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.