The Gift of Being a Brother
by MARY on 04/26/10
As someone who has six brothers I feel I'm somewhat an expert on what it takes to be a good brother. I should know--I have brothers who travel great distances at huge inconvience to chase after stomp rockets in the blazing sun, to become so adept at making balloon animals for multitudes of children that people want to hire him to entertain at birthday parties, or who sell hundreds of raffle ticket just to help out their sister.
My son Alex though takes the grand prize in the brother contest in my book. He was just 10 years old when Anna was born and from that moment has demonstrated such maturity that he puts us to shame at times. All through my pregnancy the normally happy go lucky Alex was strangely nervous about the arrival of Anna. He mentioned his worries that "something might go wrong". When she finally was born, however, he was the one to lead us to celebrate her arrival despite the fact that she had DS.
I was still in the hospital and Anna was in the NICU with heart issues when Steve sat the kids down to explain about Anna's condition. Alex took it all in stride, was just happy that she was alive, going to be released from the hospital ,and that she was HIS little sister, that he was unconcerned that she might have disabilities. In fact the next morning he got up early, took a blank T shirt out of his drawer, found some magic markers, wrote "I am the Big Brother" on it, and proudly wore it to school where he handed out chocolate cigars to all his friends.
Right from the beginning Alex was Anna's biggest coach. He was the one that first got her to walk, he was the one that first encouraged her to use the potty, and he was the one that holds her to the highest standards of behavior. He thinks I'm way too easy on her. He is kind, but extremely firm. Anna's therapists would often ask him to work on a particular task with Anna because if anyone could get her to do something, it was Alex. She calls him "the Boss" and he calls her "Little Bear".
Many is the evening where as I head up stairs I'll find Alex sitting in Anna's room with her telling her a story. I often find the two of them laughing uncontrollably at something. They love to tell each other Knock Knock jokes. If Anna cries in the night, Alex is the first one by her side.
Alex sticks up for Anna and kids like her as well. In the winter he volunteers for an afterschool recreation program for kids with disabilities. He works very hard every year at the Romp to raise money for DSRTF. He is not afraid to correct other teenagers who use the "R" word and doesn't care if he offends someone for calling them on it.
One day a few years ago Alex announced out of the blue that when we were gone, he was going to have Anna live with him and his family. I gently suggested that perhaps his hypothetical wife wouldn't want to have Anna live with them. He informed me that before he got married he was going to discuss the issue with the "wife" and if she wouldn't agree, he wouldn't marry her. He told me he wouldn't want to marry someone who wasn't fully accepting of his sister.
Anna is very, very lucky to have such a brother.
Update
by MARY on 04/19/10
Since my last post I have in been in contact with the bus company who were just delighted to hear from us and the joy that their driver brings to Anna. I was happy to learn that the driver was commended by the company for his great attitude and then was told that the company was going to send something to Anna. Sure enough, late last week a big box arrived addressed to Anna. I impatiently waited for her to get out of school. As soon as she walked in the door, she made a bee line for the box and was thrilled to discover inside a messenger bag, 2 baseball caps, a t shirt, and her favorite, a toy replica of the Ossining bus.
There was also a lovely letter from the president of the bus company saying "Thank you for waving to our bus driver, Mr.________, each morning. Your kindness and your smile must brighten his day! It seem that you and Mr._______ have become "buddies" so I am enclosing some items that our bus drivers and mechanics use in their jobs, along with a model of the bus that Mr.__________ drives. I hope you enjoy what I am sending to you and thank you once again, for bringing your joy to us."
I would post a picture of Anna opening the package, but it is beyond my capabilities with this nonintuitive computer program.
The Gift of Bringing Joy
by MARY on 04/09/10
When I first thought of this blog I intended to write about the little day to day things that make life enjoyable. I've discussed some amazing people who are incredibly gifted in different areas but I haven't spent much time on the little moments that can make life so positive. Today I wanted to talk about one of those little things that bring such joy.
As you all know, my youngest child, Anna is a kindergartner in our local elementary school and has Down syndrome. She is the only child in the district with Down syndrome. Every morning I drop the big kids off at the high school and then park the car nearby and walk Anna a few blocks to her elementary school. The high school kids have to be at school a half hour before Anna so we walk a little to kill some time and to build up Anna's endurance a bit.
Together we walk hand in hand down a busy street with Anna carrying her pink Disney princess backpack. Frequently we sing together as we stroll along. Anna is particularly fond of "You are my Sunshine" although during the winter she enjoyed the old ditty "Don't Go Where the Huskies Go, Don't You Eat That Yellow Snow" (a song from my Vermont childhood). Almost every morning during our walk all of the sudden I will feel Anna's body tense up and I will look up to see what she is noticing.
It will be the "Ossining Bus", the local commuter bus driving down the street. Anna will squeal in delight "It's the Ossining Bus!" and will let go of my hand in preparation of waving. As the bus draws closer we will see the bus driver , with a huge smile (matched only by Anna's grin), who will wave furiously at Anna who returns the greeting in spades. Sometimes the driver will even flash his lights at her if no other cars are nearby. Anna will be filled with delight by the greeting and will smile all the way to school.
It's a simple act on the part of the driver, but one that brings great joy to its recipient.
The Gift of An Open Mind
by MARY on 03/25/10
So, I've been working on a quilt to be donated to a silent auction to benefit Anna's former preschool, Pleasantville Children's Center. The quilt is made up of scraps of about 30 different fabrics. You can see the tutorial on which mine is based at: http://www.redpepperquilts.com/2009/10/tutorial.html . In my version, I'm using all types of fabric left over from prior quilts and am constructing it so there is a deliberate randomness about --every square is unique and yet is the same.
As I've been sewing I've been thinking about the sameness and difference in the quilt and my thoughts wandered to my friend Denise, a teacher at the preschool for which this quilt is intended to raise some funds. I first met Denise after I had enrolled my daughter Anna, who has Down syndrome, in her class. Denise wanted to meet me before school began. I went to the meeting with some trepidation--would Denise think Anna's issues would be too great to accept her in the class with 17 other "typical" children? (In the disability community we refer to kids without known issues as "typical" rather than "normal").
Within moments of meeting Denise, my worries were dispelled. The point of the meeting was not to discuss all the things that could go wrong having Anna in the preschool, but rather to give Denise an idea what was needed to insure that Anna would succeed in the environment. We discussed every nitty gritty detail from speech and toileting concerns, to safety, to Anna's learning style and her likes and dislikes. I was comforted to know that Anna would be in good hands.
Anna had the best year of her life in Denise's class. For the first time (although the 3rd year of nursery school),
Anna was able to interact with the children in the class and
form real friendships. She began to talk with the other
children, happily negotiated playground equipment, and took
part in arts and crafts. Denise encouraged the other children
to see Anna's strengths by having Anna read aloud to the
class, rather than focusing only on her weaknesses.
Throughout the year, we had monthly meetings where
we discussed in minute detail what was working and what was
not. Through these brainstorming sessions, which included 3
or 4 therapists, we found strategies that helped Anna grow as
a student. At one such meeting we talked about a problem
with which none of us could seem to come to a solution.
Denise stated that she felt like a failure as a teacher in not
being able to solve the issue. I stared at her--how could she
be a failure in not being able to overcome the seemingly
intractable issue stemming from Anna's Down syndrome?
She explained that it was her duty as a teacher to make Anna
a success--it was not Anna's failure that led to the issue at
hand, but Denise's failure in not being able to find a solution
to the problem. This was a huge change to me in the way to
look at education--it’s not the child that has to adapt to the
system , but the system has to adapt to the child. Happily,
after ruminating on the issue, Denise came up with a solution
that obviated the problem.
Denise looks at the children, like the squares in the
quilt, as uniquely different, and yet strikingly the same. All
children have strengths and weaknesses, likes and dislikes,
and it is our duty to build up the strengths, minimize the
weaknesses, and help each child be uniquely themselves. To
that end, Denise is an active and enthusiastic volunteer with a
number of organizations that help children with special
needs. We are so thankful that our Anna was able to benefit
from Denise's special gift of teaching.
The Gift of Community
by MARY on 03/03/10
Sometimes you just need a place "where everyone knows your name" and in our little town, that place is our local bookstore. Roy and Yvonne are long time residents of village who have been active in the community for years. Yvonne served on the school board (a yeoman's task) for a long time. We've always had a little independent bookstore in town, but it was kind of a dull place that was not conducive to browsing.
When we first moved here about 15 years ago, we would occasionally visit the local bookstore, but did the bulk of our book buying either in other independent bookstores in neighboring towns or eventually at the chain bookstores. A few years ago, the long term owner of the village bookstore decided to close in the face of the increasing competition from the chainstores and Yvonne and Roy, both avid readers, decided to buy the store. They had no experience running a retail shop, but they were up for the challenge and brought in some experienced help to ease them into the business.
The store soon became a destination both for the local villagers and those from further afield. Yvonne and Roy had a good eye for creating attractive displays, ordering books of interest, and creating a place where people liked to gather and discuss what they had read or wanted to read. Although a small store, their service is superb and they will search high and low to special order books that they don't have on hand. Often when I have entered the store I've heard lively discussions between the patrons and the owners about books and issues of the day. Friendships are made and nurtured there.
Roy and Yvonne don't limit their business just to their storefront. They have become an integral part of the bookfairs held at our local public schools, ordering and supplying all the books and generously donating a good portion of their profit to the PTA. The bookfairs are an enormous endeavor both in time and money for the bookstore, but they enrich the education of the children and further a community spirit.
Yvonne and Roy also seem to help every civic organization in town, whether it's selling tickets to Special Education Parent Teacher Association’s (SEPTA) events, donating items to silent auctions for a variety of charitable organizations, or in my case, helping me obtain multiple copies of books for a booksigning (at no profit to the store) to benefit the Down Syndrome Research and Treatment Foundation (www.dsrtf.org).
Together Roy and Yvonne have built a community of readers while helping foster the larger community of our town. So, if you want to go "where everyone knows your name", stop in to visit with them at the Village Bookstore, 2 Washington Avenue, in Pleasantville, New York and tell them I sent you.
