What Is Down Syndrome?

*Down syndrome (DS) is a genetic disorder, a chromosomal condition - not a disease. It is also called trisomy-21, because of the 3 copies (trisomy) of the 21st chromosome.

*Down syndrome occurs in 1 in every 733 live births.

*In the United States, 400,000 people have DS.

*The life expectancy for individuals with DS in 2009 is well over 60, with the oldest living person with DS being 80 (who just so happens to live in MN!!).

*Kids and adults with DS can benefit from speech therapy, occupational therapy (fine motor skills), and physical therapy (gross motor skills).

Local Resources

When your baby is born, you can get him/her into a program called Early Intervention. The Brainerd School District has a wonderful EI program, and great therapists. My own daughter, Lauren, is currently in the EI program and she is doing so well!

Paul Bunyan Educational Cooperative

There are links for each town from Aitkin to the Emily Charter School, and information on the staff, and their services.

Welcome To Holland

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Welcome Letter-New/Expectant Parents

Coming soon...

2nd Annual Buddy Walk

We had our 2nd Annual Buddy Walk on Sunday October 4th, 2009. We had about 80 walkers and raised about $3600. We had new families-new babies-and got some more volunteers for next year. We're supposed to be starting the planning soon, so we're even more prepared for next year.

Next year's walk-2010-will be the 15th Anniversary of the first Buddy Walk. I am hoping to do something special for it.

Buddy Walk Meeting

We had our meeting with ARC tonight about the Buddy Walk. We figured out quite a few things.

• We are going to order our own Tshirts and create a logo for Angels Up North/Brainerd Lakes Area
• We have decided that it would be wise to have people pre-register to guarantee them a t-shirt
• We set up small committees to help with all the work that needs to be done in the next 2 months
• We decided to have a resource section, and have it feature things important to families who have an individual with DS
• We decided on a definitive time for the registration and the walk
• I think we may be having a longer route at the Walk, other than the traditional 1-mile.

Registration will begin at 2 pm on Sunday October 4, 2009.

The Walk will kick off at 3 pm. You have the choice of just walking the 1-mile route, or continuing down the path, which will (hopefully) be marked in 1/2 mile sections.

Pre-registration is necessary to guarantee a Tshirt, and needs to be done by Friday September 11, 2009. To get a shirt, you will need to collect in pledges or donate at least $10 for each shirt.

At a date in the near future, I will be able to send out pre-registration forms and pledge sheets to whoever wants to participate.

ARC Headwaters

"The Arc fights for people with developmental disabilities so they can reach for a brighter, more inclusive future."

Offering advocacy and support for children and adults with disabilities, and their families, in northern Minnesota.

We partnered with ARC last year, because we wanted our walk to be a fundraiser, and ARC is a 501 c 3 non-profit organization. They handled all of the financial stuff, and that's where our BLA Down syndrome fund is. They keep track of all the doantions, and handle payments to vendors, etc. We are very grateful to have them on board with us, as they know ALOT about planning fundraisers, events, and Buddy Walks. They also know advertising and all the little things to do to make the event a huge success, like last year was.

ARC Headwaters is just one of the ARCs in MN. There is also a national ARC website.