MOSAIC MOMENTS

If you heard a loud yell and felt the ground rumble under your feet this morning it was me cheering that this is the last day of September. In my earlier post ‘Wake Me Up When September Ends’ I “vented” about all the things that have happened this past month.

The problem was, when I wrote that September wasn’t over yet!

Since that time, my husband, Glenn changed jobs and then over the weekend he injured his back. Now, he and our son Tim, are stuck at his mother’s house because he can not move and therefore, they can not work!

Then, my sister, the one who has the broken toe from the car accident (she is the one who started this whole mess with the “September Curse”) and the one with ‘no electricity’ from the hurricane, lost her long-time family pet over the weekend. Coco was a cockatiel and very much loved by his family. A neighbor cat came in the house through their pet door and murdered Coco.

Then, while I was taking care of my mom over the weekend, because she has broken ribs and my dad had to go out of town, I tore my hernia while carrying a goat. (yeah…that is a whole other long story) Then, while driving from the back pasture I ran over my dad’s brand new septic pump breaking it into pieces. Needless to say, I left before he got home!

Yesterday, I got a call from the Harris County Jail. It was a collect call, but I took it because although my family tries to stay out of jail….well… you just never know! The call was a scam and the caller said that someone I knew was in the jail and they had left my number as an emergency contact number. They instructed me to dial this other number to find out who was in jail. They instructed me to dial *721 before the call. This would have opened up the caller to make charges on my phone. Apparently, this scam is running wild in our area. However, it is strange because we are three hours north of that facility. So, with that came police reports, telephone reports, harrasement reports and I still have to finish those calls today! ***Note: if you get one of those calls, call your local police and let them know.

Finally, my wonderful, innocent, loving, caring, son, Garrett, was abducted by aliens and replaced with a hormone-raging, not-doing-his-class-work, when-do-we-eat-next, football, girls and socializing is way more important, king-of-the-texters, I-know-more-than-you-mom, OH-MY-GOSH-BECKY!,rolling-the-eyes, SEVENTH GRADER!

If someone is near Area 51 can you please ask them to return my son? I really do miss him!

So, I am thrilled that today is the last day of September! October has bound to be better! And, it will be! Because October is Down Syndrome Awareness Month!

I am blogging for 31 for 21. For the month of October I will feature a different story each day about an individual with mosaic Down syndrome or Down syndrome. You will get a glimpse into these people’s lives and learn about what they do, what they like, what they don’t like, what their ambitions are and how their families are doing with this diagnosis. Hopefully along the way we will be able to spread awareness of both forms of Down syndrome and touch some people’s lives who think that this diagnosis is the end of the world. Because when you have a child with Down syndrome, no matter what form, you know that is it not the end of the world, but just a new beginning on a wonderful journey!

Please send me your stories! I would love to feature your story this month!

With school in session now for the past several weeks, more than likely your child has become accustomed to the new surroundings and new people and hopefully they are having a great time and making new friends!

However, when your child has special needs, sometimes this isn’t as easy as it sounds and a lot of times your child is the victim of bullying.

A couple of years ago, I did extensive research in bullying in schools and wrote an article pertaining to this for Exceptional Parent Magazine.

One of the sites that I found most helpful in my research was Stop Bullying Now.  Stan Davis, the author of School’s Where Everyone Belongs has devoted a lot of time and energy into helping children in schools understand and prevent bullying in their schools. This is a fantastic site with loads of information on bullying and how to help your child. It also includes information on when a teacher bullies your child.

According to the National Youth Violence Prevention Resource Center, Almost 30% of youth in the United States (or over 5.7 million) are estimated to be involved in bullying as either a bully, a target of bullying, or both. In a recent national survey of students in grades 6-10, 13% reported bullying others, 11% reported being the target of bullies, and another 6% said that they bullied others and were bullied themselves.

Another great site is from PACER. Pacer Kids Against Bullying is especially made for kids to help them understand what bullying is and how to fight it at school. This is especially made for kids with special needs and those who have children with special needs in their school. It is a very interactive site and has lots of fun things for the kids to do.

The one thing I have learned in all my research is that there is NEVER an excuse for bullying. Not by another child and not by an adult either. If your child comes home upset for any reason, it is important to find out what happened and to speak with the teacher and school staff immediately, so whatever has happened is stopped before it gets out of hand.

Please be sure to visit the websites I have included in this article. They will empower you with lots of information to help your child be successful and keep their self-esteem at the highest level. With high self-esteem your child will succeed throughout their childhood and into their adult life!

On Sept. 25 the Prenatally and Postnatally Diagnosed Conditions Awareness Act was approved by the House and is now on its way to President Bush for signature to make this a law.

There has been a lot of confusion among families on what this bill is meant to do, so I thought it would be helpful to break the bill down and explain it in simple terms, so everyone can understand it better.

You can read this bill in legal terms from here. I will divide these legal terms into sections so you can understand exactly what all of this means.

Prenatally and Postnatally Diagnosed Conditions Awareness Act - (Sec. 3) Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions.

This bill was made as an amendment to the Public Health Service Act with the intention to make medical professionals provide accurate, current information on Down syndrome and other genetic diagnosis when a parent has a prenatal or postnatal (up to 12 months) diagnosis for their baby. Currently, information given to these parents is extremely outdated and inaccurate according to current research and services that are available to families today. In addition, the medical professionals must provide information for support services to these families, so they will know they are not alone in raising their child and will have the opportunity to speak with families who are experiencing these same diagnosis. The secretary will oversee this operation to ensure that everyone is doing what is indicated in this bill.

Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions.

What this means is the government will help financially and otherwise to gain this information on these conditions to provide to families and will help the Disability Advocacy Groups to provide services to these families.

Includes within such supportive services:

(1) the establishment of a resource telephone hotline;

(2) the expansion of the National Dissemination Center for Children with Disabilities;

(3) the expansion of national and local peer-support programs;

(4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and

(5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.

I think all of those five areas are pretty self explanatory. We are very excited about these avenues because it will help organizations such as IMDSA  to further our information and support to families throughout the country. Number five is exceptionally good because health care professionals will not have the excuse of “the information wasn’t available to me”.

Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.

What this means is that the available funds will now be encouraged to be distributed to nonprofit disability advocacy organizations as well as health care professionals. What is cool about this is finally someone said, “the parent is the expert” and these organizations will be working side by side more often with the health care professionals and researchers.

Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes;

What this means is when you are receiving funds to do research, you need to provide that information to health care providers who are treating or are in contact with parents who receive a diagnosis during pregnancy or up to 12 months after birth. And, again, the health care providers will not have an excuse of not knowing the accurate information.

(2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.

This is part two of what the person or group receiving the grant has to provide. Also, the support information has to be approved by the Secretary of Health and Human Services to ensure that it meets the needs of anyone regardless of culture or language.

Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.

This part just makes good sense. Everyone will be held accountable and everyone will be expected to provide this information to these families. Then, the GAO will report back to congress and let them know how this is all working out.

This bill was first introduced by Sen. Sam Brownback (KS) and a few months later Sen. Edward Kennedy (MA) joined in as a co-sponsor. Other Co-sponsors of this bill are, Sen. Byron Dorgan (ND), Sen Jospeh Lieberman (CT), Sen. Ted Stevens (AK), Sen. John McCain (AZ), and Sen. John Thune (SD)

This was passed unanimously in the Senate, so everyone there is to be congratulated and thanked tremendously!

It was passed through the Senate on Sep. 23 and two days later it passed through the House. Now, it is on to the president for signature and then we can get started in making a difference for all of these families!

The main reason why this bill has had to happen is because the American College of Obstetricians and Gynecologists made a new rule to push for every single mother to have genetic testing in her first trimester of pregnancy. (previously this was only done on mothers over the age of 35) The reason they made this recommendation was because they realized that the majority of children born with Down syndrome were to mothers under the age of 35. So, with the recommendation, came the push to abort all babies born with Down syndrome and other genetic conditions. In the midst of all of this, the abortion rate for babies with Down syndrome climbed rapidly to 90%. The reason for this is because the doctors refused to provide accurate, current information to the families and they did not provide any information on support services. (I would like to note that not all doctors do this, however, the majority of them do. There are some wonderful doctors out there, it is just a matter of finding them. When you do, hold tight because they are made of gold!)

With this in place as a law, families will have accurate information and access to support and a national registry of families interested in adoption of children with genetic disorders. (Currently there is a two year waiting list to adopt a child with Down syndrome). This will enable families to make informed decisions when faced with a prenatal or postnatal diagnosis.

It is scary when you are facing the unknown about your child. But hopefully with this law in place, families will know they are not alone on this journey and there is plenty of support and information out there just waiting for them to have access to!

One of our members shared a story with us about her grandson who has mosaic Down syndrome. For the first two years of Preschool he happily went on his bus for the ride to school. Then, in Kindergarten and now, First Grade, every single day the bus came he would cry and have to be dragged on to the bus. He was clearly upset, but much to their dismay by the time he arrived at school he was fine for the rest of the day!

This past week, the bus came a different route and arrived at his house coming from the North instead of the South. For the first two years of preschool this was the route the bus took, but it was in Kindergarten that they decided to change their route. Upon seeing the bus come from the North, the little boy happily took his mom’s hand and walked up to get on his bus without a problem. Wondering if all this fuss the past two years, was all because of the change, the mother asked the bus driver if they could come from the North the next day.

The next morning, while getting ready for school, the little boy was fussing about getting ready. His mom told him that the bus would be coming the “right way” and he immediately stopped fussing and began getting ready for school. For the remainder of the week, the bus has come from the North and the boy has happily gotten on!

Something that we see as no big deal can be a very big deal to a child. And, when the child has communication delays and sensory issues, this just heightens the stress.

Tim has always been very strict about schedules and knowing what is going to happen next. He is not a spontaneous person and does not like surprises. Over the years, my entire family and I have just programed ourselves to always tell Tim about what is planned and what is going to happen in as much advance time as possible. For us, it is just a natural part of our lives and we really do not think anything of it. However, if something comes up where we have to change our schedule abruptly, I can not just say “Lets Go!”. Just recently this happened and the look of fear came over his face immediately. Luckily, Tim does not have a communication problem, like this little boy in the story is experiencing. Tim was able to voice his concerns and tell me how he felt about the abrupt change. We talked it out and I told him that I realized this was not on the schedule, but sometimes things come up and we do have to change our plans. I gave him a few minutes on his own to rationalize the change, and then he was fine.

It is very important to talk with your children, even if they have trouble communicating back to you, about what is about to happen and if any changes are to be expected. When Tim was very young, I would give him “count down warnings” before we changed to something else. I would say, “In 10 minutes we have to put the toys away so we can eat lunch” then I would tell him again in 5 minutes, 4 minutes, 3 minutes, 2 minutes, and then 1 minute. This allowed him to prepare for the change without abruptly being pulled away from his fun. I also encouraged all of his teachers to do this as well, and when they did, they never had a problem with him.

Too often, I see parents tell their children without warning that they are leaving the park or other fun place they are at. Immediately, the child breaks down into tears and usually throws themselves on the ground kicking and screaming. The parent is frustrated and starts yelling, or gives in and stays-both are bad examples for the child. However, if the parent gave their child a warning and let them know that they were about to leave, the child would have time to prepare for that change and everyone would be a lot happier in the long run.

I think many parents forget to talk directly to their children, especially when they have a communication delay. It is important to remember that even if your child can not communicate back to you, they still can understand what you say and if you give them the opportunity to transition before a change, things will be much easier on you and the child.

However, if you can stop any abrupt changes, like which way the bus comes to pick up your child, do whatever you can to make sure those kinds of changes don’t happen, so your child feels safe in his/her routine and everyone is a little happier.

There is a song that Tim sings over and over that he has in his IPod called Wake me up when September Ends. He drives me crazy with this song, but as September has dragged on, I have to agree that we should have all just slept through the whole month!

My September has been a trying one beginning with my sister, Lisa having a bad wreck on the Monday of the first week in September, which resulted in a badly broken toe, to my son, Arron having a worse wreck at the end of that week which resulted in a concussion and amnesia.

There is a superstition that bad things happen in threes. I am not superstitious, but I found myself holding my breath waiting for the third thing to happen.

Then, we were hit with Hurricane Ike. For us, it was in inconvenience. We just lost a few limbs and lost our power for a week. For others, including a lot of my family and friends, it was a little more than an inconvenience. Tim, of course, was lost without his electronics, but we all somehow survived.

However, I somehow knew that Hurricane Ike was not our “third thing” to happen.

In the midst of our power outage, my brother-in-law who suffers from emphysema, was rushed by ambulance to the hospital because he was having trouble breathing in the middle of the night. Perhaps this was our “third thing”?

But no…. or maybe it was and we are moving on to another set of three!

Last week, my mom decided to be John Wayne and she was riding her new horse. My mom has not ridden a horse for years, and in my opinion she is a bit too old to start back on such a hobby. However, this is not something you could tell her to her face, so up she was on this new horse! Tim was visiting and helping my dad build a fence. (this is his new past time and before we know it we will have fences on every inch of this property) During the fence building and horse ridding one of the “fence builders” dropped a board. The noise startled the horse - the horse ran - my mom fell off the horse.

Needless to say, Tim I think was terrified at the thought of his grandmother being hurt. He is a very caring soul and always takes such good care of me whenever my back is out (I have scoliosis, so this happens every so often). He did well though in the midst of the emergency and took great care of her.

The results were my mom has broken three ribs and has various bruises and cuts. I am taking care of her this weekend while my dad has had to go out of town.

However, September is not over! And, I have to wonder if we have begun a new set of three or if we are finished with all of it for good!

The good things that have happened for September is that the Prenatal Diagnosis Act not only passed in the Senate, but yesterday passed through the House! Now, all we need is President Bush to sign it and we are on our way!

You know, I do find it kind of sad to think that we have to have a bill to make doctors do what they should be doing anyway. All we asked was for them to provide accurate information and support to families who are prenatally diagnosed. To me, that is just good sense, but at least now they will have to do this and this time next year I will be very interested in looking at the numbers of abortion for Down syndrome and other disorders. Hopefully the number will go down and those who feel as though they can not raise a child with Down syndrome will have the strength to give the child up for adoption. Maybe the two year waiting list for adoption of a child with Down syndrome will go down!

My good friend, Judie reminded me that although September has been “Kristy Krap Month” (her words) October is Down syndrome Awareness Month! We are very excited about the upcoming month! I will be featuring stories from families who have children with mosaic Down syndrome and Down syndrome (if you haven’t written me already, please do! I want your story!) and we are raising money for research for mosaic Down syndrome throughout the month of October. (you can contact me if you have more questions about that)

So…Wake Me Up When September Ends….

On Tuesday many celebrated with the news that the Kennedy-Brownback Prenatally Diagnosed Act passed in the Senate. The vote was unanimous.

Sen. Sam Brownback Kansas (R) told LifeNews.com,“This bill will greatly benefit expecting parents who receive the sometimes overwhelming news that their unborn child may be born with a disability,” he said. “This legislation will provide parents with current and reliable information about the many options available for caring for children with disabilities.”

The bill is meant to provide up-to-date and accurate information to families who are prenatally diagnosed with Down syndrome, Spina Bifida, Cystic Fibrosis, or dwarfism. Additionally, it provides a clearinghouse of information and support to those families who have been prenatally diagnosed or their child up to one year of age has been diagnosed.

This is one small step, as now it must pass through the House of Representatives. (I find myself singing that old School House Rock song… “I’m Just a Bill“)

IMDSA is one of the supporting organizations on this act and we applaud all of those who have made this happen. This is a great step towards making a difference in so many lives and that is what is important–making a difference. We have made our calls and are hoping that the House of Representatives leaders will not hold this bill up. Time is of the essence here, as we are hoping to have this act in place before President Bush leaves office.

Now, For the Bad News….

I receive Google Alerts on the keyword Down syndrome and mosaic Down syndrome. Sometimes I will receive more than one article in an alert. Yesterday I received many Google Alerts. In most of them, there were two articles, each with the same topics.

The first, the Great news about the Prenatal Diagnosis Act being passed in the Senate.

The next, Sequenom’s excitement of being one step further to wiping out those with Down syndrome. They are excited because they are getting closer to having their test “perfected”. The following is from the Sequenom press release:

The Company expects to continue its current development activities through the end of 2008, at which time the Company will initiate a multi-site 3,000 to 5,000-sample laboratory developed test (LDT) validation study, which is expected to be completed and submitted for publication at the time of the anticipated commercial launch in June 2009. To facilitate the LDT validation study, Sequenom also indicated that the company will be collaborating with new clinical partners who perform in excess of 12,000 amniocenteses and 3,000 CVS per year. In addition, Sequenom announced sponsorship of the RNA Noninvasive Aneuploidies (”RNA”) study, a landmark, multi-center, prospective study involving up to 10,000 samples from first and second trimester pregnancies using the SEQureDx technology, managed and analyzed by an independent third-party. During the Analyst Briefing, management also highlighted key upcoming milestones for the prenatal diagnostics business, including:

– Confirm 10-week or earlier gestational age testing   

– Evaluate integration of T18 (Edward’s syndrome) assay into the first generation test

– Initiate T21 LDT clinical validation study evaluating 3,000 to 5,000 samples

– Complete T21 testing of up to 800 additional high prevalence specimens by year-end 2008

– Initiate “RNA” multi-center study involving 10,000 high prevalence patient samples

 – Submission of key data for publication

 – Commercial launch of T21 test in first half of 2009

To read the entire press release, click here.

Make no mistake about this information. This is eugenics. And, looking at the numbers, it is quite scary. The reason they want to “Confirm 10-week or earlier gestational age testing” because the earlier they can detect, the earlier they can abort. When they say they want to “evaluate 3000-5000 ’samples’” those ’samples’ are babies before they are born. They want to “complete up to 800 ’specimens’ before year-end of 2008″ What this means? In the next three months they hope to identify and alleviate 800 babies with Down syndrome and other genetic ‘defects’. And the RNA? Together they want to study 10,000 babies in the first and second trimester.

So, while we are thrilled with the passing of the Prenatal Diagnosis Act in the Senate, Sequenom has a deaf ear on all of this and are working hard to wipe out Down syndrome. Hopefully, this act will slow down Sequenom and their intentions.

On Monday, I received my copy of HELPING CHILDREN WITH DOWN SYNDROME COMMUNICATE BETTER-Speech and Language Skills for Ages 6-14 by Dr. Libby Kumin.

Woodbine House Publishing is one of the best publishing companies I have ever come across for publishing books to help those who know someone with a disability. They work hard in bringing their audience the best of the best and they have, without a doubt, done it again with Dr. Kumin’s new book!

In Dr. Kumin’s opening statement in her book she writes, “Life is a journey. When I started working with infants and toddlers with Down syndrome and their families, my life changed for the better. This is my fifth publication with Woodbine House, beginning with the original 1994 book titled Communication Skills in Children with Down Syndrome.

I have learned so much and I have had the privilege of sharing my knowledge and experience with many families through books, conferences and consultations. As your children grew, so did my quest for information, theories, and practical day-to-day suggestions that could also help older children, adolescents, and adults with Down syndrome and their families. I have seen many positive changes in the quality of life for people with Down syndrome and knowing that I have been a part of making those changes happen is deeply satisfying.”

Dr. Libby Kumin came to IMDSA back in 2004 when we held our first conference in Richmond, VA. Being our first conference, our main goal was to connect these families of children with mosaic Down syndrome together for the first time. This was a history making event, as most families had never had the opportunity to meet another family with mosaic Down syndrome. However, our other agenda was to increase research, so we could increase our knowledge on MDS. Hearing about our unique conference, Dr. Libby Kumin contacted us and wanted to do research for MDS as well. With Speech and Language always being on the forefront of our minds for our young children, we were thrilled to have her aboard!

Since that time, Dr. Kumin has joined our Advisory Board and has been a great help to IMDSA and our families to understand our speech and language needs.

This new book is a practical, easy to understand guide to speech and language for those with Down syndrome. She provides very helpful tips and helps you to understand what to do to help your child with Speech, Language and Communication.

I also have to mention that on page 226 is a wonderful picture of our kids! This was at our 2004 conference and it amazes me to see how much all of them have grown, but especially Garrett, Jabob and Rachel. Four years can make a huge difference in those early years of development, especially when you have crazy growth spurts like my Garrett does!

click to enlarge
From Left to Right
Garrett Colvin, Mark Kaye, Jacob and Rachel Benoit, Katie Van Gronigen, Tim Colvin

Six years ago, Yvonne Pierre joined our family when she had her beautiful little boy Zyon. Yvonne embraced her blessings and used her special gifts to give back to the world in a very special way. She began a website called Have You Heard? to promote others with Down syndrome and let everyone know that having Down syndrome is not a bad thing–just a different thing!