Sunday, August 28, 2011

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. 

Tuesday, August 16, 2011

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.