September / October 2004
Volume 22, Number 5

Our neighborhood block party was held recently, a great chance for a lot of nice people to get together to chat, eat, play, and enjoy each other’s company. At one point I took myself out of the festivities to observe my family and friends, and to consider the little community created by these 18 houses and their residents. The youngest is four; the oldest, probably 70ish; we have young couples, single men and women, teenagers, grand-parents, and a bunch of us boomers; there are students, stay-at-home moms, retirees, and a wide variety of working folks, with everything from a maintenance worker to a teacher to a bank executive. And there is one kid who has Down syndrome – my kid – a perfect ingredient in the mix.

For many of us, after our immediate families, our neighbors were the first people to welcome, befriend, and embrace our children with Down syndrome. As our kids grow older, our neighborhood boundaries expand and the little community we started off in is now bigger, offering more opportunities for work, play, and friendship. Although there is plenty of room for improvement, in the year 2004, one can find individuals with Down syndrome throughout more and more communities, as they move into their own homes, work in a variety of settings, and even attend college. Hopefully, there will be new “neighbors” to welcome, befriend, and embrace those individuals.

This special issue of News and Notes features some of those folks and the great ways they are out and about in their communities, be it through work, sports, school, or organizations. They may not realize it, but as those individuals go out into their communities, they are, in a way, working as “ambassadors” for the Down syndrome population, proving to the world that “they” are capable, hard-working, good people to have around. The kind of people one might want in one’s neighborhood, in one’s community.

Kindergarten "A New Community"
by Jim Aloise
Jim Aloise is president of Aim High, as well as dad to Sarah

I have heard that you should write what you know. When it comes to the topic of Down syndrome, what I know is my daughter, Sarah. Sarah is five and transitioning to Kindergarten this week. It’s a tough transition for my wife, Debbie, and me. Sarah, however is doing fine – in fact, better than fine! The three of us went to orientation together, Mom and Dad with copies of Sarah’s IEP for everyone. We also brought her behavioral plan (which worked so nicely it isn’t needed anymore), a daily report template modeled after the one we used in preschool (so we can keep track of how Sarah is doing), and several other documents. We could not help but wonder whether we were being overbearing – what if all 17 other parents had done the same thing with their children? Oh, well, we want Sarah to have a wonderful experience in Kindergarten and we want all her teachers and her aide to know as much about her as possible.

Preschool seemed so different. The class was smaller, there were more teachers, and there were several other children with special needs, including two with Down syndrome. Mom drove her to school, so she saw Sarah’s teachers every day. Then Sarah took the bus home at the end of the day, which, like for most kids, was the biggest thrill of all. Now Sarah will take the bus both ways. No more Mom’s seeing the teachers every day. And the bus ride, especially the ride home with all the rest of the first through fifth graders – how will she do with that? We had similar worries with our oldest daughter, Justine, when she started Kindergarten. But somehow it is more worrisome with Sarah. Debbie asked me if she should follow Sarah’s bus to school. “Did you follow Justine’s bus on her first day?” I asked. She hadn’t. But again this is Sarah. About a half hour after we hung up I called her back and told her it would be okay if she followed Sarah’s bus. She responded that no, with only a 2-1/2 hour school day, maybe she’d better get started on the lawn as soon as Sarah leaves – it was really overgrown and the forecast was for rain starting tomorrow. Finally, I thought, mom is letting go - just a little. But somehow when I get home tonight I won’t be surprised if I see something akin to “crop circles” in the lawn – the product of a distracted, worried, and loving mom.

Being a Boy Scout
by Christopher Williams

I am Christopher Williams. I am involved with my community through my Boy Scout troop. We do many activities to help the community. We have done activities such as Scouting for Food, which we give to the food pantry. We have worked with the Special Olympics during bowling and also when they had the Olympics at SUNY. We have made cookies for the elderly at Christmas time. We also have helped out one of the schools with the trail so it can be handicap accessible.

I joined Cub Scouts at six years old. I am fourteen years old and I am now in the Boy Scouts. I work very hard earning my badges and have advanced rank to Star and am working towards getting my Eagle some day. I love going camping and hanging out with my friends. I love being a Boy Scout.

Adventures in Girl Scouting
by Maribeth Jahn
Maribeth Jahn is Emily’s mom

We all know how hard it is to make a good friend. It is even harder if you have Down syndrome and have very few social skills. Five years ago I decided to enroll Emily in Girl Scouting, primarily to help her make friends. Now, we all know that Girl Scouts is an adventure. So, what do you get when you take one little girl with Down syndrome and add adventure? You get one extraordinary adventure!!

Adventure is learning to make a sit-upon, but not having the fine motor skills to weave the thread thru the holes.
Friendship is having other Girls Scouts help you weave the thread.

Adventure is taking a walk in the woods, but being too slow to keep up.
Friendship is your fellow Girl Scouts switching off hiking with you so you won't be alone.

Adventure is watching your Mom faint from giving blood at the troop's blood drive.
Friendship is all the girls keeping you busy till Mom feels better.

Adventure is playing the drums in the troop talent show without real music.
Friendship is Girl Scouts listening quietly to your drum playing and clapping and cheering when you're done.

Adventure is white water river rafting down class II and III rapids.
Friendship is multiple Girl Scout hands helping you up when you slide off your seat in the raft.

Emily has enjoyed the adventure. I have enjoyed watching my little girl laugh and play with others with a big smile on her face and sound of giggling not far behind. I believe her fellow Girl Scouts genuinely enjoy her company. Someone once told me that exposure to a subject was important even if the person was unable to grasp the whole subject. So, even if Emily does not make a lasting friendship from Girl Scouting, the exposure she is getting from the adventure is well worth the trip.

Shoes
by Veronica Swart

I know that it sounds funny, but I am in a shoe dilemma. Madison desperately needs a new pair of sandals and sneakers. Sounds simple enough, yet to a child with Down syndrome and feet like Maddie’s, buying shoes that actually FIT is no small feat. (Pardon the pun.)

Madison has very short but extreeeeeemly wide little feet. They are not just “wide” – they are “extra wide”. Like other parents of children with Down syndrome, we must buy Maddie’s shoes at a specialty shoe store, which means she only has two pair of shoes at a time because HER shoes are so much more expensive than ours! Besides enduring the painful process of getting Maddie to try shoes on, we must also schedule the time that we are going to buy her shoes because her size is never available for long. Do you have a shoe date on your calendar?

Upon entering Kindergarten in her new shoes, Maddie will be required to know how to tie her shoes. If she does not, she may be paired with a buddy who DOES know how to tie and shame may fall upon our family, as the community will know that Maddie does not know how to cross the bunny ears. That poor family down the road…still shunned to this day. We don’t even buy Maddie shoes with LACES!!! It’s either zip and go or pull and Velcro when it comes to her shoes (which she can now put on all by herself!).

It seems that Maddie’s shoes will have a lot to do with her approaching year in Kindergarten. Maddie will be wearing new 11½ double extra wide Velcro sneakers when she gets there this year. Isn’t it just so interesting how neither her shoes nor her education is a “One size fits all” entity?

FYI Sidebar - Diane Lang, Ginny MacPhee, and Patti Fagan recommend the Stride Rite, Birkenstock and Teva companies for wide shoes. Thanks!

The Top Ten Reasons Why Gianna Feels Part Of Her Community
by Virginia MacPhee
Virginia MacPhee is the mother of eight-year old Gianna

10. Playing on a recreational soccer team with her sisters.
9. Being an active member of her Brownie troop and attending Girl Scout day camp for a week this past summer.
8. Making her First Holy Communion with her school and church friends.
7. Going to her neighborhood school, since kindergarten until present, while learning beside and with her peers in the general education classroom.
6. Having a great grandmother, two grandmothers and grandfathers, ten uncles, eleven aunts, seventeen first cousins, two sisters, a father and a mother who love to spend time with her all around the community.
5. Having a friend take the bus home to her house for a playdate after school.
4. Being invited to a friend’s house for a playdate.
3. Getting invited to friends’ birthday parties.
2. Going to a classmate’s Salon Sleepover Birthday Party and staying the entire night.
1. Having a girlfriend from school win a limo ride for herself and her friends for the first day of school and...choosing Gianna to ride with her!

Hospital Volunteers
by Pat Hogan
Pat Hogan is the mother of twins Chris and Tom

Chris and Tom Hogan spent their summer as part of the Junior Volunteer Program at Bassett Healthcare in Cooperstown.

Chris escorted patients to various departments within the hospital. He also moved medical records, x-rays, and wheelchairs to where they were needed to go.

Tom worked in the hospital cafeteria cleaning tables and filling the napkin dispensers and salt and pepper shakers. He also kept the milk cooler and the Snapple cooler stocked with drinks. Do you know how many different kinds of Snapple there are? Ask Tom!

It was a great experience for the boys to work independently without their brother!