Trisomy 21 Translational Research Parity Act Introduced in Congress

News from DSRTF (Down Syndrome Research and Treatment Foundation) I have not read through the entire text, but I will pose this question; How in the world will our government pay for any new programs? I love that someone is trying to help people with Down syndrome, and I pray this passes for my girls and for their and everyone with Down syndrome future. Take the time to read through, write a email or call your representative or Congressman/woman and explain WHY it is important to your family.

The text from DSRTF:

Trisomy 21 Translational Research Parity Act Introduced in Congress–
Importance for Down Syndrome Biomedical Research and New Opportunities
On September 25, 2009, the Trisomy 21 Translational Research Parity Act of 2009, or the “21 Act” (H.R. 3656) was introduced in the US House of Representatives by Representatives Cathy McMorris Rodgers (R-WA), Patrick Kennedy (D-RI), and Pete Sessions (R-TX). A companion bill (S. 1762) was introduced on October 7, 2009 in the US Senate by Senators Sam Brownback (R-KS) and Sherrod Brown (D-OH). The “21 Act” represents an important critical step in expanding and coordinating Federal support for Down syndrome biomedical research, including translational research to convert the results of basic biomedical research through clinical trials into new therapies, and specifically includes:

Development and initial funding for a National Down Syndrome Patient Registry and Biobank; Establishment of at least six Down Syndrome Translational Research Centers of Excellence; and, Establishment of a Down Syndrome Coordinating Committee to coordinate activities across the National Institutes of Health, Centers for Disease Control and with other Federal health programs and activities relating to Down syndrome.

The text of the “21 Act” can be found through this link. A summary is attached below.

The Down Syndrome Research and Treatment Foundation (DSRTF) has worked closely with the sponsors of the legislation, as well as Down syndrome organizations and biomedical researchers and physicians to ensure this legislation addresses critical needs for advancing new and recent biomedical research progress and potential new therapies for all individuals with Down syndrome.

How you can help:We need to educate Members of Congress on the importance of enacting the Trisomy 21 Translational Research Parity Act of 2009. There is much that yet needs to be accomplished to promote passage of this new “21 Act”. Additionally, while the recently introduced “21 Act” includes initial funding appropriations for the National Down Syndrome Registry and Biobank, specific funding appropriations for the Down Syndrome Translational Research Centers of Excellence will require additional Congressional action. As you know, NIH funding for Down syndrome biomedical research has been, and continues to be, disproportionately and extremely low. We must continue to work together to increase Federal funding.

You can support this effort by contacting your Senators and Representative to ask that they join as co-sponsors of this legislation. You can easily find contact information for your Senators and Representative and use the supporting draft email/letter through this link.

If your House Representative is not already a member of the Congressional Down Syndrome Caucus, this may also provide a great opportunity for you to include an additional note or separate email asking that they join the Congressional Down Syndrome Caucus. To see whether or not your Representative may already be a member of the Caucus, you can review the current list of members through this link.

Since being founded in 2004, DSRTF has become the largest non-governmental source of funding Down syndrome biomedical research focused on cognition and generated more than $5.6 million to fund critically needed major new results-driven research, with exciting advances, to improve cognition for individuals with Down syndrome. As DSRTF continues to grow and advance its efforts with your much appreciated support, it is also critical that increased Federal funding for Down syndrome biomedical research becomes a reality to sustain and extend new advances to create deserved new opportunities for all individuals with Down syndrome. Thank you for your efforts and help.

Trisomy 21 Translational Research Parity Act of 2009 (S. 1762/H. 3656) - Summary

Down syndrome, or Trisomy 21, as it is called within the medical community, is caused by an extra copy of the 21st chromosome. There are more than 400,000 people living with Down syndrome in the US. An error in cell division, called non-disjunction, happens during development of reproductive cells prior to conception for reasons which we still do not understand. The extra chromosome causes varying degrees of cognitive impairment and physical abnormalities.

Persons with Down syndrome can also have a wide range of health problems, including congenital heart defects, obstructed digestive systems, thyroid conditions, hearing problems, leukemia, increased susceptibility to infection, sleep apnea, and respiratory problems. Individuals with Down syndrome also are at a higher risk of developing Alzheimer's disease, epilepsy, autism, and many neurological and psychiatric disorders, including obsessive-compulsive disorder and depression.

The Trisomy 21 Translational Research Parity Act of 2009 (the 21 Act) would establish an infrastructure within the Department of Health and Human Services (HHS) to facilitate results-oriented research, forge new partnerships between academic institutions and clinics to work together to conduct translational research, produce targeted-funding opportunities, and help to develop new interventions, treatments, and therapeutics for Down syndrome.
Translational Research: The creation of Down Syndrome Centers of Excellence at the NIH would integrate basic and translational research and move findings efficiently toward clinical applications in Down syndrome. Research conducted on Down syndrome may also have spinoffs that increase knowledge about other areas of research, diseases, and conditions. Through outreach and communication efforts, the Centers will inform researchers and the public of scientific advances and improvements in medical care.

As you may know, the Children's Health Act of 2000 (Public Law 106-310) amended the Public Health Service Act and included a number of provisions that addressed the research and surveillance needs of many disabilities (e.g., autism, traumatic brain injury, Fragile X, juvenile diabetes, asthma, epilepsy). However, this landmark legislation did not address the significant research, surveillance, and clinical care needs of Down syndrome and thus has been an impediment to progress in the Down syndrome research community over the last decade. The 21 Act attempts to incorporate Down syndrome as an area of permissible research and surveillance at the National Institutes of Health and the Centers for Disease Control and Prevention and will foster a better understanding of Down syndrome.

Coordination: The 21 Act would expand, intensify, and coordinate translational research on Down syndrome across government, academic institutions, Down syndrome clinics, and industry. Research and funding would be supported by administrative and program staff at the Department of Health and Human Services (HHS) and the individual NIH Institutes and Centers. The bill also calls for the establishment of a Down Syndrome Coordinating Committee, which includes Federal agencies and members of the public appointed by the HHS Secretary, to coordinate activities across Federal health programs and activities relating to Down syndrome.

Surveillance: The 21 Act would provide resources to build a National Down Syndrome Epidemiology program by constructing a National Down Syndrome Patient Registry and Biobank, through cooperative agreements at the CDC. The National Down Syndrome Patient Registry and Biobank would:

Establish a centralized or distributed brain, cell, tissue, DNA, and RNA bank;
Characterize a cohort of patients for genotype-phenotype investigations to inter-operate with the bank; and Correlate the nature and severity of cognitive deficits and age of onset and severity of dementia.

This comprehensive surveillance program would enhance the clinical care for patients with Down syndrome, help coordinate research and clinical activities through the Down Syndrome Translational Research Centers of Excellence with the activities of the registry and biobank, and create a common data entry and management system for Down syndrome patient data collection and analysis.

Happy Thanksgiving

31 for 21-Happy Birthday Kara

My sweet little girls is 5 today. Will write more and add pictures later, I am falling asleep

31 for 21-Day 27-Amanda and the cat

This is Fuzz, he was a stray who was wailing outside the house a year ago. Somewhat feral and very skittish then. He has really grown into a sweet cat, he does not like to be picked up, but he loves for people to pet him, and he adores Amanda.

I heard Amanda giggling in the back yard and looked out and found her and Fuzz playing, they stayed together for quite a long time before Fuzz came over to yell at me; he was hungry.

You can see how huge he is, he was such a tiny grey fuzzball when we found him.
Where he got his name.

Isn't is great when a child can love an animal so much, at first she was a little rough with the pets, but after being scratched and bitten, she has learned to be more gentle.

Both Amanda and Kara were tired after SIT today, she did a lot of swinging and bouncing with Kara, but more craniosacral and deep pressure work with Amanda, Amanda was not laughing like Kara was either. Despite them both having Down syndrome, they are polar opposites in temperament and their therapy goals. I will say it again, all kids with Down syndrome are not alike, despite what folks try to tell you. LOL

We ran into a snag with scheduling the appointments; we were supposed to share OT units between Amanda;s feeding therapy and Kara's OT, but no one told P this, she though the girls were coming weekly, she said she simply cannot make a two hour time slot in her schedule every other week, so she wants to see Kara one week and then Amanda the next, that will not work for our homeschooling schedule. So we are going to have to compromise somehow. I cannot have that much time out of our day away from home weekly, we were gone over 4 hours today, and Meghan missed some school lessons.

Oh Meghan, she did not want to wear the pants I got out for her, some pink stretch cords from last year, worn once. They fit perfectly, but she was throwing a huge fit about wearing them, she kept telling me no, no, no and I used a line from her favorite movie to make her laugh and she agreed to wear them, but oh boy, what a conniption fit she threw.

We were all stressed when we arrived at P's for OT. Funny, we went into her front porch and knocked, rang the bell, and no one was there, I left to get gas and returned and she said the therapy place was in the back of the house, in an old guest house. Ah well, now we know.

After therapy we went to Target to buy Kara some birthday presents. I really cannot go by myself, so she picked out what she wanted, A Groovy Girl and a Barbie. She will get a bigger present too, I just do not know what to get for her.

So tomorrow Kara turns 5! I will update her blog with pictures tomorrow.

31 for 21 Day 26 SIT

Tomorrow morning Kara and Amanda will have their first sensory integration session with P, an OT specializing in this type of therapy.

From this website: http://autism.healingthresholds.com/therapy/sensory-integration
Sensory integration therapy is based on the assumption that the child is either overstimulated or under stimulated by the environment. Therefore, the aim of sensory integration therapy is to improve the ability of the brain to process sensory information so that the child will function better in his daily activities.

To be honest, I witness the girls seeking sensory experiences on their own, they certainly do not avoid certain situations because it is sensory overload. Amanda is overwhelmed by new people; but a few hugs and kisses and she adjusts, so we will see. I think there will come a time when I stop listening to people who see my girls once a week and trust myself more. Because they were not born to me, I felt less sure of how to approach their special needs, but we, Kara and Amanda and I, are learning more about one another every single second of the day. I feel more secure in my own decisions and judgements and feel less inclined to listen to others, I know my children better than them, maybe I did not when they first arrived here, but that is not longer the case.

I hope this makes sense to other moms and they can understand what I am trying to say. When you first adopt a child, they are a mystery to you and since you know so little about their personality and their past experiences, you welcome input from others, you need the support, but after a time the support feels more like interference, and it does complicate the bonding process because these strangers are in your home and the children are not certain who these people are, they keep leaving the strangers and sitting with you because they now feel safer with you, and this makes the strangers (therapists) impatient. I do not think any of our therapists have worked with internationally adopted children and they are not at all familiar with post adoption issues and institutional behaviors. These are not children who have lived with a family all their lives, they have attachment issues, they have trust issues, and they need a very patient, loving, and understanding person to help them.

The SIT we see tomorrow is rumored to be all of these things, except I hear she is also very stern, so fingers crossed this will be a positive and helpful experience for my girls, sometimes I feel like we are pushed into too many therapies and at times I feel like it is a negative judgement of my parenting abilities, as if they are saying I am not enough to help my children. And perhaps they do think this, after all, what do they know about me or my family except that one hour they spend with us. My girls are more important than my bruised ego though and I (we) will do what we need to to make up for all they lost their first 3 years.

However I am glad we sought therapy for the girls, they needed the extra help, and for the most part it has been a positive experience with some exceptions. I am a demanding person, I admit it, headstrong, opinionated, I want what is best for my girls and I am getting too old to care if I am not being nice all the time. People do not have to like me as long as they do their best for my children.

I am hoping that P will be as wonderful as A, our ST, has been for our family.

31 for 21 Day 25-Buddy Walk

Kara having a good time.

Three of the 4 children with Down syndrome enjoying the bouncy obstacle course. They could not do what typical kids could and wanted to play in the middle. That was not to be tolerated, they kicked us off.

Oh goodness, missed another day in the 31 day promise.

Our Buddy Walk was today, I look forward to it every year, always hoping the girls will have a marvelous time, this year it just did not meet our expectations.

I wrote more, but I think I will keep my mouth shut, we left early with 2 disappointed and crying girls, so much for a fun family day.

31 for 21 Day 23-

I missed a day, I could have sworn I wrote a post for our blog yesterday, but I certainly was wrong; there is nothing here for the 22nd.

I am warning you, I am in a melancholy mood, I read a blog that brought me to tears and my heart is breaking for this family. In addition to this, I spent 20 minutes going through pictures of children on the Reece’s Rainbow website with A, the girl’s speech therapist. She had never seen it and as she read through some of the children’s stories, I saw on her face the same sorrow and shock I felt the first time I saw RR, (I see more hope now than I did then, after so many of these children now have forever families) how I sat and cried in the wee hours of the morning, everyone asleep but me. I was exhausted when I woke the next day, but the first thing I did was go right back and visit RR again. I went back day after day, sometimes several times a day, and the tears came every time. Hundreds of unwanted children, abandoned because they were born a little different. I visited for weeks and the weeks became months and then I finally realized that crying would not help them, praying yes, but what they needed was a mommy and daddy.

It took me a long time to come to terms with what my heart was telling me; that we should adopt one of these precious children, and after going through the requirements of each country and crossing them off because we were too old or had too many children, I settled in on Ukraine. To be honest, it was also because it had the least expensive adoption program. Mind you, I never mentioned adoption to Tom, he had no idea what I was thinking, I was afraid to say anything out loud for fear someone would shoot down the dream. And then I emailed Andrea, and one of the first things I told her was that I was a cancer survivor, and would someone let me adopt.

Before we could even consider adoption, I had to talk to my oncologist, I never asked about my survival chances, I never wanted to know from them, because I watched my mother die exactly when the doctors said she would, and I did not want a self-fulfilling prophecy handed down on me. ( oncologists rarely share this with aptients any longer, that was 33 years ago) So I got up the courage to ask him if he thought I had a long life ahead of me. He said “You are in complete remission”. Now if you have ever had cancer or had a loved one who has, you know those are the 5 words you hope and dream for. With his blessing, we went ahead and committed to a girl with sparkling blue eyes and an impish grin.

I was scared though, I had this very private fear that adopting another little girl with Down syndrome may put Meghan in danger, that in essence it was telling God that his tremendous gift to us, our Meghan, was not enough and we needed MORE children like her, I actually felt like I was being greedy. I was very scared that we would bring home Sanna (our first commitment) and Meghan would fall ill. So I prayed a lot, HF and I had many conversations about how much we cherished Meghan, but we wanted another child to have a chance to live in a family and know what it was to have the love of parents. My fear of losing Meghan was one reason she came to Ukraine with us, I wanted her with me constantly, thinking if she were within my sight and no harm could come to her. Irrational, yes, but I suffered enough loss in my life to know that terrible things can and do happen to ordinary people, that life can be ironic, and that the universe is sometimes very cruel.

It wasn’t just our adoption, I always felt like looking over my shoulder, not certain the threat of cancer was gone in my life, we call it; “Waiting for the other shoe to drop”…I spent 3 years post cancer waiting for more bad news, I had lost three dear friends diagnosed the same time I was during those 3 years, their loss was devastating for me and for many in the on-line breast cancer support group I moderate. All three women had minor children, one had very young children, she was a young mom. They were gone so fast and it scared the rest of us, because you know, “There but for the grace of God go I”. I can almost feel a synergy with battle veterans, all those soldiers who fell while you lived, and the guilt is tremendous, why did you live when these very special people did not? This is why people who live after cancer are called survivors; because we lived through the ultimate battle, one for their very lives. It also gives us a sense of just how short life is and what a tremendous gift each second we live is. I live in gratitude for every day I am living and breathing, so thankful that I did not fall and that I was allowed the gift of adopting two very special children, two little girls who just had teeth brushed and are getting ready for bed, here in my home. I have not lost the wonder of it, of our adopting them, it seems unbelievable and yet here they are. I feel so wonderfully lucky, and honored that we can parent both of them.

So yesterday was difficult, not because of what we heard, the neurologist was very positive, but because of what I imagined, those terrible mommy moments where your mind goes to the dark places, the “what if’s’ where your children are concerned. What if Amanda has epilepsy? Well certainly it won’t change who she is now, because she would have had it already, but maybe she has a brain tumor, too many women I loved have suffered through brain tumors from breast cancer mets, my mother was one of them, how did they find out? They had a seizure that told them cancer had spread to their brains; and children get cancer all the time. After I while I told my mind to stop, quit thinking the worse, surely nothing like that can happen to one of my children, but yes, bad things do happen to children all the time. We will have to wait to know about Amanda’s epilepsy or lack of, I honestly feel like she is fine, it was just that morbid mind going crazy.

I am going to ask again for prayers, first for a sweet little girl who is in Eastern Europe and desperately needs a family, her name is Paula, and we are her Christmas Warriors, and we are asking you to send a donation for her grant fund, maybe having money to help them will enable a family to commit to her? Click on her picture to donate.


I added a button to our blog for Polly too, her parents learned she has a rare condition called Moyamoya, it came on suddenly and I know that your prayers will comfort Polly and her family. Yes, Polly also has Down syndrome and she also has a new sister with Down syndrome adopted from Ukraine. They are an inspirational family with strong faith. They need love and support right now.

Grab This Button

31 for 21- Day 21-prayer request

OT today was productive for Amanda, but not so much for Kara or Meghan, who were not being cooperative at all. I scolded Meghan after M left and she kept coming to me, hugging me and saying she was sorry. That is a first, she will say she is sorry, but in a sarcastic tone, she seemed genuinely sorry today. Maybe she will try harder next time? M kept calling the girls by the wrong names, so many people do that when they visit, they cannot remember who is who. One thought Meghan was adopted and Amanda was our homegrown daughter, guess it is the blond hair LOL.

Amanda will be getting an EEG tomorrow, some of her therapists were concerned because she seems to stare off into space a lot, not certain whether it is behavioral or if she is having petit mal seizures. Since Amanda does have plagiocephaly, a seizure is a possibility, I am hoping and praying she will not have a seizure disorder, poor little girl, she has enough to deal with already. Will you pray with us that she will be OK?

31 for 21- Day 20

Since Meghan was born I have been collecting articles about people with Down syndrome, happy stories, inspiring stories, I needed the assurance that my daughter could have goals for her future, that she would not stop learning after high school, and indeed the many young adults I read about show exactly that. Now we have three little girls who have a future we look forward too. Certainly not the gloom and doom picture painted by that first pediatrician, almost 9 years ago.

I wanted to share a video, I am a little upset that so many great youTube videos about Down syndrome have disabled embedding, I suppose those of us with blogs put too many you Tube videos on them, who knows, but here is the URL:http://www.youtube.com/watch?v=mk5Wma45ZMw

31 for 21- Day 19- pictures

Last Wednesday Julia's school had their choral concert. They also have the musical theater group perform a few numbers. The song was wonderful, the young folks did a great job with singing and the movements. If you click on the picture, it will enlarge, you can see a few faces of teens with Down syndrome, there are quite a few in her class, and they love singing and dancing, it makes us so happy to see them!

Julia says that at times the class is challenging because the teens with autism can have behavior issues, still, she says they are all very protective of the kids with Down syndrome and other disabilities in the class. I think it is wonderful that they can learn so much from each other.


Kara has the widest shoulders, a great physique for gymnastics. She is a bit of a chunk, but has the tiniest hips! Amanda is ignoring me; as soon as she hears the beep of the camera, her head goes down. Meghan never fails to smile for me, she is a ham!

Yes, in the pool in October, we do not like this heart wave at all, but the girls are loving the pool again!

It is so apparent that Meghan is beginning to leave little girlhood behind and become a tweenie. Her face is changing, maturing, and her attitude is getting snarky :o). Hormones? Please say no!

The many faces of Amanda. LOL Her heair looks pretty though. ;o)

Amanda is really getting a fun personality, she is jabbering away all day and, pulling shirts over her head while she rocks on her doggie. Check out that face she is making, makes me laugh!

I'm Popeye the Sailor Girl whoot whoot LOL

31 for 21-day18- People first language

I made the above image for a t-shirt I sold to raise money for Kara's adoption.

Some phrases I hate to hear:

Oh, that was so retarded, what are you a retard? You must ride the short bus huh? Oh no, not another SPED...hey, you're in special ed huh?

People make fun of people all the time. I suppose the above phrases are good for comedy fodder, but I stopped laughing about them a while ago, probably almost 9 years ago, because before then, I just did not think before I opened my mouth. I was not the worse offender out there, but I was not exactly cognizant of the harm my words had on people with cognitive delays.

The difference between the right word and the almost right word
is the difference between lightning and the lightning bug.
Mark Twain

The other day someone I love dearly said, "That is so retarded" and then turned around and apologized to me, saying they knew I did not like that. They do not acknowledge that it is not OK to say this, it is just not OK to say it in front of me. Sometimes I feel like I should just give up, after all, word usage and phraseology are pretty set in most people, but I refuse to stop trying.

I found this website a few years ago and read through it. I worked hard on myself and on the people around me, trying to be more respectful and kinder in our word usage. It is an uphill battle, believe me.

So many times at doctors offices I hear: "She is a Down's child" They say this with Meghan standing right there, as if she has no feelings or thoughts about being desribed that way. I do not think Kara or Amanda think much about it, but in their countries they were described as imbeciles. Or the therapists who say "All Downs children are..." they work with and see kids all day who have Down syndrome, and yet they use that terminology to describe them? I reply, yes, they HAVE Down syndrome, they are NOT Down syndrome. Yet when I see them again, they say it again, picture me beating my head into the wall.

I actually have about 80 of these postcards, I made them for Buddy Walk last year.

You may already get an inkling that I feel professionals who work with my children can be somewhat unkind and also dismissive of parents. NOT all of them are, some are wonderful people who we love dearly.

Still, many of them come across like this http://www.kidstogether.org/perspectives/whenaprofessionalsays.htm , read this web page and come back! :o)

We love our children, and the majority of parents do the best they can for all their children, admittedly our children who have learning delays can be harder to teach simple things, and we can get discouraged when we show them over and over and they still do not get it. To all the parents who do their best for their children, I offer this:

31 for 21 -day 17-can you help?

Raul

Adoption is important to our family, all children need families, from kids in foster care to international orphans. We advocate for special needs adoption because these precious little children are often the ones that get left behind. With hundreds of thousands of orphans with CP, heart conditions, limb differences, cleft lip and palate, spina bifida, all the trisomies, HIV positive, FAS, FAE, autism, the list goes on and on, all of these children are the ones potential parents say they do not want, they want a perfect child, one who has no issues. Well unless you are us or thousands of other families like us. We ask for the kids with a little something extra because we see them as simply children. Children we love and adore.

I got an email today from the Wisconsin chapter of Gift of Adoption, one of their grant families has requested help in placing a wonderful little boy who has CP. Here is his email.

I recently became aware of a 6 yr old boy in an orphanage in Eastern Europe who is in desperate need of a family to give him a home.

The boy's name is Raul. He is 6 years old and has been diagnosed with cerebral palsy. He is about to age out of his orphanage and into an institution for adults and children with handicaps, unless a family comes forward very soon. Not only are the conditions much more harsh at this facility, but his moving there will sadly end his chances for adoption.

I came to know of Raul's story because his sister was adopted about a year and a half ago with the help of a GOA grant. I have stayed in contact with her adoptive mother from time to time, but I just learned earlier this week for the first time about Raul. They have remained in contact with Raul through some people from Bethany Christian Services who are ministering at the orphanage. They are all working feverishly to find a home for Raul before it is too late, but have as yet been unsuccessful.

They describe Raul as someone who could make huge and immediate strides given the care, attention and love of a family. He is sweet, affectionate, happy, aware and interactive. But yet he is just now receiving (limited) therapy that his helping him to walk with assistance and to pick up cheerios with two fingers, and there are many unanswered questions about his long term cognitive capabilities. I am not certain of the degree or level of his CP.

This is obviously not an easy child to place, but I know in my heart that there is a family out there somewhere that can give him what he needs. I also know that Raul has so much to give back to that family; he just needs help in finding that family.

So...I am writing to ask if you might have the time and heart to help spread Raul's story. I feel a real sense of urgency given his condition and his age and would so much appreciate anyone who might help make the critical connection that is required for him to find a family and for a family to find him.

End of email. (edited per request)

I have not included the email address as I was not given permission to, but I can and will send it to whomever asks about Raul privately, I will ask what other information I can share.

I have seen pictures of poorly run institutions, please do not let Raul end up in a place where he will like lose all mobility as he could be tied to a bed all day as so many kids are. I did get two very tiny pictures of Raul, I hope you can see him. Please open you hearts and minds to this little boy, pray for him, spread the word about him.

I know this is not about Down syndrome, but it is about finding a home for a very special little boy, he needs his forever family.

31 for 21-day16-movies they love

I love Fridays, it means we get to spend time with the girls ST, A, except that A was on a mini vacation...so we watched a movie together instead. The Little Mermaid, I love it, but the girls are not all that interested in it. They adore WALL-e and other Pixar movies, but they do not appreciate flat animation at all. I have tired Aladdin, 101 Dalmatians, and Cinderella, they just leave the show on and go off to do something else. They will watch WALL-E over and over again, also love Enchanted, Princess Diaries, etc. Anything with good music, pretty girls, dancing and singing!

I wonder if other families encounter the same?

31 for 21-day15

Photo and video editing at www.OneTrueMedia.com

31 for21-day14

Whoa, almost missed today, we have been pretty busy.

Meghan had a good day in school, which you know is here, but she got most of her answers right in her courses, WTG Meghan!

We all attended Julia's choral concert, she did great, all the young folks did.

Amanda clapped at the concert, she is really moving along in her development, such a wonderful thing to witness.

Kara has been a little grumpy today, she is constipated, may have to do prunes tomorrow for her. I know TMI! LOL

Pictures, and more pictures

Amanda waiving hello, she is feeling really well now, and we are relieved that she can finally feel like herself again.

When mommy gets up, Meghan takes over, I love that she wants to feed Amanda, and I hope Amanda wants to feed herself soon too. LOL

Ah Kara, she painted herself with something stinky, sigh, she and Amanda got a bath after lunch.

Julia got her hair cut in long layers, it looks really cute. She has been fighting a cold, but will not stay home lest she fall behind in school, her AP classes do not allow make-up work, seems completely ridiculous to me.

Just another face Amanda makes, she is so funny, making faces at me and then smiling, she is learning to be more social.

Meghan doing a cheer, she wants me to say it over and over again. Awesome, oh wow, like totally freak me out, I mean right on, Meghan sure is number 1.

Kara being Kara, she was smiling a second before I snapped the picture, happens all the time with her, such a fleeting smile.

Julia, again, we went shopping for a dress for her birthday, I have to say, dresses sure are hideous these days, she could not find one she loved, but she got this plaid shirt, I really like it on her!

Ohhhhhhhhhhhhhhh, will you stop that and feed me already.

Love this picture, I wish the flash did not bleach out her face, but I tried without it, and the pictures did not turn out.

Miss Kara, she has her fingers in her mouth 50% of the time.

Julia again! :o) Can you see how much Meghan is starting to look like her older sister?

My dirty Manda Moo, I cannot get a picture unless she is held still like this. :o) Otherwise all I get is the top or the back of her head.

Cheesy grin!

Brown eyed QT

Lala, as Meghan calls her, she took all of these pictures of herself, she

does really well, when I try to take pictures of myself, all I can see is my double chin!

Amanda's aniridia in full force, if you click on the picture you can enlarge it, What is puzzling to me is the fact that her eyes are not always like this.

31 for 21-day13-Adoption

31 for 21- day 12-take a hike

After breakfast the girls and I walked with Anna, Terry's significant other. We walked through Atterbury Bird and Animal Sanctuary-also called Lower Lincoln Park. Park, it is down the street from us. I thought it would be fun to walk a bit and then take the girls to the upper park to swing and play.

Our walk became a long hike in full sun on a rather warm 84 degree day, I never walked the trails before, so I had no idea how far they went. After pushing the huge stroller up a hill we got a little winded, I am in pretty bad shape, I never thought a small hill would leave me winded, it took Meghan, Anna and I to push it. Meghan got a little fatigued before the walk was over and her behavior declined sharply, ugh; wish she would just say "I am tired". We took Kara out of the stroller and put Meghan in it, Kara would not walk until we held her hands. We had fun, it was pretty dry and lots of the plants were dead or gone, but we saw a plethora of lizards. Thankfully no rattlesnakes or other dangerous critters were around. We went to the upper park and I was a little relieved that the moms and kids were no longer at the playground, sometimes I get weary of the reactions of the children and the sometimes worse reactions from their moms. Meghan said hi to two little girls the other day, they just stared blankly at her. Their mother did the "OK now girls, leave that little girl alone" thing. Sigh. I have to be honest and say that I cannot see why my girls put off parents of typical kids, sometimes I think my girls are prettier, funnier and sweeter than typical kids (and sometimes I don't when they are being stinkers LOL). I fail to see why their appearance is off-putting, they are so beautiful, and why would children look at them like that?

So I tend to avoid parents in public places sometimes, but I do not want to keep the little girls away from other children either. I wish there was a way to get through to people who just cannot see that my girls are just children, like theirs.

Though we are making strides in acceptance, I think we have a ways to go. Down syndrome is feared by expectant parents, seems to be the one thing they dread hearing, “We think your baby may have Down syndrome” puts fear into their hearts, so much fear, 92% of those who receive prenatal diagnosis terminate the pregnancy. I look at my girls, and wonder why in the world other parents deem babies like them unworthy to be in their families. Why do doctors paint such a terrible picture of their future? I cannot understand the bias.

I have yet to see anything on television about Down syndrome that truly speaks of the joys and love they bring to our lives. Everything I have watched stresses the pain and anguish parents feel when they find out their baby has Down syndrome, but says nothing of the everyday lives, pretty ordinary lives really, that our kids have.

There are Buddy Walks everywhere, but are they truly raising awareness? I have to believe if they were, more parents would choose to give birth to their children. The abortion rate is horrific to me, and it seems to speak volumes of the lack of understanding.

I pray that one day the attitudes towards my daughters will change, most days I ignore staring people, some days I smile at all them as my way of saying, “Aren’t I the luckiest mom in the world?” And I am!

31 for 21 day 11

31 for 21 day 10-Down syndrome and therapy

Now I have posted every day, I just forgot to tag the posts, so does it still count? I hope so :o)

Ever have one of those weeks, it was good busy, with a birthday celebration, but also stressful, as we had some issues with a therapist and they were resolved by returning to the previous therapist (her supervisor actually). Therapists mean a lot to our family, but they also need to meld with us and sometimes they clash, as was the case with the one that has been replaced. I hate confrontations, altercations, or any drama in my life, but I guess there is a time and place for it. I am cautiously optimistic that things will get better.

Having a child with Down syndrome is such a wonderful blessing, and it is also challenging, especially when you multiply x3. Sometimes I wish therapists were not part of our lives at all, but then we would never have met some very special ladies, and we do care for most of them. The others we tolerated and finally had to let them go. I should really say I tolerated, because Tom never met some of them.

When we welcome someone into our home to work with our children, we need to trust they have their best interests of our children in mind. The manner in which they speak to, react to, and teach our children is important, now with all three girls here, they tend to “interfere” with the therapist working with a sibling by touching hair, sitting in laps, hugging or otherwise getting in the way. The therapists I respect are those who work around and with my other two girls, those that say, “I am busy, this is not for you, please stop touching me”, or anything similar already lose points with me, and I do keep track, my girls are too important to let these things go. I do what I can to keep the other two busy, but they are curious about what is happening and other therapists allow them to participate, so they think all of them will do the same.

Another pet peeve I have are childless therapists trying to talk about parenting, if you have never been a parent, you can stop talking. I will also say, if you have just one child, you have no idea what it is like to have two, or three, or in my case eight. I suppose the unfortunate therapists have enough of children working with them all day, but it makes me feel conflicted when they say they never want kids, why then do they want to work WITH them?

Additionally, if the therapist only sees the part of my child they are working on, say feeding therapy, but does not consider the WHOLE child, they lose even more points with me. Children, like adults, are multifaceted; you simply cannot ignore everything else to work on one thing. My adopted girls have many issues from being in orphanages, they have trust issues and it is something we try to build up every day, one bad day with a haughty or indifferent therapist sets them back for weeks. We are still bonding with our littlest girls, I will not allow someone with a checklist, and agenda, jeopardize our progress with them. Their emotional health is very important to me. Meghan also cannot tolerate detached therapists, she knows right away if they are not sincere. She can be a stinker with the ones she loves too, she has had too many years of therapy, and admittedly knows all the buttons to push when she chooses to…

Finally, when I feel the therapist is merely collecting a paycheck and does not care for my girls, it is time for them to go. Professionalism to them means remaining aloof and feigning cheerfulness when they work with my children. It is painfully obvious that they have no emotional investment in what they are doing. I do not want people like near my children, however genuine people with kind hearts and caring attitudes are welcome.

Tagged, the name game

Renee tagged all her blog readers in the name game; we have to tell the story of how our children got their names.

It’s funny; we were talking about this at Julia’s birthday dinner Tuesday.

When we were expecting our oldest, I was thinking about names all the time, circumstances led to me being alone during my pregnancy with no one to bounce names off of. So I chose the name Joshua Alan for a boy, and honestly, I cannot even remember the girls name any longer. At the end of my pregnancy, Tom asked if we could name the baby after his best friend if it was a boy. So Joshua left and Frederick Alan entered. Fred after Tom’s best friend, Alan after my brother Jeff, who’s middle name is Alan. When he and his wife had their first son, guess what they named him? Yep, Joshua Alan! Jeff swears he did not remember that we were going to call Fred Josh, lol! Fred was 7 pounds 7 ounces and was born in 1977. He was the beginning of a trend with the #7.

2/12 years later we were expecting again, at the time I was reading a fantasy book by Terry Brooks, I thought Terrance sounded like the perfect name for the baby I was carrying; I played with a lot of middle names and finally came up with Christopher. We considered Emily for a girl. Later my sister had a girl, (she has 9 girls) and she named her Emily. Terry was born on 7-7.

Nearly 3 years later, our third baby was due, looking through the baby names book, I saw the name Eric, I had a very dear friend named Eric, and I asked Tom what he thought, he liked the named Eric too. We both agreed that Michael sounded great as a middle name, so his name was chosen. We were going to name our daughter Rebecca Joy and call her Becky. My brother later named his daughter 2nd daughter Rebecca and we were learned not to share names with family! Eric was born on 2-7.

4 years later we were expecting again, everyone was convinced this baby was a girl, no way could we have 4 sons in a row. We even got little pink dresses for her, but she was a he. At the time of my pregnancy, I worked with 4 Brian’s, and I thought it was a good name, Tom agreed, the middle name, Edward, was after my paternal grandfathers middle name. Brian was going to be Gabrielle Marie if he were a girl, no one else chose that name, because we never told anyone about it! LOL He was born on 7-27

6 years later, we were expecting again, at that point we thought we would have just the 4 boys, we gave all the baby things away, and we had nothing for a baby. The ultrasound showed that this baby was a girl, we celebrated, and Tom remained cautiously optimistic; he would only believe it when she was born. The name Julia kept popping up when I was thinking of names, you should have figured out by now that I chose the kids names and Tom either agreed or disagreed and I searched again. He and I had a very good friend in high school named Julie, but I liked Julia better, at the time Julia Roberts was really popular and her name was everywhere. Her middle name was after my dearest friend, Elizabeth, who I call Becky, not sure why she was called Becky! No boy’s names were picked. Julia arrived on 10-7.

8 years after Julia, we got the news that no, I was not anemic (I was extremely fatigued), I was pregnant, and we were both amazed and pretty happy, hoping for that second girl. The ultrasound showed she was a girl! We were in the same boat as before; absolutely nothing left for a baby, 8 years is a long time between children. I had many vivid dreams when I was expecting Meghan (all of my children actually), many of them a warning of some kind, telling me that something was wrong, and that this child, this daughter, would change the course of our lives. Tom was worried; I had those dreams so often, and often my dreams came true. In one of them, a sweet little cherub told me that my baby girl should be called Meghan. I woke up and told Tom, how does Meghan sound, he said he liked it. We decided on the original spelling of her name, not the way most folks spell it, Megan. At the time I had a good friend who was called Meg on-line (her real name is Linda) and another Heaven Leigh (also an on-line name, she is Laura!) Coincidentally, Meghan is in essence named after both of their on-line names! Meghan Leigh! I am pretty certain that talking to them daily set those names in my subconscious! Meghan was not born on the 7th of the month, but her birth month, day and year, all add up to 7! 12-11-2000

Oh, and those dreams I had, well Meghan did change the course of our lives, but for the better! She was the reason we decided to adopt our last two children!

Naming a child who already has been given a name by someone else is hard. You struggle because they have been called that name for 3 years (or longer). If you followed our adoption journey to Ukraine, you know about the twists and turns, we did not adopt either of the little girls we first set out to bring home, thankfully both are in loving families. When we met little Karina for the first time, we were told, we just had a few days to think of a name for her. I sat down in that little room in Vorzel and wrote out a lot of names; I did not want to call her Karina, Tom was on the fence. I finally wrote out Kara Irina, in essence her name, and I love the name Kara. I showed Tom and he liked it. Karina became Kara Irina. I like her middle name; it says something about where she is from. Kara was born 11-28, but hey, 28 is divisible by 7!

Now everyone knew our Estonian sweetheart by Kristel, but since I am Kristine, I did not want to have two of us here with similar names. I always wanted to name a little girl after my paternal grandmother, Amanda, and I thought, we would keep Kristel as the middle name. Instead of Kristel, she would be Kristelle. We had to choose her name before we left for Ukraine, I believe she was called Amanda in the orphanage in the subsequent months, because she would not look up when we called her Kristel at all, but she did when we called her Amanda. She was Amanda from the moment we met her. Somehow, when they filled out her court records, they dropped the “e” at the end of Kristelle, so she is now Amanda Kristell, we did not want it changed, and it was OK either way. Amanda is like me, nothing with a 7 in her birthday, 3-26; though Tom points out the numbers in 2005 add up to 7!

7 is our lucky family number, even though there are 10 of us now! We had no rhyme or reason in the naming of our children; we went with names that felt right for the baby at the time.

Now it is your turn!

31 for 21 day 8

It has been a long day, so this post will be short.

Tonight I sat on the sofa watching the Duggers, 18 Kids and Counting, I am always amazed that they have so many children, and not one of them has special needs. Michelle is expecting again, she is 45, and I pondered on how their lives would change if she gave birth to a baby with Down syndrome. Now she addressed that question when they talked about skipping all the medical tests they give pregnant women with the sole purpose of ferreting out babies with genetic issues. We skipped them too, we knew regardless of the outcome, we would not terminate, Michelle said they would accept the child God gave them.

Honestly, I wish my family cooperated as much as their does, I think they are a great family. Lucky to have one another, I feel I am lucky to have my family as well. Amanda cuddled into me while I watched the show, and Kara sat beside me, Meghan danced around and laughed as I sang to and tickled her sisters. Julia is fighting a cold, but it was good to have her home spending a quiet evening with me. Tom was teaching guitar classes tonight.

I read a quote on Facebook tonight, it said "You don't know what its liked to be loved, until you've been loved by a child who has Down syndrome" I agree, but I feel the same way about all my children.

I hope everyone had a good day, better than mine, but at least I got to end it cuddling with my extra special girls.

Happy Birthday Julia

17 years ago mom and dad were awaiting your arrival, you stubbornly held on into the evening. One look at you and your dad said, "She is a girl" I guess he did not want to believe it until he saw you with his own eyes! We both could not believe we had a daughter after 4 sons, and we were so happy to welcome you into our family. Now you are 17, how is it possible?

Happy Birthday Julia, we are very proud of you and we love you very much!

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31 for 21 day 6-Christmas Warrior

You know by now that Kara and Amanda joined our family via international adoption. We were one of those families who never thought, not in a million years, that we would ever adopt, nor that we could ever afford to adopt. When I happened upon Reece's Rainbow late one night in the summer of 2006, I was not prepared for the pictures of hundreds of children with Down syndrome nor how seeing them would change my life forever.

At first I just cried, seeing face after face of those precious children in orphanages, children like my Meghan, but with no mommies or daddies, no brothers or sisters, it devastated me. I spent weeks visiting several times a day and weeping and praying over the children. My family thought I was going bonkers, I called them over and showed them the kids, "Just look at this one, oh, and this one, this little girl looks like Meghan, oh and this one looks so skinny, this little boy is so sad". They thoughtfully listened to me, but I could see they thought it was hopeless, how could we help them from here? There were so many, we could never adopt, us? No way, it was expensive, the process was daunting, I read the process over and over and told myself that I could never get through all the paperwork, I did not even own a passport. And there was no way in the world someone would let me, a breast cancer survivor, adopt a child.

After a couple of months telling myself all of this I saw a face of an angel and I just knew I had to be her mother. I got the courage to write to Andrea and ask about little Eve.

This was my email written October 4th, 2006:

Hello Andrea,

I am Kris, mom to 6 kids, my youngest Meghan, has Down syndrome, she is 5 and we are homeschooling her at this time. I saw a post about this list on the Upsndowns list on Yahoogroups.

I am a breast cancer survivor, almost 4 years since diagnosis, I am wonder what the criteria is for parents, would my past illness affect my chances of being considered for adoption?

We would be looking towards adding another daughter.

Kris

That first step was taken without discussing anything with my husband, that's right, I knew in my heart if I were called to adopt, he would soon follow and indeed he did! Of course Eve turned out to be a boy! We chose another little girl, and then another, but both of them went home with different mommies and daddies. Kara was a blind referral, we went to Ukraine, they pulled a file and said "We have this little girl" and we said "oh yes". You can read all about Kara's adoption on her blog, it is linked to this one. We had a crazy adoption ride, but the end was marvelous!

Nine months later Amanda came home, almost two years from when I first found Reece's Rainbow. Amanda's adoption blog is also linked to our family blog.

Our hearts are opened to adoption, I think when that happens, you want to keep adding children because you see the need for them to have parents and you want to parent them. We are happily busy bonding and becoming a family with our two newest additions, maybe someday we will adopt again...

Andrea told me about the Christmas Warrior program, and I decided that instead of thinking of us adopting, we could help another family decide to follow their hearts by providing an adoption grant for one of the waiting children.

Please meet Paula, she is a sweet 3 year old little girl who is awaiting a family. She is in an orphanage in Eastern Europe, and we are her Christmas Warriors. For the next month we will do our best to raise $1,000 (or more) for her adoption grant.

From her profile at Reece's Rainbow:

Girl, Born April 19, 2006
Many folks have been waiting for a beautiful, young Caucasian girl from a country where the cost is lower and the travel is easy.

Here she is! Paula has sandy blond hair and blue eyes. Main diagnosis: Down Syndrome. Inborn Cardiac Malformation - atrioventricular septum defect - cardiac insufficiency - condition after surgical treatment. Lagging behind in her development. Esotrohpia. Hypermetropia. Strabismus - condition after surgery.

What is great is the travel time is so short, that is a plus, and single mothers can adopt her as well.

Her adoption guidelines:
2 trips, 5 days each
Approx cost only $19k!
NO UPPER AGE LIMIT
Single mothers may apply
Multiple children can be adopted together
Full medical info prior to official referral
Easy dossier, very few restrictions

Please join me in prayer for little Paula, that her health stays stable, that a family decides she is their daughter, that we can help that family by raising a sizable grant to make their adoption easier.

I know she looks so sad, it is so much easier to fall in love with a smiling child, our Amanda was a solemn little one too, but oh my, she is livelier every day, she is not the little girl we brought home a year ago. Paula is such a dear little girl with so much potential. Help us help her find her forever family!

As a fundraising tool, I will hold a drawing for 4 free Gold Canyon Candles for anyone who who contributes towards her adoption grant. One candle per week, the drawing held at the end of the 4 week period. Look for the Chip-in on our blog.

31 for 21 day 5

Meghan is a moving target, it is so hard to get a good picture of her. She adores this orange top, I hide it from her because she will wear it every day. The black pants too, she gets stuck on wanting to wear them over and over again.

Meghan's charter school is on fall break this week, no schoolwork! I am hoping to get some work done around here this week.

Amanda is feeling much better from her cold sores, she is eating normally again, but they have a ways to go to heal completely. Her mouth is still too tender to brush as well. Her gums ooze blood if we touch them with a cotton swab, the dentist told us to put Maalox on her gums, but that made a bloody mess, terrible. You can tell she is happy again though.

Kara, she loves this time of the year, it is finally cool enough to be outside a lot, but now too cool for swimming, poor girls miss their daily swim. We though about heating up water on the stove and pouring it in to pool for them, but today it actually feels like fall here. I harbor no delusions about the weather though, it will warm up again, and hotter than any of us like!

Kara has crazy hair, the dermatologist told me that children with Down symdrome have differently shaped hair shafts. instead of oval or round, it is more triangular. I cannot see that with Meghan or Amanda, but Kara's hair gets matted easily, and she sports dreadlocks every morning. She cries when I brush them out, I have tried every sort of conditioner for her, nothing helps. Any ideas?

I love my Barbie Dollies, Meghan tells me this when I tell her I love her! Or she tells me she loves Kara. LOL