New Etsy Shop

I'm passing on this information I got in an email

Hi Friends,

I've started a new venture making cloth tunnels for young children with gross motor delays. It's called the T-crawler© and is available through Etsy. Each one is a little different and uses very fun, colorful, recycled and vintage materials. The Etsy site shows how it looks and works.

Check it out here

Please pass this link along to any friends or family who may have children who should be crawling but aren't. Most children with Down syndrome have difficulty with this milestone, but there are many children with other types of delays who also may struggle with a four-point crawl. The T-crawler forces a child to crawl properly and maneuver through on hands and knees that reciprocate.

The T-crawler is also just plain old fun for normally developing kids to take turns crawling through, learning to take turns and work together as team. It makes a nice gift for preschool teachers too.


Thanks!
Liita Forsyth

At Home with Down syndrome

Click here to read the article

Miss Margaret

One of Aiden's aides at school, sadly, passed away yesterday. Miss Margaret had been a volunteer at The Little Light House for many years. She was Aiden's aide on Wednesdays. We will miss her.

Friday Funnies on Thursday

So we were watching the finals of American Idol last night. Actually, we DVRed it. The Guitar Hero commercial comes on and theme of the commercial is from Risky Business with David Cook portraying the Tom Cruise character.
Aiden loved the commercial

Make video montages at www.OneTrueMedia.com

Orthotic Fitting

Aiden's PT, Karrie, brought a SureSteps rep to PT today. Aiden got fitted for his SureSteps without any problems and even helped (he held his foot out for the measurements).

So, before long, Aiden will be sporting his SureSteps. We went with the Baby Sports design

Aiden and Other Kids

Last night, I took Aiden to our Mended Little Hearts of Tulsa meeting.It was the first time Aiden got to go. Our previous meetings, the weather didn't cooperate; either it was too cold or raining.

For the first part of the meeting Aiden sat with me and ate cheese and crackers. Finally, once he got used to the new surroundings, I decided that I would let him play in the adjacent room where all the other kids are playing.

Kids scare the crap out of me! Aiden is little, the other kids are huge compared to him. Being little kids, they view Aiden as "the baby". They want to poke and pet him and they want hold Aiden's bottle. One little girl kept trying to "feed the baby".

After about 15 minutes, Aiden had enough and started to cry. I went into the other room to get him. And he spent the rest of the meeting with me.

Thank You Renee

In my rather hectic week, I forgot to mention how wonderful Renee, Kennedy's mom, is.

She had a giveaway for her 200th post back in April. And I posted a comment on how I really needed to do my own giveaway. Well, I won! The gift was anything from Renee's online store available on CafePress.

There are so many things I like from Renee's store, so I let her choose. And this is what I got. OMG! I love it!!!!!!!!

Down syndrome in Russia

Last night, Aiden and I attended our local Down sydrome support group meeting. I was tickled that I remembered how to get there, as it has been so long since we have gotten to go. With other meetings and illness, sometimes it isn't possible.

Anyhow, I digress. Back to the subject at hand. The key speaker for the night is a volunteer at Aiden's school. Frank is there every day to make sure that things are working properly and to receive hugs that the children shower upon him.

A little background on Frank...

Frank worked for British Petroleum, or BP. And he worked long hours that wasn't on a set schedule. One day, his friend was talking about doing missionary work in Russia. Frank thought this sounded like fun. And was asked to attend. Without asking his wife, he said "Yes". Frank had tried and tried to do volunteer work for churches, but due to not being able to give set times when he could volunteer, he never had the chance.

On one missionary trip to Russia, Frank was asked to step out of the room to speak to a woman. When he stepped out, there was a woman waiting there with her son, a child with Down syndrome. And she asked for help for her son. Frank, being an American, HAD to know something about Down syndrome. At this time, Frank didn't know ANYTHING about children with Down syndrome.

But he did know about the Little Light House, a school for special needs children in Tulsa. So, Frank returned home and went to the LLH. On a rare occassion, Marcia Mitchell, the founder of the LLH, was there. He explained the situation to Marcia and asked what he could do to help this woman and her son.

Children who have Down syndrome in Russia are not, sadly, treated as people. They do not have the right to attend school, as the belief is that children with Down syndrome are "unteachable". They do not have the right to obtain medical treatment. In fact, of all the millions of people in Russia, there are only 3 doctors who will treat a person with Down syndrome. People with Down syndrome are laughed at, not snickered at, but literally LAUGHED at in the streets. Many parents will only take their children outside after dark to avoid the ridicule. (Is your head spinning yet?)

Many children with Down syndrome are placed in orphanages left to die. Mothers give up their children for fear that their husbands will leave them and they will be without a place to live.

Frank returned to Russia with the needed supplies and information to help this mother and her son. He also began a school 400 miles from Moscow, in Voronezh for chldren with Down syndrome. The school is called Up with Down Center. Through this school, children and adults with Down syndrome are taught.

Frank told us about this little boy, who now 13 years later, is a gymnast. He received 8 gold medals in China. In competitions in Russia, this boy has never recieved a medal, because he has Down syndrome.

I am glad that I live somewhere that people with Down syndrome are becoming accepted. However it saddens me to think that 60 years ago, Aiden would have been treated the same way.

The Down syndrome Caucus

Urge your Rep to join the Congressional Down Syndrome Caucus

DATE: May 12, 2008

Your Advocacy Works

On Friday, May 2, 2008, NDSC and NDSS sent an Action Alert urging members to call their Congressional Representative and ask them to join the Congressional Down Syndrome caucus (See Action Alert at the bottom of this News Line). On May 12, 2008, we received an e-mail from Kristin Garesche, legislative staff assistant to Congressman Cathy McMorris-Rogers (R.WA) with an impressive group of Representatives who have joined the caucus. The e-mail reads as follows:

“I just wanted to thank you again for your support for the Congressional Down Syndrome Caucus and help getting Members interested in it. I wanted to update you on our membership. Our co-chairs are

• Rep. Pete Sessions (TX),
• Rep. Patrick Kennedy (RI),
• Rep. Eleanor Holmes Norton (DC) and
• Rep. McMorris Rodgers (WA).
  

Our members are

• Rep. Todd Akin (MO),
• Rep. Joe Barton (TX), Rep. Steve Buyer (IN),
• Rep. Dave Camp (MI),
• Rep. Christopher Carney (PA),
• Rep. Howard Coble (NC),
• Rep. Ander Crenshaw (FL),
• Rep. Lincoln Diaz-Balart (FL),
• Rep. Charlie Dent (PA),
• Rep. David Drier (CA),
• Rep. Mary Fallin (OK),
• Rep. Tom Feeney (FL),
• Rep. Rodney Frelinghuysen (NJ),
• Rep. Doc Hastings (WA),
• Rep. Jeb Henserling (TX),
• Rep. Sam Johnson (TX),
• Rep. Ric Keller (FL),
• Rep. Steve King (IW),
• Rep. Mark Kirk (IL),
• Rep. Doug Lamborn (CO),
• Rep. Nick Lampson (TX),
• Rep. Frank LoBiondo (NJ),
• Rep. Thaddeus McCotter (MI),
• Rep. John McHugh (NY),
• Rep. Lynn Westmoreland (GA),
• Rep. Tim Murphy (PA),
• Rep. Todd Platts (PA),
• Rep. George Radonovich (CA),
• Rep. Tom Reynolds (NY),
• Rep. Dave Reichert (WA),
• Rep. Peter Roskam (IL),
• Rep. Mike Rogers (MI),
• Rep. Mike Simpson (ID),
• Rep. Lamar Smith (TX),
• Rep. John Sullivan (OK),
• Rep. Pat Tiberi (OH),
• Rep. Chris Van Hollen (MD),
• Rep. Greg Walden (OR),
• Rep. James Walsh (NY) and
• Rep. Bill Young (FL).
  
  

In addition, my boss sent out a video release regarding the Caucus to her constituents last week and she wanted to share it with all of you.

If your Representative is not on this list, please call and ask him or her to join the caucus. He or she may contact either Emily Davis, in Congressman Pete Session’s office (202.225.2231) or Kristin Garesche (202.225.2006), in Congresswoman Cathy McMorris-Rogers office.

To find out the name of your Representative, click here and key in your zip code. The main switchboard of the Capitol (202) 224-3121 will connect you to your Representatives office.

Ask your member of the House of Representatives to join the Congressional Down Syndrome Caucus House of Representative members:

• Pete Sessions (R.TX),
• Cathy McMorris Rodgers (R.WA),
• Patrick Kennedy (D.RI) and
• Eleanor Holmes Norton (D.DC)

Each of these members have sent a Dear Colleague letter asking other House members to join the Congressional Down Syndrome Caucus (CDSC).

According to the letter,
“the caucus will serve as a valuable resource for increasing awareness of those efforts and identifying ways that Congress and relevant departments and agencies of the Federal government can help to meet the needs of individuals with Down syndrome and their value to society. The CDSC will promote public policies to enhance the quality of life of individuals with Down syndrome by:

• (1) raising expectations and improving outcomes in education;
• (2) eliminating barriers to economic opportunity in employment and in programs that promote savings and investment; and
• (3) promoting and funding research that accelerates the development of effective treatments and therapies.

In 2008, some additional priorities of the caucus will be to:

Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.

• To promote inclusiveness for people with Down syndrome.
• To help provide family support services and a community of care model.
• To protect the rights of those with Down syndrome and make sure those rights are being enforced.

In addition, the Congressional Down Syndrome Caucus will be holding a briefing for Congressional staff on May 8 to discuss where we are in terms of Down syndrome research. A representative from the National Institutes of Health will be attending as well as Dr. Bill Mobley, the Director of the Neuroscience Institute from Stanford Medical School.

If you have questions about this Call to Action, please contact Susang1961@aol.com or Ricki Sabia at Rsabia@ndss.org. We would also appreciate you letting us know if you contact your Representative.