My trip to the 2011 Virginia Arc Convention!

The first night they had a party on the beach.This was at Virginia Beach. I danced with my new friends.

Here I am with my new friend Quntia Grummell. She lives in Newport News.

This is Alison Barkoff and Aaron Zisser with the U.S. Department of Justice.They fight for the rights of people with disabilities all over the country.

This is Shawn Kirk. He is the President of a great self advocate group named VAULT

This is Maggie and another new friend from the group People for People.

More people from People for People and Diana ( in red) from another great group People First.

This is Harvey, Tracy, Pascal and Larry. They showed us their movie, Wretches and Jabberers. It was really, really good. I loved it. Some parts were funny and some were sad.

Larry and (in red) is a really good artist. He uses his hands to paint.

Here Larry and Tracy are typing and what they wrote showed up on the big screens.

I got to meet the stars of the movie! It was exciting!! Tracy gave me his card and is going to stay in touch with me!!

I asked a question in front of the very big crowd. I asked, "Was it difficult to communicate at first?" Tracy said it was like climbing Mt. Everest, but it was well worth it. Above is what Larry's answer was. My mom thought I was brave to stand in up in front of some many people.

This is Jamie Liban. She is the Executive Director of the Virginia Arc. She works very hard for all the people in Virginia with intellectual and developmental disabilities!

I had a blast at the conference. I met lots of new people and I learned alot of new things. When I graduate, I want to come back and be part of the Arc. I want to start my own group of self advocates here in Gloucester!

In two weeks I will be in school in Wisconsin. I told everyone at the conference about Shepherds College. They thought it was really cool!

love, Daniela

Shepherds College update - delayed start until Sept 2

From Tina-

For those of you who are thinking that Daniela must, by now, be at school in Wisconsin, I thought I would give you an update -

About a week before we were due to fly to Shepherds for the orientation, we received a phone call from the college, saying there would be a delay in the start date until the second of September. This, of course, was a big shock to all of us, but after the school explained the reason why, the delay became very understandable.

In every state, there is a program for people with intellectual disabilities called "medicaid waivers". Most of you who are familiar with the world of disabilities know all about this program, but for those of you who do not know this term, I'll give you a basic explanation (you can google it for a more detailed explanation).

Waiver programs were developed to promote individuals with disabilities, both children and adults, being able to live in the community and not be institutionalized. There are various types of programs for different populations and each state runs their program differently. Here in Virginia, there is approximately a 10 year waiting list for the ID (intellectual disability) waiver. Daniela was on that list. The funds help to support services to keep individuals in their family home or, when they become adults, in a home of their own. This can include many types of services: such as vocational services, life skills training, minor services such as weekly visits or 24 hour a day supervision. While this sounds expensive, institutional care is much, much more costly.

Shepherds College has been an incredible provider of waiver services. It's program up until recently has fit the guidelines and a number of the Wisconsin resident students costs were covered, in varying amounts, by the Wisconsin waiver program (called IRIS). Wisconsin, has ranked in the top 10-15 states in providing excellent services tho their residents with disabilities. (Virginia is ranked at 40.....)

This summer the Wisconsin legislature has decided to put a 2 year freeze on new participants. This is devastating to many families in Wisconsin. But for Shepherds students already receiving services, there is a different problem - somehow, the program has recently been denied as being considered as a provider of services for the IRIS program. From my understanding (and this is very confusing) someone has decided the college students are being "institutionalized" because they live together in the dorms and apartments..... Therefore they are not living in the community. Does this mean all "regular" students living in college housing are institutionalized???


The college is working very hard in this month of delay to get the program reinstated to receive IRIS funding. There is a great deal of support within the state government and legislature, which is good news. The college will find out by the end of next week whether they were successful in their efforts. If they are not, sadly, a number of students may not have the funds to continue in the program. The college offers scholarships, but those funds will be very strained by this major loss of funding. This situation would be devastating for affected students and their families. Shepherds College is one of, (if not THE), most innovative and amazing programs in the world helping young adults with intellectual disabilities to live the most independent lives possible. The graduates will be much less likely to need expensive services to live in the community, whether in Wisconsin or anywhere else they live. Please send your prayers and good thoughts that ALL the students will be returning to school next month. The college is also soon going to add a place on their web-site that will accept donations to the scholarship program. (you can donate now as well - if you are interested, email me privately and I'll tell you how.)


I will update you all when I find out the outcome of the college's efforts. Daniela is busy now with a packet the college sent to help her transition into school. She has to keep a record of a number of daily chores around the house. She is expected to read and exercise for a certain number of minutes each week. She also has cooking assignments (She made us a delicious roast with potatoes and carrots tonight!!)

The college was kind enough to reimburse for the fees required in changing our flights so we are rebooked and ready to head to Wisconsin again next month!!

All the best,

Tina

My Summer

I had a great Summer and I am looking forward to leaving for school in less than two weeks!!!!!! I am excited  but I am going to miss all my friends and family here in Virginia.

I am enjoying the time with my cat. I am going to miss her when I go off to college.



I enjoyed making cookies.



We made a trip to Wisconsin last month.This was taken at the Milwaukee Public Museum.

this was in downtown Milwaukee. My mom says this is someone named Fonzie. I don't know who this is!

This was taken at Old World Wisconsin. He made a horseshoe for me. I am going to keep it in my room for good luck.

This was a tree at Lake Geneva. We walked around the lake and went on a boat ride.

I went to Six Flags. I rode lots of rides.

Appointment to the Arc Board of Directors, nonprofit research, and a Daniela update!

From Tina -

I found out yesterday that I have been appointed to the Arc of Virginia Board of Directors!! I am very excited and honored and I hope I will be able to make a real difference in the lives of Virginia's citizens with intellectual and developmental disabilities. I plan to put my main focus in improving opportunities for young adults with I.D and D.D.

My other (admittedly ambitious) plan for the next 3 years is to lay the groundwork for Daniela's permanent return to Virginia so that she can make the most of all the new skills she will have gained at Shepherds College. With that goal in mind, I am in the early (research) stage of planning to build a local nonprofit to benefit Daniela and all her independent minded young adult peers with intellectual and developmental disabilities in our region (the Middle Peninsula). My first step will be to begin classes this fall in nonprofit management.

My goal for the nonprofit will be to help provide these young adults with better access to adult education, transportation, vocational opportunities, housing, and last, but certainly not least, a social and support community within our larger community. Their advocacy, leadership, ideas and goals will be guiding the direction of the organization.

I have decided to move forward with this goal because I have noticed the severe lack of opportunities and support (including financial support) for this younger age group (18-35) to actually achieve independent lives. These great young adults have been taught to expect inclusion and opportunities in their school setting, only to finish school with little opportunities out there for them to make good use of their independence and other skills. In this current financial climate, it's a little hard to be optimistic that waivers and other federal and state programs are going to be there for all of them, at least any time in the near future. I know my goal is a lofty one and, frankly, an overwhelming one, but I am very determined that Daniela and her peers will lead happy, productive lives, even after their parents are no longer around to help make that happen.


I will fill you in more as my appointment and work in setting up the nonprofit become active!

Meanwhile, Daniela is busy enjoying her summer at home before she leaves for Shepherds College at the end of July. She is spending lots of time with her friends and, literally, counting the days until school begins. (Time is just not passing quickly enough to suit her!!) She has already made friends with another incoming student named Katy from New Jersey via Facebook. They can't wait to meet each other and the other new students.

I think it is a wonderful twist of fate that Daniela and I will be starting new journeys this summer, hers in Wisconsin and mine, with the Arc and the (hopefully possible!) nonprofit, here in Virginia!

Best wishes for a wonderful summer to all our followers!!

Thanks to Ms. Dupont - a free link to my article (and other great articles!)In Exceptional Parent

From Tina -

For those of you who don't read the comments here on the blog, we have one dedicated reader who very frequently leaves the nicest and most encouraging comments. Here name is Adelaide Dupont. I haven't figured out a way to email her directly so I will thank her publicly here on behalf of Daniela and myself for all of her kind and thoughtful words!

In her last comment she gave an extremely helpful link I was unaware of. My article from Shepherds College is available from the Free Library! You can also freely access many other great articles at the site from Exceptional Parent and, I'm sure, other helpful magazines.

The photos from the article are not available at the site, but you can see many like them at the Shepherds College web-site. There are advertisements at the site but I think that is a reasonable trade-off.

Shepherds College article in Exceptional Parent magazine

Thanks again Ms. Dupont and to all the lovely people who take time to leave comments on Daniela's blog!

Daniela's Twenty Year Anniversary of being our daughter!!! How far she has come!!

Daniela's translated new birth certificate - saying she was a Romanian child born in the Netherlands to us!?

 From Tina - Twenty years ago on March 7th 1991, a new chapter began in the life of the Goldstone family of Wijnandsrade, the Netherlands (and the good ol' USA!). On that day, a scared little girl with very big eyes entered our lives and would change us all (and many other people who have come to know her) in profound and positive ways. We knew from the start that life would always be challenging for her. Her lack of pre-natal care, possible exposure to alcohol in the womb, and early life in an orphanage would effect her development in serious and permanent ways. Though no amount of love or education would ever have been able to totally restore her original potential, as you can see from this blog, Daniela is one VERY determined survivor! She has come farther than any of us could have predicted (and is only just beginning!)


As we celebrate her twenty years with us, I thought I'd share some photos from her very early hours and days as Daniela Goldstone. I hope you enjoy them!

Our beautiful Daniela, we are so glad you are our daughter! The years have really flown by. I can't believe in a few months you'll be headed off to college - we are all so excited for you and love you very, very much!! This is a tribute to you - SURPRISE!!

(Be sure to check back later for Daniela's post about this special day. We have other surprises in store for her today - shhhhh!

Also, be sure to check the second post I'm including now. By coincidence or fate (or providence!) today my big story comes out in Exceptional Parent Magazine about Daniela's visit to Shepherds College! Read the post to find out all about it and find out how to see the article for yourself! (One hint here - our story made the cover of the magazine!!!!!)

Now - here's our lovely baby Daniela!

March 7, 1991 at the Focsani, Romania orphanage - This photo was taken right before they dressed Daniela and she left forever to go first to Bucharest, and two days later, to her forever home with me, her dad and her big sister. Notice how she is staring at her hand, avoiding all that was going on around her. Also notice the lack of color, toys, or any semblance of joy. This was her life for almost 15 months. She was terrified of the orphanage workers and screamed and shook in fear when they picked her up. When I was there they handled her like a sack of potatoes. The staff spent only enough time with the babies to very quickly give them bottles, change their clothes and diapers, etc. No effort was made to interact with them. As a result, the children only rarely heard human voices. Daniela was silent for many days, except for guttural, almost animal noises. She also had rarely been held and was either stiff as a board or entirely floppy. The children spent their days sleeping or rocking themselves in their beds. Daniela was standing here, but didn't stand again for over a month. She had a very weak crawl and didn't walk until she was 18 months old.

Me, preparing to grab Daniela as the orphanage staff handed her to me out of the window.

Holding Daniela as my daughter for the first time (It was the orphanage tradition that all new parents received their children this way - sort of a birth experience. I thought it was a nice touch. They hadn't taken great care of her, but did keep her alive. Most of the women were poor and uneducated and thought these children (many of them Roma - "gypsy") were of no value. Little did I know Daniela's brother was also there - secreted away from the other children in even worse conditions because he was HIV positive (which the orphanage had given him from dirty needles and infected transfusions). Read about Daniel in an earlier post.

Daniela's passport photo, taken 3 hours after we left the orphanage. She was frozen with fear. Could her eyes possibly have been larger or more beautiful? I don't think so!! She was so silent and had not cried once since we left the orphanage. She was watching every single thing going on around her (but wouldn't look directly at us)>

Back at the Bucharest apartment I lived in while in Romania. She refused to make eye contact and was flapping her little hand. Her self-stimulating behaviors continued for months. Her hands had been all she had to comfort and entertain herself with for 15 months.

Her first present given to her by an Irish adopting mom (who was also staying in the apartment). Daniela didn't want to touch it but REALLY did not want it touching her either. She still has this doll and I think it still scares her a little bit!

After I got her ready for bed the first night - Can you imagine how overwhelmed and confused she must have been? She'd never seen a toy, heard music, been hugged or held while she was drinking her bottle and refused to drink if anyone was near her for several days. In fact, mealtime was almost the only time she cried after she left the orphanage -it was very stressful for her. She had never had anything but milk and raw eggs in a bottle - no solids. She had food issues for years and still mostly loves milk and eggs! She also had almost no pain sensations for years - her nerve endings seemed numbed and she constantly sought sensory stimulation.  She does feel pain now and her sensory issues are almost completely resolved ( a huge step forward for her).

Back home in Holland, Daniela gets to know her Dad for the first time. By now she was beginning to look us in the eye! She loved nostrils (of all things!) and especially loved sticking her fingers in them. "Hi, Pop!" He was the person who received her first hug - at the 4th of July fireworks when they shot off cannons - she jumped into his safe arms and buried herself in his chest! From then on, Daniela has been one big, hugging machine! Just ask anyone who knows her!

Getting to know her big sister, Marcy (age 9). Daniela adored her from the start. Marcy was the person who first made Daniela laugh! Marcy was her great motivator and cheerleader. Daniela also terrorized her big sister (and her belongings) when she finally became mobile! She was a notorious paper shredder. No book was  safe for a number of years!

Home for one month - her first Easter with us - she was beginning to show us her impish personality - curious, energetic, and happy. She was also just beginning to trust us and realize that life had so much to offer! It would take years and years of love, therapy and education for Daniela to recover from her early life. They were challenging years for all of us and her future in the early years seemed quite precarious.  Somewhere in her core, Daniela held a resilient determination and sunny optimism that saved her from turning into a sad statistic. We now look forward to seeing how she begins this new chapter her new life as an adult - learning, working, and sharing her optimism and determination with the rest of the world!




All the best, Tina

Now Available - "Daniela's Journey to Shepherds College" in the March 11 issue of Exceptional Parent Magazine!!

From Tina - What a great day for this issue to come out! March 7, 2011 - the 20th anniversary of Daniela's adoption!! Yah!! Be sure to check out the other post written today for my tribute (and photos!) to Daniela on this special day in her life.


I found out Friday that the March issue of Exceptional Parent Magazine would be coming out on Monday, which I was thrilled about. It didn't occur to me until later the significance of the day - then I got goosebumps!

I haven't shared the news with Daniela yet (and she also doesn't remember the anniversary day), so she is in for 2 big surprises this morning. She loves surprises so I know she'll be excited about these two. I have to go to work this morning, but will cue her in before I leave. I'm planning on taking her out to lunch today - just her and me - just like the day we adopted her.

When we come home, I'll sit down with her and help her put together her own post with her reflections about this great day. We have been taking a break from the blog for the past couple of months. After working so hard to finish high school and then the intensive efforts to look for, apply, and interview with college programs, we both felt we needed a little break to chill out and relax before she gets ready to leave for Wisconsin in July. She has been sleeping in, volunteering at the Humane Society, hanging out with friends and just enjoying not feeling any pressure to accomplish anything (except doing her laundry, caring for her cat, and keeping her room clean - hey, I'm not her maid after all! ;) ) This is a great day to get back in gear. (Soon we'll start shopping for school supplies. Her sister already bought her long underwear for those cold Wisconsin winters!)


Back to Exceptional Parent - wow, congratulations to the editors and staff for doing such a wonderful presentation of my article. It is four pages long with lots of pictures -wow! The pictures on the first page were provided by me (with Daniela in them, of course!) The rest are professional photographs provided by Shepherds College, including....... THE COVER PHOTO! How exciting that is. It's the first time one of my articles has been honored with a cover photo. It's a beautiful shot of a first year student, Samuel Zdancewicz, taken by the talented professional photographer Ellen Cook. Daniela will come to know Ellen next year as she takes many photographs for the college (including their upcoming first graduation ceremony!).

The article provides active links to this blog, the college web-site, and to Think College's web-site. With a circulation of 500,000 readers, hopefully all three web-sites will get lots of new interest. I think families, even with young children, will be excited to see the possibilities for their children's futures.

Here's more great news - you can all see the article in print! The magazine has recently gone digital to lower costs for subscribers (only $19.95 a year for 11 informative issues - plus the fantastic yearly resource guide!) One super advantage of reading it digitally is the ability to click on any link (including to this site!) featured in the magazine and be able to go to directly to the web-site. So cool!

For those of you who want to preview this great magazine, you can do it for free and, if you are careful, you can even read my article! You can only view limited pages in the preview so I'm going to explain here how to make sure you can view my article - here's how to do it:

Click here:

Exceptional Parent March 2011

Go to the bottom of the page where it says PREVIEW. Click on that word.

Next go to - 1) contents: (where you will see the article, "Daniela's Journey to Shepherds College"on the left side). You can click on that to get to the article.

Or - 2) you can click on pages: where you can click on pages 12/13. This will also take you to the article.

After reading the article I suggest you also click on the cover to see the great photo of Samuel and also go to the contents page to see all of the other great material in the magazine.

I hope all of you enjoy my story of our wonderful visit to Shepherds College and the rest of this great magazine!

All the best,

Tina