My daughter, you know as Becky, who is almost 23 now, has “found her cowboy”… he is 26, an Eagle Scout, loves country music and Batman… they really are a perfect match.  The influence they have on each other is one of encouraging each other to more independence.  The maturity I have seen in them since they started dating is amazing.  They really are good for each other.

Jeremy, or “My boyfriend” lives 3 hours away so we dont see them as much as they would like to.  It is a good thing both families have Verizon so that we dont get charged for all the minutes on the phone they rack up!

Motivation… this is the key… Jeremy is motivated to read better, and to become a self-advocate like Becky.   Becky is motivated to get up early like Jeremy… and do the outside chores like Jeremy.  She has learned to use the calendar function on her computer so she can get alerts about her next trip to see Jeremy!

They met at a Hobby Lobby about 7 months ago.  Since that time, Becky has moved out into a trailer on our property and worked on her independent skills.  She takes pride in her work at her Art Studio and still loves to speak to groups.  Jeremy has participated in her Art events and beams with pride – “she’s MY girlfriend”. It was about 6 months before they took the plunge to kiss on the lips! Luckily, like everything else about our kids… they do things slowly. I have heard from parents of married kids that they are not sure what goes on in the bedroom… thier relationship is just different from our own.  I know that we have not felt the need to be worried about them like we would other teenagers.

I am not sure if it was a mistake or not, but a couple years ago, we bought the movie Mr. Blue Sky which is about a young woman with DS who gets married (highly recommend it).  We recently watched the movie Monica and David about a couple with DS who get married.  I let them watch it together and look out… I hear lots of phone discussions about marriage.  When we left thier house, she told me that he planned to have a Man to Man conversation about marriage with his dad… oh boy.

Luckily, our families are pretty compatible.  His mom recently asked me if Becky was as serious as he was – well ya… I’m pretty sure.  Problem is… both of our families are pretty controlling of our kids… neither of us would want to let our kids go.  Time will tell.

I have heard of engagements that last for years.  I am not sure if that is fair to the kids.  Thier lives can be shorter than ours, they tend to get Alzeimers earlier, and I would hate to hold them back in the best years of thier lives.  On that note… I am in no hurry to take the next step… a long engagement means status quo.  It is wonderful to watch them together loving each other.  Change is always scary and hard – for the parents at least.

So, anyone else have any experience in this realm??  Is there a book I dont know about?

So Grown UP!

Exciting week for Becky!  We are here in Washington DC for Becky’s Congressional Gold Medal Ceremony.  It was fantastic!

Wednesday, the ceremony started at 10:00 am at the Cannon Caucus Room “on the Hill”.  Mr. Wolf Blitzer of CNN was there as the Master of Ceremonies as well as the Chairman of the board of Congressional Medal, Paxton K Baker.  The ceremony was attended by several Congressmen and Senators who were there to present the medals to their constituents.

Accepting the Gold Medal with Congressman Canseco and Congressman Sessions

Texas Congressman Canseco was there to present Becky’s medal and stopped to say a few kind words about her.  He mentioned her leadership in her home town of Alpine, TX.  Congressman Session was also there to present an award to his constituents, but he also said a few words about our Texas award winners.  Congressman Sessions also has a son with Down syndrome, so his remarks were focused on the fact that this award is for everyone!

After the ceremony, we went to visit Congressman Canseco and Congressman

At Congressman Canseco’s office

Sessions.  We took pictures and visited with them.  Congressman Sessions was the most personable and made Becky feel right at home.  While we were there, Michelle Whitten from the Global Down Syndrome Foundation arrived and we were able to hear about what she is doing in the world of Down syndrome!  Great contact!

Michelle from Global Down Syndrome and Congressman Sessions

What a day!  To end the day, all the medalists posed for a picture by the capital.  Unfortunately, by the time we got back to our hotel, we were so hot and tired that Becky felt sick.  It was 98 degrees with humidity!

Senator Kay Hutchins

The next day, we were given passes to tour the house and the senate.  Instead of the tour, we chose to go meet the senators.  (Becky has seen Idaho and Texas state houses and was not interested to go listen to more voting).  So, we got our pictures taken with Senator Hutchison of Texas.

What a great honor!

Thank you for voting for Becky as the next Buddy Cruise Self Advocate Speaker!

To see Becky’s video about the Buddy Cruise… go to http://youtu.be/lD9ycfb6re4

http://www.txp2p.org/pifvoting.html   If I win, I get a scholarship to the conference.

Livin’ My Dreams  Flyer about her business.

Great book!

There was a book called Differences in Common written by a mom of an adult with DS that I read in 1991 when Becky was still a toddler (now she is 22).  One of the short stories was called “Why Me?”.  At the time, I was a therapy fanatic… if they did it at therapy, we recreated it at home… if you came into my house, you would think it was a torture chamber!  The story contrasted mild, moderate and severe DS.  I read “Why Me?” and thought oh no, I don’t want her to feel that way.  I realized that she would never be completely normal no matter what I did and if she was mild, she would know it and be hurt.
Well, Becky is mild, not necessarily because of her psycho mom, but because that is how God made her.  The type A personality gene was passed to her.  She doesn’t necessarily say “Why Me?” and she rarely asks “Can I”… but she will come to the level I expect out of her.
It amazes me to watch her continue to grow into her 20s.  If our kids continue to be stimulated, they continue to grow.  The biggest challenge that I see is keeping her engaged in life past high school.
High Schools across the country are doing a great job of integrating our kids into the school and pushing the barriers like this movie portrayed.  Keeping up that level of advocacy for our adults is harder.
I happen to be visiting at Down Home Ranch in Austin, TX where this challenge is being met daily.
As I have said before, my child is in the first generation to have developmental therapy since birth. This will not make them “normal”, but it is an exciting generation to watch now that they are adults.  We must not let them down!

This workgroup was established to: (1) advise HHSC concerning the delivery of services through consumer direction in all programs offering long-term services and supports; and (2) assist HHSC in developing and implementing consumer direction models and expanding the delivery of services through consumer direction.

Rebecca and I (her mom) will be headed to Austin for her Orientation and her first meeting tomorrow.  We are very excited to be a part of the decision making process for the state of Texas regarding Consumer Direction (Self Direction).

Rebecca is currently working on opening her own art studio called “Livin My Dream” here in Alpine at 105 N 7th st (behind BAM automotive).

Becky is actually taking it in stride!  She is proud of her new status as a Texan!  She takes being a cowgirl seriously, and she is workin hard to rope a cowboy!

Alpine Amazing Amigo Christmas Party

We have found 4 other people with Down syndrome in Alpine, but unfortunately, they are all younger and she is not too interested.  We did start the Big Bend Down Syndrome Association, and had our first Buddy Walk last October!  We have also started an Amazing Amigos group, which is a social group for young adults with disabilities.  So far, we have had a successful Christmas party, and we are planning a Valentines party.

Since we moved, Becky has taken her art work to a new level.  Her aunt, who is an artist, has encouraged her (and me) to take her drawing more seriously.  Last November, she had her first art showing at the Alpine Art Walk and sold 23 drawings!  Since then, we have decided to open an art studio for people with disabilities.

Becky got a grant for new businesses from the Department of Rehabilitation for her new business called “Livin’ My Dreams”.  Not only will she create and sell her art, but she will also sell her Isagenix bars and drinks.  She hopes to be a health coach. Public speaking has always been part of her “Dream”, so we will also be promoting her as a Self Advocate Speaker.

Last year, we applied to the TX Commission for Consumer Direction to be in their workgroup.  This last week, I got a denial letter, but Becky was asked to serve!  So, we head to Austin in 2 weeks for orientation.  She is very excited to help the state of TX develop an awesome Self-Direction program.

So, despite the lack of a well-developed social life,  Becky is doing well in the great state of Texas!

At 21, Becky amazes me daily!  She took to DRIVING the riding lawn mower (small tractor) a couple days ago, and has been turning on her own alarm clock and GETTING up for activities she has planned!  She continues to grow and develop, doing more than I expect. 

Her speaking abilities continue to improve as she continues to advocate for people with Down syndrome.  You can still see her http://www.youtube.com/user/lostholman

Over the last year, she has continued to lose weight and is now under 100 lbs and looking awesome!  She is very health conscious and is quick to tell you how to follow in her footsteps.  She has lost 38 lbs total with a program called Isagenix, and is now a coach to her friends.  She and her friends seem to be experiencing more alertness as well as better health with these products!  Becky’s website is www.livinmydream.isagenix.com.  Her friend’s great website www.newangela.com

We will be making a huge move to West Texas at the end of the summer.  Our first order of business will be to attend the National Down Syndrome Conference in San Antonio.  If you are there, look for us in the exhibit hall where we are signed up to have a booth called A New Page!  There we plan to work at community outreach to adults with disabilities.  Hopefully, we will be starting a new Down syndrome support group for the area and giving Becky new opportunities to give speeches.

I will try to do a better job keepin’ up with y’all!

I remember a TV show called Quincy in the 1980′s that had an episode in which parents rejected a baby with Down syndrome and the doctor ordered a DNR.  As they withheld FOOD from the baby, and it died (ok, it was TV), a nurse got upset, the law was called in and the doctor was charge with a crime.  Way to go Quincy!

I guess I shouldn’t be surprised:

DOWN SYNDROME AND ABORTION
By Susan W. Enouen, PE

If current trends continue, it may eventually become “unacceptable” for parents to continue a pregnancy knowing that their baby has Down syndrome. Recent US studies have indicated that when Down syndrome is diagnosed prenatally, 84% to 91% of those babies will be killed by abortion.1,2,3,4 This trend is not isolated to the United States. In England, a 2004 study showed that 94% of babies who were diagnosed prenatally with Down syndrome were subsequently aborted.5 When all Down syndrome babies are considered – those diagnosed prenatally as well as those only diagnosed with DS after birth – studies show that 26% to 37% of these tiny lives will be ended by abortion.  (Physicians for Life)

These are called soft-diagnoses and they are done by ultra-sound.  Many of these babies are found out later to not have Down syndrome.  Our culture promotes the perfect baby as well as the most convenient timing through abortion.

According to bloggers, the Down syndrome Adoption Agency has been notified and there are families willing to take this baby.  There are several DS activists who are calling on us to help by sending letters to the Governor of Arkansas and to the hospital.  This is taken from another blog called The Waksmunski Family:

Please write Gov Beebe of Arkansas

I am encouraging everyone to write Governor Beebe at http://governor.arkansas.gov/contact/index.php. Please include in your letter that this baby boy is in Arkansas Children’s Hospital.  Also include that fact there is a DNR that was placed by the adoption agency and that a DS adoption network has already identified multiple families that are willing to adopt this child.  In the interim while adoption issues are worked out, this child needs a guardian ad litem appointed to protect him.Any letter to the governor should also be cc’d to the hospital personnel below. This should get the hospital’s attention immediately that a full scale blitz may be coming their way so the baby will receive ULTIMATE great care at that point, right?  The hospital main line and they said to send emails to info@archildrens.org but list out the recipient’s names in body of email.

Jonathan R. (Jon) Bates
President, CEO, and Director
Arkansas Children’s Hospital

Dan McFadden
Director of Communications
Arkansas Children’s Hospital

How sad that people are still that ignorant about people with Down syndrome! When I gave birth to Becky 20 years ago, one of my first thoughts was… well, I guess I won’t be dealing with drugs, alcohol, boys, etc.  I thought that would be a perfect child!  Of course, I realize that is not completely true, but when I look at some of the issues that my friends deal with in their kids, and the issues I deal with… well, no one has the perfect kid!

I feel sorry for the twin who went home with people who want a perfect child.  What kind of parents will they be?  Little do they know, they left the perfect one at the hospital.  I could go on…