Wednesday, December 22, 2010

Shrek Goes to College

One of the most interesting things about having Jared in our lives is the paradox that is him. So often, it seems as if Jar has a foot in two worlds: the high school junior world, which holds within it wrestling, cheerleading, newspaper club and choir and that still innocent world in which is held the magic of Christmas, ICarly, and stuffed animals.  Last night, as we finished dinner, the phone rang. On the other end was a college information line; Apparently, Jared had signed up for some college counseling, which is all good. Jared is researching colleges, particularily those which offer programs for young adults with intellectual disabilities.  I'll write about that another time because it is exciting how much there is out there for our kids.  The funny thing about this call, was the timing of it. As I tried to decipher what the young lady on the phone was saying, there sat Jared, happily reading the back of "Donkey's Christmas", one of the Shrek videos he had ordered from Amazon.  It is when his two worlds collide that gives me pause. I remember transitioning from high school land to the college world, but it was a smoother, more natural movement. The gap between Jared's two existences is so much larger, so much more pronounced. I don't know if I'll ever get used to that.  Will he come home from his job some day only to take out his stuffed animals and act out something that happened at work?  Will he flip past the news to the Disney channel? I used to push Jared to grow up, but maybe that will be where he goes when he grows up, and that is becoming more and more ok as we all get used to Jared, the young man.  Remember what I said about perspective.  As long as he is happy, we are so ok with that.  We are on the brink of an interesting time with Jared. As he prepares for adulthood, we wonder how much of his childhood will go with him.  I have to say, I love that Christmas still brings with it such mystery and joy for Jared.  I think that's why I still believe in Santa Claus.  Merry Christmas to you all.  May we all take a page from Jared's book this season and immerse ourselves in the magic that so many of us miss while rushing through life.

Thursday, December 16, 2010

His Own World

     There's a picture on my cell phone of Jared sitting at a recent wrestling tournament.  I think Jake took it. In it, Jared sits alone on a mat, surrounded by people, but with a noticeable space around him ; it is as if an invisible force field shields him.  This is not the first time I've noticed this, and I have a feeling that other parents of children with special needs see it sometimes: an isolation, a solitude even in this crowded world.  It's times like these when I pause and wonder just what is going on in Jared's head. Is he feeling as alone as I, on the outside perceive he must be? I asked my sister Kathy one time when I saw Jared dancing alone at a school dance, if she thought he was sad. She said that in his world, at that particular moment in time,  he was probably happy, that my perception of solitude as a bad or lonely thing might not match his perception.  I think she may have been right, because when I looked at Jared's face, there was rapture, utter joy emanating from him. He looked so happy, so delighted. I dare say that he looked happier than some of the other kids at the dance who floundered, as we all did, in that awkward and awful stage of gawkiness .
     I guess that my ramblings today might contain a message such as this: Our perception of loneliness and  "fitting in" might not be the same as that of our children.  I would like to think that they are the keepers of a much greater joy than we have, maybe because their minds are not cluttered with worries about what other people think. When Jared sits alone now, I don't worry as much anymore. I just watch his face.

Wednesday, December 8, 2010


Jared's brothers:Jake and Braydon
 Today is our middle son's birthday. Jake has been a huge force in Jared's life.  Time after time, we see the siblings of children with special needs as extraordinary. Jake is precisely that. Even though he is a little over 3 years younger than Jared, he resides in the big brother role, not always by his choice,  more often than not. It has not always been easy for Jake; at times throughout his young life, he has craved a traditional "big brother", but he has accepted, with grace, that his relationship with Jared is of a different nature.  Sad sometimes? Yes. I promised myself I'd be honest in this blog. I think that is respectful to my readers.  But, while there has been some sadness for Jake, there has been so much more joy as he has grows up with Jared. He and Jar have been known to laugh for hours over the silliest things. I think he likes that his brother still hugs him, still makes funny faces at him, still wrestles with him.  Perhaps the most incredible thing is Jake's natural ability to protect Jared. When they were young, I remember a 3 year old boy helping his big brother down the stairs, holding his hand and assuring him, "It's ok Budder, I got you."

I think Jake will always have his brother's back, but I think it's necessary to offer this next piece of advice: When Jake was born, my mother told me to help him love his big brother, but to never expect him to be Jared's keeper; that this might cause Jake to resent his special brother.  So, I have tried hard over the years to let Jake be Jar's little brother.  It is Jake who has lovingly instilled himself as his brother's protector, and because of this, our middle boy is growing up to be a man of true love and honor. Happy Birthday, my Jakey boy. Thank you for smoothing your brother's path,  for never taking away his dignity and for letting him be the big brother.

Tuesday, December 7, 2010

Future Glimpse

Last night, as we sat around the dinner table, the boys were sharing memories of their best birthdays ever. As Jake shared Disney with Grandma and Grandpa, Bray the one where he got all his "beyblades", and Jared, the one where he went to dinner with two of his closest friends, I also found myself remembering a birthday; It was Jared's 15th, I think. The significant thing about that birthday was that I was NOT with Jared. I was at a Springsteen concert with my sister...a Springsteen concert. The reason it was so significant is because at some point during my crazy 40 -something year old version of "rocking out", I flashed back to the day Jared was born, his first birthday. On that day, I thought my fun and free-spirited part of life was over. I imagine a lot of moms, when they are given the news that their child has Down Syndrome, have that same overwhelming feeling of bleakness and fear. They can't imagine what they are doing the next day, let alone a few years down the road; I'm here to tell those moms that, yes, you will smile again; you will laugh again; and you will definitely dance again. Look at me! I did!

Saturday, December 4, 2010

First Match

Driving through the snow around 7:00 AM to catch the bus to B'ville. Jared cranks up the Red Hot Chili Peppers. "Are you proud of me, mom." very proud. Fist bump because that's what wrestlers do. Then he walks off--wrestling sweats, wrestling hoodie, wrestling so big. Good Luck, Jar.

Friday, December 3, 2010


The other day, I wrote about Jared on the wrestling team, and while it has been one of the best experiences of his life, occasionally, something happens to abruptly jerk you back to earth. A few evenings ago, one of the boys on the team called Jared a retard during practice...retard, a word that has taken on such a new meaning for me over the years.  My first reaction was anger, then a bleakness that I have felt throughout the years when there has been one of those life hurdles. How could one of his teammates, a boy who had been on the team last year, drop one of the ugliest words Jared knows?  It's discouraging how many times we say things not realizing how certain words and phrases can cut through a person. Well, Jared cried, and a couple of the other boys told the offender that what he did was "really uncool".  I like how they stuck up for Jar. That's the good part of being on a team. The coaches found out, and the boy was properly dealt with. Jared said that by the end of practice, they did a bro hug, so I hope that boy learns- learns to think before saying things. Isn't that what we want all people to do? But the most interesting thing was Jared's comment when we asked him about the incident:  "I guess he wasn't at the assembly about shredding the "R" word, right Mom?" "Yeah," I said, "I guess he wasn't."

Thursday, December 2, 2010

Jared's Wrestling Team

Being part of a team has been good for Jared's spirit, ours too. It can be difficult to have a child who is different than most children, so when they are truly accepted, words cannot describe how it feels. The wrestling team has been a good place for Jared. I was so scared when he joined the team last year, but many of the boys took him under their wings and gave him the chance to be on a team, to take the support AND the ribbing, the jokes and the bro hugs, as Jared calls them.  Years ago, I would never have believed that Jared would wrestle, attend all practices and meets. But we had to let him go, because if we didn't, we would be doing him a huge disservice.  Sometimes, in our efforts to protect a son or daughter with special needs, we risk stifling them, blocking their chance at all that life has to offer. I'm glad we let go. It has not all been easy, but it has been so worth it.


As I post for the first time, Jared's bus has just pulled away, through the dark, northeastern air, leaving puffs of steam in its wake.  Jar waits out their each morning, bookbag in one hand, lunch pail in the other, wrestling pack on his back. He is a junior in high school, already talking about being a senior, then a super senior, before heading off to college. I think I will design this blog with the end in mind, so that young mothers and fathers who have just been told that their son or daughter has Down Syndrome will see the hope that we now feel as the yellow bus pulls away.