joy and so much wonder as I look at that now 18 year old baby, packing his wrestling bag and rushing out the door into senior year with more gusto than I ever had.  I'm glad I didn't turn that wheel. Even though my mind reels at times at all I need to do to raise this boy, I'm glad I kept that car on the road, and I'm thankful for the people who have been helping me drive for the last 18 years. 

Growing up With Jared: Sweet Nothings

Growing up With Jared: Sweet Nothings: The other day, as I was cleaning the kitchen and Jared was having some dessert, Gabby called...I think maybe this might have been the 4th or...

Sweet Nothings

The other day, as I was cleaning the kitchen and Jared was having some dessert, Gabby called...I think maybe this might have been the 4th or 5th time that they had talked that day...Now, most of us would run out of things to say at some point, or perhaps get bored with the whole "girlfriend-boyfriend" talking thing, but not those two.  I found myself smiling as I listened to the two of them, talking, laughing, pausing for really long times, but they were so okay with that. Content to just hold eachother through the phone lines, happy to just be. I told my husband later that I am so pleased that Jared and Gabby have eachother, and that often the highlight of their days are just to hear eachother on the other end of the phone. They are lucky, those two. And I am so so grateful for Gabby and for who she has been in Jared's life.  My son, my sweet boy/man has Down Syndrome, but he is still able to enjoy the company of someone who thinks he walks on water and someone who ,I'm sure ,Jared feels hung the moon. 

Growing up With Jared: Better Luck Next Time

Growing up With Jared: Better Luck Next Time: Wanted to post quickly to let you know that while the woman with whom Jared auditioned wanted him for the film, the director felt that Jared...

Better Luck Next Time

Wanted to post quickly to let you know that while the woman with whom Jared auditioned wanted him for the film, the director felt that Jared looked too young for the part. It makes sense because they were looking for a guy 18-30 years old, so we were pushing it with Jared.This was such an exciting experience for Jared and he handled it all so professionally. I wish I could be as "in the moment" as Jared is. He approaches the world looking neither backward nor forward, only reveling in the "now". I think I might try that.  Makes life a little sweeter that way, you think?  Thank you all so much for your support.

Growing up With Jared: Walking the Red Carpet

Growing up With Jared: Walking the Red Carpet: Having been so incredibly busy lately, I have not had a chance to write, but needed to get the message out to all of my faithful readers abo...

Walking the Red Carpet

Having been so incredibly busy lately, I have not had a chance to write, but needed to get the message out to all of my faithful readers about Jared and Gabby's debut on the webseries, Landing in Mumbai found at Mumbaichopra.com !  Natasha Chandel is the writer and one of the sweetest people we've ever met! And the crew? Just like family even after one day of shooting! I encourage you all to watch this season and to tell everyone you know about this quirky and fun comedy!  The new season starts on Sunday night. Visit Mumbai's website for more information. I think Jared and Gabby appear a few episodes in. I'll let you know if I find out exactly when.
In other news, and at the risk of my husband calling me Mrs. Lohan....meaning it in the nicest way, I'm sure...I have to tell you about another opportunity that Jared had recently! He was considered for a part in an independent film that will be filmed in NYC later this fall. Jared met with the filmmaker and even read through some lines with her. We are not sure it will work out because they are currently looking for a place for Jared  to stay while filming. If that doesn't work out, it is so ok. Then it wasn't meant to be, but the cool thing is that Jared, once again, got to live the life of an actor, something he is so good at!  As a matter of fact, when Jared was going over his lines at one point, my husband bounded up the stairs thinking Jared was really having a serious meltdown and yelling at me! Too funny! The kid is good! And you know what? When Jared was born, not being able to find a place for him to stay in NYC while filming an independent film was NOT one of the problems I expected to have! Ahhh life....

Growing up With Jared: "This is How We Do it in Love Town"

Growing up With Jared: "This is How We Do it in Love Town": I came up with the title of this blog entry after hearing Jared tell Gabby those exact words after the two of them finished rocking out to a...

"This is How We Do it in Love Town"

I came up with the title of this blog entry after hearing Jared tell Gabby those exact words after the two of them finished rocking out to a song in the back seat of the car as we headed down the highway to New York City this past weekend. Gabby's mom, Cheri and I laughed our heads off and decided that Jared's statement would make a great t-shirt! As I said, we were on our way downstate so that Jared and Gabby could be filmed for an up-coming webisode on Landing in Mumbai, a quirky and funny comedy about the materialistic daughter of a spiritual guru. We shot on Roosevelt Island, Queens during an 11 hour work day on Sunday, Septemeber 11th.  Jared and Gabby were fantastic, never stopped smiling and barely stopped holding hands.  But the other stars of that day were the the producers, crew, and other actors.  They treated Gabby and Jared with total respect, like teenage actors, not like kids with Down Syndrome. They didn't patronize our kids, an innocent mistake often made by people intending only kindness.  They were real with our kids, and it was incredible and moving to watch. Cheri and I trusted them-good people. I'll never forget Natasha opening her home to us between shoots and working with the kids so carefully, Vishesh hugging the kids at the end of a very long and moving day, Josh smiling, always smiling and inviting us to watch the shoot, the "mean girls" hugging Gabby between shots to assure her that this was just play-acting, Rob sweetly helping Gabby with her lines,Fabio gently standing by with the boom, all of them exuding a patience that I could not imagine to have. An all inclusive group, not false in any way. So, if you get a chance, watch this incredible show; laugh along with the diverse cast of characters. I'm sure I'll be watching. http://www.mumbaichopra.com/

Growing up With Jared: University at Zoo Camp

Growing up With Jared: University at Zoo Camp: This has been a strange week for me; my mind has not been in the game. That might explain the large dent in my front fender from where the ...

University at Zoo Camp

This has been a strange week for me; my mind has not been in the game. That might explain the large dent in my front fender from where the garage door jumped out at me.  It also might explain the tears that have been quick to come these past few days.  Every once in awhile I have a pity party. Usually a car is not damaged, but my defenses do go down as my emotions well up. You see, in a perfect world, Jared would have been going to college this weekend.   We would have driven up or down the thruway, car packed to the hilt with comforters, computer and Mountain Dew where, once we reached our destination, we would drop Jared, and after a few hugs and tears, would drive away, leaving him to his next stage of life. 

Instead, I found myself driving Jared to Zoo Camp. Don't get me wrong; it is a wonderful program, and Jared absolutely loves spending time there with his friends putting together acheological type offerings consisting of bones taken from owl scat, but it still strikes me sometimes- I have a child that is on a different journey than I expected.  As I stood chatting with one of the dads after dropping Jar off one morning, the subject came up, and I sort of choked out, "I would have been dropping Jared off at college this weekend," to which my friend replied, "M--- would have been just finished with college."  A moment, a connection between two parents who, every once in awhile, have to readjust the dream.  I think this is a part of having a child with special needs. There are smooth patches that seem to go on forever, but once in awhile, life has to remind us that we are not in control of what we are given; we are, however the ones who can refocus and redirect our dreams so as to meld with our child's experiences. And Jared has a beautiful hand-crafted bird house that he wants to give to Gabby the next time he sees her. 

Growing up With Jared: The Fife and Drum

Growing up With Jared: The Fife and Drum: "I read an article in the New York Times recently in which a neurosurgeon offered an explanation of what it might be like to have that extr..."

The Fife and Drum

I read an article in the New York Times recently in which a neurosurgeon offered an explanation of what it might be like to have that extra 23rd chromosome.  From his research, he was able to gather that what happens to our kids because of this extra chromosome is that an onslaught of stimuli often crowds the brain and causes confusion.  Perhaps that's why our kids struggle when there are too many outside variables, when it's loud and confusing, when they freeze or withdraw.  There's just too much coming at them for them to handle.  It makes sense.  I've seen Jared when too much of the world comes at him at once.  Nothing good ever comes of that. So recently, when we toured Williamsburg, Virginia, particularily the military camp, I saw what happens when clear, simple directions are given to Jared. He thrived as he play-acted a pre-revolutionary soldier.  When Jared fell in and received the barked orders from the Sargeant, he knew exactly what to do! The clarity and precision of the orders enabled Jared to receive and act right along with the other volunteers on the field. His "Yes Sargeant!" was the loudest, the most passionate. He really felt a part of something! He followed the directions to the very best of his ability. Frankly, the armed forces would probably embrace the dedication exhibited by Jared in just a few minutes of this revolutionary role play.  After Jar was done, he came over to me and said he wanted to be in the army.  Oh, to have seen that light in his eyes! His little brother looked on, and then later approached me asking if Jared will really be going in the Army.  I told my 7 year old that while it was a good dream, it really can't work because Jared has special needs and the army doesn't take people with Down Syndrome.  Imagine my sadness, when, not meaning to be hurtful, my 7 year old ran up to Jared to matter of factly tell him that he can't be in the Army.  I quickly grabbed Bray's arm and whispered not to tell Jared that right now. It would be too cruel.  As a matter of fact, I skirted the issue myself, telling Jared that the army is not all it's cracked up to be. That it is a hard life and that we would miss him too much.  I couldn't find it in myself to squelch that dream at that moment. Rather, I let Jared march around the battlefield with the long stick that would be his musket in a world where he knew exactly what needed to be done in order to keep his loved ones safe.

Growing up With Jared: The Man He Will Be...

Growing up With Jared: The Man He Will Be...: "Once in a while, I am blessed to have someone tell me about an interaction they had with Jared. It's important for me to see Jared through t..."

The Man He Will Be...

Once in a while, I am blessed to have someone tell me about an interaction they had with Jared. It's important for me to see Jared through the eyes of someone who is not his parent. So often, I get bogged down in the caring for Jared and forget that he is a young man with thoughts, hopes and dreams not unlike other teens.  Recently, someone shared a story with me, an encounter they had at the camp where Jared works.  Jared shared with this person how he once just sat around and watched a lot of TV, but now he feels healthy and fit and he likes the choices he is making! It's funny because lately, we have seen a Jared with purpose, with a light in his eyes. I hope that what we are noticing is what Jared is becoming, a happy man who believes that he matters in the world.  That thinking will take Jared far, I think.  It's important for us to give our kids the space they need to discover what makes them tick, what makes them get off the couch and embrace life.  It seems that Jared is finding his place in the world, and that people are noticing.

Growing up With Jared: On Being OK

Growing up With Jared: On Being OK: "There is a fragility one notices in new moms of kids with Down Syndrome. I can't quite describe it, but I will try. The eyes have a guarded..."

On Being OK

There is a fragility one notices in new moms of kids with Down Syndrome.  I can't quite describe it, but I will try. The eyes have a guarded thoughtfulness.  Tears are quick to come. We are vulnerable when we have a baby with special needs. There is still a part of us that wants it not to be true, to all go away.  However, these new moms turn a brave face to the world, a visage that says, "I have a child with Down Syndrome. I'm ok with it. Don't you dare say or do anything that demeans my child."  New moms of children with special needs are fighters. We don't want pity. We just want acceptance for our children.  Some are quiet about it, while others, the really brave ones, rally around the cause and plow the road that lies ahead of our children with an energy that wells up from deep within. I'll bet many of these moms didn't even know they had that, the fight, I mean.  I had a conversation recently that started like this: If there was a magic wand, would you wave it about your child's head in order to whisk away the part that is Down Syndrome?  "Yes, I would,"I said. Who wouldn't want the world to be easier and more welcoming for our children?  Who wouldn't want to take away the stigmatism that comes with being different? I'd be lying if I said I wouldn't. But stay with me here. I'm ok with Jared having Down Syndrome now. I think I've been ok with if for a couple of years. It took a long time to get there, but once that acceptance came, with it came a rush of peace.  I want to tell you new moms out there. That peace will come, sooner for some than others. And as far as waving that magic wand? Some days I still want to wave it, but there are many more days when that wand can stay in its velvet-lined box.

Growing up With Jared: Bug Bites and Leeches...

Growing up With Jared: Bug Bites and Leeches...: "With summer, comes camp.When I was a little girl, I attended Camp Cherith as a Pioneer girl. I learned how to canoe and swim, sing songs aro..."

Bug Bites and Leeches...

With summer, comes camp.When I was a little girl, I attended Camp Cherith as a Pioneer girl. I learned how to canoe and swim, sing songs around the campfire, miss my parents, and pray. As a college student, I was a camp counselor and equestrian instructor at Camp Chateaugay, where I learned how to take care of girls who were homesick, kayak, start a fire, and flirt with the guy counselors (not much of a learning curve for that last one...) Those two summers were probably the best summers of my young life.  There are those of us who cherish those "camp" summers along with smokey smells, bug spray and juice. Camp was a magical place, a world so far removed from everyday life, a world where nature became our "growing up" guide. I loved camp.  Today, I had the privilege of dropping Jared off to the local YMCA day camp, not as a camper, but as a Couselor in Training! Makes you think of the "CIT" song from that Murray movie, Meatballs, doesn't it?..."We are the CITs so pity us...."  Jared will fill his afternoons for the next couple of weeks acting as a helping counselor in a group that consists of a bunch of  first graders, two of whom have special needs.  If this works out, he will have an opportunity to work for two more weeks later in the summer.  It is hard to explain how I felt as he and I walked down the dusty road to the main lodge.  I remembered my dad dropping me of at a similar gravel path so many years ago- anticipation welling up inside as each step took me closer to camp's big meeting house.  Was Jared thinking the same thoughts that traveled through my head that summer? "Will the campers like me? Will I know what to do if someone is sad or hurt? Will I make friends with the other counselors? Will I want to leave when it is all over?" I'm happy for Jared. I want this to work so that he too will know that spectacular feeling of being a part of something that has been around for so many years, summer camp.

Growing up With Jared: Teen Angst...

Growing up With Jared: Teen Angst...: "Jared did 2 stupid things last week. Yes, I say 'stupid' at the risk of being politically incorrect, but really? Sometimes we do things that..."

Teen Angst...

Jared did 2 stupid things last week. Yes, I say "stupid" at the risk of being politically incorrect, but really? Sometimes we do things that can only be described as stupid. The first thing Jared did was ignore his girlfriend for not other reason than to be "cool".  Yep, his quest for coolness brought Gabby to tears, and unlike moms in a typical situation who often remain blissfully ignorant of teenage posturing, when our kids with special needs navigate the social scene, we are privy to much of it. Maybe it's because we are the ones who are driving them to special olympics and parties.  Maybe it's because our kids are like open notebooks, who have been read closely by us for years, so now when they are teenagers, we are still reading, still seeing everything, frankly, too much of everything. It's like watching an episode of High School Musical, and while it's nice to know that our kids are not sneaking off to have sex or do drugs (how could they with us watching them so closely?), sometimes it is exhausting having to live through the drama with them!  Gabby's mom helps me find balance. She gives me permission to let them figure things out for themselves, while being available should the need arise. I'm trying to live that because, at some point, Down Syndrome or not, Jared is going to have to figure out the social things by himself. It would be completely unfair for me to figure it out for him. Where's the learning in that? Where's the living? So, my lesson this week is, let Jared and Gabby figure it out. Resist the urge to pick up the other phone line while hiding in a closet somewhere in the house...yeah, that looks even more pathetic in print. And let Jared stumble and even fall.  We all had to do it and OUR parents didn't have to see or even know everything. I'll work on finding that balance between letting him live while being there if a fall proves to be a bit too much.  Jared learned how to dress himself, how to shower and shave, how to make nachos. He'll learn how to be a friend too.
Oh, speaking of shaving? The other stupid thing Jared did was shave off his sideburns, which turned into shaving off a good portion of the hair on both sides of his head. When I asked him why he did this, he said he wanted to look cool.  I think he looks like the lead singer of The Cure...

Growing up With Jared: Hasbro House

Growing up With Jared: Hasbro House: "The other night, Jared and his little brother were playing 'Life' on the Playstation, and while they were completing college, getting marrie..."

Hasbro House

The other night, Jared and his little brother were playing "Life" on the Playstation, and while they were completing college, getting married, and having 2.1 kids, I began think...
First spin: pick a chance card-You have just had a baby with Down Syndrome. Take 2 steps back.
Second spin: Discover a Down Syndrome support group. Go forward 3 steps.
Third spin: You've just discovered a hole in your heart. Have surgery. Miss a turn.
Spin again: Gluten allergy-no more cakes and cookies for you.
Spin again: Wegman's started stocking some really good gluten free options! Move ahead, feeling better and less deprived!
Spin again:  You win an inclusion battle at the local school.  Move forward
Spin again:  Pass a few opportunities, but realize that other doors have opened up.
Spin again: This one is my favorites: Obtain a "fast pass" from Disney World. Go to the front of every line. (new moms and dads of kids with a disability, you can totally get this pass, and darn it, it is so much fun going to the front of the line--our kids deserve to be in the front of the line sometimes!)
Spin again: Find friends to play in a kick ball league. Miss a turn because you are laughing so hard.
Spin again: Soar ahead! You just went to the prom with your girlfriend!
Spin again, and again, and again. Sometimes you will be pushed back. Other times you will move forward. And you will keep moving forward even if it seems like sometimes you are not moving at all.  Jared, you will win this game of Life.  And you will experience love and joy along the way. And promise me, you will keep spinning, and I promise you that I will be there when you take every turn.

Growing up With Jared: A Fairy Tale...

Growing up With Jared: A Fairy Tale...: "Once upon a time there was a queen who had a baby. It was a joyous event heralded near and far, but in just a few short hours, this dream, ..."

A Fairy Tale...

Once upon a time there was a queen who had a baby.  It was a joyous event heralded near and far, but in just a few short hours, this dream, this dream of a new baby boy was shattered.  All of the drs in the land came to the queen's bedside and told her that the prince, as he was her first born, was not perfect. He looked different they said, as the queen sat there, tears streaming. I might not want him then, thought the queen, as it would be very difficult to raise a not so perfect prince in the kingdom.  People would point; children might laugh, or even worse, run screaming from the young prince so they too wouldn't catch the syndrome thrust upon him.  In the wee hours of the morning, however, as the queen lay sobbing, a beautiful fairy flitted into her room holding a bundle, in which happened to be the prince. "He's hungry!" the fairy declared, placing that prince, that not so perfect prince, into his mother's arms. "No!" the queen protested, but it was to empty hospital walls she spoke, as the fairy had ever so quickly sped from the room.  The queen looked to the bundle in her arms, blue eyes locking onto same blue.  Yes, she decided, you are mine. 

      The prince grew, and while I would like to say the queen's fears    were unfounded, sadly, there was some meanness in the kingdom.  There was some fear as children ran away from the not so perfect one.  But as the years went on, the kingdom underwent a magical transformation.  The meanness turned to acceptance, and the fear to understanding. And it was a good life, but something was missing.  Until one day, the prince met a princess; some may call her a not so perfect princess, but to the prince, she was perfect in every way.

Each day, they spoke on the phone, telling each other secrets and laughing at each other's silly jokes until

finally, there came to be a ball, a celebration where all the people of the land would go, and where all the royal

subjects would see the not-so-perfect prince and his not-so-perfect princess.  Before the ball, there was a banquet, and they came from far and wide: aunts and uncles, fathers and mothers,  a grandmother and a grandfather with his camera, cousins and friends, sisters and brothers, waiters and waitresses, and even the palace chef. As the people of the kingdom watched, the not-so-perfect prince walked up to the not-so-perfect princess, and with tears in his eyes,  slid a bracelet of pink roses onto her outstretched arm.  The princess gazed up at him and, with shaking hands (as well as a little help from the queen) pinned two perfect roses to his lapel.  While all of this was going on, the two queen mothers locked eyes, but not for long, for they feared the

tears on their faces would flood the entire kingdom!  Theirs was a happy cry, different than the salty bitter tears of the past.  With each tear shed, now there was joy.  All too soon, it was time to go to the ball. The prince held out an arm, a most perfect resting place for the princess' delicate, rose and jewel encrusted hand. And out the door they went!  When they arrived at the ball, the other princes and princesses ran up to the not-so-perfect prince and his not-so-perfect princess declaring, "What beauty! How sweet!"  And as those other princes and princesses admired the young couple, the two queens and their two ladies in waiting, cried some more, laughter breaking through their tears.  As the two queens left the young couple to their ball and made their way happily out the door, they looked back one last time, and what they saw was indeed perfect: the prince and princess spinning to the music, beautiful and glowing and happy.



The Prince and Princess...

And they lived happily ever after... 





Growing up With Jared: It's Not About Me

Growing up With Jared: It's Not About Me: "Recently, our minister at church preached an Easter sermon titled, 'It's Not About Me.' His words rang true to me as I reflect back on my e..."

It's Not About Me

Recently, our minister at church preached an Easter sermon titled, "It's Not About Me."  His words rang true to me as I reflect back on my experiences with having a child with Down Syndrome.  I think I can say that I have safely made the trek from the "Why Me?" to an acceptence of a life, and a good life at that. Sure, things might have been easier if Jared did not have special needs, but there are really no guarantees, are there? So, I sit back and watch his life unfold before me. And it is a precious thing to watch. Jared is slowly leaving the somewhat egocentric venue of adolescence and starting to see, to really see the world around him. He wants to be a teacher assistant.  I can see him working with young people, perhaps young people with special needs.  He'd be a good guide for them, I think.  Last night, I watched him at Special Olympics. His friend, Matt was having trouble opening his water bottle.  I hadn't noticed, no one had, except Jared. I watched as he handed his water bottle to Gabby, and then reached out to Matt, took the bottle from his hand and opened it. Seeing Matt smile up at him in thanks for his help painted a picture of what Jared might do, of who he might be in this world. He loves people. He is becoming aware of them. He is helping. He is realizing, so much sooner than I ever did, that it truly is not about him.

Growing up With Jared: The Reservations are Made...

Growing up With Jared: The Reservations are Made...: "I called yesterday to make reservations at a local restaurant where Jared and Gabs will dine before the prom. The owner was wonderful-makin..."

The Reservations are Made...

I called yesterday to make reservations at a local restaurant where Jared and Gabs will dine before the prom.  The owner was wonderful-making special accomodations so that the kids can have their own table, with my sister, her husband, and John sitting with me at a nearby foursome. Poor prom kids-it'll probably be like being on a reality TV show with us watching their every move! I told Jared the reservations are under his name.  I can't wait to here him announce their arrival to the hostess. Small things mean so much more when the road to adulthood has been a long and curvy one.  Gabby has been prepping as well. She tried out the manicure color that she will be using: "I'm in the Mood for Love"...She told the girl at the salon that Jared would like that color...He better not like it too much! Gabby has been working on her tan as well. Flashes of my past come at me as I listen to these kids look forward to their special day.  I remember laying on the paved driveway in 40 degree weather trying to work on my tan as well-love these NY Springs!  These kids are living the dream, and we are so blessed to be a part of it! I'll be sure to send pics after the big day...It's coming up in about a week and1/2!

Growing up With Jared: Soft Hair and Relaxed Teeth

Growing up With Jared: Soft Hair and Relaxed Teeth: "Over the last couple of days, Jared's hair has been looking a bit greasy, even with his everyday showers, so yesterday, when I came home fro..."

Soft Hair and Relaxed Teeth

Over the last couple of days, Jared's hair has been looking a bit greasy, even with his everyday showers, so yesterday, when I came home from work, I asked him to show me which shampoo he has been using.  We marched upstairs and Jared showed me an almost empty bottle of---conditioner. Yes, Jared has been "washing" his hair with conditioner. So, we spent the next few minutes reading labels and determining which bottle would be the best one for him.  Then, we washed his hair--- twice.  It looks so much better, very conditioned, but so much better.  Like I've said before, on this journey with a child with special needs, quite often you march 2 or 3 steps forward, only to be tugged back a couple of steps every once in awhile.  But he learns, slowly he learns.  This whole shampoo/conditioner story reminds me of another case of "bottle confusion" that happened about 5 years ago, when visiting my sister.  Kathy and I were enjoying our morning cup of coffee, flipping through the paper and watching Matt Lauer (our normal routine when together in the AM) when we heard Jared coughing rather loudly from the upstairs bathroom.  "Is he ok?" my sister asked. "Oh, he's fine," I responded, taking another nonchalant sip of coffee, "he always coughs when he brushes his teeth." (I should win awards for my "fine" parenting...)  A few minutes later, the coughing turned to gagging, at which point, I decided that there might be an issue and bounded up the stairs. Jared met me, mouth frothing, and I said as I took the toothbrush from him, "here, let me help."  I started vigorously brushing his teeth, and while brushing, happened to glance down at the counter where the "toothpaste" that Jared was using lay open in all its pink, minty glory.  As I looked, I realized it was muscle relaxer! Minty, pink muscle relaxer! And I was assisting my son as he brushed with it! I screamed and dropped the toothbrush as my husband came running.  I began to cry as I explained that I was probably poisoning Jared. I actually asked my husband the following question, and this is the reason I would never have made it in the medical field: "It's muscle relaxer! What if he swallows it and it relaxes his heart?!!"  My husband, my very patient husband just looked at me and patted me on the shoulder as I realized how stupid I must have sounded. Poor Jared. After we rinsed out his mouth and realized he would be ok, the incredible hilarity struck us and we would collapse into laughter throughout the rest of our visit. And Jared's heart was ok...

Growing up With Jared: Purpose

Growing up With Jared: Purpose: "Lately, I find myself just watching Jared as he navigates through life in all his deliberateness. It seems like in the last few months..."

Purpose

Lately, I find myself just watching Jared as he navigates through life in all his deliberateness.  It seems like in the last few months, I am getting glimpses of what kind of man he will be. It seems funny, but his turning 18 has caused me to look at him in a different way. This must happen with all of our children, this transition from childhood to adulthood, but I guess I never really thought it would happen for Jared. One time, a well-intentioned woman said to me upon noticing my toddler with Down Syndrome, "Oh people with Down Syndrome are so happy, and when they grow up, they are just like big kids!"  I smiled dutifully, but cringed inside. I didn't want Jared to be just a big kid when he grew up. I wanted him to be a man, a good man who will have  new experiences, foster meaningful relationships, and contribute to society in his own way.  The woman was being kind, but with her words, I felt the weight of that future burden, of having an oversized boy, a big kid with me forever, one whom I would love, but with whom I would never enjoying an adult relationship, another death of a dream, another disappointment.
But, like I said, I've been watching Jared these last few months, and I am seeing the man within the teenager. I watch him interact with other young men at special olympics. They all tease and joke and jostle eachother with those "man-kind" of light punches to the arm. They get serious and competetive when they run races. Testosterone knows no boundaries... And I watched Jared this morning when I came down for my coffee, awake before all of us, steeped in routine, but the routine of a young, purposeful adult.  First finding his leftovers in the refrigerator, spooning them into his thermos before heating it up in the microwave. Washing his apple, finding some gluten free cookies to bag and put in his lunch pail. Folding a napkin, slowly and carefully to place on top of everything. And I stand and watch, sipping my coffee, as he reminds me that he is staying after for "friend to friend" to watch a movie. He'll take the late bus home, he says.  And I listen as he tells me that he started reading Pride and Prejudice last night on his IPAD, and that it is about a man who wants to get married, and is in love, something like that.  And even though, he may not be getting all of the nuances of Jane Austin, (who does?) he is reading, exploring worlds that we never thought would be open to him, one simple page at a time. And it will be ok if he leaves the story. The fact that he is trying is part of whom he is becoming, a young man, carving out what will be an independent,  rewarding and happy life.  He's just left now, found a sweatshirt that he hadn't seen for awhile, put it on, and walked outside, not a big happy kid, but a young man, stepping into his meaningful life.

Growing up With Jared: Spring is in the Air...

Growing up With Jared: Spring is in the Air...: "I think I've written before that when Jared was born I worried so much. I worried about the quality of life he would have. I worried if..."

Spring is in the Air...

I think I've written before that when Jared was born I worried so much. I worried about the quality of life he would have. I worried if he would have things to do, friends, a girlfriend. Well, I needn't have worried. Jared has a nice life. He seems happy. Yes, he has the same ups and downs all teenagers have, but there is still a peace about him, an exuberance for the things we might deem small, but to Jared, a young man who is blessed to live in the moment, every bit of life holds meaning for him. Someone once said to me that summer is like a lemon that we try to squeeze every drop of juice out of. That's how Jared lives his life, and for that I am so pleased. Take his conversations with his girlfriend. On weekends, they talk for hours. First, he calls her, then they break for lunch, then she calls him back, then Jared has to give up the phone for another family member, or to go do his laundry, then they call eachother back...And they talk about the funniest things. One day, when G was telling Jared about her upcoming IEP meeting, the two of them spent the next 1/2 hour yelling, "IPP"! into the phone and laughing hysterically. Think about it; say it; it is kind of funny. Another time, one of them put on the High School Musical soundtrack, and they both sang into the phone to eachother. You can just imagine what that must have sounded like. It makes me happy when I see Jared looking up G's number in the Down Syndrome Assoc. phone book. And the other day, it made me happier still when it seemed as if he had memorized that phone number. I still remember my 3 best friends' phone numbers from dialing them hundreds of times over 30 years ago when we would talk for hours about pretty much nothing. Jared will have G's number in his head and heart for years to come too, I think.

Growing up With Jared: Happy Birthday to My Son

Growing up With Jared: Happy Birthday to My Son: "On this eve of Jared's 18th birthday, thoughts and reflections continue to travel through my head, carrying with them feelings of wistfulnes..."

Happy Birthday to My Son

On this eve of Jared's 18th birthday, thoughts and reflections continue to travel through my head, carrying with them feelings of wistfulness, nervousness, and thankfully, happiness too.  It's not surprising that I find myself alternating between memories of the day Jared was born and hopefulness, with a certain sense of nervousness, as he enters into the realm of adulthood.  18 years ago, I had trouble breathing, and didn't know how I would ever get out of that hospital bed.Today, I frosted gluten free cupcakes with Jared. He's taking them to school for his friends tomorrow. 18 years ago, I was told that no one knew when or if Jared would speak or walk; Last night, I stayed awake until almost midnight so that I could pick him up from Dance Marathon.  18 years ago, I pushed away that plate of hospital chicken and thought that I would never want to eat again, that things like food and music and laughter would never again hold any type of interest for me.  Tonight, Jar wants to go out for BBQ. We're going, and I'm having a beer, and it is going to taste great. I think I'll order the chicken too. 

Growing up With Jared: Fairytales Come True....

Growing up With Jared: Fairytales Come True....: "You cry a lot when you have a child born with Down Syndrome. You cry with disbelief when the dr. first tells you; you cry in anger whe..."

Fairytales Come True....

You cry a lot when you have a child born with Down Syndrome. You cry with disbelief when the dr. first tells you; you cry in anger  when you first bring him home; you cry with fear when the dr. tells you that he may not make it through his 2nd heart surgery; you cry with love when he first smiles at you; you cry with joy when he walks for the first time; you cry when other kids make fun of him; you cry with pride when he tells those same kids to leave him alone; you cry with astonishment when he wrestles his first opponent; you cry with frustration when you try to teach him to tie his shoes; you cry with happiness when he sings Silent Night in front of a hushed Christmas Eve congregation.  You assure him that it is a "happy cry" when he asks. Thank God there are so many happy cries as we grow with our children. Most recently, I experienced that same happy cry as his dear friend, Gabby, tried on countless gowns, looking for just the right one to wear to the prom when she and  Jared go this spring. Oh, if you could have seen her, first in pink, then in blue, then in another pink, and finally in the purple vision that she will wear.  She picked it because of all the "bling" on it-her words. I was so honored when she, while struggling between a white dress sprinkled with flowers and the purple with the high waist and said "bling", asked, "Randi, which one do you like the best?" With tears in my eyes, I assured her that Jared would find her beautiful in whatever she chose.  And he will.  I can hardly wait until he sees her on what will be one of the most magical nights of their lives.Gabby's mom, whom I've known since college, cried too.  You see, we weren't sure if our kids would ever make it to a prom, but they will, and Gabby will look beautiful. And Jared will look handsome. And we will cry.

Growing up With Jared: What has Changed Since the 1970s?

Growing up With Jared: What has Changed Since the 1970s?: "A few days ago, a gentleman wrote a letter to the editor complaining that there are too many teachers being paid to teach children these day..."

What has Changed Since the 1970s?

A few days ago, a gentleman wrote a letter to the editor complaining that there are too many teachers being paid to teach children these days and seemed to wonder why classrooms had to have teacher aides and why educators are struggling with more than 25 students in the room.  He claimed that he turned out fine, having been educated in the 1960s and 1970s with just one teacher and 30-plus children in the room. He wondered what had changed since the 1970s.
The following is my response to that letter:

Saturday February 20, 2011

To the Editor:

     A few days ago, William Meyer pondered the changes in education over the last 40 years, which led me to question as well, what has changed since the 1970s? Well, one thing that changed was the implementation of Public Law 94-142 in 1975, also known as the Education of ALL Handicapped Children Act.  Now that law is more widely known as IDEA or the Individuals with Disabilities Act.  What this changed, in the 1970s, was that states received federal funds so that they could implement policies that assure a free appropriate public education to all children with disabilities.  Before this change, intellectuals with disabilities didn’t receive appropriate educational services that would enable them to be productive members of society.  I’ll bet that if Mr. Meyer’s classmates in the 1960s and 1970s were to look around as they sat in that classroom with those 30-plus children, it would be safe to say that they would not have been sharing their educational space with any children with intellectual disabilities, because those children would have been segregated from the “educable” population,  perhaps placed in the basement of the school or worse yet, warehoused in state institutions.  When one teacher must stand in front of the room and  deliver information to children of similar IQs without having to differentiate in order to meet the unique learning needs of ALL children, it is perfectly understandable that there could be 30-plus children sitting in those desks and that a teacher aide would not be necessary in that classroom; however, because of this change since the 1970s, students with intellectual disabilities can be in a room with their peers so that they may be prepared for further education, enabling them to gain more independence and become productive members of society. 

     With this change, came the advent of teacher aides, the “second person in the classroom”.  Because of these so-called “extra” people in the classroom, my son who was born with Down Syndrome sings in the school choir.  Because of these other people in the room, my son learned how to build a house in his residential structures class.  Because of these other people in the room, my son will compete in Dance Marathon with other high school teens in order to raise money for kids with cancer.  Because of the other person in the room, my son just finished his second wrestling season on the JV team. Because of the extra people that will be in the room this Spring, my son, along with his girlfriend who also has Down Syndrome, will attend the junior prom without a parent having to be present. Because of the extra people in the room, all students have the opportunity to get to know and to learn from someone who may not be on the same physical or intellectual playing field, perhaps opening the door to a society that, embraces these differences with sensitivity and grace.  That is what has changed. I think that my son and many other young people like him would agree that it has been a good change.

Randi Downs

Fayetteville

Growing up With Jared: On Spending the Day With a Princess

Growing up With Jared: On Spending the Day With a Princess: "Being a mother of sons, I never thought that I would have the opportunity to engage in the timeless ritual of prom dress shopping, much as I..."

On Spending the Day With a Princess

Being a mother of sons, I never thought that I would have the opportunity to engage in the timeless ritual of prom dress shopping, much as I accepted the fact that Barbies would not cross my threshold.  GI Joes are not as much fun to dress up.  However, a few weeks ago, I was invited to go prom dress shopping with the young lady with whom Jared is going to the prom! Yep, Jared is going to the prom. Words can't describe how exciting this is! So, stay tuned, and I will tell you all about it, when we get back from a day of trying on dresses, a day when a young lady with Down Syndrome will be living a dream.

Growing up With Jared: Life's Little Blessings

Growing up With Jared: Life's Little Blessings: "So many times, when people find out that I have a son with Down Syndrome, I get the standard, 'Oh, they are such blessings, so happy and swe..."

Life's Little Blessings

So many times, when people find out that I have a son with Down Syndrome, I get the standard, "Oh, they are such blessings, so happy and sweet!"  I know that people are trying to be accepting and nice, but it's times like that when I start to say, "Yeah, until I ask him to move a bit faster or brush his teeth a bit better, or stop fighting with his brothers, or how about when he was little and would simply plop his 45-pound self down in the middle of the grocery aisle until I felt ready to be carted off to the insane asylum?"  Some days, it's difficult to find the blessings that apparently come with having a child with special needs.  But sometimes, like the other morning, something happens to remind me that God does indeed shine through my boy.  It was early morning, still dark, still very cold, and Jared was outside waiting for his bus to school.  As I stood in the kitchen, I heard him singing, his soft voice, floating out, seemingly carried on the ice crystals over the the frozen ground, and for a moment, I was reminded of my blessing.

Growing up With Jared: Self-Portrait...Jared at 13

Growing up With Jared: Self-Portrait...Jared at 13: "One day, when Jared was in 7th grade, he came home with a gift for me. He excitedly handed me a rolled up piece of paper which I laid ..."

Self-Portrait...Jared at 13

One day, when Jared was in 7th grade, he came home with a gift for me.  He excitedly handed me a rolled up piece of paper which I laid aside because I was busy making dinner. I assured Jared that I would look at it later.  Dinnertime came, along with the usual school evening mayhem, and the rolled up picture was soon forgotten under a pile of dishes and dish cloths.  Later on, when things had quieted down, I found the rolled up document once again.  I unrolled it and found myself staring at a pencil sketching of what I assumed to be Jared's likeness.  I had known that he would be doing a self-portrait for 7th grade art class having heard about it with all the other parents at open house, but I was still surprised to have it, looking back at me, braces and all.  I was so pleased that Jared had once again proven that he could do what other kids in his grade were expected to do. Then I read what Jared had written underneath the smiling face: "He has Down Syndrome. That's me. Jared 10/6/06.
This gave me pause because I had rarely heard Jared discuss himself and Down Syndrome in the same sentence.  I guess it hit me pretty hard because this was his self-portrait; this was how Jared saw himself.  Through my tears, I asked my husband if he had seen the picture and read the statement.  He said that he had and that when he asked Jared about it,  Jared had replied that he wanted people to know that the picture looked strange because he has Down Syndrome.  My heart broke as I heard Jared's words repeated by John.  Was this how Jar saw himself?  The picture showed a face with braces and a tongue hanging out of a somewhat garish mouth.  The eyes were wide open and unfocused. I was aware that it was a self-portrait by a very immature artist, and that drawing was not Jared's forte, but it still hurt to see him that way.  The middle school years are a time for awkwardness and insecurity, and it pained me that Jared was going through the same feelings that other adolescents go through, but I was thinking it has to be hard for someone who is always a bit behind and doesn't look the way society expects him to look.  I thought back to my own junior high awkwardness, spending hours in front of a mirror willing my thighs to emulate those of Charlie's Angels and wishing that my overbite would magically straighten.  Now, Jared was on the brink of adolescence, and I was wondering if it would be harder for him.  From looking at his self-portrait, I think he might have been thinking so as well.

Growing up With Jared: Hip Hip Hooray! (one of Dad's sick jokes...)

Growing up With Jared: Hip Hip Hooray! (one of Dad's sick jokes...): "My dad, Jared's grandpa, is getting a new hip tomorrow, so in thinking of what I might do for him, it's only natural that I've bee..."

Hip Hip Hooray! (one of Dad's sick jokes...)

My dad, Jared's grandpa, is getting a new hip tomorrow, so in thinking of what I might do for him, it's only natural that I've been thinking about all he has done for me over the years.  One time happened about 25 years ago; I was looking for a summer job and spent one horrible day working in the horse barn at a nearby race track.  The job was awful: long hours, nervous horses, and seedy people skulking around the stables.  Needless to say, I spent a 7-hour day mucking stalls, returned home, saw dad, and immediately started crying.  While Dad absolutely loves all of his kids, I think he has always had a soft spot for me, his most emotional, and perhaps overly sensitive youngest daughter. So, the minute I started crying, he said, "So, don't go back! You never have to go there again, not even to collect payment for the 7 hours you wasted there today." I was so relieved, so ready to forget that job and the awfulness that went with it. Dad's permission was all I needed in order to leave that unfortunate summer job and go back to waitressing at a local country club.

Jump ahead now to the day after Jared was born.  My parents had come as soon as they could to offer whatever support parents can offer when one of their children is experiencing a crisis.  I remember Dad, sitting in my hospital room. Mom and Jared's dad were somewhere else, and Dad promised me he would be in the room, waiting for Jared and me to come back from the required "new parent's" course that the hospital insists you attend before checking out.  This was the first time, that I felt embarrassed, sad, and even ashamed of my child whom I felt was so different from all the other babies.  I sat in a room with 4 or 5 other new mothers, all holding their infants.  While their faces  reflected that "new mom" fear that I'm sure all young mothers have,  they also glowed with a happiness that seemed so out of reach for me at that moment.  I held Jared with the blanket up by his face, keeping him turned toward me so that no one could see that he had Down Syndrome.  It would be the first of many times that I felt the alienation that can come when you have a child with special needs.  Before I go on, it is important for any new moms of kids like Jared to know that, over the years, that alienation has turned to pride, and that for the most part, the world has been good to Jared.  But now, I go back to that class, rather to right after the class, when I returned to my hospital room where Dad was alone, waiting, just like he said he would be. Much like the fateful day I returned from the race track, I burst into tears.  I sobbed and yelled that those other moms had normal babies, that they seemed so happy. But this time, my dad couldn't tell me, "So don't go back; you never have to go there again," even though everything in his eyes implored that I might be able to avoid the journey ahead.  But he did hear me. He opened his arms, hugged me, along with his newest grandson,  and said, "I know honey, but you will be ok; you will be ok."  I needed my dad so much right then. I'm glad he was there.  I wish we could be there with him tomorrow to let him know how much he means to this family, but Jared is taking care of that, trying right now to call his grandpa to wish him luck as he gets that new hip tomorrow.

You're wearing THAT?!

My husband jokes sometimes when I share the inspirational parts of my life with Jared that he will then follow my excerpt with the "real story"...you know the times that I lose it because I'm trying like heck to have Jared see it my way, when he has no intention of ever doing that.  I never said that having a child with intellectual disabilities is always a picnic; in fact, I think that today, I'll share one of those "real stories".  Jared's fashion sense, like that of many other teenagers, is not always understood by people, ok, mainly, by me. There are times that I want to bang my head against the door because Jared insists on wearing something that is so out there, so hard to understand. Shirts that are too big...jeans that would fit a boy twice his size... I know that it shouldn't matter, that Jared is Jared and that no one really cares if he doesn't look perfect.  That's my hang-up, and I'll admit it.  But it drives me crazy! I'm sure it's me trying to protect him, but I'm also sure that I fall victim to the micro-managing that often accompanies a parent's busy life.  So, sometimes. I've actually had a certain shirt, go missing...you know, when Jared goes to look for it, I sit there, feeling a little proud of myself and a lot guilty as I picture the offending shirt with the stretched out collar and the "Rubbin is Racin" slogan displayed prominently on the front, tucked strategically in the very top corner of the hall closet... And, just the other day, the following words actually left my mouth as I looked at one of Jar's latest outfits: a tight sweatshirt, with nothing underneath it and the zipper open exposing his chest: "Where do you get your fashion sense, from the Red Light district in Amsterdam?"  Jared replied by looking at me blankly. I stomped out of the kitchen and into the livingroom, only to find my husband practically rolling on the floor, silently laughing at my verbal craziness. "That might have been the funniest thing I have ever heard you say in all of years that I have known you."  I was half way up the stairs when I burst out laughing myself! It's so funny the things I try to control when it comes to Jared. I don't know why I get hung up on his clothing choices; perhaps I never will.  The best I can hope for is that I can relax and realize that he's ok, that it doesn't really matter if he wears the ripped XXL New England Patriots shirt...around the house, that is....