The wonderful world of dating…

Yes, dating… and talk of marriage… has someone written a book yet about people with Down syndrome dating and getting…. married???  I attend conferences and read anything about Down syndrome… I have been a parent advocate, worked in the disability field and still feel lost.

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?

Gold Medalist in Washington DC!

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!

Please Vote for Becky!

Becky has entered the running for the next Buddy Cruise Self Advocate Speaker!  She has made it to the finals and is counting on you to vote for her!  To tell the judges that you want to vote for Becky, go to http://www.buddycruise.org/contact-us.aspx

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

Congressional Gold Medal

This June, I will be one of the proudest parents in Washington D.C.  My daughter, Becky, who is 22 and has Down syndrome, will be accepting the Congressional Gold Medal of Honor from President Obama.  The Congressional Award is the United States Congress’ award for young Americans.  It is non-partisan, voluntary, and non-competitive.  The program is open to all 14- to 23-year-olds.  Participants earn Bronze, Silver and Gold Congressional Award Certificates and Bronze, Silver and Gold Congressional Award Medals.  Each level involves setting goals in four program areas; Volunteer Public Service, Personal Development, Physical Fitness, and Expedition/Exploration.   http://www.congressionalaward.org/about.php
So, how did she get to this point?  Due to the support that Becky has received from her Support Workers in the Consumer Directed Program, she has achieved all of the certificates and medals including the highest award which is the Gold Medal.
Becky was required to put in 400 hours of Volunteer work, 200 hours of Personal Development, 200 hours of Physical Fitness, and go to an Expedition/Exploration.  Over several years, there have been many support workers who were willing and able to take her to volunteer at nursing homes and pet shelters.  Some support workers took her to classes at the local community college, helped her practice piano and taught her to cook while others took her skiing and to karate classes.  These support workers went above and beyond the call of duties many times to help her accomplish her goals.
One of the hardest parts of achieving this award is to keep good records and submit a well organized record book.  One of her support workers, who has been her friend for many years (another mom of a boy with Down syndrome), was willing to help Becky organize and submit her book for her Silver and Gold medals.
I nominated Molly to be my wonderful family support for the Texas Parent to Parent conference contest.  If you like this story, you can vote for it at

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

 

My Challenge

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!

The Texan

We have moved to Alpine, TX… almost to the end of the known world… and away from our Amazing Amigos… :(

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!

Go… Go…Go!

Wow!  It has been almost 6 months from my last blog!   I am sorry and offer no excuses – we are all busy…

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!

Perfect Babies?

At first, when I read it on Facebook, I couldn’t believe it.  Twins were born in Arkansas and one of them has Down syndrome. Before they were born, the twins had been planned for adoption, but apparently, the parents wants perfect children, so they rejected the baby with Down syndrome and now the child sits in the hospital with a Do Not Resuscitate order on it!  Sick!

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…

Health Craze

One of Becky's weight loss buddies

There is a new craze hitting our group of kids, mainly the girls, with Down syndrome.  Probably due to external pressure, they are getting into health and losing weight!  Obviously, this has long been a problem and sometimes there are no easy answers.  I once read a story about a man with Down syndrome who had a name for his bulging stomach, talked to it, and made sure it got fed!  Funny, but not healthy!  The girls  in Becky’s group of friends are all losing weight, exercising more, and very vocal about it.   I can’t help but wonder if it isn’t related to their new interest in boys!

Our family has always been health conscious, but in Becky’s senior year of high school, she started gaining weight.  We have worked hard to curb her appetite and increase her exercise.  Over the last year, she has lost 30 pounds and boy is she proud!  The last 10 pounds, she has lost as a result of our nutritional supplement plan, Isagenix.  She loves it and tells everyone about her weight loss and her shakes.

After using the Isagenix and seeing the amazing health benefits we have had using the products, I am excited to share this health and business opportunity with others.  And of course, Becky is excited to tell others also.  Then, I was introduced to a new friend named Angela.  This young lady with Down syndrome has caught the exercise and nutrition bug that Becky has, but she has done it all with Isagenix.  She is now a spokesperson for her mom’s business and they are working to spread the news about this amazing product!  Here is her awesome story on youtube .

I am beginning to get excited to think about the business possibilities for Becky if she were to promote the product.  Could this be a business that could generate enough money to cut the dependency on SSI?  I am so frustrated with her job prospects that are hindered by SSI dependency.  For only $19.00, I signed her up as a distributor and will see what could come of it.  To see her own website as a distributer, go to Livin My Dream.

Wouldn’t it be great to combine health and income together for our kids!!

Stuck in the Amsterdam Airport

From another caring parent

The enclosed is from another parent of a child with a disability, who is only 2.  It is a well written expression of what some new parents experience.

Enjoy!

Amsterdam International

To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.

In the special needs world, there is a poem (essay? whatever.) called “Welcome to Holland.” It is supposed to explain what it’s like to have a child with special needs. It’s short and sweet.

It skips everything.

While “Welcome to Holland” has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written “Welcome to Holland”, I would have included the terrible entry time. And it would sound like this:

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything—you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization—your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up—you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious—how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010
http://niederfamily.blogspot.com/2010/10/amsterdam-international.html

And also from Dana:

Please feel free to forward this, blog about it, post it places, etc. My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone. If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address (uncommonfeedback@gmail.com) so that I could be contacted if anyone wants to reach out.

Also, if you blog about it or post to a website, please email me to let me know, because I think that’s pretty cool :)

Thanks for reading :)